 |
    |
After the Transplant
When we brought him to the hospital, they told us he needed a heart transplant. And six weeks later he received the heart, and it was like being reborn. He did stuff he was never able to do before. We were out of here in 12 days and he was out of the ICU in one day. He thought that it was just like an outpatient procedure. He felt so good that he sat up in bed with the respirator on and said, “Okay, can we take this thing out and go home?” That was how good he felt. It was a totally new and different life than what he had before. Because I had no expectation of what was going to happen after, I cried everyday from happiness when he would do something that he couldn’t do before. That was just, to me, unbelievable. I said so many times, “Are we going to make it?” and here we are, 19, so you hear that and you think you just never know. It’s not really up to the doctor; it’s up to the patient and God. We don’t have any control. I wish I hadn’t been so consumed and worried so much, because I wasted a lot of time doing that in a situation that I really couldn’t control anyway. I think I thought I could control it with worry, but I couldn’t, and it was harmful to me. It affected my health, everything. Right now, I’m trying to take care of myself still, and have strength. And basically he’s had very few illnesses until now and the transplant was nine years ago. He’s done really well up until this visit. Heart
We have been busy trying to establish a new routine in our life. I can honestly say that I know the miracle we are living is so great that its reality has yet to hit home. Chris still travels to the hospital twice a week for his checkups. My husband goes with him on Mondays, and I go on Fridays. So life has taken another adventurous turn for us all. Life post-transplant is so much simpler. I don’t regret a moment of the experiences we have had to date, but we constantly keep realizing another restriction by which we are no longer bound or another chore we won’t have to perform again and each realization is that much more glorious. Life is so simple: measuring blood pressure, temperature and weight, giving him a fistful of pills at 9am and 9pm and keeping track of his fluid in and fluid out. That’s pretty much it. The rest is mostly common sense. Maybe I’m a little blasé here. But I’m going to do what we’re told and call the doctor if I have even the slightest question. As for my son, I still can’t find words to describe the new Chris. That’s the miracle. He cooks, more than ever, he giggles in his sleep, he’s becoming a cartooning maniac, he remembers things, and he’s so full of hopes and dreams and schemes that I can hardly keep up with him. Now I know some of this is the Prednisone, but life is truly glorious. We’re all kind of giddy. I know there may be problems ahead but this new kidney is the best vacation I have ever had and even a month’s worth was enough to retrieve joy from its hiding place. I am still searching for the words to describe all of this.
You can accept that all of this is happening to her, but what’s hard is that she’s had a couple of close calls in the hospital; she’s had complications with her transplant. And that’s what is scary because they were really close calls. Even at my house, in the backyard, she had a very bad experience with her stomach and abdomen and fell over in pain, and she had diarrhea and throwing up. We took her in to the emergency room and they sent her home after four days but she still hurt so badly. Both of us were scared, and I do think about the fact that death is a threat and can happen. So that was scary, knowing we were close to death and knowing what happened. She still has pain but it’s getting a lot better. These little things happen on the sidelines and we try to be strong for that.
My daughter’s life is very normal now. She’s very social and it’s important for her to fit in and it’s important for her not to be different. That’s very typical of a middle schooler, of an eighth grade girl; the peer thing is huge. She finds all of the things that are a little over-the-top important, like how your make-up is or how you’re dressed or all of that stuff. But she’s also very sure of herself in many ways that other children aren’t. She’s dealt with so much more. I tell her that many people, if they ever reach the value that she has as a human being, they reach it in adulthood. She has so much to offer because she has been through so much. You take those experiences and you do things with them; help other people to understand that they can cope, that they can get through it. And do it with humor.
I’d never been in the hospital before and it was weird. She didn’t look normal; she was pale. I was scared when I went into the [hospital] room. She was able to talk, but she wasn’t talking normal. She was really cold. Her face seemed really scared. When she came home she was so happy because she was just glad to be home. Everybody was excited. She was still kind of sick and she was on a lot of medications, but she seemed a lot better. I want to say that it’s kind of freaky at the beginning but you just got to remember that they’re the same person and they still love you.
