I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification.
In the past 3 years, I have had 2 nuclear stress tests, cardiac ultrasound, chest Xrays, abdominal ultrasounds and nothing was ever mentioned about calcification of my aorta but now it’s severe!!! I did have a stent placement in my LAD and angioplasty of a smaller vessel in 2020. I have mentioned this in previous posts.
My concern is how these two new issues will be impacted by my PV. I switched to Jakafi a few months ago and had one phlebotomy. I’m thinking it was August. The last two months my HCT has been 41 and 41.6, however my platelets continue to bounce between 700 and 800 and my white blood count between 14.8 and 15.
I am on 50 mg Toprol, 20 mg of Altace and 10 mg of Effient, daily, 15 mg Jakafi 2 x a day and 81 mg aspirin a day. And Crestor 30 mg 2 x a week. I read that it is important to control BP with an aneurysm and to not lift over 10 lbs. I don’t see my cardiologist until Jan 10. I am less freaked out than I was yesterday but still pretty flipping upset by this!
anyone else in my boat?
thanks so much!
Kim
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Wewo01
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hello Kim - So sorry I can’t give any advice on this, other than to know how you will be feeling getting hit with a rubbish diagnoses to go with your PV! (it’s frustrating and upsetting) - I hope you can have a good xmas break and hopefully your cardiologist will be positive with treatment options next month - very best Anne-Marie x
Hi. I wrote this (even longer) reply and then somehow deleted it before posting. As it’s early morn here in the East Coast US, I’ll write more later. However, yes, I’m with you. I have sMF, aortic root calcification, an existing aortic valve replacement of some vintage and an ascending aortic aneurysm at 5.1.
There’s good reason to be upset but stress is your enemy now - so, please, relax as best you can. So sorry for this news but there’s hope
- My docs at Massachusetts General Hospital recommend surgery for the aneurysm between 5.0-5.4cm. The aortic root that is calcified can be “rebuilt” at the same time as you repair the aneurysm. That said, it’s critical your cardiologist have all the records from your previous diagnostic procedures so they can inform how best to approach your issues. Advocate for yourself as your routine docs have already missed the aneurysm. One does not simply arrive at a 4.0 cm aneurysm w/significant calcification! How are you feeling as to shortness of breath, fatigue, etc?
- More to follow as I have questions and can fill you in on my journey as well. There are definite considerations with an MPN as to how you may best proceed.
- Don’t know if there’s a direct messaging capability here but certainly willing to use that going forward, if you wish. Either way happy to support you and, perhaps, to be supported. More later, especially about your meds. Happy Christmas, if you celebrate
I am very appreciative of your response! I am sorry that you are experienced in the subject but glad for me to be able to gain your insight on the subject. There is private messaging on here. I’ll find it and message you soon. Thank you so much!
Sorry to hear about this news. It is understandable that you would be flipping upset. Like dealing with a MPN and the other stuff was not enough!
I had something related to the aorta & pulmonary areaties back in 2013. I had an incidental finding of "prominence of the ascending thoracic aorta demonstrating a transluminal diameter of 3.7 cm. There is enlargement of the pulmonary arteries with transluminal measurements of 3.0 cm on the right and 2.7 cm on the left." There was a suspicion of pulmonary hypertension. In the context of having both Neurofibromatosis and a MPN, it was a concern. After a more thorough review, it was decided this was incidental and there was no evidence of a disease process. That was a big relief. I recently had a Cardiac Calcium CT, the first anyone ever ordered. These are not considered "medically necessary" so I had to pay out-of-pocket. Good news on this one was Calcium Score = 0.
One thing I have learned managing multiple conditions is how important it is to arrange for coordinated care. Collaboration between the different parts of our care teams does not happen on its own. We must take responsibility for ensuring that the collaboration occurs. We have to become our own case managers to ensure that collaborative holistic care is provided.
Given what you have described, you may soon have one or more providers involved in your ongoing care. You may also need to be seeking second opinions regarding significant medical decisions. