Transplant Caregiver and Patient Stories
If you would like to share your experience as a transplant caregiver, please use the following form. You can give your first name and where you live, or you can remain anonymous.
Some questions that may be helpful to answer when sharing your story are:
- Are you currently a transplant caregiver?
- How long have you been a transplant caregiver?
- What has been the biggest challenge you faced while providing someone else with care?
- What has helped you through those challenging times (other support organizations, support people, coping skills, relaxation methods, etc.)?
- What have been some positives in being a transplant caregiver?
- What information do you think is important for other transplant caregivers to know?
- How do you feel about your situation now? Or where do you hope to see yourself in the future?
Melinda – Kidney Recipient’s Mom
This support site is wonderful. My daughter had a kidney transplant in 2009 and there was no support group in Chester County. In fact, the social worker at Lankenau was able to get in touch with a transplant recipient so I could talk to her and she did agree. However, I only talked to her once. The years before the transplant and after the transplant were very hard. I had lost my mother a little before my daughter was diagnosed with Kidney Disease in 2007. After the transplant at a time when I thought I should be so happy, I just crashed! My other daughter who was the donor, myself, and Viki, the recipient, are the only family we have. I even tried to start a group of my own but that didn’t work either. Also it was before the Family House existed.
So, I am so glad this is available. I am still a caregiver because Viki has a lot of other problems. It’s been a difficult road. Viki is doing great but many people still don’t understand how hard it can become to see your child suffer. But we are very blessed that she was able to get a wonderful, gushing kidney and is still progressing “thankfully”.
Please, if you are a caregiver, find people you can talk to and that may not be family or friends so keep trying.
Blessings to all of the caregivers out there.
Kathy – Heart Recipient’s Wife
I have been a caregiver for 2-3 years. My story began in July of 2003. My husband Joe got diagnosed with cardiomyopathy. He was put on medicines and did well for the first 5 years. Then I noticed episodes were getting more frequent. I knew by December of 2009 where he was headed. By January he was hospitalized and had a defibrillator put in. That didn’t help and he wound up in and out of Johns Hopkins. He was released on a Wednesday, and had to be rescued in the first blizzard. The firefighter couldn’t get in our neighborhood, so we had a toboggan and they had to use it to get him to the closest hospital. They needed to transport him back to Hopkins and this was when the 2nd blizzard that Wednesday was starting. They got him there and ran all the tests and informed him that he was to have a heart transplant.
Our insurance wouldn’t cover it at Hopkins, but his doctor said our insurance would cover us at University of Penn, and he had trained one the doctors. So they brought him there and redid all the tests. He got released on our 21st Anniversary with a pump. He would have to come up once a week till transplant and a home nurse would come and change the thing every week. My boys and I had to clean out the line everyday. My biggest fear was getting stuck in traffic trying to get to Penn from Baltimore. We received our call on Palm Sunday, March 28, 2010 at 7 a.m.. He went into surgery around 2:30 p.m.
I was strangely calm, I think that was due to being scared and you knew you had to rely on faith to pull through this, it was just too big for me to handle. He did fine, but by Wednesday they were doing physical therapy and when they went to get him up to sit in a chair. He collapsed and they had to do CPR on his new heart, due to his kidneys being in shock. It can be common for the body to react.They did dialysis and he pretty much was out of it.
On Easter morning I had the surprise of my life. He was up and doing well. The night before there were still machines in the room. I couldn’t believe when I walked in there. He then took off and was doing great. We have had a few ups and downs, but no rejections. We will be celebrating his 2 yr. anniversary soon. I can tell you that the first year was harder than our 2nd. But he is one of the truly blessed ones.
Thanks to our donor and their family. Prayers to all of us who have gone through this or will go through this. Each of us has our own story and ending. We want to help others going through this. I would have loved the transplant home to stay at instead of a hotel.
Nancy – Heart Recipient’s Wife
I have been a caregiver for more than 5 years. I think the day we received “THE PHONE CALL” – which you anticipate every day – was original. We were expected at the Perelman Center at the Hospital of the University of Pennsylvania that morning; which is a 3 hour journey for us. We decided to take the train into the city that day. In order to get to the train we had to leave home around 5:30 AM and journey to the Lancaster, PA station. The station was in disarray as they were updating the entrance and the station. We were there about 15 minutes early and it was nice out so we went directly to the platform and waited.
