Organ Donation and Transplant: What is Your story?

My Caregiver Journey
Each transplant story has similarities, but stands alone. Likewise, caregivers’ stories are unique. My journey is not different.

My husband and I met in early 2015, while attending a kidney disease support group. He had been on peritoneal dialysis since October 2011 [having been listed for transplant six months earlier], and I had recently been diagnosed with a very rare disease. I was struck by Bill’s positive attitude, and marveled at his stories of camping and road trips while on dialysis, even rigging up deep cycle batteries to power his machine so he could continue off-road adventures and charitable activities. We became comfortable talking to each other, and even though we lived almost 100 miles apart, he asked me to part of his caregiver team. By then it was a no-brainer for me, and our relationship continued to grow.

Towards the end of 2012, he had decided to double-list, being listed at his local transplant center, and then listed also at Scripps Institute in La Jolla, CA [about 90 miles south]. He continued to work full-time, and in fact never missed any work-time until time of the transplant. In August 2016, he suffered a bout of diverticulitis, and had to go on antibiotics when his access port became septic. During that 2 week period, he was called for a transplant, but had to pass it up. We went camping the following weekend, and had planned to go out again 2 weeks later.

When the transplant team called from Scripps on Thurs September 29, 2016, they advised he was third in line for a kidney. He went in to work the next day, and straightened up his area, leaving detailed notes for people “just in case”. We were to go camping, but decided he should stay close to home. We were both pretty nervous, and excited. Saturday morning, as he ate breakfast with a friend, the transplant team called and told him to stand-by, he was still #3, and go NPO [no food]. I wanted to start the drive down to him, but he wanted me to wait. At 6:30PM, as we were talking on the phone, the transplant team called and instructed him to head in, but it wasn’t a sure thing, yet. They would not wait for me to drive the 100 miles to him, then head another 90 miles south. So, he drove himself, called his daughter to meet him there, called his boss, and called his son. Since the surgery still wasn’t sure, as he was #3, he asked me to wait.

The first candidate was not able to be transplanted that night. That moved Bill up to #2, and both the second candidate and he got a new kidney that night, Saturday October 1, 2016. I drove down the next day; he was released on Tues. At that time, I had retired from full-time work due to my kidney disease. My part-time job was flexible, and my boss was very gracious. Bill’s daughter and I were co-caregivers, splitting the week up so she was there 3 days, I was there 4 days. I accompanied him to all appointments, taking copious notes, and asking lots of questions. We learned a lot about each other, and feel the time spent thrown together in recovery gave us a solid foundation for our relationship.

Tips I would give to other caregivers:
1. Accompany your patient to all appointment, pre- and post-transplant. Write down questions ahead of time. Don’t feel shy to ask them, and take notes. Ask for clarification on anything if you need to. Write down the patient’s vitals each appointment, and in between. Your patient may not hear all that is being said, or may miss something as they ponder a point.
2. If you are in a city you’re not used to, make friends with your new neighbors. You’ll need to lean on them in unexpected ways. We met a young couple living a floor above us, turned out she was a nurse, so if there was a problem, she was right there! Understand how to get to appointments, and have multiple routes figured out. Program important phone numbers and contacts into your phone.
3. It’s okay to remind your patient to take their meds, to get out and walk, to watch their diet. It’s a new way of life, and easy to forget, let alone be overwhelming. Even now, when I hear the alarm go off at 8am and 8pm, I make sure Bill has his meds. When we went camping 6 weeks after transplant, we timed it with an appointment. After the dr visit, that night he realized he had not brought his meds along, so we drove h***-bent back home, trailer in tow. I had to push him to go walking at first, even if it was just around the parking lot. Now he averages 10,000+ steps a day.
4. Be grateful for the process. It can be scary, yes. While you are dealing with this gift of a second chance, another family may be grieving a great loss in theirs. It’s okay to feel conflicting emotions. If need be, reach out to the transplant social worker, or to us here on Mayo Connect. You are not meant to bear this undertaking alone.
5. Your patient has a new-to-them organ. There may be personality changes. Be patient. Remember to take care of yourself, too.
Ginger

@gingerw It's so nice to hear yours and your husband's story. He was transplanted a week after me, I was on 09.23.2016. I'm happy that his transplant worked out as well as mine did. You have some great advice for others going through this too.

