Post-transplant Life Includes the Constant Monitoring of Lab Tests

An integral part of my recovery from single-lung transplant surgery is the close monitoring of lab results.

My case is even more interesting because I have autoimmune hemolytic anemia (AIHA). Simply explained, my red and white blood cells and platelets are significantly lower than those of someone who doesn’t have this disease.

In my current state of health, I essentially have a “new normal.” But I have learned to adjust to that new normal, and I generally know when there is something wrong with me.

The AIHA diagnosis came when I had to complete preoperative testing for a hip replacement in 2003. The hip replacement surgery was subsequently deferred until the next year because of that diagnosis.

Early on in my evaluation for transplant, doctors made it clear that the AIHA would not affect my being listed for new organs. My hematologist also said he would clear me for transplant. That news was a big relief.

I am only treated with one medication for AIHA, danazol, which does a decent job of keeping me above what I call the functionality line. If there is a significant drop in my hemoglobin and red blood cells, I am adversely affected. Thankfully, I have been stable since my transplant, except for a three-month period when I had to live in a bubble.

I also contracted cytomegalovirus (CMV), a common virus, and the medication to treat it suppresses bone marrow. Due to AIHA, my bone marrow already was suppressed, and the new medication subsequently sent my body’s cell-producing ability into a tailspin. I was almost hospitalized and couldn’t be in public places until my immune system built itself back up.

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During this period, I had to have blood draws up to three times a week, based on improvement. The low platelet and red blood cell counts caused a tremendous amount of fatigue. Most days, I could sleep for 20 hours if I allowed myself to. This was a struggle, but I fought through it and thankfully came out on top.

Until recently, my labs had to be completed once every two weeks. Now, I get my labs completed about once every six weeks. For a while, the inside of my elbows resembled a pin cushion. I am happy I no longer have to go as frequently, but I also didn’t mind because it gave me a sense of security. The close monitoring of my labs was due to having AIHA. My transplant-related lab tests have always been in the normal range.

The doctors who carry out my transplant-related tests are most concerned with my tacrolimus level. Tacrolimus is the anti-rejection medicine I take to fight off organ rejection. This medicine has many adverse side effects, but it is what keeps most transplant patients alive. I feel fortunate I only have to take one anti-rejection medicine, while many patients take several.

Each anti-rejection medication has adverse side effects, and they can attack the function of other organs, especially the kidneys. Some lung transplant patients eventually require a kidney transplant because of the damage by medicines prescribed for transplant recovery.

My kidney levels are in my “new normal range,” which means they are a little higher than the higher end of normal. But my doctor is pleased with the numbers.

I also find that when my potassium is normal, my kidney level will be in my “new normal range.” Most of the time, I try to be conscientious of the amount of potassium I take in, but so many foods are high in potassium that it becomes easy to forget about my intake.

Staying hydrated is important to combating chronic kidney disease. I try to drink 100 ounces of water a day to keep those kidneys flushed and running. I limit my caffeine intake to about three cups of coffee per week and do not drink juices or soda. So far, this plan has worked for me.

As I write this column, I am pondering my upcoming lab tests on Friday. I always experience a little anxiety while awaiting the test results, but I feel I have been treating my body fairly well over the past six weeks, and I anticipate good results. I will see my transplant team the following week.

It makes me happy when my doctor is pleased with my recovery and lab tests. I know lab tests are part of my life, and I accept that fact. And while they may be a small part of my life, they are absolutely necessary.

I am curious to hear about your experiences with lab tests and how they have affected your life. Please share your thoughts in the comments below. 

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