First of all, prepare your child that she’s not going to feel like getting up and running around the block the minute she wakes up from the transplant surgery. It is surgery and you’re going to feel really crumby, initially. You always need to do exactly what the doctors and nurses tell you to do; that the more resistance you put up, the hard it is for yourself and for them. You need to make sure you prepare your child for the fact that, even when they are feeling crumby, they do need to be kind and respectful to the people who are caring for them always because that kindness will come back to them in return. Every day it gets better and every day is an improvement for everybody all the way around. Also, know that when you’re going through that first year post-transplant, some children have absolutely no hitches and some children have a bumpy road. Be ready for either; don’t be shocked, don’t be terrified, and just maintain, because the first year is always the worst. A myriad of things can happen because they are changing medications and other things. You need to be really focused, because what tends to happen is that you want to get them to the transplant so badly, because you see them suffering— they’re on dialysis or they’re toxic as Riley was— and I just couldn’t get to the darn operating room fast enough. But understand that that’s a transition; yes, she will feel better but there’s still more work to do. Prepare your child for that. You have to do that very carefully. You need to set goals for them.
They can’t be in day care; they can’t be around other kids. We have friends that have kids, and that is hard, because we have to put a note on the door, and say, “You can’t come to my house.” That can be hard, but then you have to realize that this is the health of your child. So what if people get upset because you’re being rude? They just need to understand. I worry about hurting people’s feelings when we’re at home or in the grocery store, and someone wants to come up to him, and I have to say, “Three feet rule, three feet rule.” It’s just safer when we’re out in public. And, no kids— one of my best friends has a six year-old and a four year-old: the six years old can see him, but the four year-old cannot. That can be hard. It’s hard to find somebody to watch him, if I need to go out to the grocery store or the drug store for a little bit; people worry about getting sick. It’s a lot easier now, after the transplant, because he doesn’t have as many meds now as he did before or they’re all on timers, at different times.
Because prior to the transplant we had had another serious medical challenge, I think the most stressful thing for us was the fear that the post-transplant period would be as challenging as that experience had been. In fact, it wasn’t challenging at all. I think I never experienced the process as being stressful, frankly. My donor surgery went very smoothly— it was much easier than I anticipated, and I was very comfortable going into it because I was able to prepare and put things in place. I had expected to be quite physically uncomfortable afterwards, but I wasn’t. My pain was so well managed that I didn’t have pain- it was amazing. Of course all of this is individual, but that was my experience. My son’s recovery was also fine. It was easy, I would say. I was out of the hospital before him, but we were both out within a week. It was all very smooth; he did not have any real discomfort and his pain was completely managed. He was fine— he felt good. Since he was a child, he healed extremely quickly.
My son’s life is excellent now. He can do anything he wants to; I don’t think he is limited in any way. He is immunosuppressed, so he has to be careful to wash his hands a lot. He does that, but it’s not much of a burden, really. And he hasn’t had any medication side effects— the medications have been very smooth for him. I think he is a stellar case there; it’s great.
I hope that everything continues to go smoothly for my son. I’m fully aware that he has a chronic illness and that transplant is a treatment and not a cure, and I just hope that the treatment continues to go well. I would say that we’re doing extremely well now.
For the first time in years and years, she was able to swim underwater. I remember her saying, “Hey mom, count how long I can swim underwater!” And I remember being very nervous about that. [Mother of a 23 year-old lung transplant recipient]
I would say you still have to be aware and alert to all of the signs that things may be not going well. And still be their advocate, get on top of it as quickly as possible, and make sure everything is being done that can be done.