I too forgot my medications one time, we were on our way, only about an hour and a half from home, thankfully, so that had made me extremely conscious of them now whenever we go away. I doubt I will ever forget them again and I suspect your husband will not either.
JK

@contentandwell Thank you!
It has pretty much become second nature for me to ask if he has his meds along. We keep two doses [one morning, one evening] in my car center console "just in case", and change them out every few months. Likewise, I keep doses of my meds in his truck. Especially as we come in to winter, if we were to get delayed somewhere, we might not have clean underwear, but we will have meds!
Ginger

My double lung transplant/ October 6, 2019:
My journey started in 2013 when I began to have shortness of breath. I had a cardiac catheterization in 2015 but the doctors didn't recognize at that time that my Pulmonary pressure was too high. In 2018 I became very Ill at my daughter's when we went to see the Atlanta gardens. It was hot and there were inclines and I collapsed. Another cardiac catheterization later and I was diagnosed with Pulmonary hypertension. I was put on medicine after medicine but nothing brought my pressures down, in fact they became sky high at 130-150. The PAH meds were wicked awful with side effects that had me vomiting throughout the day. I was short of breath, fainting and had severe heart failure. Fast forward to 2019 and I began my eval for double Lung transplant. I never really believed I was dying. I kept working at my private psychotherapy practice. I thought no one knew I was sick, turns out everyone knew! I just didn’t identify as a sick person. One day I came home from work and collapsed completely. I was in ICU for acute heart and respiratory failure. I couldn't see people but could hear. A sheer white curtain seemed to be in front of me. They said I could die any minute. They put Me on the list on Friday and Sunday morning said I had a pair of lungs! I would say the surgery and recovery took a heavy toll on my adult kids. It's been rocky with the episodes of pneumonias and rejections as well as CMV. I had a fundoplication which was hard to recover from. I lost forty pounds. And I have a Mycobacterial infection requiring two daily IV infusions as well as other antibiotics. My kidneys are failing. I don’t want to be negative because there is this: every day, I’m alive. Without the transplant I couldn’t call my kids or hug my husband. I couldn’t hear the rain or see the sky or smell the ocean. One more year with my grand baby. It’s all priceless. Every day is a gift! Don’t waste it. Take a nice big bite of every moment you are given because you don’t get another one just like this. I consider myself very lucky and grateful, especially to my wonderful donor. Rock on!

Today 11/30/2020 is my 15th transplant anniversary! I decided it is a good day to tell my transplant story. I am 63 years old and was diagnosed with Type 1 diabetes in 1975 at age 18. It turned out to be uncontrollable despite all the treatments available. It affected all aspects of my health & life and vice versa. Everything in life impacted my diabetes. Over the years I developed the usual complications: retinopathy, peripheral & autonomic neuropathy, high blood pressure, high cholesterol and chronic kidney disease (CKD). Day to day living became a constant balancing act while juggling a bazillion balls. The pregnancies & births of my two daughters were more difficult than usual. My husband & family dealt with many ordeals of insulin reactions & hypoglycemic unawareness. I felt like a ping pong ball as blood sugar routinely bounced from 20s - hundreds (or simply “HI” because old meters wouldn’t register that high a number) and back again.

In 2005 my primary recommended that I look into transplant. I applied for simultaneous kidney / pancreas transplant. The pretransplant evaluation was rigorous but I was told that my CKD was only mild / moderate and that I did not need a kidney transplant. I was approved & accepted for pancreas transplant alone. I was told that due to blood type and matching factors the wait would be about 1 1/2 years or more. I was listed on 11/15/2005 at age 48 and settled in for the wait. I and my family / friends also prayed. I am a Christian and have put my life in God’s hands. Living this way, I believe that whatever happens it is in God’s timing and for His good purposes.

On 11/30/2005 (just 2 weeks later) I got “the call”! It was like my own personal miracle. I was not instantly cured of diabetes as skeptics like to point out but my diabetes is finally controlled. Pretransplant I had multiple daily insulin injections that totaled over 50 units a day. Now I have 11 units of a long lasting insulin at bedtime. The HbA1c test was always in the double digits pretransplant. Three weeks after transplant it was 5.3 Even now 15 years later when it is tested it is 6 - 8. My blood pressure and cholesterol are finally in range. My retinopathy was reversed and I just use reading glasses. The neuropathy resolved. The CKD remained stable for 11 years.

In 2016 my kidney function began to decline. I’m not afraid of transplant so I got back in line for a kidney transplant evaluation and started looking for a living donor. I was approved & accepted for kidney transplant. I haven’t had much “luck” with finding a donor. But I don’t believe in “luck”. I have faith in God’s Providence. If a kidney transplant is God’s will for me, it will be in His timing with the donor of His choosing. Meanwhile in the past 4 years my GFR has been 14 - 42. It is currently at 24 and my listing was changed to inactive. I’m not on dialysis and I was told that I’m “too healthy” for transplant at this time!