The train was on time and we boarded without any problems. My husband was very slow moving as he only had a 10% EF. We were on the train for about 10 minutes and my cell rang. We presumed it was our daughter checking to make sure we were OK. Being on the transplant list affects everyone, not just the patient. I answered with a cheery good morning and realized I didn’t recognize the voice on the other end.
To my surprise it was Nicole from transplant. She asked where we were and I said on the train for our appointment. I thought she was trying to cancel our appointment. She then asked if we were ready. For what, I wondered. To my great astonishment she said – don’t go to the Perelman Center – go to the hospital. We have a ”heart” for Tom. I said, you have a what?
I must not have said anything after that because she said, Nancy, are you OK? I repeated what she said so Tom could hear and we were just staring at each other. Then a smile came across his face and I knew we were ready. It was actually a great way to get the news since there wasn’t any time to second guess.
Then it struck me. I have no money, clothes, or a place to stay. Oh! I forgot to call our daughter (about 5 minutes had passed). I called her and said guess what? Told her the news and she was so excited she had to pull off the road. She has 4 children, but she did not hesitate to turn around and pack my suitcase (and hers) and bring some money along. She had to make arrangements for her children but she was at the hospital by 2:00PM. Family support is a necessity for the caregiver.
And then we waited. They had to make sure the heart was viable. Hour by hour we waited. In between the wait we washed Tom with the iodine solution (three times) so he was ready for the next step. Then we met the surgeon around 5:00PM and we waited. You learn over the years to have patience, as he had many procedures done over the span of 20 years. But this was different for some reason. The minutes seemed like hours; but, at last, they came to tell us they were ready. They took him about 5:30PM. We walked with him to the pre-surgery section and then we went to the waiting room, where we waited and waited to hear they started the surgery. At 8:30 PM we received the news that he was in surgery and we asked that the Lord watch over him. And He did. At 1:30PM the surgeon called and let us know he did really well during the surgery.
We found a hotel while we were waiting – took a taxi to the hotel and fell into bed exhausted. You would think sitting around all day and night would make you tired, but it does. We were up early and back at the hospital to see him. I’ll stop with this story, but I’ll fill you in on what happened next another time.
Lorna – Lung Recipient’s Wife
My biggest challenges has been leaving my husband for hours at a time to go to work just breaks my heart. It has also been financially challenging and trying to work when there are so many appointments is no walk in the park. I have found that as time goes on family and friends become fewer. Prayer is how I have dealt with the challenging times, I pray every moment for PATIENCE and strength. Positively, for the first time in 2 years my husband is not connected to an oxygen machine and when I take him for a ride, I no longer have to load up the trunk of the car with oxygen tanks. It is very important for transplant caregivers to know that it is a very difficult task, you have to be very organized with the medicines and doctors appointments and the hours are long and sometimes brutal when you yourself gets tired. You must always demonstrate love, patience and constantly encourage them.
We are still in the newness of it all, he received a lung transplant 2 1/2 months ago, and we have experienced some signs of rejection and infection. For now, it is very, very, difficult — working full time and taking care of a lung transplant recipient is by no means an easy task. There are days I sit at my desk and tears just run down my face. I pray for the day when we can go for long walks and take trips and just appreciate each other even more.
James – Waiting for a Lung/Liver Transplant
While on my journey, I never thought I would befriend so many people and feel the love and support of others who are also going through the same situation. Yet, it has filled me with great emotion watching others lose their battles also the pain and anguish it causes an entire family makes me ask why some are more fortunate than others. This is not something for me to question though. Sometimes things happen the way that they are supposed to and I am grateful to have been given this opportunity at a second life. The anticipation of waiting to receive organs can be difficult but my desires exceed my anticipation. I choose to live my life while waiting.
The most surprising thing about waiting for a transplant is that I never realized how little influence that doctors can have in the waitlist process as far as who gets put on this list and where they are. The medical staff does not discuss where other people are on the list compared to where you are and that unknown can sometimes challenge a person’s resilience. When you are put on the list there is no certain time frame and no answers. For me that is the most difficult part.
The part of transplant that I have been doing well with is waiting and having patience. I learned to have a lot of patience in life because of my profession. You just have to do your best in whatever situation is given to you. The Lord said there is no one person that is good, we all fall short to the glory. Whatever you are doing you can always could find someone that can help you to do it better.
The most memorable and inspiring part of my journey has been God and his creation of the human body in order for us to have a life we choose to live and if we are lucky we even get a second chance.