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Before the Transplant
My daughter was born with a heart defect. I knew prior to her being born that she was going to need to have surgery and that she had a problem. At that point they did not know how complex it was. She was in congestive heart failure when she was 14 days old and had her first heart operation at 14 days. It was scary, because everything was so new and it was sort of hard with a brand new baby, to think about letting somebody do something that would hurt her. I think in a way it got scarier as it went on because she got to be more of a person— I knew her better and obviously as kids grow up you’re closer and I think the emotions are stronger and everything else. She had her second operation, or her first major operation, at Children’s Hospital when she was 11 months old, in 1990. She had the next one the following September and the third one the October after that. The second operation that she had, I think was the most difficult because it took so long. She was in intensive care for a long time. For some reason, she was very sensitive to my voice, so I couldn’t go in to see her or anything. And that’s really difficult, because I think all I want to do… even now, a lot of times, my basic emotional feeling is I would like to pick her up and hold her and carry her out! And not even being able to see her I think is even more difficult than that.
Obviously the biggest question before transplant is, “Should I or shouldn’t I?” There are a lot of questions about what happens if we don’t transplant. Where do we go and when are we going to be there? I think that’s one of my biggest questions. I’m also concerned about what kinds of things we might have to be doing afterwards, even though I’m not as worried about medication and things like that. She takes so much medication for her heart now that she’s likely to be taking less after transplant, which is probably not a bad thing. There are also some issues about immunosuppression and rejection specific to my daughter because her system is more sensitive, so the team is trying to figure out other ways to work on immunosuppression and things like that. So in our case that’s a concern as well.
I guess I just had a different mindset going into my son’s transplant. I knew we had to do it; I just never gave it a second thought. I think because his life was so much better after the transplant it seemed… not effortless, but a small thing to do. With all of his previous visits things were so much harder. This was easier.
The information about my son’s transplant came a little bit at a time, and I have to say that I probably had some selective listening and some selective comprehension. The doctor explained to me about the fact that we might need to go on to transplant. She told me about the Kasai surgery and that the Kasai could delay the need for transplant but that children with biliary atresia almost always need a transplant. I held on to the “almost” and decided that my son wasn’t going to be one of those, and that the worst that we would ever have to deal with was just one surgery and we would get him all fixed up. I really didn’t have a good idea of what we were dealing with until after his Kasai surgery when we were in the hospital, and I started getting information about infant liver disease and biliary atresia specifically and really paying attention to it. Then it was scary, and it was upsetting, and I had a good comprehension of what we were up against, but I still had a pretty hopeful outlook and thought that we would deal with this and that we would probably have the best scenario. The only thing that was scary to me was the symptoms of advanced liver disease, because I just had a really hard time thinking that I’d have to see my child through that kind of illness and suffering. I was also concerned that maybe we wouldn’t be able to keep him— that maybe we would go through all of this and he still wouldn’t survive it. And I was worried about my other children because they already loved him and were attached to him. And what was it going to be like for me as a mom to see them through their brother’s illness and then possibly their brother’s death? It just all depended on what I was doing and whether it was a quiet time for me or not, because most of the time I was busy taking care of Steven, but when it was a quiet time and he was sleeping and I had a chance to think about it, or perhaps when we were home and I would see his big sister holding him or something, it would strike me that we had an issue that involved a lot more hearts than just my husband’s and mine. So it was difficult, it was very scary, and it was overwhelming. When we went in for the meeting to plan Steven’s liver transplant, it was kind of surreal— I couldn’t believe that this was normal and part of the real world. But we stepped through it one day at a time.
The most difficult part of the heart transplant was the waiting. We didn’t really wait all that long; we waited six weeks. It was very hard during that time. My head was just pretty much spinning at that point. And then when he finally got it, I was relaxed going into the surgery because I just knew that he was getting a normal, functioning heart. We had exhausted every surgical option and what they were putting in would work better than whatever he first had!
I think the hardest part of the transplant experience for me was the uncertainty. Not knowing whether it was ultimately going to work, how long the recovery was going to last, and whether my son was going to be able to deal with whatever was left. The hardest things were that uncertainty and the inability to control such a life-changing event; there is just so much that is out of everyone’s control. Another difficult thing has been that my family falls apart a little bit while my son and I are in the hospital. My husband has gotten better and better over the years at keeping a routine at home, but that used to be a huge struggle. He used to not keep any routine at all, and that was especially harmful to my daughter because she was so young. I know how hard it is for him, because he owns a business and needs to keep that up as well as run the home; he has also become better at letting other people help him do that. But it’s still difficult when I’m in the hospital because I have a sixteen year old who only has me; I’m his disciplinarian, I’m his anchor… everything. So when I’m gone he’s kind of left adrift. Also, my youngest daughter really misses me terribly and feels sad. So it’s really the two kids at home that suffer a lot. I’m always pulling my hair out here at the hospital because things are going wrong at home and people are calling me upset like I should fix it, and I can’t. I just tell them, “I’m here now. I’ll do my best when I get home.”
