Thus far, we have discussed the history and the pricing of immunosuppressive drugs. What we have not discussed is the deeply personal cost of transplant. Nearly every one of us transplant recipients has experienced some level of impact on our lives caused by these drugs.
The impact on my own life has varied over the years. After my first heart transplant in January 2006, I had a remarkable recovery, returning to full-time employment before the end of the year. Shortly after my one-year transplant anniversary, my care team discontinued my prescription of Valcyte which was given as a prophylactic to prevent Cytomegalovirus (CMV) because I was CMV negative, and my donor was CMV positive.
Within two weeks of discontinuation, I developed a full-blown case of CMV. The infection was quickly controlled through resuming the use of Valcyte, but not before the virus damaged my digestive tract. Cellcept further worsened my gut issues, and it was discontinued, leaving me on Tacrolimus and Prednisone.
Once the prednisone ended, I began having debilitating migraines from the tacrolimus. For the next decade, I sought relief from the migraines through injections, dry needling, beta blockers, tricyclic antidepressants that made my face twitch – but none of it worked. I suffered with near-daily headaches that sometimes compromised my vision until I was nearly blind.
After my second heart transplant at a different hospital in 2018, I received Astagraf, which is a time-release formulation of tacrolimus. The migraines magically vanished. I felt wonderful for the first year after transplant (complications aside), but at my one-year checkup, the transplant cardiologist detected the beginning of vasculopathy in my new heart, and I was prescribed Everolimus. I am happy to report that Everolimus is doing its job in preventing the advancement of the lesions inside the arteries of my heart, but this comes at a huge cost.
Twice a day, I take Everolimus, before lunch and before bedtime. An hour after my lunchtime dose, I get very sick and take to the couch for several hours. On mild days, I feel intoxicated and don’t dare to leave the house, and on the bad days, I ride out the bedspins and chills and nausea on the couch. By dinnertime, the sickness has passed, and I can resume normal activities until bedtime.
Of course, I don’t mean to warn others away from transplant. I’m grateful every day for my gift of life. Without the generosity of my two donors and their families, I would not be alive. I celebrate every day I spend with my family. Transplant to me is not so much the gift of life as it is the gift of time, additional time that we are allowed to be here with the ones we love. Earlier this year, my husband and I took a bucket-list trip to Hawaii that we could have never done without the transplant. The image at the top of this post is a sunset at the beach in Waikiki.
Please, if you feel comfortable, share below in the comments what you have experienced, both the good and the bad, since you received your transplant. What are your challenges and your best experiences with this new lease on life? What changes would you like to see in the future of transplant innovation?
Dawn Levitt, Author 
Where do I even begin? I have a blog about my journey. I admit, I haven’t been the best at keeping up with it, but I try! I will try to condense this as best I can.
January 4, 2014, begins my heart journey. I was getting ready for work, loaded a box in my hatchback, and it hit. I’m an ex-paramedic and knew it was either v-tach or afib. Without any way of checking, I could only guess. I did what I could to “break” the rhythm, but nothing worked. By then I knew I was in afib. When I got to work (luckily I was working in a doctor’s office in a big hospital system that also had a great cardiology group (or so I thought). I was taken to the ER, worked up, and given 5 types of medications via IV to stop the fib, again, to no avail.
This started a 2+ year journey to discover the cause of my arrhythmia. The doc I had wouldn’t listen to me, he prescribed tons of blood pressure medication saying that was the cause of my thickened heart muscle (uncontrolled high blood pressure). I had just had a biometric screening in November through my job, and my blood pressure was fine. I fired the first doctor. I hate not being heard! Unfortunately, mine is not an isolated incident. Being a younger (ish) female, and having heart issues…..well, honestly, most docs will say it’s anxiety and treat you for such. I finally found a doctor who listened to me and sent me for a cardiac MRI. That is when I first heard about HCM. I fortunately had a name for what was happening, but I later found out, I was being treated inappropriately. Then, I happened upon a group that was well-versed in HCM and all its idiosyncrasies. I began a trial with a new drug that required a VO2 max. It showed my functionality at 11 (12 is when they begin talking about a transplant). For someone my age and gender, 25 is considered a poor score. When he first mentioned the “T” word, I felt as if I were in a Peanuts cartoon when the adults are talking…..wa, wa, wa, wa, wa. I heard very little after that point.
Four years later, despite multiple attempts by several specialties, I began the gauntlet of testing for a heart transplant. I was listed 6 months later, and received my call 2130, Thanksgiving Eve night of 2020. I was wheeled into the OR at 2300 Thanksgiving night 2020 and into the ICU about 0430 the next morning. It has not been an easy recovery. It has been fraught with many setbacks. I survived (despite trying to die about 6 different times), I have relearned how to walk and talk, and I am back in school to get a degree in social work. I want to help other transplant recipients and their families/caregivers going through this major change in their lives.
My story isn’t over. I still have a lot of work to accomplish. Again, transplant is not an easy path for anyone involved. It is doable! I am proof of this!
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Hi Debbie,
Thank you for sharing your story. You can feel free to post your blog link if you wish. I’m not in competition with anyone. We are all here to support one another.
Your story is very familiar to my own in several ways. I was also a Hypertrophic Cardiomyopathy diagnosis, but I was still in elementary school when I was diagnosed. Just recently, I had a conversation with the Founder and CEO of the Hypertrophic Cardiomyopathy Association and will be writing a post in the near future about the organization. You learn more about it here https://4hcm.org/
There’s not enough room here for me to tell my whole story. That’s why I’m writing a book about the journey and what I learned along the way.
Congratulations on going back to school to help others who are walking the path that you have already trod.
You’re right. Transplant is not easy, but it sure beats the alternative!
Good luck with your school and I wish you a long and beautiful future.
Dawn
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Yes, I am very familiar with the HCMA (I also am on a couple of committees helping the organization). Here is the link to my blog:
http://hypertrophiccardiomyopathy.home.blog
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Thank you! I just subscribed to your blog!
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