10/20/2015
After my transplant I was on a high. I was high for life, for living life and enjoying every moment it had to offer, but in that process, I lost something very dear to me. I lost Chris. We had been together for 15 years and 9 months and I thought things were fine. Sure, I could see that some things were different, we were growing apart some, the sex life was becoming non existent, we didn't talk as much, we were starting to live separate lives, but I thought we were indestructible. That what I get for thinking we were secure in our relationship. Going through recovery from something like chemo and a stem cell transplant transforms someone, you become more passionate about the life you have been given a second chance on. When I was sick, I was in a deep state of depression. I did not want to be here in this earth, I prayed for death. I am very independent and do not like having someone take care of me physically. I had shut out a lot of my friends because I never had the energy to get out and do stuff, the friends I distanced myself from just didn't seem to understand what I was going through. That was partly my fault because I always had a poker face on and never really wanted to talk about the negative things afterall, positive thoughts equal positive results, right? Well, not always, but those friends also brought negativity to my life which I could not deal with at the time. Remarks about my weight, about me not coming to hang out with them, I just need to get up and exercise etc. They did not understand that exercise caused even more weakness and fatigue. I changed my diet to a raw food vegan diet and that helped tremendously because it gave me more energy, but in the process I lost weight, a LOT of weight and I got reprimanded for that because supposedly I needed to be healthy and at a healthy weight to prepare myself for chemo. What they didn't understand is that I was at my healthiest at that moment because I was eating whole foods packed full of nutrients. Over time, I got over all of the comments, but I haven't forgotten them. When I went for my transplant I was lonely during the times I was in the hospital alone and there were moments I asked myself what the hell I thought I was doing. Did I make the right decision? Chemo really does take a toll on your body, all the chemo, steroids and other drugs they give you in the hospital just puts your mind in a different place and I was still depressed. Once I was released from the hospital after my transplant I was weaker than ever before. My walking was bad enough before HSCT and after HSCT I could barely hold myself up with my own two legs. I coudlnt step up on a curb without falling right to the ground. I couldn't walk too far because my legs would get too fatigued and I would trip and fall to the ground. It was a struggle and I often wondered if the transplant even worked. I shut myself up in the house and only got out for doctor appointments and blood draws. After a couple of weeks of being home I landed right back in the hospital with a fever of 103 and they decided to admit me. My thoughts were racing, "Here we go again" being isolated in a hospital room all by myself. Chris would come visit me in the evenings for a couple of hours, but I was still lonely. I remember crying when they told me they were going to admit me because the last thing I wanted was to be locked up in the hospital again. After four days I was released and they never found out what had caused my fever, but they got it under control, I had more blood transfusions and no telling what other drugs I was given. I felt like a human pin cushion. Once released, I shut myself up in the house again to stay away from anything that could get me sick. My life was a living hell.
Finally after being home for 6 weeks I started physical therapy, I knew if I didn't start going, I would definitely never get better. It helped, it took a little time to finally get there, but I was getting stronger each day and I saw my symptoms going away and my strength coming back and 4 months post transplant I felt good enough to go back to work so, of course I'm going to be on top of the world. I was getting back into society and living again, I just don't think I handled it well because then Chris felt like I was leaving him behind and didn't need him anymore. What he didn't understand is that I was finding happiness again. Happiness within myself and with life. I was HAPPY TO BE ALIVE. I would pray daily thanking God for not listening to be about taking me. I was so thankful to be a part of this trial/study and the fact that it worked for me. I put my whole heart and soul into helping others who were struggling with their disease and/or recovery. I was chatting with numerous people about HSCT and spreading the word. Chris could have made himself a part of it, but he chose not to. Selfish maybe? I don't know. Maybe he learned that he didn't need me anymore, maybe he turned his thoughts about himself around on me to place blame for the demise of our relationship. I recently was told by a lady I met in Chicago recently that the world is constantly evolving and we either change and evolve with it or we get stuck. My opinion is that I evolved and Chris got stuck and while being stuck in his own personal hell, he realized he wasn't happy. Sure, I could have gave him more attention, but I had to learn the hard way in our relationship that the more attention I gave him, the more he backed off and pushed me away so, I was stuck on how to handle this. I thought, "If Chris wants to spend time with me he will just say so, I cant read his mind." He never really knew how to communicate with me, he was always passive aggressive and through the years I forgot how to communicate with him. I've always had this tough girl attitude about me and I think it was a way to protect myself. In the meantime, I was destroying my relationship with him. I realized though that while going through something like this and going through the recovery part there are stages that we have to experience. I knew that eventually I would slow down again and not be on the go so much, but I wasn't ready to slow down yet. I had a message to send to people. I wanted everyone to know that no matter what life throws at you, things WILL get better. Well, I am now having to learn that all over again.
August 9, 2015 Chris decided to tell me that I needed to move out because it just wasn't working for him anymore. No other communication before that. He always seemed like he was fine. I guess I was too blind to see the signs. I was devastated and blind sided and thought my life had just been ripped out form underneath me yet once again. How do I survive this? I invested almost 16 years of my life in him. I told myself after my transplant that no matter what, I would never leave him, that we could get through anything and that I wanted to be there for him if he ever got sick. I wanted to devote the rest of my life taking care of him. I had made plans to spend my commission checks on fixing up the house and getting it to the state that would make us happy and proud of living there. I had already started some of the work by ripping up the carpet. I planned to stain the concrete, redo the cabinets, repair the damages outside, treat the termites, whatever the house needed, I wanted to be the one to do it, to show him how much I appreciated what he had done for me. Well, I found out that he had fallen out of love with me months ago prior to telling me to move. Even after talking to him, he made a comment about feeling that way in October, but I remember that I was still at home quite a bit and constantly telling him how much I loved him and appreciated him, but apparently that wasn't good enough. It makes me think that it really wasn't all about me not making him happy. He was notorious about keeping score on things he did for me, but forgetting about the things I have done for him. I remember so many times offering to do things for him and he wouldn't let me. I guess he too was very independent. He didn't want to have to take care of me and did not want me taking care of him. I remember a few years ago he had complained about how his mom couldn't do anything for herself and was so dependent on his step dad to do everything for her. Change the oil in the car, wash the car for her, change the tire on the car if it needed it and he said he refuses to do that for anyone because a woman needs to learn to be able to take care of herself. My mentality is different. I know how to change a tire, I don't mind washing my own car and I have always been responsible for taking my car in to get the oil changed, but once in awhile it would be nice to see your man do it for you to show you he cares and that he's looking out for you and in return, I would do that same for him. When I would offer to wash his car he refused to let me do it. I was able to sneak it in on occasion, but his thought was "Now she's going to expect me to do something for her." Wow, what happened to just doing something nice for someone because you wanted to? When we would go visit his family, he would jump up at the drop of a pin to help his mother or sister with anything they needed, but I was a different story. I always admired how much he cared for them, but all I wanted in return was the same respect and love he gave them. All I got was the bag of negativity and resentment. Since we split, he has been telling his mom all kinds of hateful things about me and I found out recently that he had been talking to some girl, a mutual friend of ours, for he last last few months, since before we split up. I also found out that he had feelings for this girl. Now, how do I process that kind of crap? I know that time heals all wounds, but this is someone I completely trusted, 100% with my heart. He was not one to cheat and rarely one to lie. He may have kept things form me, but once confronted he always came forth with the truth. To top it off, after the split up, we were still seeing each other. Not in a relationship, but it was still intimate and we would still tell each other that we loved each other and when I wasn't around he was texting and calling her. This was NOT like him. Is he going through a midlife crisis? I believe he is. He needs to find himself and I need to heal. I have been going to therapy and finding out where my underlying issues come from, which a learned they mostly come from my childhood and my relationship with my parents. Things that I thought I had let go of were still harbored deep within me and I didn't realize it. My issues can be fixed and dealt with, I'm becoming a better person because of it by facing it head on. When I sit back and reflect on the last 16 year of my life with Chris, I realize that we were never really completely happy with one another. I just learned to accept it for what it was and for once in my life I learned to love unconditionally and now realized that I became what Chris wanted and I guess he learned that what he thought he wanted, he really didn't. I had to learn to compromise so much of the time with him, most things always had to be his way, what he wanted and I had to just deal with it and accept it. He always preached "double standards." What I learned is that he did not practice what he preached. If I felt something, I talked about it. If I was hurt, I told him, if I was depressed, I told him. If I was unhappy with my life or with him, I told him. He always knew where he stood with me, but I never got that same respect from him. If something was bothering him, I didn't know about it until something was bothering me. I fought hard for this relationship and now feel like it was just a waste of my time. Even after him telling me to move out I tried to fight for this relationship and be a better person and give him what he wanted, all the time while he is talking to some other girl telling her he has feelings for her. I feel like such a fool. I sacrificed so much of who I was while I was with him. Many times I felt like he hindered me in my journey, but I didn't care because thats how much I loved him. Hearing about Carey just ripped my heart out. He always preached being honest and loyal and yet here he was doing the opposite. I saw red, I went into psycho mode and the ugliness in me came out full force and we got into a knock down, drag out brawl. Needless to say, that ruined any chance of us ever being friends again or ever speaking or talking to one another. I learned that night that we were toxic for each other. He was so afraid of being controlled, yet he controlled me in his passive ways. I would ask him to spend time with me and put his phone down or get off his video games and he would get mad at me and tell me that it had to be on my terms and my conditions yet, he had no qualm telling me to put my phone down and spend time with him, which I did, unless I was working and chatting with a client. I often wonder what he would do if he was with someone who was married to their job. He couldn't handle it. He was not driven or goal oriented and couldn't stand it when I was. He had no motivation, no drive, no passion in anything and always put me down when he saw me being passionate about something. In his own little ways, he would belittle me and tell me that I was controlling and I think now that was his of trying to control me. How did I lose myself in this relationship? How and why did I let it happen? I knew that we should have split ways years ago, but I kept holding because I didn't want another failed relationship when the whole time, I should have walked away after the first year and gave myself the chance to meet the one who really was right for me. I know we learn something from everything we experience and there is a reason for everything that happens so, with that said, I dont regret my relationship with him. I did learn to be a little ore patient and more caring, more calm and compassionate, but I do think that I wasted my time. Call that a contradiction or whatever you want to call it, but thats how I feel, it's my feelings and I own them. Now, I sit here and think "I'm 46 years old, where do I go from here?" I know that God has a plan for me and there are better things waiting for me. I just need to learn from it and be patient. God removes people form our lives, not because of something we did, but because they have served their purpose and if they stay, they will hinder us. Each day gets better and easier, but it's still hard to understand where my journey will take me now.
Tuesday, October 20, 2015
Saturday, September 19, 2015
9/19/2015
Wow, today I had an experience of a lifetime. I flew a plane. I FLEW A PLANE and it was amazing.
I went to visit my friend Mark in Pleasanton TX. and his friend Clint came over to visit. Clint has his pilots license and is an instructor. He was talking about having to get up this morning for a flight lesson and I mentioned that it would be awesome to be able to fly. He invited me to come join him and he would take me up in the air and let me fly the plane. I got very little sleep that night and woke up this morning, bright and early, ready to go with the biggest smile on my face. He called me promptly at 10:30am and told me to come on over to the airport. Luckily, it was just around the corner from where I was staying, I was there in 5 minutes and I got to go up while he was instructing his student, but then afterwards he took me up, just the two of us, so I could sit in the pilots seat and see everything from his view and be able to control the steering myself. This has inspired me to want to take flying lessons now. This has become one of the items on my bucket list. I had a permanent grin on my face the rest of the day and I feel on top of the world. Of course, this could not have happened without going through a loss in my life.
Since recovering from my stem cell transplant I learned to have a new passion for life. I find happiness in everything, the good and the bad. I have taken on the world in full force because I know what it feels like to lose who I am and then regain it back. The loss I recently experience was that of Chris leaving me after almost 16 years together. He blindsided me, gave me no warning, no discussion in advance, no hint that he was unhappy. I dont get it, he was ok with me always being on the go before I got sick. It gave him the chance to do the things he wanted to do without having me nagging at him. I get sick and he saw that I needed him and he liked it. He liked being my caretaker, but once I got better, he no longer wanted to be a caretaker and he wanted me to be independent again and once I was completely independent, he realized he no longer liked that. He thought I no longer needed him. I didn't need him, but I alway's wanted him, which in my eyes is more important than needing someone because it shows that the person is in your life by choice. This all happened on August 9, 2015. Just a little over a month later and I am realizing he did me a favor. Although he did allow me a lot of freedom, he also hindered me from really experiencing other things in life. He always kept score, he always had negativity about everything I did. Had Chris and I not split up, I wouldn't have went to visit my friend Mark and then wouldn't have had the chance to meet Clint and fly that plane so, thank you Chris for making my life better without you.
