The following is sectioned into four parts.
Forewarning...it is long!
Part 1: Health
November 20th officially makes me 9 months post transplant; although to be honest it seems like the surgery was just yesterday! This post was intended to be published the weekend after my last biopsy that I had on Oct. 28th, but my lack of focus and procrastination prevented that from happening so here we are.
In other news, the biopsy results were the best to date: zero rejection, negative for CMV, red blood count went up to a normal level and function and structure looked great. My white blood count is still on the low side but we will address that after a few more blood tests. Due to the positive biopsy results, I am able to reduce my steroids and one of my rejection meds (Cellcept), a lower dose of both will hopefully help aid me in feeling healthier.
I was informed, however, from fellow ARVD transplant patients, that most of their tacrolimus levels are between 4-6 approximately. Whereas my doctors want mine around 12. The difference doesn't seem like much if you aren't familiar with the drug but it’s incredible how much better one feels on a lower dose. When my levels were around 20, I was in extreme pain that kept me bedridden pushing me to my pain threshold. My biopsies are now 2 months apart so hopefully if my next one (Dec 16th) produces positive results then I will ask if lowering my tacrolimus is a possibility.
Ever since my appendectomy I have been feeling a great deal better.** In combination with my medication reductions, I have felt less fatigue and lethargy and have had less bowel issues and nausea. This has allowed me to start cooking, catching up on chores and resuming exercise. After consulting with my transplant team, my family and my husband, I recently made a decision to stop attending cardiac rehab due to the restrictions that were placed on me as well as the limited equipment and availability. Cardiac Rehab did not allow me to use any weight or stand-up machines even though my doctors gave me the go ahead, therefore I was not able to take advantage of the days I felt strong and energized. Instead, Sterling and I joined a very nice gym with strict Covid protocols. The gym has a pool which will eventually allow me to ease my way back into swimming and lots of nooks and crannies so you can space yourself out from other members although it’s been mostly empty.
**Feeling better = One strong day and then 1-2 rest (do nothing) days
Part 2: Wellness
Recovery from a transplant is a hard fought war that will never end. This takes a toll on one mentally. Transplant drugs are known to cause erratic emotions, pain tries to convince you to give up, and speed bumps trigger depression, anxiety, hopelessness, and being too self critical. For that reason, a transplant psychologist is assigned to your case. Mine is currently following up with me monthly. Although I am the one putting in the leg work daily, he has helped me tremendously. I was prescribed Cymbalta for my depression and Ativan for anxiety and sleep. We just upped my Cymbalta dose and that has helped give me energy. Apparently depression can cause physical fatigue, not just mental. My body is very sensitive to these kinds of medications so even though we have increased the dose it is actually the normal starting dose for the majority of people.
As I have encountered setbacks this year, I often respond to them with self hate. I tend to judge my lack of actions too harshly, and so my job now is not to be too critical on a day I lack energy and strength and just rest, even if that includes consecutive days. My mom helped put this situation in perspective. She said I act and respond to my many setbacks (surgery, rejection, infections, etc) by processing the circumstances as normal because I am so accustomed to these now routine occurrences. She helped me see what I have and what I am going through is in fact anything but normal. I will say even my transplant team was shocked at my recent appendectomy.
I also had a self realization one night recently where I noticed I focus too much on the future instead of living in the present. This inevitably causes me undo stress and anxiety. I have always been one to not make plans too far into the future because I know something will manifest to change said plans. But for some reason I worry about issues that I’m sure will work themselves out when that time comes, as they always seem to do. So why do I continually put my mental health in a pathway of destruction for a future I cannot foretell?
For instance, I cannot get the thought of having to return to a job I hate sooner rather than later. As someone who is on disability (which is next to nothing) and married to a teacher, our finances are not sustainable. I stress myself out almost daily recently thinking about where I will work and when I will need to return to the workforce. Thinking of the stress of resumes, interviews, business clothes, and many hours away from the comfort of my home. Yes this is stressful, but why does it have to be. Why do I need to give my energy to something that is not immediate? That is my goal, to let go of unnecessary stress from things I cannot control.
And since my goal is to not look into an unpredictable future that means when I live in the present, I need to make that a healthy living situation. When I do live in the present I tend to dwell on the negatives rather than looking and appreciating what I have, how far I’ve come, what I’ve endured, and the amount of progress I’ve made. I need to practice self-love because I AM beyond grateful for everything in my life and the simple fact of being alive. There were many times throughout my 33 years so far I should not have survived, but I did, I am here, and I need to love myself!
