Tough Week: CMV & IUD

***Before you read this, I want you to know I wrote this entire post which took roughly three hours and then it randomly deleted itself.  So now I have rewritten the post although not as good as the original, not that you would know because you never saw the original.  But I did, and it was better, but now my brain is exhausted.  It took about an additional two hours to rewrite this while trying not to let the frustration get to me while also trying to remember what the hell I had just written.  So yea, that's cool.***

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.

Found the Bright Side

I just want to take this time to thank everyone for the love, support and encouragement you all continue to shower me with.  I do apologize that I have not personally responded to comments regarding my awesome haircuts, it's just quite exhausting for me.  Just know that I see you all and love you all.

I finally recieved my call today regarding my biopsy and I have NO rejection which is awesome!  It was followed by a BS excuse as why I wasn't called on Friday but I will not go into that and will move forward.  I do have to increase my Tacrolimus (main rejection medication), also the one that is causing my hair loss but I also get to lower my steroids a little bit.  I'll probably have even more severe joint paint but we will work through that!

As you all know I have been struggling with this Heart Transplant.  I haven't been able to see a plus side yet.  But then it hit me.  I have been having my groceries delivered due to my risk of getting any kind of infection, although much more expensive and they don't always do a good job of selecting and/or replacing your items.  As Sterling was doing yard work the other day our groceries were delivered.  Instead of asking for his help I decided to do it myself.  I was able to bring in all of the groceries, put them away and still managed to have energy left.  During heart failure, just carrying two bags of groceries would get me out of breath and then I would just have to sit down for quite awhile.  I'm able to bend over to reach things, pick things up, move things, all with out getting absolutely exhausted.  I'm also able to walk up hills and stairs without my heart racing although still difficult due to my muscle weakness.  

So as hard as this journey has been I am at least able to start living a life, which is why they wanted me to get a transplant before I needed to be hospitalized.  You can't always choose your life battles but you can choose how to fight them.  And you can't fight alone.  I am blessed to have such an amazing support team of doctors, family, friends but most of all my husband.

My husband cooks when I'm too tired, does the laundry when I can't, takes care of the trash, is always cleaning the bathrooms or kitchen or floors, takes care of all the yard work in the dreadful heat and humidity, gets anything that I need if I'm unable, consoles me when I need it, gives me space when I need that, takes care of me any way imaginable when I'm sick, watches anything I want, listens to anything I want, and does just about anything I want as long as it makes me happy.  He is my heart and soul and wouldn't have been able to do this without him.  I love you Sterling Cornelius McBride.

Speaking of the summer heat, it has been very difficult to get outside and exercise.  The only possible time that is manageable is early early in the morning.  However, I am still having a very difficult time with getting a good night of sleep so although I wake up early, my body does not want to get out of bed.  The doctors want me to be more active so we are trying to go on a walk every other morning.  Below are some recent photos of our last two walks.  By the end we are drenched and exhausted but at least I'm trying.  I should also be starting Cardiac Rehab soon, which will provide me a safe place to workout in an air conditioned environment.

Thanks for reading and stay safe out there and wear a mask.  Love you all!

June 20, 2020 Update

Today marks the 4 month mark since my transplant.  Not only that,  but it also marks what was supposed to be the weekend of our wedding.  A date that was already planned and set before finding out I was in heart failure and that Sterling and I needed to move back east for the transplant.

I had another biopsy this past Tuesday and everything looks good as far as functionality.  However, I did have low level rejection (Lv 1).  This is common in the first year but after having a couple biopsies with no rejection and being 4 months out, it does scare me.  I have been having a difficult time lately trying to fight through serious mental and physical fatigue.  It's tiring just to convince myself that I have energy to do something, and when I am successful I'm usually hit the following day with intense pain which includes joint pain, muscle aches, migraines, and zero energy to get out of bed; which is all the more defeating.  I seem to have about two good days a week at best on average.  It's frustrating and stressful and the medicines tear your body up, also both physically and mentally, especially the steroids.  There's not much positive I can say at the moment other than my husband is amazing at helping me in every way imaginable, oh yea and I'm alive.

Having an organ removed from you and then replaced by a stranger's is a hard concept to grasp, my body thinks so too.  I know I'm making progress as small as it may seem.  But even so, after a certain point it becomes very challenging to keep fighting just to stay alive.  I've been fighting with my health since I was a child, and I'm just tired and exhausted.  This is in no way me giving up, I'm just being brutally honest with myself and the world.  I don't ever photograph the bad days, so it can look as if I am doing amazing.  Nothing about this is easy but I ain't no quitter and I'll continue to put one foot in front of the other even if that's only every other day. As for now I continue my meds and go back for another biopsy in a month. 

The Covid-19 situation presents another roadblock into keeping a strong mental game.  It would be lovely and relaxing and a needed change of pace to be able to go to a friend or family members house for a nice conversation and dinner or go to a brewery or coffee shop to play a board game, or go down to the beach to celebrate what would have been our wedding day.  But neither of that is in the cards for us anytime soon, especially with the rates rising so drastically here in the south.  I'm not even allowed to venture into a grocery store or even a dr's office (unless it's a critical matter), I wasn't even supposed to go to the farmers market, but I was careful and I needed it for my sanity.

As I mentioned previously, this weekend we would have been in Charleston, SC by the water getting married.  Although, to be honest, I much preferred our court house wedding on Valentine's Day.  Small crowds are more my style, better for my anxiety too.  The following are some photos of our wedding day, me winning in Catan Rivals, me giving Sterling haircut #2, and me getting some steps in.  I know I'm lucky and I know I'm doing pretty well for only 4 months out, and I certainly know I have an amazing support team between my husband, my family and my friends.  I'll keep moving forward as long as possible no matter how bumpy the road. 

4 Month Post Transplant:

• Steroids: They make me emotionally unstable, break out like I'm a greasy teenager, make me grow man hair, and still provide me with a bloated face.

• I've been able to get back into cooking and meal planning and laundry when I have the energy 

• My motor control is still very shaky making certain tasks and hobbies difficult.

• I walked 2 miles the other day which is the longest walk to date since transplant

• My days still mainly consist of binge watching Netflix, playing games, and reading at night.

Thanks for the continued support and the random gifts and cards that keep my spirits high.  Stay safe everyone and please wear a mask for people like me!