I have been really silent on this blog. The only excuse I can give you is that have been BUSY! I spent the last year catching up on life. It might sound dramatic but there were so many little things I could not do while I was ill. There were also so many things I could not eat and I am now enjoying! In a nutshell: I am enjoying my life.
I am so grateful for what has happened over the past year and I can honestly say I have a new outlook on life. I enjoy every moment, no matter how little. I have learnt to appreciate the littlest things. I have always been a firm believer in “everything happens for a reason” but the last two years has honestly brought new meaning to that saying for me. I am happy and excited about life and the future. I am thankful for the support system I have and the friends and family that made the last two years so special for me.
It is also only fair to point out the struggles I have had post transplant. I always said I would be honest about my experience. Before I get into this, I want to say that I am incredibly lucky to have such a good experience post transplant. I follow so many people on Instagram who are suffering from CKD around the world and they have some scary post transplant stories. From rejection to skin cancer, I have honestly read so many stories. These people overcome some of the most incredible challenges.
I realised very late (maybe 3 months ago) that the way I worry about getting sick again is not normal. If I take my medication a little bit later than normal, I worry about rejection. I will begin sneezing and I remember that rejection has flu like symptoms. These things play on my mind all the time and I end up worrying for ages. I am well aware that this new kidney of mine won’t last forever and it really is a mindset change to try and tell yourself that you need to appreciate each day rather than to worry about when the kidney will fail.
The way that I can’t adapt to sudden change is due to what I have been through. Before I was diagnosed, I had no idea I was ill. My life literally changed overnight. The one day I was at a bridal shower and the next I was admitted to hospital with absolutely no symptoms. One month later I had my first surgery and a week later I started dialysis. It is a lot to happen in a short space of time to someone who’s never been to hospital in their entire life. So now every time something out of the norm happens, I panic. I struggle to adapt. This applies to my own life and to those who I love. I worry about myself and about them.
So I am going to be honest and admit that I have gone to my doctor to discuss this and I am now I am taking something for anxiety. Mental illness is not often spoken about or is at times just seen as something that is “in your head”. It’s okay to admit that things are not perfect and that things bother you. And it is okay to get help.
Something else that I struggle with is my sudden weight gain. I picked up 23kg in the year post transplant and I am struggling to lose it. Sure I can blame the medication (which causes increased appetite) but I have also become lazy and comfortable with life. This is something I am battling to overcome and hopefully I will soon. It upsets me that I have picked up so much weight and that my clothes no longer fit me properly. I am uncomfortable in my own body and that is not a nice feeling. I have started making small lifestyle changes and I am hoping that I will have the patience to realise I have to take things a bit slower in order to achieve my goals.
The final “negative” I need to mention is that it took me a while to adapt to the fact that my body is no longer the same body I had two years ago. I have been through a lot mentally and physically and I sometimes expect too much from myself. I often try to live the life I had before and something as simple as standing on my feet for an extended period of time is difficult. My back aches or I just get tired. It frustrated me so much in the beginning because I could not do everything I wanted to do. I had to go from being a very busy person to a busy person who takes many breaks. Those that know me will know how much I enjoy being busy all the time. I now enjoy being busy with a daily nap to get myself through the day!
I have spoken about what is different before but so much has changed since then. You can read that post here.
I am incredibly grateful for everything that has happened over the past year and I am living each day as it comes. I have made some incredible memories and plan on making a lot more. Thank you to every single person for being there for me (especially my family). To those that made my transplant day so special and to those who made the simple gesture of just popping me a message to see how things are going, I am so thankful. You will never understand what small gestures mean to someone with a chronic illness. You have all made this crazy experience so much easier. I would not have gotten through this without the incredible people I have in my life.
So thank you. I don’t know if I will continue to update this blog in the future but I will if I feel like I have something to share
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.