Part 3: Hobbies & Goals
My Psychologist and I also conversed on how I have so many hobbies and crafts I want to get started but I am overwhelmed between my health, chores, and learning a new project. We agreed I should just start somewhere, that a tiny little step was better progress than not. For one, I moved my hobby supplies out of the office (Sterling’s man cave) and into the living room so they will be in sight. I also started painting a large floral pain by numbers canvas that a friend sent me this summer, it is much harder than I anticipated. Baby steps!
I also started cooking again this week. Which by the way, I have to give props to people who are able to create content for blogs and social media on a daily basis. That takes more work than many realize. I have really enjoyed sharing my food journey on my new Instagram page (@kielsfoodlife), although I will admit it’s nothing special. But taking pictures everyday of my food or while I’m cooking can seem so taxing sometimes and consequently I don’t get around to posting as much as I’d like or taking additional photos of the cooking process. When I do get around to capturing my meals you have to then edit and post the pictures, write a caption and expel even more brain power when you’re already exhausted. I’m tired just thinking about the process and that’s why I’m giving a shoutout to daily content creators...I see you!
I have a goal of creating a new blog/website by my one year heartiversary (Feb 20th). The blog will most likely be through WordPress but I am hoping to have my own domain name. It will incorporate my health updates and writings, my cooking, photography, and any future hobbies I might try to explore (macrame, DIY projects, anything to get my creative juices flowing again). I am a product of an artist/designer so I do have a creative side to me, it has just been suppressed for so long between all my health scares and surgeries, heart failure, and work from the past 10 years or so. I hope I am able to tap back into that side of me and if I had to pick a way to earn income I would love it to be through things I created myself that others are interested in purchasing.
Sterling and I are also considering investing in a couple of bikes, giving us the opportunity to explore the greenways a bit more here in Raleigh. However at the moment we don't have the necessary funds or conditioning. If we purchased the bikes, we would also have to purchase a bike rack for the car, helmets, bike lights, locks, etc. which add up quickly. We have started exploring parks around town but my legs do not have the stamina to walk far on uneven grounds quite yet. Slowly but surely, I just need to do what I can and to stay motivated.
Part 4: Love and Thanks
As always, thank you for all the love and support, especially if you made it through this incredibly long post. I also want to express empathy and love to some of my friends out there struggling, I see you and hear you and I can understand your battles to a certain extent. My mental and physical health are occupying enough of my time that I feel a bit saddened I cannot do more to help. But please, I have had enough friends die unexpectedly or from suicide and it saddens me to the core, I do not want to see another one go because they felt as though no one cares or no one is listening. Please seek help if you are one of them, people do care, I care, but I also need to care for myself. I love you all very much!.
In addition, you should know that Sterling and I could not have made it this far without all of the emotional support but also the financial support. Your donations mattered! As I have stated before, many of our friends and family are in a similar situation as us, especially during Covid, being underpaid teachers and essential workers. However, if you are able to donate anything to help Sterling and myself we would be more than appreciative. We do not enjoy asking for financial help but during this time we are using all of our available resources and this blog is one those.
We are very fortunate that my parents have the ability to help financially, especially with my medical and prescription bills. I am not sure how people are able to afford a transplant without Medicare or top notch insurance. The average cost of a transplant is around a million dollars (no, that is not an exaggeration) and luckily Medicare covered the majority of that cost. Many of you might remember when I originally became sick in 2010, I had to file for bankruptcy because my medical bills tallied over half a million.
Sterling is now having to deal with his own medical bills from the dermatologist, pulmonologist, and the dentist (needs a crown to replace a failed one and an implant or two) as well as his college loans and car payments. If you are able to help in any way whatsoever, it will not go in vain. If you are not, we completely understand, we are just extremely grateful for the friends and family who have gotten us this far. It has been a grueling journey but we are still chugging along on our way up!
I want everyone to stay safe during the holidays, I know Covid fatigue is setting in with many. Keep up the positive vibes and hopefully 2021 will be the opposite of 2020, we all know we need it!
Until next time (hopefully on a new blog) Peace Y’all!
Kiele's Food Life
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| Turtle Apple Pops |
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| Paint by Number Canvas |
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