The waiting gets stressful when the child starts getting sick, because you start feeling anxious and wondering when the transplant is going to happen and if it is going to happen in time. And there is also stress because life can’t go on normally until it’s all behind you. But for us the most stressful time has been his last transplant. He was in the ICU for two months and he went from one calamity to another. I can think of four occasions when we came far too close to his death for any of us to be comfortable. It was completely out of our control and the doctors did their best, but sometimes it didn’t look like it was going to get any better. That was probably the most stressful time, and sometimes I was worrying about whether he might die, but the hardest part was that he was so unbelievably miserable. He was in so much pain, he was so scared, and there wasn’t a thing that anybody could do for him to make him better. I remember looking at him and thinking, “How long can he stand this? How long can he live through this?” There was one night when he told me that he couldn’t take it anymore, and I knew that he was talking about the fact that he just couldn’t live like this anymore. And I told him, “You know what, honey, I need you to hold on just a little bit longer. I need you to be strong for me just a little longer. Let’s make it through tonight and talk to the doctors in the morning and see if they can help you.” That night we needed to pick chunks of time, and about two hours later he looked at his nurse and he said, “I’m gonna die.” And she knew that he was serious, so she pulled the doctors aside the next day and told them that he had some pain issues that they just had to figure out. Because at that moment he was not so much in physical danger of dying— not as much as he had been a few days before and was about to be a few days later, but at that moment he was ready to let go. If he’d had the ability to do that and hadn’t felt like people really needed him to stay, I know in my heart that he would have just let go and would have gone to the Lord, because it just wasn’t worth it anymore. That was the hardest time we’ve ever had.
Quite frankly, if I could grow organs and give them away, I would do that. I can’t even begin to tell you what a gift to myself it was to give my child life twice. It was truly a gift to know that I gave that to Riley and that it ultimately took so little to do. It actually felt like it was so little; it was no worse then giving birth to a ten pound baby by c-section maybe because you have the abdominal cut. But giving it to her was probably, aside from giving birth to each of my three children, one of the best things I’ve ever done for me emotionally. I couldn’t imagine not doing it. I always felt that my giving her my kidney was kind of a no-brainer. [Here a mother is describing what it was like donating a kidney to her child.]
It was hard; this is our first child. It was one of those things I didn’t think about. I was more worried about the outside: birthmarks or just superficial, stupid things. It just didn’t occur to me that this was reality. After being in the hospital all summer, I realized that these things can happen. I’m really lucky though, because he’s never gotten really sick, but just knowing that we had to be on a list for a liver, and not having control of that…
Kidney failure was not my son’s original problem. Three years ago he contracted bacterial meningitis, and he had a long recovery from that. Towards the end of his recovery the only condition remaining for him was chronic kidney failure. First he was on hemodialysis and then he was on peritoneal dialysis. For the first six or seven months of hemodialysis he was also recovering from the meningitis, but hemodialysis was a very smooth experience, and it was a treatment that worked well for him. After that he did peritoneal dialysis, and that went very smoothly for him as well. It was also very nice to be home for treatment rather than in the hospital. I felt very fortunate that the transplant was going to be a planned surgery rather than an emergent one, because it gave us lots of time to prepare. We also had the luxury of being part of the decision as to when it would be best for my son to do the transplant, which was also a good thing for us. And we had plenty of time to take care of anything that we needed to put in place for the family after the transplant. The preparations went smoothly, and I really took advantage of the time to find out what my concerns were and what would make me feel the most at ease. For me, that meant getting my questions answered and making sure I was prepared.
I didn’t have many concerns about the actual transplant surgery. I was concerned that post-transplant my son might experience setbacks such as re-hospitalization and other difficulties. It was probably because he had been so hard hit with meningitis that I was almost expecting a similar experience after transplant. But it turned out that this wasn’t the case at all. He had no setbacks and has not been re-hospitalized since the transplant. Because I was my son’s donor, I think my major concern was for his younger brother. He was going to have two family members in the hospital having surgery at the same time, one being his mom. So I think that my focus was really on putting things into place for him so that he would be well taken care of post-transplant no matter what happened.
Transplant is a decision that everyone has to make for themselves. The first time we went to a meeting about whether Beth wanted to be evaluated for a lung transplant, a minister and her fiancé went with us. When we all came out of the meeting she looked at me and said, “Mom, this is my decision and you’ll have to accept what I decide.”
We had a good nephrologist who sat us down and said, “She is really sick. She is going to get sicker. She is going to be on dialysis, and she is going to need a transplant.” He explained it all very calmly. He told us everything that we should expect: that there were going to be times when it didn’t go well, and that it was basically going to be really awful during this whole time period, but it was going to be okay, and they were going to be there to support us and answer all of our questions. Because he laid out all of the steps for us, I wasn’t afraid when we came to those steps; I had known they were coming.
