Co-morbidities and ET

Now what? Navigating heart valve issues

with ET.

In addition to juggling ET, I am also being monitored for a wonky mitral (heart) valve. Just had my annual echocardiogram to check on its progress, so this is a good time to talk a little about how ET complicates the health picture for those of us with additional health issues.

My mitral valve prolapse was officially diagnosed when I was about 30. (I think I've recounted the story about how one of my college friends in vet school actually detected the murmur when we were in our 20s and playing around with her dog stethoscope. Yes, people doctors could learn a lot from veterinarians ...) 

My Day: Twelve years into ET, what's it like?

Warning, warning, warning: This post is more or less a reality check about what it's like to live with ET if you're me 12 years after the first onset of the disease. It's not necessarily a typical day for most ET patients, or even ET patients in their 60s. We are all different, and our diseases progress at different rates based on lots of different factors. So I'm not touting what I think is "normal," here, just what's been my experience.

I will also say that I feel better than I did before I started on hydroxyurea (HU) and when I was working and my time was not my own. On those days, I was exhausted by 3 p.m., and I would often go to bed as soon as I got home from work. The HU helped with fatigue, but so did learning to pace myself and find my own daily rhythm after I retired. 

Anyhow, here's my typical day: 

Night time: I try to get 7-8 hours of good sleep each night. This is easier said than done. I have always been an anxious and light sleeper, and this has become worse over the years. I also have night sweats sometimes and very dry mouth that wakes me up. On a good night, I wake up once and go back to sleep immediately. On a bad night, I wake up every two hours, as if an alarm had been set. Fatigue is always worse after one of the bad nights. 

MPN Foundation studying MPN disease progression

Understanding how ET and other MPNs progress to more serious illnesses--myelofibrosis or acute myeloid leukemia--will be a focus of the MPN Foundation in the coming years, Dr. Raajit Rampal (Memorial Sloan Kettering), MPN expert and advisor to the foundation, said in a Zoom program February 24.

The program was also sponsored by MPN Advocacy and Education International.

Dr. Rampal outlined the many questions that still surround progression in MPN patients: Why do some patients progress and not others? Can progression be stopped? Will patients continue to need treatment if disease progression can be halted? And at what point in disease progression should any new medications be introduced to avoid what Dr. Rampal called "clinical or financial toxicity," that is the patient's ability to tolerate and afford a med that halts disease progression should one become available?