In hindsight, looking back on the last 16 years, I see how he really treated me and held me back. I see even more, how negative he really was. I don't know why I held on for as long as I did. I loved him and I held on to that love and the hope that we might eventually figure this out and how to have a meaningful relationship with each other, but for some reason we just couldn't.
Wow, today I had an experience of a lifetime. I flew a plane. I FLEW A PLANE and it was amazing.
I went to visit my friend Mark in Pleasanton TX. and his friend Clint came over to visit. Clint has his pilots license and is an instructor. He was talking about having to get up this morning for a flight lesson and I mentioned that it would be awesome to be able to fly. He invited me to come join him and he would take me up in the air and let me fly the plane. I got very little sleep that night and woke up this morning, bright and early, ready to go with the biggest smile on my face. He called me promptly at 10:30am and told me to come on over to the airport. Luckily, it was just around the corner from where I was staying, I was there in 5 minutes and I got to go up while he was instructing his student, but then afterwards he took me up, just the two of us, so I could sit in the pilots seat and see everything from his view and be able to control the steering myself. This has inspired me to want to take flying lessons now. This has become one of the items on my bucket list. I had a permanent grin on my face the rest of the day and I feel on top of the world. Of course, this could not have happened without going through a loss in my life.
Since recovering from my stem cell transplant I learned to have a new passion for life. I find happiness in everything, the good and the bad. I have taken on the world in full force because I know what it feels like to lose who I am and then regain it back. The loss I recently experience was that of Chris leaving me after almost 16 years together. He blindsided me, gave me no warning, no discussion in advance, no hint that he was unhappy. I dont get it, he was ok with me always being on the go before I got sick. It gave him the chance to do the things he wanted to do without having me nagging at him. I get sick and he saw that I needed him and he liked it. He liked being my caretaker, but once I got better, he no longer wanted to be a caretaker and he wanted me to be independent again and once I was completely independent, he realized he no longer liked that. He thought I no longer needed him. I didn't need him, but I alway's wanted him, which in my eyes is more important than needing someone because it shows that the person is in your life by choice. This all happened on August 9, 2015. Just a little over a month later and I am realizing he did me a favor. Although he did allow me a lot of freedom, he also hindered me from really experiencing other things in life. He always kept score, he always had negativity about everything I did. Had Chris and I not split up, I wouldn't have went to visit my friend Mark and then wouldn't have had the chance to meet Clint and fly that plane so, thank you Chris for making my life better without you.
In hindsight, looking back on the last 16 years, I see how he really treated me and held me back. I see even more, how negative he really was. I don't know why I held on for as long as I did. I loved him and I held on to that love and the hope that we might eventually figure this out and how to have a meaningful relationship with each other, but for some reason we just couldn't.
Wednesday, March 4, 2015
Happy 1 Year Bday to me!!!!
What a year...
HAPPY BIRTHDAY TO ME!!!
MARCH 5, 2015 - I cannot believe, with everything I went through, that I have reached my 1 year post transplant birthday and WOW, what a year it has been. From the moment I first showed signs of my disease to this day, it was one heck of a ride. Some of the moments I would love to go back and relive, other moments I wish never existed and would be erased from my memory, but everything from this last year I cherish and hold close to my heart. Last year on this date I received my stem cells back, they call it your new birthday because that is the moment you get a brand new immune system. My new immune system has not let me down and it seems to be just as strong as it was before I ever got CIDP.
So, where do I start? I have already blogged about most of my milestones when I first started this blog, but one milestone I have not shared yet was being able to wear heels again on February 21st for a Chamber of Commerce Gala I attended with my teammates. That was the first time in 2 1/2 years, it may seem like a small thing to some, but it's a huge thing to accomplish for those of us who at one time, had no strength to balance themselves even when standing flat on their feet. My next goal is to master walking in flip flops again. I still have trouble bending my toes so, I can't hold the flip flop on my feet. I've tried and when I walk, my feet just leave the shoe behind and this saddens me because summer will be here before you know it.
Since my last post, I have started a new job working for Keller Williams as a Realtor. I decided that life was too short, it was time to spread my wings and face my fears. I got my Real Estate license 4 years ago and Apartment Locating is not what I wanted to do for the rest of my life, I'm ready to make peoples dreams come true. I love to see people smile and buying your first home is exciting, even for those who aren't buying for the first time, but who might be expanding for a bigger family. I am not sure that I could have made that jump in my career without going through this transplant. If I can face my fears of chemo and hospitals and needles, I think I can face most anything. Let's see where this journey takes me.
Speaking of my fear of chemo, I sometimes sit back and think about when I was first told about HSCT, not knowing what it was and not knowing chemo was involved. I can't believe I almost gave up the idea of not having the transplant because of that fear of losing my stupid hair or of throwing up. I am so thankful I gave that up to God because otherwise, I might be sitting in a wheelchair right now and I definitely would not be typing this blog because I would not have had the energy or the drive and I would probably be sitting in a corner having a one man pity party. Instead, I sit here in amazement of what life has to offer, the joy and happiness that I feel inside because of my new surge of energy I have, my outlook on things are so different, I stopped letting my fears control me, that may get me in trouble, but how can I sit back and just let life pass me by when I have been given a second chance? I want to get more involved in my community and spread the word of HSCT, volunteer with organizations to help spread awareness, help raise money for people who struggle to pay for treatments. I didn't have insurance when I first became ill and when I was told by my doctor that I needed to see a specialist, all I saw were dollar signs. Luckily I was able to get insurance and even more lucky that I picked somewhat good insurance that covered most of the cost of my treatments. I'm talking about my IVIG treatments I received before transplant. At $40K per treatment, there is no way I could have swung that without the help of insurance, what about those who can't afford insurance, or who have high co-pays. So many things on my mind, so many thoughts and ideas of how to help others and pay it forward. To start out small, I started putting together chemo care packages and sending them out to patients going through HSCT for their autoimmune disease. I haven't been able to do it for everyone, the cost is not cheap, but there are some that stand out to me and have touched my heart strings in one way or another and I try to get a package out to them. I want to give back as much as I can because when I was down and at my worst, people came out of the woodworks to help me, physically, emotionally and financially. Complete strangers donated to my go fund me page, even to this day a donation here and there may trickle in so, I use that money to pay it forward to others, to show my appreciation for everything I have been given.
Throughout all of this, I have always kept a smile on my face, even when I was at my worst and I have, for the most part, kept a positive attitude. Today, I have the biggest smile on my face for two reasons. One reason is the obvious, I get to celebrate a year of being CIDP free and the other reason is because of the birthday present I received yesterday. I was given the news that my friend Don Poprock, whom I met in Chicago while going through my transplant, was accepted into the trial to receive his own transplant for CIDP. Exactly one year ago he was turned down and I think he may have almost given up the idea of ever trying again. I am so glad he did not give up and persevered.
Bryan Hinkle, Me and Don Poprock
February 26, 2014
Time to say goodbye and let's hope for an even greater year than this last. Thank you stem cells for giving me my health back.
HAPPY BIRTHDAY TO ME!!!
MARCH 5, 2015 - I cannot believe, with everything I went through, that I have reached my 1 year post transplant birthday and WOW, what a year it has been. From the moment I first showed signs of my disease to this day, it was one heck of a ride. Some of the moments I would love to go back and relive, other moments I wish never existed and would be erased from my memory, but everything from this last year I cherish and hold close to my heart. Last year on this date I received my stem cells back, they call it your new birthday because that is the moment you get a brand new immune system. My new immune system has not let me down and it seems to be just as strong as it was before I ever got CIDP.
So, where do I start? I have already blogged about most of my milestones when I first started this blog, but one milestone I have not shared yet was being able to wear heels again on February 21st for a Chamber of Commerce Gala I attended with my teammates. That was the first time in 2 1/2 years, it may seem like a small thing to some, but it's a huge thing to accomplish for those of us who at one time, had no strength to balance themselves even when standing flat on their feet. My next goal is to master walking in flip flops again. I still have trouble bending my toes so, I can't hold the flip flop on my feet. I've tried and when I walk, my feet just leave the shoe behind and this saddens me because summer will be here before you know it.
Since my last post, I have started a new job working for Keller Williams as a Realtor. I decided that life was too short, it was time to spread my wings and face my fears. I got my Real Estate license 4 years ago and Apartment Locating is not what I wanted to do for the rest of my life, I'm ready to make peoples dreams come true. I love to see people smile and buying your first home is exciting, even for those who aren't buying for the first time, but who might be expanding for a bigger family. I am not sure that I could have made that jump in my career without going through this transplant. If I can face my fears of chemo and hospitals and needles, I think I can face most anything. Let's see where this journey takes me.
Speaking of my fear of chemo, I sometimes sit back and think about when I was first told about HSCT, not knowing what it was and not knowing chemo was involved. I can't believe I almost gave up the idea of not having the transplant because of that fear of losing my stupid hair or of throwing up. I am so thankful I gave that up to God because otherwise, I might be sitting in a wheelchair right now and I definitely would not be typing this blog because I would not have had the energy or the drive and I would probably be sitting in a corner having a one man pity party. Instead, I sit here in amazement of what life has to offer, the joy and happiness that I feel inside because of my new surge of energy I have, my outlook on things are so different, I stopped letting my fears control me, that may get me in trouble, but how can I sit back and just let life pass me by when I have been given a second chance? I want to get more involved in my community and spread the word of HSCT, volunteer with organizations to help spread awareness, help raise money for people who struggle to pay for treatments. I didn't have insurance when I first became ill and when I was told by my doctor that I needed to see a specialist, all I saw were dollar signs. Luckily I was able to get insurance and even more lucky that I picked somewhat good insurance that covered most of the cost of my treatments. I'm talking about my IVIG treatments I received before transplant. At $40K per treatment, there is no way I could have swung that without the help of insurance, what about those who can't afford insurance, or who have high co-pays. So many things on my mind, so many thoughts and ideas of how to help others and pay it forward. To start out small, I started putting together chemo care packages and sending them out to patients going through HSCT for their autoimmune disease. I haven't been able to do it for everyone, the cost is not cheap, but there are some that stand out to me and have touched my heart strings in one way or another and I try to get a package out to them. I want to give back as much as I can because when I was down and at my worst, people came out of the woodworks to help me, physically, emotionally and financially. Complete strangers donated to my go fund me page, even to this day a donation here and there may trickle in so, I use that money to pay it forward to others, to show my appreciation for everything I have been given.
Throughout all of this, I have always kept a smile on my face, even when I was at my worst and I have, for the most part, kept a positive attitude. Today, I have the biggest smile on my face for two reasons. One reason is the obvious, I get to celebrate a year of being CIDP free and the other reason is because of the birthday present I received yesterday. I was given the news that my friend Don Poprock, whom I met in Chicago while going through my transplant, was accepted into the trial to receive his own transplant for CIDP. Exactly one year ago he was turned down and I think he may have almost given up the idea of ever trying again. I am so glad he did not give up and persevered.
February 26, 2014
Time to say goodbye and let's hope for an even greater year than this last. Thank you stem cells for giving me my health back.
Monday, December 8, 2014
When I had decided to go with the option of the stem cell transplant I had started a go fund me page to help raise money for the transplant, help with bills while being unemployed and to help with follow up visits. I had stopped posting on the page after my transplant because I figured people would no longer be willing to donate if i had already had the transplant, right? Well, i was wrong because out of the blue i recently had a donation made on my page and I was ecstatic over it. Such a relief because, even though my insurance paid for the transplant, it didnt pay for everything involved, Im still receiving bills from Northwestern for my share and now, since the transplant, I had to change insurance and Northwestern is no longer a preferred provider so, that means I have to meet a $10K deductible before insurance will even start covering anything. I still have to continue going back to Chicago for follow up visits until I hit my 5 year mark. This past October I went for my 6 month check (at 7 months) and found out the hard way that Northwestern was not a preferred provider when I received a bill in the mail for close to $10k for all the testing and blood work I received while I was there, I will then have to go back again sometime between March and June and the once a year thereafter. This adds up and to top it off, I also have the cost of the hotel and the flights, those are no longer being donated and my insurance no longer reimburses me on flights or lodging. So, can you see how I would be thrilled to see that I received a donation after all these months. This will go toward my flight for my next follow up and, I think its time that I start shopping for new insurance.
