The past two weeks I have felt under the weather and I wasn't sure why. Certain test results I undergo during a biopsy can take up to a week to get back and it turns out one of those late results showed that I have tested positive for CMV (Cytomegalovirus). This is very common among transplant patients and usually treated successfully although in rare cases it does have the potential to be deadly. It's something many people are exposed to usually at a young age but lays dormant most of their lives, unless of course you are immune compromised. Some patients have CMV in their system pre transplant while others contract it from the donor organ. Luckily, in my case, I was exposed to it pre transplant, which as my coordinator stated is much easier to treat as opposed to receiving it via the donor. The CMV levels range from 2-9 and mine is at a 3, so it is on the low side, another positive.
CMV has ravaged my digestive system causing extreme stomach cramping, aches, pains, nausea and lack of appetite in addition to fatigue and headaches. Today I started a medication called Valcyte. I was originally on Valcyte after transplant but I was allowed to stop taking it after three months of negative CMV tests. Valcyte is $450 per month and I will need to be on it for a minimum of four months although that time frame can lengthen if the virus continues to stay active in my system. I go in for another blood test in two weeks and depending upon the results the doctors will determine if I need to stay on that dose or if I can cut it in half as a maintenance dose for about 3 months.
In addition to the CMV, I have had extraordinary joint pain. Because I had no rejection during my last biopsy I was allowed to lower my prednisone dose which is a good thing. However, lowering the dose comes with the adverse side effect of joint pain and therefor the more I lower the dose the more joint pain I will have. Having Fibromyalgia makes the joint pain even more intense and it is not going to go away anytime soon. The more I lower the dose, the more pain I will have. My knees, shoulders, and especially my hips are in excruciating pain, any and all movement is a struggle. I can barely move much less sleep.
AND not only am I dealing with the CMV and joint pain I’ve had to deal with the following… (Men, if you are not comfortable reading about what women have to endure monthly, you may want to stop here and scroll to the bottom to see some flowers!)
This topic is not always comfortable to discuss, let alone share on public forums, but this is what I've been through. This is my story and it's part of the entire picture and I think the stigma of discussing personal matters like this need to be lifted. It's something all women go through and the more stories that are shared, the more that women can see they are not alone or don't have to be ashamed if something isn't 'normal'.
When I was in the hospital in March due to my rejection, the doctors found a small mass on one of my ovaries. It turned out to be nothing serious but then the GYN doctors began conversing with me about my birth control. I have been on the same birth control, Junel, for over 6 years. I originally started Junel due to my irregular periods and excessive bleeding. I would bleed for two weeks per month, that’s half of a year!
The doctors insisted I stop my birth control pills due to the risk of blood clotting and get an IUD instead. Blood clots are another common problem for transplant patients requiring us to be on some form of blood thinner. The doctors were ready to place the IUD at that moment but then decided against it since my health and immune system at the time were not in a stable place which put me at a higher risk for an infection.
Well this week was a few months later and I received my IUD. The thing is, Sterling is willing to have a vasectomy, but due to my irregular periods, a vasectomy would be pointless because I would still need an IUD. Receiving my IUD was one of the most painful experiences I have ever endured however brief it was. The first attempt failed. I was screaming and crying and there was blood all over the floor and table, and I tapped. I quit. Thankfully, I have the most amazing husband who helped me control my breathing and kept encouraging me to try again. He was successful. We tried again, and although it was still immensely painful, it wasn’t as bad as the first attempt. If it wasn’t for Sterling, who originally wanted to stay in the lobby I would not have gone through with the IUD which would have left me no other option for my bleeding but just to deal. I thought I was at my pain threshold but he knew I could do it and he was right.
That was a very traumatic day for both of us. That man has seen way too much, between that and seeing my heart outside of my body. We called my parents on the way home from Duke to get my mind off the pain and explained what our morning was like. Next thing you know as I am laying in bed a beautiful bouquet of flowers arrived. My parents are amazing and always find a way to cheer me up even if it’s just a little.
Between fighting CMV and the joint pain, I have been bedridden for most of this entire week. I begin cardiac rehab in two weeks. With the rehab hopefully providing me a physically active routine and the Valcyte treating the CMV I'm hoping I can begin feeling better rather soon. I tend to get down on myself when I don’t do as much as I have in mind or I’m not as active as I should be. This past week I thought I was just in a funk. After finding out I was fighting a virus it was a relief. It was a relief to know I just wasn't succumbing to my depression. With transplant, it is difficult to decipher between when you are not feeling well due to depression or whether there is something physically wrong. That unsureness makes fighting through fatigue and pain even more challenging. Right now I am resting, hoping for the best and will provide an update after my next blood test.
I commend you, as the reader, if you were able to make it through this entire post. Like I said, my original one was much better but I'm tired and don't care! As always thank you for the continued support and love. Keep staying safe and wearing your masks and enjoy the pictures of these lovely flowers below!
Trying to keep my Go Fund Me page alive, I updated it slightly.
No comments:
Post a Comment