Kidney Transplant: Decision Time

I don’t know why I waited so long, but I decided in 2019, I was going to get a kidney transplant.  I got all my paperwork together and applied to get on the kidney transplant list. I didn’t know what the criteria were to get on the list, and the people I talked to weren’t much help. The only thing I knew about getting on the list was:

• Be referred by a doctor
• Have an irreversible disease that causes organ failure
• Be healthy enough to survive and benefit from an organ transplant
• Be able to comply with a long-term medication regimen 

So, my heart dropped to the floor when I was turned down.  It seems that no smoking and no alcohol for a couple of months isn’t enough time to be accepted on the transplant list.  I was so upset and kind of mad.  It wasn’t because I was turned down (since I found out what I needed to do to fix that), it was the way it was handled.

What happened was, I didn’t get a rejection letter, but one was sent to the dialysis center. So when the counselor came to speak to me about it, I was very much caught off guard. I wasn’t upset that they got the letter; I was upset because I didn’t get one. So they knew about it before I did, which didn’t give me much of a reaction time. This caused another round of anxiety. I don’t like people to look at me pitifully with judgmental eyes. But I got through that unpleasant chain of events and moved on, all the while gathering more strength.

When I first decided to quit, it was not difficult to stop drinking, I did that immediately. But to quit smoking, well, that’s another story. I kept setting my mind to stop, but then I would get anxious when I was almost out. In 1988, the Surgeon General stated that nicotine in cigarettes is highly addictive. I guess he was right because it took a whole month after my alcohol abstinence before I was able to stop smoking.

The hardest part after that was the waiting. In the weeks that followed, I tried not to dwell too much on it because it always caused me a considerable amount of stress, thinking that I might get turned down again. This time, I was determined not to give them to a reason to turn me down. So after 2 years, I decided I would try again.  On the 2nd anniversary of the day I quit smoking, with a prayer in my heart, I applied the second time to get on the transplant list. After all the waiting, I was finally accepted to get evaluated to be placed on the list!

After I got accepted, I had to go through a great deal of rigorous testing to ensure I was a viable candidate for transplant. I had to do test after test, and sometimes the same test multiple times. I went through all this in a span of six months.

• Blood tests – Numerous and still doing it.
• MRI – 3 times.
• Stress test.
• COVID tests – Too many to count.
• Ultra sound – 4 times.
• EGD – 2 times.
• Colonoscopy – 3 times.
• HLA (tissue test) To make sure the donated kidney would be a good match for me.
• Heart
• Pulmonary function test – especially if you are a former smoker
• Urine Tests
• Toxicology
• A1C
• Cancer screening

Just to name a few.

During the evaluation, there are many behind-the-scenes processes happening. The transplant teams would meet and discuss eligibility and make sure that transplants were the right treatment for you. They will also decide if you will be listed, not listed or need more tests.

I had to go through different types of counseling to assure them I was in the right state of mind to be able to endure the ups and downs of the surgeries and what may follow. I had a head-spinning number of appointments with all the doctors, nurses, and counselors. I met with:

Because I was also getting a liver transplant, their team had its own criteria. I was still required to seek counseling for alcohol abuse, although I had been abstinent from alcohol for over 2 years. After I found a very nice and knowledgeable counselor, the hepatologist gave us the requirements. She wanted us to meet once a week for six months. In my mind, I was thinking, “I don’t need this much counseling,” and after a few weeks, the counselor seemed to agree. After she asked me if I was okay with it (of course I was), she recommended a change to the nephrologist in how much counseling she felt I actually needed. They then agreed to change to every two weeks for six months. After all my sessions were done, the counselor declared that I had successfully completed my requirements.

My schedule was even busier than it was when I had a job. Everyone I met with was very helpful and understanding. They all knew that this was hard for me and that it was going to be a long, stressful, and, God willing, successful journey. In this post, I would also like to point out that I was not alone in this journey. My family was always there, praying and offering any help that they could. Whenever I needed anything, they were there, ready to provide.

It would be amiss not to mention my big sister, who gladly accepted to be my support person. Even though she had her own responsibilities, she took me to every appointment and just about any other place I needed to go. She also agreed that after my transplant, she would be my caregiver until I got back on my feet (boy, she did not realize what she was in for).

During all the visits, both teams would ask if I had any questions. I was curious about one thing, so I asked. Did you know that for the transplant, your kidneys are not removed? They just place the new kidney in there, right along with the old ones. So, of course, I asked, “Why don’t they take your nonfunctioning ones out?” They explained that taking them out would be much more difficult and risky, plus it would take a whole lot more time. Not only that, but over time, the old kidneys will get smaller. They only remove them if complications arise with your kidneys.

After all the tests, the poking, the prodding, and the questioning, I was finally put on the list. When I got approved for the kidney transplant, I was also approved for a liver transplant. Although it wasn’t imperative that I get a new liver, the doctors would not transplant a new kidney into me while the liver was not at 100%. So I had to get a double transplant.

At one point, though, I got a little disheartened because the new nephrologist that I was assigned to told me that my MELD score was too low, which meant I might be on the list longer than I expected. The MELD (Model for End-Stage Liver Disease) is used to evaluate the gravity of a person’s liver disease and prioritize them on the list for liver transplantation. The score ranges from 6 to 40. The hospital will not transplant a liver until the score is in the mid-20s. My score was only 12 at the time. I remember going to one of my dialysis meetings practically in tears because what he told me made it seem like I would have to wait until my liver failed before I could get the transplants. 

Luckily, he was wrong. He didn’t count in the factor that I needed a kidney transplant immediately. So, after 8 months of testing, appointments, meetings, and waiting, it happened……