There are some amazing and caring people out there in the world and I am so grateful to have them in my life.
Here is a link to my go fund me if you would like to donate or know of anyone who would. Even small donations of $5 or $!0 add up.
http://www.gofundme.com/Staceys-Stem-Cell-Fund
There are some amazing and caring people out there in the world and I am so grateful to have them in my life.
Here is a link to my go fund me if you would like to donate or know of anyone who would. Even small donations of $5 or $!0 add up.
http://www.gofundme.com/Staceys-Stem-Cell-Fund
Wednesday, November 19, 2014
Interested in applying for the trial/study for HSCT for CIDP? Click the link below
Dr. Burt also does Stem Cell Transplants for other autoimmune diseases as well, such as Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis, Scleroderma and Sarcoidosis.
https://clinicaltrials.gov/ct2/show/study/NCT00278629?term=CIDP&rank=19#contacts
If the link does not work, here are the contents:
Purpose
Show Detailed Description
Eligibility
Contacts and Locations
More Information
No publications provided
Additional relevant MeSH terms:
ClinicalTrials.gov processed this record on November 17, 2014
Dr. Burt also does Stem Cell Transplants for other autoimmune diseases as well, such as Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis, Scleroderma and Sarcoidosis.
https://clinicaltrials.gov/ct2/show/study/NCT00278629?term=CIDP&rank=19#contacts
If the link does not work, here are the contents:
Hematopoietic Stem Cell Transplantation in Chronic Inflammatory Demyelinating Polyneuropathy
Verified September 2014 by Northwestern University
Sponsor:
Northwestern University
Information provided by (Responsible Party):
Richard Burt, MD, Northwestern University
ClinicalTrials.gov Identifier:
NCT00278629
First received: January 16, 2006
Last updated: September 23, 2014
Last verified: September 2014
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- No Study Results Posted
- Disclaimer
- How to Read a Study Record
Purpose
Chronic inflammatory demyelinating polyneuropathy is disease believed to be due to immune cells, cells which normally protect the body, but are now attacking the nerves in the body. As a result, the affected nerves fail to respond, or respond only weakly, to stimuli causing numbing, tingling, pain, and progressive muscle weakness. The likelihood of progression of the disease is high. This study is designed to examine whether treating patients with high dose cyclophosphamide (a drug which reduces the function of the immune system) and ATG (a protein that kills the immune cells that are thought to be causing your disease), followed by return of the previously collected blood stem cells will stop the progression of CIDP. Stem cells are undeveloped cells that have the capacity to grow into mature blood cells, which normally circulate in the blood stream. The purpose of the high dose cyclophosphamide and ATG is to destroy the cells in the immune system. The purpose of the stem cell infusion is to evaluate whether this treatment will produce a normal immune system that will no longer attack the body.
| Condition | Intervention | Phase |
|---|---|---|
| Polyneuropathy | Biological: hematopoietic stem cell transplantation | Phase 2 |
| Study Type: | Interventional |
| Study Design: | Endpoint Classification: Safety/Efficacy Study Intervention Model: Single Group Assignment Masking: Open Label Primary Purpose: Treatment |
| Official Title: | Non-myeloablative Autologous Hematopoietic Stem Cell Transplantation in Patients With Chronic Inflammatory Demyelinating Polyneuropathy: A Phase II Trial |
Resource links provided by NLM:
Genetic and Rare Diseases Information Center resources: Chronic Inflammatory Demyelinating Polyneuropathy
U.S. FDA Resources
Further study details as provided by Northwestern University:
Primary Outcome Measures:
- Survival;Disease improvement;Time to disease progression [ Time Frame: 5 years after transplant ] [ Designated as safety issue: Yes ]
| Estimated Enrollment: | 50 |
| Study Start Date: | March 2005 |
| Estimated Study Completion Date: | December 2016 |
| Estimated Primary Completion Date: | December 2015 (Final data collection date for primary outcome measure) |
| Arms | Assigned Interventions |
|---|---|
| Experimental: Hematopoietic stem cell transplantation
Autologous hematopoietic stem cell transplantation will be performed after conditioning regimen
| Biological: hematopoietic stem cell transplantation
Autologous hematopoietic stem cell transplantation
|
Show Detailed Description Eligibility| Ages Eligible for Study: | 18 Years to 65 Years |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
Criteria
Inclusion criteria:
- EMG definite CIDP according to the EFNS / EPS criteria (section 3.2.4c) AND
- Clinically typical CIDP (section 3.2.4 b) AND
- Failure to tolerate or respond to, or an incomplete response to, or relapse after at least 3 months of conventional treatment consisting of corticosteroids (equivalent dosage of prednisone 1.0/mg/day to 0.75mg/kg/day to start with adequate tapering trials of no less than 0.5mg/kg/day), and either IVIG or plasmapheresis
- Failure to respond to therapy is defined by :
- Persistent muscle weakness Grade 3/5 or worse (MRC) in at least one muscle or grade 4/5 in at least two muscle groupsOR
- Persistent dysphagia documented by either aspiration or insufficient clearing on video fluoroscopic examination.OR
- Persistent incapacitating sensory loss (e.g. gait ataxia, falls > 1/month)AND
- If patients are on IVIG or plasmapheresis, neurologic condition is documented to deteriorate (for example, new, increase fingertip parasthesias, or increased leg heaviness) upon stopping IVIG (or plasmapheresis)@
- Monoclonal gammopathy of undetermined significance (MUGS) (in which the pathogenesis of are thought to be the same as CIDP) will be allowed provided bone marrow aspirate and biopsy rules out multiple myeloma.
-Other immune mediated variants of CIDP will be included if they have auto- antibodies e.g. Anti GM1 or Anti-MAG.
Exclusion Criteria:
- Any evidence of hereditary cause for neuropathy that is known or likely hereditary demyelination neuropathy because of family history, foot deformity, mutilation of hands or feet, retinitis pigmentosa, ichthyosis, or liability to pressure palsies.
- Diptheria, drug, or toxin exposure likely to be cause of neuropathy
- Multifocal motor neuropathy
- Presence of sphincter disturbance
- Conditions in which the pathogenesis of the neuropathy may be different from CIDP such as: Lyme disease (Borrelia burgdorferi infection), POEMS syndrome, Osteosclerotic myeloma, malignancies such as Waldenstrom macroglobulinemia, and Castleman's)
- Multiple myeloma
- HIV positive
- Insulin dependent Diabetes mellitus
- Chronic active hepatitis
- Age > 65 years old or < 18 years old
- Significant end organ damage such as (not caused by CIDP):
- LVEF <40% or deterioration of LVEF during exercise test on MUGA or echocardiogram.
- Untreated life-threatening arrhythmia.
- Active ischemic heart disease or heart failure or myocardial infarction within the last 6 months
- DLCO <40% or FEV1/FEV < 50%
- Serum creatinine >2.0.
- Liver cirrhosis, transaminases > 2 x of normal limits or bilirubin >2.0 unless due to Gilbert disease.
- Prior history of malignancy except localized basal cell or squamous skin cancer.
- Positive pregnancy test, inability or unwillingness to pursue effective means of birth control, or failure to willingly accept or comprehend irreversible sterility as a side effect of therapy.
- Psychiatric illness or mental deficiency making compliance with treatment or informed consent impossible.
- Inability to give informed consent.
- Major hematological abnormalities such as platelet count less than 100,000/ul or ANC less than 1000/ul.
- Failure to collect at least 2.0 x 106 CD34+ cells by apheresis and, if necessary, bone marrow harvest is a contraindication to treatment, i.e., receiving the conditioning regimen.
Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00278629
Please refer to this study by its ClinicalTrials.gov identifier: NCT00278629
Contacts
| Contact: Dzemila Spahovic, MD | 312-695-4960 | d-spahovic@northwestern.edu |
Locations
| United States, Illinois | |
| Northwestern University, Feinberg School of Medicine | Recruiting |
| Chicago, Illinois, United States, 60611 | |
| Principal Investigator: Richard Burt, MD | |
| Sub-Investigator: Kathleen Quigley, R.N.;MBA | |
| Sub-Investigator: Kimberly Yaung, R.N. | |
| Principal Investigator: Robert Sufit Sufit, MD | |
| Sub-Investigator: Jeff Allen, MD | |
Sponsors and Collaborators
Northwestern University
Investigators
| Principal Investigator: | Richard Burt, MD | Northwestern University |
More Information No publications provided
| Responsible Party: | Richard Burt, MD, MD, Northwestern University |
| ClinicalTrials.gov Identifier: | NCT00278629 History of Changes |
| Other Study ID Numbers: | NU FDA CIDP.AUTO2003 |
| Study First Received: | January 16, 2006 |
| Last Updated: | September 23, 2014 |
| Health Authority: | United States: Food and Drug Administration |
Additional relevant MeSH terms:
| Polyneuropathies Polyradiculoneuropathy, Chronic Inflammatory Demyelinating Autoimmune Diseases Autoimmune Diseases of the Nervous System Demyelinating Diseases | Immune System Diseases Nervous System Diseases Neuromuscular Diseases Peripheral Nervous System Diseases Polyradiculoneuropathy |
ClinicalTrials.gov processed this record on November 17, 2014
Monday, November 17, 2014
Where did I leave off? That's right, my last hospital stay and the weight I loss. I have since gained half the weight back and look much, much better. No more bony, skinny arms and legs, I'm healthy again. This journey has been a crazy one, but it's been an experience and one that I am not only grateful to be on, but happy I did it and would do it all over again.
After returning home from my last hospital stay here locally, I rested up for a couple of more weeks and then decided I wasn't going to get stronger and better if I didn't follow doctors orders and go to Physical Therapy. I was dreading this because I don't like meeting strangers and having to explain my story, or I didn't at that time. I finally settled on Concentra because they had an Occupational Therapist and a Physical Therapist under the same roof.
Physical Therapy, this is where the fun begins. I hated being there, I hated having to tell the therapist my story, I hated having to tell him what CIDP was and that I had trouble walking and that I refused to wear my AFO's and I hated everyone and everything. I didn't want to do a balance test and a walking test and didn't want to lay on the table for him to stretch out my legs and muscles and I hated getting on the stationary bike to build that strength because I was already short of breath and everything he made me do made it hard for me to breathe and I will NOT show my weaknesses until, the day I fell during therapy and couldn't get up. My Physical Therapist became my hero that day. It wasn't anything big, but just the way he handled the situation and let me know that it was okay. I started to enjoy going to therapy after that and got rid of my poor attitude and stubbornness. My therapists name was Bob and he was the BOMB. Although, there were those moments I would finish up with an activity he had me doing and he would just sit at his desk on his computer, Im sure he was working, but I'm your patient right now, I am the one paying you, pay attention to me and let me know what I need to do next. My PT visits would end up being an hour and a half to two hours long and I loved it. Bob was entertaining and always making us laugh, I loved his personality. If you live in Austin and ever need a PT, look up Bob Carl at Concentra in South Austin, you couldn't find anyone better.
I wont even get into the Occupational Therapy part of it because that was the most boring, dreadful therapy ever. Nothing fun or funny about it. If I thought I could have made it without OT then I would have skipped it all together, but I can say it helped tremendously.
I attended PT and OT from Mid-April to the end of July. Once June rolled around I found out that Bob had cancer and by August he would no longer be there for at least 3 months so that he could receive his treatment in Houston at MD Anderson.
We had these made to support Bob in his battle with Throat Cancer.
This is me with my new Therapist, Cierra the receptionist and my Occupatinal
Therapist.
I continued going to PT and had a different therapist, but it just wasn't the same. I have a short attention span so, if you don't make it fun, then I lose interest. I decided to skip the month of August and focus on work and I would come back later, that never happened.
August 1st, I attended the Younique convention. Remember those AFO's I said I refused to wear? Well, after enough falls and pleading with my PCP, I decided to start wearing them. Younique is a make-up line that I decided to start selling for extra income and they had their convention in Grapevine at the Gaylord Hotel. Two days of classes and demonstrations and meeting new people. I had started wearing my AFO's mid May and I had decided to stop wearing them this weekend at the convention. I did NOT want to look like the handicapped person I thought I was. See that, I "thought" I was handicapped. After this weekend at the convention, I realized that my foot drop was going away, it was not as pronounced as it had been in the past. Those weeks of physical therapy had paid off too, my legs were stronger and my balance was back to normal. August became the month of new beginnings. I ditched those AFO's after that weekend and to this day they sit in the trunk of my car. I never went back to physical therapy because I could see that I was able to do this on my own. Since then, it gets better and better on a daily and monthly basis. I still want to go back to PT for one last test to not only see Bob and how he is doing, but also to see if I score different on my test than when I first started. I know I will, I just want to see how much has changed and how far i have come along.
September 5, 2014: This is my 6 month post transplant birthday and this brought another exciting milestone. Here is my facebook post from the day before...
Ok, I did it. I finally dusted off my bike and went for a ride. I haven't been on it in about a year and a half to two years. I wasn't able to keep my balance in order to throw my leg over the bike, this time last year I wouldn't have been able to open my hands wide enough to grab the brakes. I also didn't have the strength to push the peddles, but tonight was a different story. I was able to do it all. My ticker still works and got a good workout, my legs were crying to come back home, but my body was a trooper. Tomorrow is my 6 month post transplant birthday and this is how I celebrated.
That was one of the happiest days so far since my transplant. I haven't been on my bike since then, but to know that I can do it is an accomplishment. Now I just need to motivate myself to ride it more often and make it a habit. I bought that bike 7 months before I got sick so, it broke my heart to see it sit in the garage and rot. I almost sold it a couple of times so maybe someone cold get some use out of it and because I could have used the money, but each time I talked myself out of it because I was determined to get back on it one day. I was not going to let this disease win.
Over time throughout the month I noticed I was getting better and better at balancing on one foot. Before the transplant, just barely lifting my foot off the ground would throw my balance off. Now, I can get dressed and put my pants on, one leg at a time, without leaning against the wall for balance or sitting on the bed. It took me 6 months to get to this point and I am feeling human again.
I was supposed to go back to Chicago at the beginning of this month, September, for my 6 month evaluation, but I put it off for another month. I wanted to go back when my friend Brenda was going for her one year evaluation. Plus, Chicago is prettier and much more pleasant in October.
September 30 - October 4: Chicago and my Evaluation
September 30th: This day started bright and early. I scheduled a 6am flight, we would land in Chicago at 8:30am. I figured that would give us the day to play and explore, but it didn't work out that way. A few days beforehand I have received a call from Nicole Peters, Dr. Burt's assistant, asking if we could change my appointment with Burt from Wednesday to Tuesday the 30th. Ok, no problem, that would just give us the following day to do whatever we wanted. We, my friend April and I, boarded the plane and patiently waited, and waited. They were having issues with the plane so they decide to make us get off the plane and catch a new flight. Fortunately for me, my flight took off at 6:30am and we have a layover in Nashville and then on to Chicago. I go to Chicago at 11:30am. Unfortunately for April, she couldn't catch that flight with me because she had a conference call that she had to be on at 10:30am, there was no way she would be able to be on that call if she would have caught that next flight with me. She settled on a later flight, I cant remember when it was supposed to leave, but I do remember she was supposed to land in Chicago at 3:30pm. Well that didn't happen either, I can't recall the circumstances that came about, but she didn't show up at the hotel room that night until 11pm. Talk about a long day for both of us considering we got up at 3am that morning.
After I had landed at 11:30, I met up with Brenda and we caught a ride to the hotel where we ran into Donna Hightower and her husband. Donna received a call from Paula at Dr. Burt''''s office and we were all three told to come on to our appointments. I had missed my scheduled time because it was set 11am and I was still on the plane at that time, but Dr. Burt is so awesome at fitting you in whenever you can get there. He cares so much for his patients and loves his job, he makes adjustments when needed.
Donna went on ahead of me and Brenda, but we weren't far behind. I was the last to be seen by Dr. Burt, but once I got back to the exam room and he walked in the door, I asked him if I could give him a hug. He smiled and of course let me and I gave him the biggest hug ever with a big fat Thank You to follow and told him I felt like a million bucks. I then gave Paula a hug too and let them know I was so grateful. I know Dr. Burt lives for these moments because it shows him that he is doing good and there's a purpose in what he does. These are the reasons he does this research for stem cell transplants. I got a good check up and Dr. Burt said I could just expect to continue getting better, I told him that I did expect that and knew that i would continue on the path that I'm on. I also told him and Paula that hopefully soon they could expect a video of me running.
After our appointment with Burt, Brenda and I had blood work done and then met Donna and her husband at Pippen's Irish Pub and ate the BEST hot dog ever in the world. I ordered the charred cheddar dog Chicago style along with cheese fries and an ice cold beer. A great meal after getting a great report from Burt.
After returning back to the hotel and waiting on April to arrive, I rested up some, but decided to go bother Brenda, I figured this may be the only chance to have "us" time with nobody else around and give us a chance to get to know one another better. We laid in the bed telling our secrets and laughing and had a great time talking. I was getting tired and knew April was about to be there so I went back to my room.
(This is me right before going to our appointment with Dr. Burt, trying on one of Brenda's wigs. I forgot what it felt like to have longer hair)
Wednesday, October 1st. At 10am we had a meeting with Chicago Greeters to get a tour of Chicago. This is a pretty cool thing Chicago offers, it's free and they give you a 2 to 4 hour tour of anything you want to see. You have to be a visitor, you cannot be a local, and it is given by a local who volunteers their time to tell you about their wonderful city and the many things it has to offer. We got a tour of the loop, saw some pretty cool stuff and enjoyed our day.
Me, Brenda, Donna & April October 1, 2014
Later that day Brenda and I met up with Jessica, the photographer that snapped a few photos of us at the Rosebud back in March. She generously took our pictures for us t no charge. Like I said before, she has a heart of gold. Here are some pics she took.
Thursday October 2, 2014 consisted of going back to the hospital to have an EMG and NCV test. This is not a pleasant experience. The NCV consist of them sticking electrodes on you and zapping you with little shocks of electricity to see how quickly your nerves relay the message. The EMG is the same thing except they stick a tiny needle into your muscles. This test hurts, not too terribly bad, but enough to get you very agitated.
Dr. Allen about to give me my EMG test
Receiving my NCV Test
About to start the NCV test on my arm
Once I left the hospital I was on my own. Brenda was about to have hers done, Donna was out doing her own thing and April stayed back in the hotel room to work. I decided to take this time to do some roaming around on my own and take some pictures.
When I went to Chicago last year in October & November I wanted to go inside this church and just never got the chance because the person(s) I took with me either went without me while I was at my doctors visits or they just didn't want to go in, so I figured now was my chance to do it, I was by myself, I had nobody else to take into consideration which meant I could stay as long as I wanted, be as slow as I wanted to be so, I went inside, had a seat and prayed. I thanked God for this opportunity, for a chance to have my life back, for my family and friends who were there with me the whole way trough this ordeal, for Chris who has ben by my side the whole time and for all my friends I have met on the CIDP and HSCT group pages on facebook who were there to support me. I felt so blessed.
After having my little chat with God, I went back to the hotel room to meet up with April and figure out what we were going to do about dinner. The winner that night for dinner, Jake Melnick's. Home of the best wings in Chicago.
Try the Firecracker wings and the fire roasted Artichoke
Friday October 3, 2014
After the EMG and NCV test yesterday, I had to go back to see Dr. Allen to discuss the results and answer a bunch of questions regarding what I can and can't do on a scale of 1 to 5. I also had to get up out of a chair and walk to a point down the hallway and back and they timed me to see how fast I was compared to last time. Significant difference for the better this time around. Dr. Allen told me that he could see great results with the EMG (muscles) and only a slight change on the NCV compared to last years results. He did explain though, it doesn't matter what the test results say, what matters most is how I fell and how I'm doing. I let him know I was feeling great and doing perfect. He was not as encouraging as Dr. Burt was. He told me I may not see anymore changes and that I may not get any better than I was at that point. I think maybe he didn't want me to get my hopes up, you know, use a little reverse psychology on me. That doesn't work with me. I know in my heart that I WILL get better, but I told him that even if I didn't, I was happy with my results now and anything beyond this would be a little bonus.
That evening me, April and Donna went back to Pippen's Irish pub for another hot dog and a drink before meeting up with Brenda and Donna's husband to go to the top of the Hancock tower for cocktails. We figured our last night there deserved a special treat and this was just the place. We found a spot right in the corner of the bar with great views of downtown Chicago all lit up.
I have no idea how I was able to get those two pictures to connect like that, but it looks pretty cool. That bottom picture is Donna, Me and Brenda. Oct. 3, 2014 Stem Cell Sisters for life.
Saturday October 4, 2014
Our last day in Chicago and it was cold. I believe it was around 42 outside and raining. April and I slept in, took our time getting ready and packed up. We had a lunch date with another HSCT patient, Scott Hucks. I didn't bring a coat with me because I didn't think it would get cold enough while we were there so, we stopped at the H&M store to do a little shopping, oh darn it, lol. I found a coat, a sweater and I was good to go. Off to meet Scott, his girlfriend Heather and his brother Luke. Can you guess where we met them? That's right, Jake Melnick's. This has become my all time favorite place in Chicago to go for good food and drinks.
Luke, Me, Scott and Heather
Scott and me. October 4, 2014
You go Scott, kick MS to the curb.
April and I finally had to leave to go catch our flight back to Austin. Good Bye Chicago, I will miss you, til next time.
Back home and back to daily life. The weeks and days passed and on October 24th I had to run down the driveway after my 2 year old granddaughter. Wait, what? Did you hear that? I RAN. It was by accident that I found out, but I did it.
My facebook post on October 25th: 2 1/2 years ago I acquired an autoimmune disease that made it impossible to run, heck even walking was hard. In March I had a stem cell transplant to restart my immune system and gave me a new one. Today at almost 8 months post transplant, here I am running. Not perfect, but way better than before the transplant. For those of you who wonder why I had the transplant or wonder if it was worth it, YOU BET. Watch and decide for yourself. Stem cell transplants work.
After returning home from my last hospital stay here locally, I rested up for a couple of more weeks and then decided I wasn't going to get stronger and better if I didn't follow doctors orders and go to Physical Therapy. I was dreading this because I don't like meeting strangers and having to explain my story, or I didn't at that time. I finally settled on Concentra because they had an Occupational Therapist and a Physical Therapist under the same roof.
Physical Therapy, this is where the fun begins. I hated being there, I hated having to tell the therapist my story, I hated having to tell him what CIDP was and that I had trouble walking and that I refused to wear my AFO's and I hated everyone and everything. I didn't want to do a balance test and a walking test and didn't want to lay on the table for him to stretch out my legs and muscles and I hated getting on the stationary bike to build that strength because I was already short of breath and everything he made me do made it hard for me to breathe and I will NOT show my weaknesses until, the day I fell during therapy and couldn't get up. My Physical Therapist became my hero that day. It wasn't anything big, but just the way he handled the situation and let me know that it was okay. I started to enjoy going to therapy after that and got rid of my poor attitude and stubbornness. My therapists name was Bob and he was the BOMB. Although, there were those moments I would finish up with an activity he had me doing and he would just sit at his desk on his computer, Im sure he was working, but I'm your patient right now, I am the one paying you, pay attention to me and let me know what I need to do next. My PT visits would end up being an hour and a half to two hours long and I loved it. Bob was entertaining and always making us laugh, I loved his personality. If you live in Austin and ever need a PT, look up Bob Carl at Concentra in South Austin, you couldn't find anyone better.
I wont even get into the Occupational Therapy part of it because that was the most boring, dreadful therapy ever. Nothing fun or funny about it. If I thought I could have made it without OT then I would have skipped it all together, but I can say it helped tremendously.