When my son had his first transplant, he was only four years old, and he pulled through it like nothing. Having been in and out of the hospital and on dialysis for a year and a half, he didn’t show any sad emotions. He was actually happy. When he lost his transplant it was disappointing— very disappointing. I had a lot of guilt, thinking that my kidney wasn’t good enough, because it was my kidney that went into him. We were very concerned and didn’t know what was going to happen. He lost it so fast; it was scary. We thought that he would go into rejection right away, since the kidney was coming from someone we didn’t know, and we didn’t know how their body function was or their history. It was scarier this time than the first time. After the transplant, he was fine for two days, and then he ended up getting septic near his peritoneal hole, so that was very scary. He was in intensive care for a couple of days and had to have antibiotics. He had to have dialysis to get his kidney moving along, and while he was on dialysis he had a stroke. We never knew that this would happen; that was the scariest part of this whole last episode with his disease and rejection. But he pulled through it 100%, and since then he has had no problems.
About two months after the transplant, I really worried that we had made the wrong decision, because she had done so well on dialysis, and the transplant had brought so many problems. I really worried that doing the transplant had not been the right decision. Another parent and I met in the ICU and talked; our daughters had been transplanted a day apart from each other, and she said that she felt the same way. It just felt so different than what we were used to. My daughter had been on dialysis for six months, and we knew how to do that. Transplant was just a whole new regime. We went to camp up in Maine, camp Sunshine, and we met a lot of other families that had had transplants, and that helped tremendously. So many other families said the same thing: that there was a time period where they weren’t sure what they had done. For probably about six months after the transplant, we were getting used to it- getting used to the meds, getting used to the new way of doing things. Then, all of sudden, things got better. My daughter’s nephrologist at home had told me early on, “Dialysis is going to consume her life, and will be all you will be able to think about. Right now, her kidney disease is an enormous part of your life. When she has the transplant, you’ll find it is just part of what you do, and it doesn’t consume you anymore.” Of course, at the time, I didn’t believe a word of what he said! But it was true. We saw that happening; more and more, we saw that we could do what other families were doing. We could stay out past seven o’clock, because she didn’t have to rush home to get on dialysis, and we could take her places without worrying that we were going to have to run to the emergency room. It is still always there; it’s always something we consider before we do anything. But the transplant did change things from crisis mode all the time to just being aware.
It was hard not to be able to see my daughter after the transplant. When I did go and see her, it was shocking because she looked pretty bad. However, they had told us what to expect— they had told us that she would be very swollen and that she would have a lot of tubes and still be on the ventilator— basically that she wasn’t going to look like herself at all, and she didn’t. But since we knew that, it was less of a shock than it would have been had nobody told us. It would have been very upsetting otherwise.
I can always call the transplant nurses and ask them even silly questions. They often tell me, “You don’t have to put your daughter in a bubble; you can still do things, and you can still go places.” Kaila is actually getting ready to start pre-school in the next few weeks, and that is a major event. It is something pretty normal for a three year-old to do, so that has been exciting, seeing her get ready to do stuff that is normal. It is always a balancing act between keeping her healthy, making sure that all of her meds on are time, making sure that everybody she is with, school or a babysitter, knows about her transplant… and then, for me, letting go of some of that, and letting her have normal experiences.
It was only a couple of days before she woke up and started moving around a little bit. She was still very alert. Then, a couple of days after that, she just started moving around; she seemed a lot stronger. Obviously her appearance was better: she was no longer blue, and she was getting good blood supply. Her personality was still the same— still a little spark. She’s definitely a little fighter. But we noticed right away there was just something about her— she moved a lot easier, she wasn’t struggling, and she looked more comfortable. Even after a big surgery like that she bounced back really quickly.
One of the most stressful parts, I think, is the constant back and forth. We are only a couple of hours away, but the amount of times she’s been admitted has been stressful. She’s been admitted a bunch of times before, after ER visits and on a planned basis. You come to an appointment and she gets admitted— and you thought you were just coming for a quick appointment! So I think not knowing the day-to-day things and bouncing back and forth from home to the hospital is hard. But you get used to it; you learn to cope and you learn to pack a bag when you come just for an appointment in case you get admitted. But that has been the hardest thing for our family, because we have a daughter in school and one of us tries to stay home for her. I think it’s just a balance between work, taking care of her and giving her what she needs, and trying to take care of our other daughter and giving her what she needs.
