CMV Post Transplant

If you follow me on Instagram, you will know that  I recently found out that I am CMV (Cytomegalovirus) Positive. I received a lot of messages from people asking if I was fine and wanting to know what was going on. I thought it might be easier to write about it.

CMV is not dangerous for someone with a normal immune system. Chances are, you have had CMV at some point in your life. It presents as a normal flu and you will never know if it was actually CMV unless you are tested for it. Since it is not dangerous and it is a basic flu, it is almost rarely tested for. However, CMV can be dangerous for someone with a suppressed immune system. Before my transplant, my father and I were both tested for CMV. My father was CMV Positive (at some point in his life he had it) and I was negative. I fall into the VERY small percentage of people who have never had CMV before. The simple way to explain the next couple of paragraphs is to tell you that the CMV lives in my fathers kidney. That kidney was then transplanted into my body. Straight after my transplant, I started a tablet called Valcyte for 6 months. Valcyte prevents the CMV from entering my body. After 6 months, your body should be fine to fight the CMV. So I stopped the Valcyte. Less than two months later, I developed CMV.

The problem with developing CMV post transplant is that my immune system is weak and it cannot fight the virus. The virus then starts attacking my new kidney. We obviously do not want this. I started feeling ill for about a week. This also happens to have been the week that I had my monthly cycle. I assumed my symptoms was related to that and the blood moon (silly, I know). My symptoms were quite strange though. I was tired and I had no appetite. My body ached and I had a constant headache. My back hurt so badly that I applied heat to it at all times. I woke up most mornings with my hair being completely soaking wet. I did not understand it because I never suffered from night sweats before.

To be honest, I was also having quite a tough time at work and  I thought it could have been that. I was wrong. Feeling physically and mentally awful can be exhausting and we often push it aside to accommodate work.

There are a lot more symptoms of CMV and I am lucky that I only had a few.

I have been on Valcyte for two weeks now and my viral load has gone from 39 000 to 2000. I should have been at 0 and CMV negative by now but my doctor is confident that by continuing the medication, we will be able to get my viral load down. The positive news is that my creatinine has gone down! I had a creatinine of 60 since my transplant, which is very good. When we found out I was CMV positive, it spiked up to 88. I am very happy to report that we are back down to 60! I am still quite exhausted and my body still hurts but it is a lot better than what it was two weeks ago.

The only advice I will leave you with is to rest. I made the mistake of trying to do too much while being sick and I didn’t realize how much it affected my body. I didn’t realize how much better I’d feel if I actually rested properly. I didn’t have the luxury of taking leave from work but I went home after 12 every day to rest. If I could have done it differently, I wish I could have stayed at home and switched my mind off. Taking care of your mental health is so important and you honestly won’t heal if your mind and body doesn’t rest. Up until today, my headache has not gone away and it is aggregated every time I feel stressed out at work. Which is so often. You need to listen to your body or you will end up like me. Sleeping at every moment I could find. I spent a week running around doing things for a baby shower. The day of the baby shower, I could not enjoy myself because all I could do was rest on a couch. So take the time off and rest.

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