Today 11/30/2020 is my 15th transplant anniversary! I decided it is a good day to tell my transplant story. I am 63 years old and was diagnosed with Type 1 diabetes in 1975 at age 18. It turned out to be uncontrollable despite all the treatments available. It affected all aspects of my health & life and vice versa. Everything in life impacted my diabetes. Over the years I developed the usual complications: retinopathy, peripheral & autonomic neuropathy, high blood pressure, high cholesterol and chronic kidney disease (CKD). Day to day living became a constant balancing act while juggling a bazillion balls. The pregnancies & births of my two daughters were more difficult than usual. My husband & family dealt with many ordeals of insulin reactions & hypoglycemic unawareness. I felt like a ping pong ball as blood sugar routinely bounced from 20s - hundreds (or simply “HI” because old meters wouldn’t register that high a number) and back again.

In 2005 my primary recommended that I look into transplant. I applied for simultaneous kidney / pancreas transplant. The pretransplant evaluation was rigorous but I was told that my CKD was only mild / moderate and that I did not need a kidney transplant. I was approved & accepted for pancreas transplant alone. I was told that due to blood type and matching factors the wait would be about 1 1/2 years or more. I was listed on 11/15/2005 at age 48 and settled in for the wait. I and my family / friends also prayed. I am a Christian and have put my life in God’s hands. Living this way, I believe that whatever happens it is in God’s timing and for His good purposes.

On 11/30/2005 (just 2 weeks later) I got “the call”! It was like my own personal miracle. I was not instantly cured of diabetes as skeptics like to point out but my diabetes is finally controlled. Pretransplant I had multiple daily insulin injections that totaled over 50 units a day. Now I have 11 units of a long lasting insulin at bedtime. The HbA1c test was always in the double digits pretransplant. Three weeks after transplant it was 5.3 Even now 15 years later when it is tested it is 6 - 8. My blood pressure and cholesterol are finally in range. My retinopathy was reversed and I just use reading glasses. The neuropathy resolved. The CKD remained stable for 11 years.

In 2016 my kidney function began to decline. I’m not afraid of transplant so I got back in line for a kidney transplant evaluation and started looking for a living donor. I was approved & accepted for kidney transplant. I haven’t had much “luck” with finding a donor. But I don’t believe in “luck”. I have faith in God’s Providence. If a kidney transplant is God’s will for me, it will be in His timing with the donor of His choosing. Meanwhile in the past 4 years my GFR has been 14 - 42. It is currently at 24 and my listing was changed to inactive. I’m not on dialysis and I was told that I’m “too healthy” for transplant at this time!

My double lung transplant/ October 6, 2019:
My journey started in 2013 when I began to have shortness of breath. I had a cardiac catheterization in 2015 but the doctors didn't recognize at that time that my Pulmonary pressure was too high. In 2018 I became very Ill at my daughter's when we went to see the Atlanta gardens. It was hot and there were inclines and I collapsed. Another cardiac catheterization later and I was diagnosed with Pulmonary hypertension. I was put on medicine after medicine but nothing brought my pressures down, in fact they became sky high at 130-150. The PAH meds were wicked awful with side effects that had me vomiting throughout the day. I was short of breath, fainting and had severe heart failure. Fast forward to 2019 and I began my eval for double Lung transplant. I never really believed I was dying. I kept working at my private psychotherapy practice. I thought no one knew I was sick, turns out everyone knew! I just didn’t identify as a sick person. One day I came home from work and collapsed completely. I was in ICU for acute heart and respiratory failure. I couldn't see people but could hear. A sheer white curtain seemed to be in front of me. They said I could die any minute. They put Me on the list on Friday and Sunday morning said I had a pair of lungs! I would say the surgery and recovery took a heavy toll on my adult kids. It's been rocky with the episodes of pneumonias and rejections as well as CMV. I had a fundoplication which was hard to recover from. I lost forty pounds. And I have a Mycobacterial infection requiring two daily IV infusions as well as other antibiotics. My kidneys are failing. I don’t want to be negative because there is this: every day, I’m alive. Without the transplant I couldn’t call my kids or hug my husband. I couldn’t hear the rain or see the sky or smell the ocean. One more year with my grand baby. It’s all priceless. Every day is a gift! Don’t waste it. Take a nice big bite of every moment you are given because you don’t get another one just like this. I consider myself very lucky and grateful, especially to my wonderful donor. Rock on!