I attended PT and OT from Mid-April to the end of July. Once June rolled around I found out that Bob had cancer and by August he would no longer be there for at least 3 months so that he could receive his treatment in Houston at MD Anderson.
This is me with my new Therapist, Cierra the receptionist and my Occupatinal
Therapist.
I continued going to PT and had a different therapist, but it just wasn't the same. I have a short attention span so, if you don't make it fun, then I lose interest. I decided to skip the month of August and focus on work and I would come back later, that never happened.
August 1st, I attended the Younique convention. Remember those AFO's I said I refused to wear? Well, after enough falls and pleading with my PCP, I decided to start wearing them. Younique is a make-up line that I decided to start selling for extra income and they had their convention in Grapevine at the Gaylord Hotel. Two days of classes and demonstrations and meeting new people. I had started wearing my AFO's mid May and I had decided to stop wearing them this weekend at the convention. I did NOT want to look like the handicapped person I thought I was. See that, I "thought" I was handicapped. After this weekend at the convention, I realized that my foot drop was going away, it was not as pronounced as it had been in the past. Those weeks of physical therapy had paid off too, my legs were stronger and my balance was back to normal. August became the month of new beginnings. I ditched those AFO's after that weekend and to this day they sit in the trunk of my car. I never went back to physical therapy because I could see that I was able to do this on my own. Since then, it gets better and better on a daily and monthly basis. I still want to go back to PT for one last test to not only see Bob and how he is doing, but also to see if I score different on my test than when I first started. I know I will, I just want to see how much has changed and how far i have come along.
September 5, 2014: This is my 6 month post transplant birthday and this brought another exciting milestone. Here is my facebook post from the day before...
Ok, I did it. I finally dusted off my bike and went for a ride. I haven't been on it in about a year and a half to two years. I wasn't able to keep my balance in order to throw my leg over the bike, this time last year I wouldn't have been able to open my hands wide enough to grab the brakes. I also didn't have the strength to push the peddles, but tonight was a different story. I was able to do it all. My ticker still works and got a good workout, my legs were crying to come back home, but my body was a trooper. Tomorrow is my 6 month post transplant birthday and this is how I celebrated.
That was one of the happiest days so far since my transplant. I haven't been on my bike since then, but to know that I can do it is an accomplishment. Now I just need to motivate myself to ride it more often and make it a habit. I bought that bike 7 months before I got sick so, it broke my heart to see it sit in the garage and rot. I almost sold it a couple of times so maybe someone cold get some use out of it and because I could have used the money, but each time I talked myself out of it because I was determined to get back on it one day. I was not going to let this disease win.
Over time throughout the month I noticed I was getting better and better at balancing on one foot. Before the transplant, just barely lifting my foot off the ground would throw my balance off. Now, I can get dressed and put my pants on, one leg at a time, without leaning against the wall for balance or sitting on the bed. It took me 6 months to get to this point and I am feeling human again.
I was supposed to go back to Chicago at the beginning of this month, September, for my 6 month evaluation, but I put it off for another month. I wanted to go back when my friend Brenda was going for her one year evaluation. Plus, Chicago is prettier and much more pleasant in October.
September 30 - October 4: Chicago and my Evaluation
September 30th: This day started bright and early. I scheduled a 6am flight, we would land in Chicago at 8:30am. I figured that would give us the day to play and explore, but it didn't work out that way. A few days beforehand I have received a call from Nicole Peters, Dr. Burt's assistant, asking if we could change my appointment with Burt from Wednesday to Tuesday the 30th. Ok, no problem, that would just give us the following day to do whatever we wanted. We, my friend April and I, boarded the plane and patiently waited, and waited. They were having issues with the plane so they decide to make us get off the plane and catch a new flight. Fortunately for me, my flight took off at 6:30am and we have a layover in Nashville and then on to Chicago. I go to Chicago at 11:30am. Unfortunately for April, she couldn't catch that flight with me because she had a conference call that she had to be on at 10:30am, there was no way she would be able to be on that call if she would have caught that next flight with me. She settled on a later flight, I cant remember when it was supposed to leave, but I do remember she was supposed to land in Chicago at 3:30pm. Well that didn't happen either, I can't recall the circumstances that came about, but she didn't show up at the hotel room that night until 11pm. Talk about a long day for both of us considering we got up at 3am that morning.
After I had landed at 11:30, I met up with Brenda and we caught a ride to the hotel where we ran into Donna Hightower and her husband. Donna received a call from Paula at Dr. Burt''''s office and we were all three told to come on to our appointments. I had missed my scheduled time because it was set 11am and I was still on the plane at that time, but Dr. Burt is so awesome at fitting you in whenever you can get there. He cares so much for his patients and loves his job, he makes adjustments when needed.
Donna went on ahead of me and Brenda, but we weren't far behind. I was the last to be seen by Dr. Burt, but once I got back to the exam room and he walked in the door, I asked him if I could give him a hug. He smiled and of course let me and I gave him the biggest hug ever with a big fat Thank You to follow and told him I felt like a million bucks. I then gave Paula a hug too and let them know I was so grateful. I know Dr. Burt lives for these moments because it shows him that he is doing good and there's a purpose in what he does. These are the reasons he does this research for stem cell transplants. I got a good check up and Dr. Burt said I could just expect to continue getting better, I told him that I did expect that and knew that i would continue on the path that I'm on. I also told him and Paula that hopefully soon they could expect a video of me running.
After our appointment with Burt, Brenda and I had blood work done and then met Donna and her husband at Pippen's Irish Pub and ate the BEST hot dog ever in the world. I ordered the charred cheddar dog Chicago style along with cheese fries and an ice cold beer. A great meal after getting a great report from Burt.
After returning back to the hotel and waiting on April to arrive, I rested up some, but decided to go bother Brenda, I figured this may be the only chance to have "us" time with nobody else around and give us a chance to get to know one another better. We laid in the bed telling our secrets and laughing and had a great time talking. I was getting tired and knew April was about to be there so I went back to my room.
Wednesday, October 1st. At 10am we had a meeting with Chicago Greeters to get a tour of Chicago. This is a pretty cool thing Chicago offers, it's free and they give you a 2 to 4 hour tour of anything you want to see. You have to be a visitor, you cannot be a local, and it is given by a local who volunteers their time to tell you about their wonderful city and the many things it has to offer. We got a tour of the loop, saw some pretty cool stuff and enjoyed our day.
Later that day Brenda and I met up with Jessica, the photographer that snapped a few photos of us at the Rosebud back in March. She generously took our pictures for us t no charge. Like I said before, she has a heart of gold. Here are some pics she took.
Thursday October 2, 2014 consisted of going back to the hospital to have an EMG and NCV test. This is not a pleasant experience. The NCV consist of them sticking electrodes on you and zapping you with little shocks of electricity to see how quickly your nerves relay the message. The EMG is the same thing except they stick a tiny needle into your muscles. This test hurts, not too terribly bad, but enough to get you very agitated.
Once I left the hospital I was on my own. Brenda was about to have hers done, Donna was out doing her own thing and April stayed back in the hotel room to work. I decided to take this time to do some roaming around on my own and take some pictures.
After having my little chat with God, I went back to the hotel room to meet up with April and figure out what we were going to do about dinner. The winner that night for dinner, Jake Melnick's. Home of the best wings in Chicago.
Friday October 3, 2014
After the EMG and NCV test yesterday, I had to go back to see Dr. Allen to discuss the results and answer a bunch of questions regarding what I can and can't do on a scale of 1 to 5. I also had to get up out of a chair and walk to a point down the hallway and back and they timed me to see how fast I was compared to last time. Significant difference for the better this time around. Dr. Allen told me that he could see great results with the EMG (muscles) and only a slight change on the NCV compared to last years results. He did explain though, it doesn't matter what the test results say, what matters most is how I fell and how I'm doing. I let him know I was feeling great and doing perfect. He was not as encouraging as Dr. Burt was. He told me I may not see anymore changes and that I may not get any better than I was at that point. I think maybe he didn't want me to get my hopes up, you know, use a little reverse psychology on me. That doesn't work with me. I know in my heart that I WILL get better, but I told him that even if I didn't, I was happy with my results now and anything beyond this would be a little bonus.
That evening me, April and Donna went back to Pippen's Irish pub for another hot dog and a drink before meeting up with Brenda and Donna's husband to go to the top of the Hancock tower for cocktails. We figured our last night there deserved a special treat and this was just the place. We found a spot right in the corner of the bar with great views of downtown Chicago all lit up.
I have no idea how I was able to get those two pictures to connect like that, but it looks pretty cool. That bottom picture is Donna, Me and Brenda. Oct. 3, 2014 Stem Cell Sisters for life.
Saturday October 4, 2014
Our last day in Chicago and it was cold. I believe it was around 42 outside and raining. April and I slept in, took our time getting ready and packed up. We had a lunch date with another HSCT patient, Scott Hucks. I didn't bring a coat with me because I didn't think it would get cold enough while we were there so, we stopped at the H&M store to do a little shopping, oh darn it, lol. I found a coat, a sweater and I was good to go. Off to meet Scott, his girlfriend Heather and his brother Luke. Can you guess where we met them? That's right, Jake Melnick's. This has become my all time favorite place in Chicago to go for good food and drinks.
You go Scott, kick MS to the curb.
Back home and back to daily life. The weeks and days passed and on October 24th I had to run down the driveway after my 2 year old granddaughter. Wait, what? Did you hear that? I RAN. It was by accident that I found out, but I did it.
My facebook post on October 25th: 2 1/2 years ago I acquired an autoimmune disease that made it impossible to run, heck even walking was hard. In March I had a stem cell transplant to restart my immune system and gave me a new one. Today at almost 8 months post transplant, here I am running. Not perfect, but way better than before the transplant. For those of you who wonder why I had the transplant or wonder if it was worth it, YOU BET. Watch and decide for yourself. Stem cell transplants work.
Saturday, November 15, 2014
My name is Stacey Dematos and in March of 2014 I had a stem cell transplant for CIDP, an autoimmune disease that attacks the protective coating on your nerves. This is my story:
I often started writing on here time and time again only to delete everything I have said and move away from the page. I decided today, 11/03/2014, it was time to start talking. I need to get over the fear that I may ramble on and on or lose people's interest because the more I think about it, this is more for me, not the world. This is something for me to look back on and reflect years down the road when I may ask myself, "When did that exactly happen?"
This is all completely from Memory, no notes were ever taken so, I may forget or leave some things out, but not on purpose.
You see, it all started May 2012. I remember going to my friend Elaine's wedding, outside of Galveston Texas. I had been working out and downloaded the app on my phone "Couch to 5K." Now, for anyone who knows me,, knows that I HATE to run and am not very good at it. I just don't have the lung capacity for it, but I was determined not only to train myself, but to train my body. At Elaine's Wedding, May 12, 2012 I noticed that my calves were really sore and hurting, "Oh, just another sign of getting old" is what I told myself. Convincing myself that the body just doesn't heal as quickly in your 40's. At this time I was 42. During the wedding I felt a little unbalanced in my shoes. I convinced myself that it was just the new heals and I wasn't used to wearing them. All the stretching of the muscles I did to help my legs feel better didn't work. Little did I know it had nothing to do with age or being out of shape. I had a little monster sneaking up on me that was taking me prisoner.
Later that month I flew to Alaska to visit my daughter and watch her get married. The day of the wedding I decided to go for a run on the Air Force base they lived near. Because they both worked on base, I was able to have a temporary access. The base had a nice little jogging trail that was built in the woods and it was such a peaceful place to run, but while I was running, I noticed I couldn't run on my tip toes. I noticed I did not have much of a launch in my feet or legs, but was still running okay, it just seemed a little off.