Waiting, planning on getting tested and trying to coordinate everything, it seemed like there was always something else to do, but it wasn’t happening fast enough— or at least fast enough for us. We just wanted it to be here. It was a hard time because we were very focused on getting to the transplant. It was kind of like having tunnel vision trying to get to the transplant. The night before the surgery, I really wasn’t nervous. Even going down in the morning, I was worried about how the surgery itself would go, but I was just excited that we were there. This was her big opportunity to get better!
When we found out she needed a transplant we were happy, almost, because she was so restricted beforehand. It was a big milestone. Of course, we were worried, but we knew it would be better after. But then it seemed like we were just waiting for time to pass. We were told it would be about a year before the transplant, so we were just waiting for the event to happen, for twelve months. But we knew that it would happen. And it was actually a good year— she felt better that year than she had the year or two before that. Leading up to the dialysis she didn’t feel good; she was just getting sicker and weaker. When she started dialysis she actually felt better, even though it seemed like medically it was another step that meant she was getting worse. But there were restrictions with the dialysis, whether they were timing restrictions, swimming restrictions, eating restrictions, and drinking restrictions— there are only so many ounces of liquid you could put in.
The first week or so when we got home, every phone call, we wondered. But as time went by we were just too busy doing day-to-day things: just taking care of her and keeping her going. It kind of went in the back of our minds. We didn’t really think of it. And after a couple of weeks, the phone rang and we didn’t think of it.
She was about three weeks old when we brought her to the hospital for an unknown fever. We knew prenatally that she was going to have some issues. They did some tests, came back and said she was end stage renal— that was it. We were devastated. I heard the word “transplant” three months later. Before the transplant it was horrible. She was on peritoneal dialysis and she was on about 80 pills. And she was too small, so it didn’t work very well. She was constantly getting sick, and had strokes because of the dialysis, which is why she is the way she is now. And nothing was really helpful, because she was so small. It was all trial and error, and she was probably in the hospital twice a month. So it was really scary— she was just so little, and she couldn’t go home— she couldn’t leave. She had to get up to 6 ½ kilos before the transplant, which isn’t very big, but with a kidney kid it is just impossible. So it was really bad. And I saw a program on TV about kids getting heart transplants. And it was funny, because I was watching all of the other kids get their hearts, and was thinking, “Where’s mine?” It had been six months.
Because we had talked about transplant before it was a definite, I knew that it was coming. It was almost a relief to know that there is a possible solution to our tremendous problems. Being in a hospital for an extended period of time, you kind of going into a different mode. The hardest part about being there is staying there. Time ceases to run normally; the hospital works on a 24-hour clock. You try to sleep in the room with your child, but it doesn’t matter because someone is there every half hour or every hour. Suzie had trouble sleeping. People drift off to sleep at 5 o’clock in the morning, and then at 6:30 have to be the Energizer Bunny while interns are doing their rounds. Sleep is a real problem, so I’m not sure that I remember any kind of emotion when we found out she needed a transplant; I was just trying to absorb information.
I was really shocked when they told me my sister needed a transplant. I knew she was sick but I didn’t know she was that sick. I thought that I would be there for her and I would always just tell her that I loved her and make her feel better. I was really scared because I didn’t know what was going to happen. It just feels like you’re in this lock and nobody cares- they’re just caring for your sister.
My advice to anyone who has a child going into the hospital: Pack a bag first for yourself, toiletries, comfortable clothes, any meds you have to take yourself, change of shoes, phone numbers, cell phone or calling card, snacks, change, something to sleep in (usually in room with many other parents or in child’s room), something to keep busy with: books, handwork, magazines, etc… Most important pack a notebook and grab all of your child’s meds as you run out the door. Start a daily log of happenings. Ask for copies of labs, and make a graph so as to see several days of lab at once. Also have a camera in your bag. This is a momentous occasion in your child’s life. We have pictures of Nick getting on the helicopter to be airlifted; we have pictures of him in ICU immediately after his transplant and with all the people who helped him along the way. Now of course have a bag packed for your child as well. Most of the same things should be packed for him but also pajamas to wear later that are easy to get on and off, slippers, robe, and change of clothes for the big day when they come home. Pack entertainment! My son wanted his personal CD player and CD’s. We have many pictures of him in the PICU hooked up to everything with his eyes closed listening to his CD’s. Favorite DVD’s, videos: take them; most hospitals have players to bring to room. Bring your video card and ask what video stores are close. Books, journal for the patient themselves, hand held games and anything else they may enjoy. Ask when you get there because they often have computers the kids can borrow or go to and use to check e-mails and such. Also ask when you get there or ahead of time about host houses or other accommodations around the hospital for you and or other family members. Also ask about the nearest grocery store for snack runs. It is nice to keep some in the room for when you do not want to leave. |
Heart Defect
Liver Transplant
Giving my Child Life Twice
Decision
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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 |
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