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?

ET and covid booster vaccines

NOTE: Vaccination is a personal decision. I chose to be vaccinated, and I am not going to argue this decision with others. Comments of a non-factual nature that spread fear and misinformation about the vaccines will not be published. 

Good news from the docs this week! Like everyone else in the U.S., I have been hearing that cancer patients should be getting a booster shot as soon as possible because of their compromised immunity. But even as an ET patient, you may not need to get a booster right away. I was happy to learn from my hematologist that I'm not as decrepit as I thought, and I can wait the full eight months before getting a booster, just like a "normal" person! 

HOWEVER: Hydroxyurea can affect immunity, as the info sheet reminds you every time you get your prescription refilled. So don't assume that the advice I got will be the same for everyone. Let your hematologist make that call for you. 

I emailed my doc about the booster. One thing the pandemic has made much easier is communication with the hematology office. I usually get an answer within 24 hours for a non-urgent question, and the hematology oncology office has laid on a new nurse practioner to deal with just this type of issue. So the same day I asked the question, the nurse looked up my last blood draw results and decided that I should wait for the booster based on several immunity markers, including white blood count. 

My platelets swim around in the 400-450 range and none of my other blood counts are in the high or low range. I take a relatively low dose of hydroxyurea--500 mg per day plus an extra 500 mg on Mondays, Wednesdays, and Fridays. Those taking higher doses of HU or with blood counts that run high or low may be at different immunity levels, so let the hematologist make the call about a booster for you. This isn't a decision you want to freelance. 

Also, as my hematologist's office reminded me, wear a mask when you are indoors with people whose vaccination status you don't know whether you are vaccinated or not. I know it's a drag, but delta variants are up in my area, and there are more reports of vaccinated people getting sick. 

And while we are on the general topic of wellness, seasons are turning, but there is still plenty of good outdoor weather in both the Northern and Southern hemispheres. Please remember that some ET medications, including HU, can increase your chances for skin cancer. So carry that sunscreen around with your mask! And remember to drink lots of water. Be well! 

Related: Vaccination roulette 

Related: Practical tips for ET patients and COVID19 

Related: Thinking about skin and ET 

Home

ET patients deserve better!

My husband and I celebrate a recent

wedding anniversary.

My husband had a heart attack last week. Technically, it was an acute myocardial infarction, which means he was stricken with chest pain in the parking lot of the Home Depot while loading up some sheets of plywood at 11:45 a.m. He drove himself to the nearest ER, and by 4:30 p.m., he had been taken on an exciting ambulance drive to the big regional hospital, had a stent inserted to clear an artery that was 95 percent blocked, and was eating a pudding cup and feeling no pain.

All of this came out of the blue, and of course we are deeply grateful to the quick thinking of emergency personnel, cardiac catheter lab staff, and the doctors and nurses in cardiac care. 

But we couldn't help comparing the care he got to the care ET patients are offered. It certainly revealed holes in the care most of us ET patients receive. For example:

Vaccination roulette

Health department nurses distribute oral        
polio vaccine ca. 1960.

I have an appointment with a chain pharmacy here in Michigan to receive my first dose of one of the COVID-19 vaccines on March 9. I don't know whether I will get the Moderna or Pfizer vaccine. There isn't any way to choose; you take whatever vaccine the vaccination site has.

Having an appointment for a vaccine, of course, is not the same as actually getting the vaccine. Lags in vaccine production, shipping delays due to weather, difficulty ensuring that there are enough people trained to administer the shots--all of this has created problems in vaccine distribution here in the United States. 

In addition, state and local health departments had to create a network of vaccine distribution sites for people in each locale, and this took time.  Like a lot of people over age 65, I remember the 1960 distribution of the oral polio vaccine and couldn't help comparing that effort to the one going on now. In our town, people were directed to their local polling stations on a given day. There, the public health nurses gave us sugar cubes with the vaccine on it. I remember teasing my younger brother that he would have to get his via an eye-dropper because, at age 4, he was still a baby. 

Seven wishes about ET

In the six years since I started writing this blog, I've talked to hundreds of ET patients online here and through my Facebook page. 

Besides sharing our ET diagnosis, we all seem to share some common wishes as ET patients. So I thought I'd start out 20201 by offering the seven things I wish about ET that I think I share with most of you: 

Wish 1: I wish that health care providers understood that lack of information is the worst "side effect" of having ET. I hear something like this from a lot of my fellow patients: "I was just diagnosed with ET, and my doctor says he's not worried about it. But then I read online that I have cancer! I am really scared now!" Please, health care providers: Five minutes of clear, brisk info and a fact sheet would go a long way toward  helping us better understand our disease.