Over the next several weeks I would go walking at least 3 or 4 nights a week with my friend Nicole and we would walk for about 4 miles each night. I have no clue how I ever discovered this, but I showed her how when I would run and my legs would tire out, I couldn't stand on my tip toes. She said it was just all in my head, which I took no offense to at that time because I thought she could be right. People at work started noticing me walking with a limp, I never noticed it myself, until they said something. I also started having severe lower back pain. The thought that went through my mind right off the bat was "Great, I'm taking up after my dad just like everything else." I have my dads eyes, his hair, his personality, the cracking of the big toe when walking down the hallway, you name it, I got it from him. I remember when I was about 19 or 20 my dad had to have back surgery and I figured this was me, following in his footsteps. By the time I finally went to the doctor it was September. I had my doctor do blood tests to check for Diabetes because my other symptoms were tingling and numbing of my toes and feet which is a classic sign of diabetes. All tests came back negative, he checked for Diabetes, B12 deficiency and my thyroid. B12 came back a little low, but nothing too alarming. The next test, an MRI of my lower back, lets see of there's a slipped disk. $500 later and everything looked great. GREAT, that was $500 I could have spent on something more fun. My primary care Doctor decided it was time for me to see a neurologist. Oh boy, that was the last thing I wanted to hear, or do. I hate going to the doctor, but going to a neurologist, in my head, meant serious business and bad news. I put it off and looked into other outlets such as a chiropractor, acupuncture and trying to the Airrosti method (Google it cause I still cant explain that one.) When I went to the Airrosti Doctor he said he wouldn't even touch me, he said I needed to listen to my doctor and go to a neurologist. Why did he say that? Do you know those metal things doctors hit on their hands and it vibrates? I don't know what they're called, but he had one, hit it on his hand to make it vibrate and touched it on the end of my toes on both feet. I didn't feel a thing and he was concerned. This was the moment that it hit me. I went to my car and cried, and cried, and cried. This could be serious and I may have waited too long. What if it's cancer? I immediately went home and called a neurologist that my PC referred me to. I had an appoint within a couple of weeks.
My first visit with my new neurologist went well. I don't remember the exact date, somewhere around December 17th or 18th. He asked all kinds of questions and sent me for blood work and set me up for an appointment to have an EMG and a NCV. What are those you ask? Torture methods that the neuro's like to use on their patients. Seriously, the NCV is where they tape little electrodes to certain areas on the skin of your feet, legs, arms and hands and send electrical signal's to them. Not too painful, but extremely irritating. They test how your nerves react and how quickly the signal gets to the point of destination. They do this several times in one spot turning the signal up each time until your hand or leg jumps off the table. The EMG is about the same thing except they stick little tiny needles into your arms, legs, hands and feet and send the electrical signals through it. By the time you get off that table you are hating the world. After the test my doctor took me back to an exam room and told me he thought it possibly could be an autoimmune disease called CIDP, Chronic Inflammatory Demyelinating Polyneuropathy. I let it all go in one ear and out the other and didnt even look it up when I left his office. His suggestion was to get a lower lumbar puncture a.k.a Spinal Tap, to check my spinal fluids for high protein levels. He scheduled it for New Years Eve. Strict instructions were: You are to have someone drop you off AND pick you up. You ARE NOT allowed to drive. You are to stay laying down for the next 12 hours at the least and 24 hours at the most. NO DRINKING!! What? Did they not realize this was NEW YEARS EVE PEOPLE??? Ok fine, I can do this. I had my friend Troy take me and pick me up. He even sat with me at home until Chris got home. It was by far the most boring New Years eve. I even went to bed before Midnight. I begged Chris to let me go across the street to the neighbors for just one drink, he was having nothing to do with that. A couple of days later the Doctors office called to schedule another appointment with me to go over my results. January 4th, this date is burned in my brain because that is when I found out the monster that lived within me. It was for sure CIDP. It had a name and it was taking over with a vengeance. My walking was getting worse, I couldn't walk heal to toe, it was more like a prancing horse. I had to literally think about each step I took and concentrate on every movement to make sure I did not trip and fall. This was not always possible. When I left that office that morning I was numb. My disease had a name and according to the doctor it also had a treatment, but no cure. Hmm, that doctor must not have known me too well because I wasnt going to take NO CURE as an answer. We discussed treatments and agreed on IVIg. Human blood antibodies from plasma donors. When Chris and I left the doctors office we headed out to our friends ranch in Junction TX for the weekend. The whole drive out there I was researching this disease online. Possible outcome could be paralysis, living in a wheelchair or worse, DEATH. Although death is rare, it was a possibility if it hit your respiratory system. I didn't really know what to do or think. Chris told me not to think about it too hard because there was nothing I could do about it over the weekend. We spent that weekend appreciating what we had and me thinking my life was over.
By the end of the month I started my IVIg treatments. I had one treatment a day for three days. That meant being hooked up to an IV for 3 to 4 hours each day, luckily I was given benedryl each time and took a nice peaceful nap in the cushy recliners they provided the patients. I didn't notice any difference after that first round of treatment, but I had dreams while sleeping that I could run. I hated those dreams because reality hit once my eyes opened. February rolled around and more treatments, but it was knocked down to once a month. Come May I noticed that climbing stairs became easier and I didnt need to hold onto the rails, I think the treatments were working, until I noticed that my hands were starting to go numb. That May I had switched jobs and with the new job I received free health insurance and because of the change and waiting for approvals for the IVIg, I had to skip June and July's treatments. BIG mistake. My symptoms were coming back full force.
Finally in August and September I was able to get my treatments again, but they were't really helping at all.
Well, let me back up a few months here to April 2014. I had decided to join a few facebook groups and one day there was a girl who mentioned SCT. I had no clue what that meant and didn't want to sound stupid by asking publically so, I sent a private message. Her name was Wendy and she was so nice to tell me that it meant Stem Cell Transplant. She sent me a link to her blog that went into detail of each step she went through, the good, the bad and the ugly. Chemo was mentioned and right then I was scared. Chemo? Lose my hair? Poop my pants? Oh no way, I don't think so, not for me. I pondered over it and asked her "If you had to do this all over again, would you?" She said "In a heartbeat." I figured it must not be that bad and heck, your hair grows back. I sat on the idea for 3 months and finally reached out to the doctor in Chicago who was doing this stem cell transplant, Dr. Richard K. Burt. I heard back within a few days and I filled out all the paperwork. About a month to a month and half later, I heard from Dr. Burt's office to schedule my appointment for an evaluation, in their terms "A second opinion." When they first called I didn't even answer the phone because I was scared, Don't ask me why cause I have no clue. I decided this definitely would not happen if I didn't call them back. I did call them back and set my appointment up for October 9-11. Chicago, here I come. I was blessed to have had Chris's brother donate miles to get me there a friend helped pay for part of my room and I invited my friend Elaine and her friend Debbie which covered the rest of the room. My arrangements were made and I was ready to go.
We flew out October 7 and when we got there we were ready to check out the town EXCEPT, my feet were hurting so bad and so swollen and my legs were too weak to get me around so, we called and rented a scooter. Why did I not get one of these months ago? That little thing was heavenly. October 8th was my appointment with HIM, the one, the ONLY Dr. Burt. This guy was famous in my eyes, a miracle worker and a dream maker. He asked me about all of my symptoms, when they started, what medications I was on, what treatments I received how well they worked, or didn't. By the time I had my appointment with Dr. Burt, my hands were in bad shape. I could hardly write, it looked like that of a child, I couldn't straighten my fingers out, I couldn't type except with my index fingers and hen pecking the keys on the keyboard, I couldn't really fix my hair much because I didn't have the strength in my hands to grip the hair straightener or use the brush. I couldn't button or zip or tie my shoes. Fatigue, did I mention that one yet? It was a bitch. I was told by Dr. Burts nurse that I was a good candidate for the transplant, but next step was to meet up with their Neurologist, Dr. Allen. I was warned that he wasn't necessarily all for the transplant, but that Dr. Burt had the final say so. The next day was meeting Dr. Allen and having the torture test again, the EMG and the NCV. The following day was meeting him in his office to go over the results and answering a bunch of questions. All visits were done and it was time to see more of Chicago, the beautiful Windy City.
Right before going to Chicago my neuro had put me on Prednisone and Cellcept. Right after my appoint with Dr. Allen in Chicago, I was ordered to get off Cellcept. It would take about 6 months to take effect and by that time I would have had my transplant.
Once I got home from Chicago, about a week and a half later, Dr. Burts nurse, Paula, had called me to let me know that my insurance approved for me to have all the pre-testing done. She said that was a good sign, if they approved the pre-testing, chances are they would approve the transplant. We scheduled for me to go back in November for a weeks worth of testing. MRI's, CAT Scans, lung tests, heart tests, more blood work, you name it, I probably had it done. Everything came back healthy as a horse except one, but it wasn't anything to really stress over. I had a possible cyst on my ovary and they just wanted to make sure it wasn't cancerous. By the time I had the ultrasound done on it, it had disappeared. Everything checked out and I was good to go, now we just had to wait for insurance approval for the transplant. I got home from Chicago that November on the 24th and the wait seemed to take forever.
Dec. 6, 2013
This is another date that will stick out in my head forever. This is the day that I received the best news ever. My insurance agreed to pay for the transplant. My nurse from Aetna called me and said that it would be covered, all I could say is Thank You, over and over again. My prayers had been answered. I remember when I hung up the phone I cried like a big baby, I screamed with happiness, I posted on facebook, I texted my friends and then...Reality set in. The next several weeks were an emotional roller coaster. This was for real, now what? When I went for my evaluation in October Dr. Burt looked me in the eyes and told me, "Nobody has ever died from this, but someone will one day and that person could be you." Now that thought really sunk into my head. How was my body going to react to the chemo? How am I going to look with no hair? How am I going to get through this? I know insurance said they would pay for it, but how much? I need money to take care of my bills, to cover my part of the co-pay's and medications that insurance won't pay for. My mind was a wreck. One day I was happy, the next I was depressed and didn't want to step one foot outside or even leave the bed or couch. Poor Chris, he never knew who he was coming home to. He was such a saint through it all.
After talking to Dr. Burt's office trying to figure out when we were going to schedule the transplant, they wanted me to come on Christmas eve for mobilization, I wasn't going to have any part of that, they wanted me to come at the end of January, Nope, that wasn't going to work either. We finally decided on February 3rd for mobilization. That's where they check you into the hospital for one night to administer chemo. The particular one I received was Cyclophosphamide, Cytoxan for short. I checked in bright and early around 7:30am, by 1pm that afternoon I was hooked up to the IV, I had my mom, my daughter and my 16 month granddaughter there with me. I remember being so nervous because I didn't want to get in trouble for having my granddaughter there and because I had no clue how I would react to the chemo. I ended up just falling asleep and taking a small nap, that was the highlight of my day. I remember when Hailey and my mom left to go back to the hotel room, I had never felt so alone. The nurses actually left me alone for the most part, I had already checked in with Chris and other friends through texting, I didn't know what to do. I just turned the TV on, ordered dinner and fell asleep after eating without ever getting under the covers. I don't recall the nurses ever coming in to check on me through the night, but I'm sure they did and I just slept through it because someone turned the TV off.
The next morning around 6:30 or 7am, Phil walked into the room. He was the attendant that took my vitals and he said that Dr. Burt would be around soon to make his rounds. At this time of morning? Dr. Burt didnt even show up until around 8:30 or 9am. Phil quickly became someone I did not care for that morning. After Dr. Burt made his rounds it was a day of hurry and wait. I was finally released around 1pm and went back to the hotel, meds in hand, to rest. No bad side effects from the chemo, I felt full of life and energy. ready to take on the day.
Sometimes I find it hard to write and share my thoughts if my heart isn't into it or if I'm just not feeling it. That's what I have been experiencing the last several days, but today was different. I don't know why, maybe because of the gloomy, cold weather we are having here in Central Texas, it's the weather I live for. Today, I woke up in a good mood and feel a bit sentimental so, where was I? I left off talking about my mobilization day and not having any bad side effects from the chemo. This now became a daily wait for my hair to fall out. I know that everyone told me it would take a couple of weeks, but I kept thinking I wouldn't be the norm. During this time of waiting I got to spend time with my daughter, my granddaughter and my mom who all flew to Chicago to stay with me to make sure I wasn't dealing with this alone. I knew in my heart that I would survive this, but there was that voice in the back of my head that kept saying, "What if you don't?" I wanted to make sure I got to see them at least one last time. My mobilization was on Monday February 3rd and that following Saturday, February 8th I started the neupogen shots. These shots help your bones produce an abundant amount of baby stem cells, they will have no memory of my disease and this will be what saves me and delivers me from this agonizing crap that I dealt with on a daily basis, but WHOA, these shots are a BITCH. Sorry for the language, but it was the worst pain ever, like going through child labor again, like someone had taken a baseball bat and just beat me to death. I had to take these shots for 6 days and on day 4 is when it hit me. Slight flu like feeling, achy back, not feeling 100%, I remember taking the Norco that Dr. Burt prescribed me and it barely took the edge off. By that night I was curled up in the bed feeling like I was going to die. I'm sure I took more than I was supposed to of Extra Strength Tylenol and Norco. The Tylenol seemed to help better, but I would switch back and forth because neither of them lasted more than a couple of hours. I remember not wanting to wake Chris up, he was with me by this time and Hailey and my mom had both left. I didn't want to disturb him because he had been such a great help throughout the day, I wanted him to rest. I got up, sat on the edge of the bed for a few seconds, slowly stood up and started to walk into the kitchen to grab more pain meds. Oops, not feeling so good. Am I going to pass out or throw up? I remember leaning against the wall and the next thing I remember I woke up on the floor. Ok, so this isn't going to happen, what was I thinking? I crawled back to bed and woke up Chris. Screw it, I'm done trying to be tough. Passing out and falling to the floor was not a pleasant feeling and very stupid on my end. What if I would have hit my head on the ground? I made sure to wake Chris up for everything I needed and he was such a good sport about it too. Well, day 6 of the shots, bright and early in the morning, 6am and then we are off to the hospital to get checked in and have these bad boy stem cells removed. The goal was to get 2 million. I show up, and am sent to Radiology for have my cath placed in my neck. This is where they remove the stem cells. I am then sent for blood work and wait 2 hours. I finally get the call that my blood work looks good and I am able to move forward with the procedure. They put you in the small room by yourself, you are not allowed to leave, there is no bathroom so if you gotta go, you either go in a pot or you are out of luck so, when I was told this, I stopped drinking my coffee and stayed away from liquids for the most part. Having to sit in one spot for 4 to 5 hours is not easy for me. Poor Chris stayed there with me for most of the time, when he started to get cabin fever I let him go wander around the hospital and he grabbed me lunch. They tell you before they even get started that they can give an estimate on how many stem cells they think they will get. If they don't collect enough that first round, you have to go back the next day. They guessed they would get around 5 million and I was hoping they were right because the next day was Valentines day and it wasn't how I wanted to spend it. I was there for 5 hours, my neighbor in the room next to me was already done and about to leave, I was getting antsy, I was ready to get out of there and enjoy the rest of the evening. Finally, they unhooked me from the machine and we waited for the stem cells to be counted. 5.5 million is what they collected. Let me repeat that 5.5 million. They pulled out the cath from my neck and sent me on my merry way. Finally, this called for a night of celebrating. I celebrated by going back to my hotel room and heating up a frozen dinner, lol. Gotta live large, right?
2/14/14 - Valentines day, how did we spend it? We did nothing but lay around all day watching TV, movies and napping. Greatest day ever. It was too cold to go anywhere and do anything, I figured all the restaurants would be crowded so, we kicked back and just enjoyed each others company. This will be a Valentines to remember. I know that may sound silly, but sometimes it's nice to just slow down, stop everything you're doing and just enjoy the silence.
2/15/14, time to go home. I decided to fly back home to Austin for the break between mobilization and the actual transplant. I didn't want to be stuck in the hotel by myself for 2 weeks, Chris had to get back home and back to work and my friends were all busy with their own lives. Staying in a big city, stuck in a hotel room all alone was not my idea of a good time so, back to Austin for the comfort of home, my dog, my bed, my couch and my friends. The next day 2/16/14, which was a Sunday, I woke up and there it was. The dreaded moment I had been waiting for since the first round of chemo. My hair was falling out. I was told by one friend that "Your hair doesn't fall out just after one round of chemo." Well, maybe not for her, she went through breast cancer, different chemo. I don't know what her regimen was, but I get so tired of people who think they know it all. Well guess what, it did fall out after one round, just like my doctor said it would. I remember getting up that morning and finding hair on my pillow. I walked into the bathroom and pulled on my hair and there it was, a huge clump of hair just hanging from my fingertips. I went to the kitchen to tell Chris and he said he had seen it on my pillow, but didn't want to wake me up. This was a moment of sadness, you know it's going to happen, but it is still hard to see it actually happen. When I took a shower you would have thought we washed the dog in the tub with all the hair in the drain. I spent the afternoon going about my day as normal and by that evening I decided it was easier to take control over this and just shave it all off rather than watch it fall out on its own. This was a very empowering experience. I let Chris do the deed. He got the clippers that we used on the cat, eck I know, but its all we had. He just buzzed that hair right off. Next was going to the tub and letting him shave it with his razor to get that nice smooth, baldie look. Wow, this was freaky and crazy. I felt and looked very weird. Time to embrace this.
Now it was just time to kick back and wait the two weeks before heading back to Chicago. This was the long, dreadful part of it all. You know you are so close to having this transplant, yet so far away.
February 25, 2014
Time to fly back to Chicago. My friend Crusty, I mean Cristi, flew back with me and stayed for a few days. Things were getting real, time was getting closer to transplant time. Cristi's friend Rhea picked us up from the airport and showed us around for a bit. Thank you Rhea, you saved us on cab fair and it was very much appreciated.
Here's my schedule:
Wednesday February 26th, 2014
10:30am
Triple Lumen PICC
Interventional Radiology Department
Galter Pavilion
Northwestern Memorial Hospital
201 E. Huron-4th Floor
Thursday, February 27th, 2014
7:30am
Admit for Stem Cell Transplantation
Feinburg Pavilion
Northwestern Memorial Hospital
251 E. Huron-2nd Floor Information Desk
Wednesday when I went in for the triple lumen picc line in my arm I ran into my transplant buddy Karen. she was on the same schedule as I was so, I have someone to celebrate my new stem cell birthday with. We snapped a few pictures to remember the day. Once I was finished up, I had the rest of the day free. Rhea and her husband met up with us that evening and treated us to Sushi. I figured I better get my sushi fix one last time since I wouldn't be able to have any for several months after. (I cheated on that rule though) I also had a visitor come to my hotel room, a former CIDP patient and HSCT survivor, Bryan Hinkle and his wife Ann. Bryan had CIDP for 20 years, his had gotten to the point that he was in a wheelchair and bedridden. He was ready to just give up on life before hearing about the stem cell transplant and this guy walked into my room like a boss. He went from pretty much paralyzed to walking. He was there for his 6 month follow up visit, he was actually 7 months post transplant though, and HE WAS WALKING. That's how amazing this procedure is. It gives us our lives back. Bryan talked to me about his life, his experience with CIDP and his journey with his transplant and it really did make me feel so much better and gave me so much HOPE. That's my word that I live by, HOPE. It's what got me through this.
Thursday morning rolled around, this was the big day. Cristi stayed with me most of the day. I believe right around 1:30 or 2 I was hooked up to the IV to receive more chemo. This time around it was Rituxan that I received. Bryan and Ann were there with me for moral support. It felt like a family. An hour into and I wasn't feeling so hot. I started feeling a little clammy, I felt flushed, my throat was feeling itchy and started to close up on me. My voice was changing and I felt like I sounded like Kermit the Frog. The nurse called Dr. Burt and I was immediately taken off that chemo. Within minutes I started to feel better and back to normal. That was the last of that drug for me. I now had something I was allergic to.
So, this is how it works. You get admitted and you get a few days of chemo. You count that first day as day -6 and it goes to day-1, day 0 is when you get your stem cells back and its your new stem cell birthday, then they count up from day +1 to day +10. if your blood behaves and your counts are acceptable for Dr. Burt, you get released on day +10, it like being released from jail.
Here are my posts from facebook, this may make it easier since I don't remember everything I went through during that phase of my journey.
Day -6: Admitted to hospital and waited most of the day to get the chemo started. This time around was a different chemo from the one I had at the beginning of the month, well not a good reaction. Apparently there IS something I'm allergic to. My throat got itchy and started swelling up and hurting, felt like I had a severe case of strep throat and my voice sounded almost like Kermit the Frog. Well, Dr. Burt's nurse said NO, NO, NO more for you. Tomorrow we go back to the one I had at the beginning of the month so, for the meantime I'm just chilling in my room watching TV. I have had the chance to meet some great people while I've been here who are going through this treatment with me and one who is 7 months post transplant who had CIDP for 20 years and is 7 months post transplant. He got to the point that he was in a wheelchair and couldn't roll himself over in the bed, today this guy is walking and doing great, he still has some healing to do, but seeing him just gives me that much more HOPE.
Day -5: ROOM WITH A VIEW
Good morning from Chicago.
After the rituxan made my throat swell up and made me sound like Kermit the frog, I received this today as a gift from Bryan-Ann Hinkle with some froggy balloons. Thank you so much, y'all are awesome.
No more updated posts on facebook for a few days, I think the chemo was throwing me into a depression. I do remember getting to a point that I didn't even want the shades opened to look outside. I wanted the room dark at all times and I didn't want to be bothered by the physical and occupational therapists.
Day -5 to Day -2 is Cytoxan and rATG. These are the days I don't remember a whole lot. I think the chemo really drained every ounce of energy I had, all I wanted to do was nap. I do remember the chemo making me a tad nauseous, although they had drugs for that. The bowels didn't have a favorable reaction to the chemo either, nothing major, but you sure had to watch every move you made as I had to find out the hard way, I just simply rolled over on my side and Oops!! What the hell? I'm soooo embarrassed, praise the lord above there was no nurse in the room with me. I'm sure they deal with this on a daily basis, afterall, I was on the cancer wing of the hospital where all of Dr. Burt's transplant patients stay. I got up as quickly and carefully as I could, grabbed fresh drawers and hid in the bathroom, dragging my IV pole behind me. Please dear god, do not forsake me now, I beg you, PLEASE do not let anyone walk into the room while I am trying to take care of this business. My dirty drawers go right into the trash, wrapped up in a trash bag. Hopefully nobody will know what it is or which room they came from. Ok, all cleaned up and ready to tuck myself away in the bed. NO MORE rolling over to get comfy, not without squeezing those butt cheeks together nice and tight.
Ohhhh, I remember those moments all too well. I never had another accident, but I sure learned to move fast for a disabled person who had a hard time walking. I was still abled enough to make a quick dash to the bathroom. Bam, I beat the diarrhea, it was NOT going to get one over on me, not anymore. This was a challenge everyday until the chemo was stopped.
Day -1, March 4th, no more Chemo and this is the day that Chris showed up. Cristi had left on March 1st, so I had some days that I was there alone, kind of lonely, but kind of peaceful too. See Chris walk through the door made everything better, I wanted to cry I was so happy to see him because honestly, this is not something anyone wants to go through alone and I wanted him there when they put the stem cells back in since 1. It's the time that you are more susceptible to death and 2. he was there the day they took them out. If I died, I wanted him to be the last person I saw, I wanted him there to be the one to hold my hand. Nobody else could fill those shoes, only him. I don't think he understood when I told him this in the beginning as we did get into a fight about him being there. he didn't want to miss the time from work, why couldn't I get someone else to be there with me? He just didn't get it, but I think I finally hit him as the days passed why I wanted him there. Things kind of went south a couple of times and it had us both scared and worried, him more so than me, I think.
This is becoming more emotional for me as I write this. Remembering back to the transplant, the posts on facebook, the anticipation of how this is all going to work out and fall into place.
DAY 0: March 5, 2014 The big day, the big daddy of them all. TRANSPLANT DAY, except wouldn't you know it, it wasn't that big of an event, not like you think it would be. The hospital chaplain came into the room to ask me if I wanted my stem cells blessed and I told her I did, I cried the whole time. Explaining my story to her, my relationship with God, or lack thereof until I got sick, my appreciation for everyone who has been there for me and helped get me through this, is was an emotional time for me. This is going to cure me or break me. At 10:30am they came into my room with my stem cells.
My stem cells were being kept in this vessel
My stem cells being administered back into my blood
For something that I thought would be a huge event and a party, it took 10 to 15 minutes to be put back into my system. Happy new Birthday to me.
Now....we wait.