After transplant she was like a different child. Before she was so tired all the time, she cried— not often but she did, and she was upset a lot. We found out that she had been having really bad headaches from the second surgery. But now she is a different child. She’s only two weeks out of the hospital, and a month out of surgery, and she’s sitting up by herself; before she never sat up. She’s rolling over. And she’s done all this in the last week. And she’s talking up a storm— she talked a lot before but she’s talking more and more, and babbling. She’s sort of behind, and all of these little steps that she was supposed to take are happening at once. What a different child she is.
Here at the hospital they have pictures of all the kids who have gone through transplants. We saw a little girl that had a transplant right before she was one, I believe, and she’s seven now and the picture that we saw was of her in a soccer uniform. It brought tears to my eyes. I thought, “Oh my god, they can play soccer!” That was a huge help. Stories from other families, I think, are a big thing too. Get as much knowledge as you can. Just keep on top of everything. It’s hard, but it’s worth it.
We always say that she got a kidney for her birthday; she had just turned four and then she got the kidney. Then she was in the ICU, and it was devastating at times— she was so sick. One nice thing was that they threw her this big birthday party in the ICU with cake and balloons, and the clowns came and there were lots of laughs.
We thought she was supposed to get her kidney and then it would be all better, but we went home and the kidney didn’t work. They were supposed to put her in the ICU for two days, pending her heart rate, and she ended up spending 3 weeks in the ICU on a respirator— because the kidney wasn’t working her body was filling up with fluids and it hurt her lungs. At one point they were trying to decide which to save, the lungs or the kidney. So it was different than we expected. You have everyone saying, “Did you get the kidney? When you get the kidney everything’s going to be okay.” And she took weeks— it was weird. And when we got home it was really weird. My husband and I talked about how you come in to transplant with a kid who you can only give so much fluid a day, and who had very low blood pressure because she had no kidneys. And we get her home and instead of only being able to give her 600 CC’s a day we have to give her 2,000 a day. And instead of having low blood pressure she had high blood pressure. It was totally different— completely opposite. It was bizarre— everything was just different. A friend of mine and I were talking about how with dialysis and renal failure, we knew how to do it. We didn’t know how to take care of a kid with a kidney. The meds were different, the feeding was different, the fluids were different, and the things that could go wrong were different. It was just really strange. It took a long time to get used to that.
Develop a good relationship with your pharmacist. The pharmacist at the CVS down the street from us is just fantastic; I can’t say enough about the guy down there. You need for them to know what’s going on and what you’re up against. Fortunately, there is a CVS in the hospital lobby, and we said, “We’re going to fill all of the prescriptions down there.” But they didn’t have them all, so we went up to the pharmacy on the corner and filled the rest there. Then, I just had them all transferred. That, to me, seemed to be the best way to do it. The hospital did talk about having some stuff being mail-ordered, because one issue with Suzie is that we changed some of her medications at home depending on how her labs were going, so it was easier just to have them call it in to CVS. That worked out really well. You go to see the pharmacist a lot after transplant.
