What next?

[Shellbi]

Saw the Cardiologist today. He suspects Atrial Fibrillation and now I’m wearing a heart monitor for the next 2 weeks. Then he will do an ultrasound. I had spent time at the ER last Sunday due to resting heart rate between 118 and 130 most of that day along with my toes turning blue briefly. The night before that I had my 1st ever visual aura migraine.

So now I’m in the process of 2 separate diagnosis’s. I’m waiting on the genetic mutation testing results for JAK2, CALR, MPL. Then will have a BMB. Platelets have been elevated for over 3 years and lately my WBC and Neutrophils have been elevated off and on. They will be high one month, normal the next month and then high again the next month.

Does AF cause chronically elevated platelets? Could I be dealing with just a heart issue and not an MPN? Or am I just being wishful. I’m only 53 and this just sucks. Especially considering that I exercise regularly, eat an anti-inflammatory diet and drink tons of water everyday.

I’m sorry to be whining and I know no one has any answers but I really do appreciate the insight and experiences from y’all.

Yes, I am a Texan! Lol!

[Rachelthepotter]

Hi. If you are in Texas, then try to see Reuben Mesa , who has just become head of Mays Cancer Centre in San Antonio. Ex Mayo Clinic. He’s the expert on MPNs .

://uthscsa.edu/patient-care/ph...

Rachel

[Shellbi in reply to Rachelthepotter]

Thank you! I actually checked him out. He’s on my insurance plan and I live about 45 minutes north of San Antonio. I’m going to wait for my mutation tests to come back and then schedule an appointment with him.

[Anag in reply to Shellbi]

Hi Shellbi.

We wrote some days ago. You are doing the right thing. I was diagnosed with ET CALR at 52 after my third light stroke. The AF is most important right now. The MPNs are something you can live well with. We’ll help you through that. I know what you are going through. You have to get through the initial emotional turbulence and all will settle and you’ll get into a daily routine. Please try to do breathing exercises. Sleep is of utmost importance!!! It is a blessing that you are near St. Antonio and that this dr is covered on your plan! So smile! Look forward and let us know how you are doing. Anag

[SuekJ]

Hey there,

I’m in the UK, I am 57 ET jak2+, 2 years ago I had heart problems and ended up being diagnosed with severe stenosis in 2 of my coronary arteries with mild damage to the third. My cardiologist told me this was a direct link to my MPN. Like you I live a healthy lifestyle, ZERO sugar, very little wheat, gallons of water, no processed foods, organic where I can and regular exercise. I was really shocked to be diagnosed with chronic heart disease and angry that my haematologist had not suggested this could happen and did not prescribe any meds up to this point other than aspirin. It was the cardiologist who suggested to the haematologist that I start medication to reduce my platelets immediately! Count was around the 1mil figure at the time. It now hovers around 400 with Anagrelide. I think the link to heart problems should be taken more seriously and patients should be made aware that it could be a side effect regardless of how rare.

I wish you all the very best with your treatment and hope they get you sorted!

[hunter5582]

I feel you Shelbi. Last year, following a surgery that triggered reactive thrombocytosis on top on my diagnosed ET, I discovered that I had progressed to PV. Found this out while in the hospital with paroxysmal atrial tachycardia. Back on chemo (HU) for the PV - got the platelets down - then did a catheter ablation for the tachycardia. The surgery worked for the heart issue, but then had to start on phlebotomies for the PV. Phlebotomies worked great after a while for getting the blood numbers down; however it was just discovered that now my iron levels are way too low. Just to make life more interesting, this is happening while I am waiting to do a surgery (resection) for a brain tumor found in my occipital lobe a couple of months ago. Sometimes things really do pile on. This is a great forum for getting information and support, I have found it very helpful while dealing with all of this MPN stuff, especially when other related or unrelated conditions complicate things. The good news is that the MPN and the heart condition can both be treated.

Thanks to all y'all who support and inform when things get too tough to handle alone. Yep- we talk that way in West Virginia too!