Day +1. March 6 Today was supposed to be more Rituxan, but not for me. I wonder how this will affect things, my recovery and healing? Will have to ask later. I don't remember if it was the night of Day 0 or this night, but at some time, I had taken a turn south. My heart rate was speeding up, breathing was getting harder, especially when I would go to lay down. I had to sleep sitting up. The first night it happened I told the nurse about it. She called Dr. Burt, the poor guy I bet gets very little sleep. He order a chest Xray and an EKG. They woke Chris up to leave the room while I was having the Xray, nobody was allowed to be in there, not even the nurse. The next morning, everything came back ok on the Xray. What was causing the breathing problems then? This was frustrating because it happened two nights in a row. They even put me on oxygen and a heart rate monitor. UGH, this is irritating me because I do not like the feeling of being tied down or restrained.
Chris's facebook post, Day +1:
Update on Stacey Turley DeMatos, since she's pretty tired and weak right now. She got her stem cells back yesterday and rested the remainder of the day. A 2AM vitals check revealed a continued raised blood pressure, and shortness of breath from fluid in her lungs. She's been getting medication for these as it's been an issue for the last couple of days. A call to Dr. Burt lead to a 3AM chest X ray and EKG. Dr. Burt checked on her this morning and said she would be fine. A platelets transfusion, mores meds (including Benadryl), and now she's trying to sleep, though it's been difficult as she's having to sit up cause of the fluid in her lungs. Poor baby, hopefully this will be short lived.
I don't know how I missed some of his postings, because looking back now, I had no clue he posted some of this stuff.
Another facebook posting, Day +1:
If anybody could take a moment to do this, Stacey Turley DeMatos, and I, would really appreciate it. Physically, she's probably at her lowest today. Friends that know her, know smiles come easy to her beautiful face. Don't think she's smiled today.
Room is 1563. Building is Prentice. Thank you in advance. It's free and takes only a few moments.
Room is 1563. Building is Prentice. Thank you in advance. It's free and takes only a few moments.
This has really brought tears to my eyes. I'm sitting here at work right now wiping tears from my eyes. I hope nobody turns around and see's me.
Here was Chris's facebook post on Day +3:
Update on Stacey Turley DeMatos. She's doing better today. Dr. Burt thinks she's over the worst of it and is taking her off the oxygen and heart monitor. Vitals are back to normal except the heart rate which is down to around 100 from 120. Her platelets and blood cells count is still low so she's getting blood right now and more platelets next. Finally, she's getting a little of her appetite back, having just had Cheerios and yogurt for breakfast. I apologize if I scared anyone yesterday. I was a little scared myself, but she seems to be doing much better this morning. Even got a laugh out of her this morning. . Love you guys and thanks for all your support. It's really made all the difference in this side journey we've been put upon.
My Platelet transfusion
Day +3, Saturday March 8. More blood and platelet transfusions. Will I ever have a day of peace, no IV being hooked up and me having to drag that damn pole everywhere I go? This is getting tiring and frustrating. I know its for the best, but it doesn't mean I have to like it.
Chris goes home tomorrow, not sure how I feel about that. I remember these feelings clearly. He was a saint while he was there with me. Never complained once, except for the couch they have for overnight guests to sleep on. It was not comfortable at all and since it sat right by the window it was also cold. It was so nice to have him there to make sure I got everything I needed, but I do not miss the mornings when he would go grab his morning coffee and bring it into the room. The smell made me sick to my stomach. I don't think I ever told him that, I didn't want him to leave the room to drink it, maybe it was selfish on my part, but I wanted him there with me. He always kept my room tidy and brought me stuff to eat from downstairs if I wasn't up to the hospital food that was delivered to the room. The last day he was there he even took my laundry to get washed at the Worchester House. what was I going to do without him? But, another part of me was ready for him to go, to be alone and not feel like I had to entertain him, even though he never pressured me to entertain him, he is fine just sitting around watching TV or reading, but I felt bad for him because I know it wasn't a lot of fun for him.
Day +4, Sunday March 9, Chris goes home. I'm relieved to a point and sad at he same time. I cried when he left, I don't think I ever told him that, but it was nice to have his company. Today consisted of more blood and platelet transfusions. The story of my life for the moment. I remember some of my blood transfusions going until late in the evening because they had to wait on the blood bank to get the right blood to me. Unfortunately I have the rare blood type so I can only take O blood. Platelet transfusions only took maybe 15 to 20 minutes, blood transfusions on the other hand, took hours.
Day +5, Monday: My post from Facebook:
Day +5 Update: I received a ton of cards today and want to thank everyone who sent one to me, I can't go name by name because there were too many, but you all know who you are. Still feeling tired, but I feel good, more platelets and a blood transfusion today and no bad side effects. Just chilling in the room watching a bunch of trashy TV and napping
Ohhhhhh those cards. I still have them. I remember when they were delivered to me and I opened them. It was a huge envelope. Each and every one of them touched me in more ways than you know. I got cards from complete strangers who knew Chris, cards from my closest friends and cards from some that I had just met the day I was admitted into the hospital. I turned into a big baby and cried. I'm beginning to see a pattern here, I cry a lot, or at least while going through this journey. I couldn't be more grateful to Chris for posting on his facebook page asking people to send me these cards. I never realized how something so simple can touch someone so deeply. Mental note, start sending cards to people who are currently going through their transplant.
I have lost a lot of my postings because I would update on my go fund me page and they no longer allow access to past postings. This is not good. I can't remember what happened between day +6 and day +10 except more blood transfusions and more platelets, more visitors, one is a former transplant survivor who had it for Scleroderma, Britney Schulz-Helm. Her and her mom would come to visit me on a few occasions and I remember the last visit, my feet were so swollen that none of my shoes fit me and I wasn't smart enough to have brought my house shoes with me. They ran to Walgreens to find something for me and found a pair of slippers that had nothing to secure the shoe to my ankle so, I couldn't keep them on my feet.
Britney and me
I had other visitors too, most were future patients who were there for evaluation to see if they qualified. Leslee Pannell, Debbie, and Michele Wickman. These were my favorite visits, the past, present and future patients of Dr. Burt. We are a big family, connected and bonded because of something terrible that happened to us, brought together because of the miracles Dr. Burt is creating.
Ok, so lets fast forward to release day. Day +10. Saturday March 15th. OMG, FREE AT LAST. I am so tired that I'm to the point of no longer caring about being nice to people, even though I had managed to keep my manners, it's very hard. I am beyond exhaustion. When they told me I could leave, it took everything I had in me to get my stuff packed up and ready to go. THIS is when I needed someone the most and the person I had scheduled to come, even though I told them I needed them there first thing that morning, did not show up until later that night. I was left to do this by myself and I was not a happy camper. Every bit of energy had been sucked right of me, my feet were swollen and in pain, I had no shoes to wear and I was weak. Luck was on my side though, I got help from the nurses assistant, Phil. I packed everything up the best I could, I had an attendant who brought up a cart for all of my stuff and Phil helped get it all downstairs and into the shuttle for me. I was on my way to the hotel and ready to pass out. Once I got to my room and had my luggage delivered to me, I did just that, I passed out on my bed for 4 hours and took me a peaceful little nap. I still had no strength and energy, it was painful to try and walk because of my feet, but I managed to make it to the couch to relax the rest of the evening until my friend April got there. So, I know I complained that she didn't get there when I needed her to, but I couldn't have made it the rest of the time without her. I was released on the 15th and I didn't flu home until the 19th. I stayed in bed that whole time, only getting up long enough to shower and use the bathroom. All meals were brought to me from April until the last day I was there. On March 18th my friend Brenda flew in. She went through her transplant in October 2013 and she was there for her 6 month check up and was also there to celebrate her birthday. That night, we went to dinner across the street at the Rosebud Steakhouse. I gathered up all my energy to go to dinner that night, I was determined not to let this keep me down and I wanted to get to know Brenda better. We had been chatting through text and email since September and we finally got to meet. She was my hero, my inspiration and my friend. We spilled our guts to each other over the months, I knew so much about her that she was a friend, not a stranger I met on facebook.
So, dinner at the Rosebud Steakhouse. This was a fun evening. April treated me and Brenda which was a nice gesture and very much appreciated. After dinner we decided to snap some pictures with our Iphones to remember the moment. This very sweet girl came up and asked if she could take our picture so that all 3 of us could be in it, we let her of course. She's telling us, don't look at the camera, look at each other, be casual, don't pose. Secretly in my head I am thinking, "Who is this girl, does she kn0ow what she's doing?" Well, mentally I stuck my foot in my mouth because come to find out, she's a professional photographer. Her name is Jessica Drogosz and she is an angel straight from heaven with a heart of gold. She took all kinds of pictures, which ended up being taken from Aprils phone so I don't have all of the pictures taken, but here's one.
That was an awesome moment and we had so much fun, thank you Jessica for capturing this for us.
MARCH 19, 2014 Time to go home. Finally I get to see Chris again, I get the comfort of my own bed, my couch, my dog, everything that makes me feel at peace, is at home.
My facebook post from march 19:
Home Sweet Home. When we got to the house I told Chris to let me get settled on the couch before letting Bam Bam out of his cage. Once he let him out I was the first one he ran to, guess he missed me after being gone for three weeks
Hmm, that's all I said? I guess I was still pretty tired and wore out from.
The next several days are filled with couch camping and several daily naps. No strength or energy to do anything at all and visitors are almost non-existent.
My facebook post from Sunday March 30th: Ok, slowly here and there people have been asking me how I'm doing, I normally give my blanket answer that I'm doing Great, tired all the time, but doing wonderful. It's mainly because people don't want to hear the bad stuff so, it's time to remove the poker face and be honest. My days are filled with laying around watching TV all day and napping, my legs are weaker than before I went into the hospital so I really have to watch every step I make. I've already fallen once at Walgreens simply trying to step up on the curb and didn't have enough strength to get myself up, so down to the ground I go. I get winded and short of breath just walking from one room to the next, some nights I have to kick Chris out of bed and make him sleep on the couch just so I can raise the head of the bed to help my breathing. I have about 8 medications I have to take everyday and I hate taking pills. One of the medications is for high blood pressure that I suddenly got, hopefully that one will go away soon. I haven't had too many changes yet, but I know they will come, just right now, I don't feel like me. Hope that sums it all up and that's why I haven't been posting on FB lately. This too shall pass.
WELL, little did I know, I would land myself back in the hospital that night. I was running a fever of 103 and Chris insisted on taking me to the emergency room, as that was on the list of rules from Dr. Burt. When I got there, they wasted no time getting me back to a room and isolate me. I guess when you tell them you just had chemo and you now have a fever, it lights the fire under them. I figured it would be a quick trip, give me some meds, tell me everything was going to be ok, but SHIT, they admitted me. I cried when they said I was going to be admitted. Chris looked at me and asked "Baby, whats wrong?" Through tears I said, "I just spent over 2 weeks in the hospital, I don't want to go back, its lonely and miserable." "It will be okay baby, they need to find out what's going on and you would rather be safe than Sorry." That was what I got from him. Dammit, he's right, but it didn't make it any easier. Another night of very little sleep because once they got me to my room I had more blood work, more questions, and more tests. When will this be over?
Four nights later is when it was finally over. I was able to go home, they really never found out exactly what was wrong with me. They threw out the term CMV, which is a virus that over 80% of the population carries within them, but their immune system keeps is under lock and key. With no immune system, it rears its ugly head. The day after I was admitted was the first time after going through all of this that I threw up. I begged Chris to bring me some Whataburger. I was craving their fries the night before so Chris brought me friends and a cheeseburger. I ate a few fries and I was fine. Chris is talking to me about our friends J and Lin and I take a big bite of my burger, I'm chewing it and enjoying every minute of its juiciness, Chris keeps talking and suddenly I tune him out. I don't get that hot clammy feeling, but some kind of feeling that says things just aren't right, this shit is coming back up. I focus on Chris trying to keep it down and finally ask him to hand me this little plastic container you find in all hospital rooms, I have no idea what its called, but he grabbed it and it all came back up. All through the chemo process I managed to not get sick and then this happens? Once it was out I felt better, but that burger and fries went straight to the trash and I barely ate the rest of the time I was in the hospital and that lasted for several weeks later. I barely ate, my appetite was almost non-existent, after a few bites of anything and I was full. This may explain me losing 40lbs in just a couple of months. I went from 175 down to 135. I don't remember ever weighing that since high school. I looked sick. Chris told me I looked gaunt. That kind of hurt my feelings, but he was right.
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