Hello, This is the first Christmas greeting I am sending. It is also the most important note I will ever send. I guess the thing that makes this so strange is that you are someone who I may never know. I am Chris’s mom, and am writing on his behalf. He has been a patient in the hospital for almost two weeks now. He was pretty sick at first and spent almost a week in the intensive care unit. The Chris who was admitted to the hospital is not the same Chris who now rests in his hospital bed near me. That Chris was a little skinny and he got tired pretty easily. He didn’t sleep very well and had to work pretty hard to keep up with his buddies. He seemed confused a lot of the time and no matter how much he brushed his teeth he still had pretty bad breath. Chris had learned his way around a few too many hospitals. He knows medical terms I am sure he will never be able to spell. He’s spent a lot of time in operating rooms, taking medicines and being hooked up to all sorts of machines. He knows more about sickness and disease than most of us ever will. And he’s only ten years old. The child who now reclines beside me woke me up at 6:30 yesterday morning, eager to get on with the day. Later he read to me with an excitement and passion in his voice that I hadn’t heard for years. It’s wonderful to have him back. He’s still pretty sick but now it’s from the surgery and the new medicines rather than from the kidney disease that has plagued him for his entire life. He gets better and stronger every day. We are truly living a holiday miracle. I wish I could explain the pain with which I have lived because I didn’t give birth to a “perfect” child. For years I have known that although I am healthy, I am the wrong blood type to be able to donate a kidney to Chris. There is no way that I can ever thank you enough for the gift you have given to my child. It will always bother me very deeply that my joy had to come embraced in your loss, especially because it is the holiday season. This is the season of miracles and you have helped to bring about a miracle in our lives. Chris is a wonderful, loving, cheerful, musical child and I thank you from the bottom of my heart for giving him back to me.* * A mother wrote this to the family that donated a kidney to her son, on Christmas Eve. Dear Friend, It is often difficult to explain how it feels to live a commonplace existence in the wake of a miracle. That is what our life has become, commonplace. Maybe it is the fact that we waited so hopefully for the three years that proved to be an eternity— I just don’t know. As we come close to the anniversary of your gift, I am often amazed at how unaware I was of how quickly our lives would change. We have begun our holiday rituals. This year, once again, the children danced in our local production of Nutcracker, but this time Chris was unhindered by the impediments of dialysis and frequent medication rituals. There was a lightness in the air— an almost giddy freedom that came with knowing that all we needed were gray slippers (he was a mouse) and a few pills for six o’clock. It was a wonderful performance and the entire company joined in our delight seeing the contrast to the bad old days when Chris couldn’t dance because he was too tired from the endless hemodialysis and too sick from the infection. In his health and vibrancy, I am constantly reminded of the gift that you and your family have given to us. I wanted to share with you a wonderful revelation I came to recently. I think the miracle of transplantation is so very special because it represents the best things that mankind is capable of. We live in a world of technology and science; the quality of the medical technology that makes transplantation possible is unequalled in the world. But for all its efficiency, transplantation cannot even begin unless someone like you, in the midst of the worst crisis of your life, is able to hold on to a shred of faith in the wisdom of the creator and the ultimate goodness of mankind. Your faith in mankind has been well placed. You have given my son a second chance and restored my faith in this strange process we call existence. I can only hope that the wonder of my son’s new life might provide you with some solace at this sacred time of year.** **This was written to the same donor family one year later.
It’s definitely good that now there are normal kinds of problems. She’s 14 years old, so it’s like, “Can I call boys?” “What if I want to go out on a date?” It’s good to be able to deal with stuff that is normal developmentally, and to put the other things in a shoebox and stick it up in the closet with all that old stuff. She’s been making plans, and she’s gone back-to-school shopping with one of her friends. She’s definitely going back to school, and she’s thrilled. She’s talking about what sports she wants to be able to do, and it’s really nice, again, because it’s all normal stuff. She doesn’t have to worry about, “Will I be able to get to my next class on time?” What if I need more oxygen?” “What if I don’t feel well?” Those aren’t any of the questions that have come up.
I think the hard part for me has been letting go of the feeling that the other shoe is about to drop every time I turn around. While that feeling is there, you have to find a way to keep a balance so that you’re also taking advantage of being well and living in the outside world. We have been getting back in touch with all of the things that we had to do when we weren’t part of this microcosm. The hospital was a world unto itself, and now I’m a part of the outside world again; I’m getting a job to support us and all of those things. I was looking to get another degree, but because of coming in to the hospital I put that on hold. But now I’m starting that again. I don’t know how far I’ll get, but I’m starting again.
|
Positive response to heart transplant
Post-Transplant
Three Feet Rule
Underwater
 |
Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
 |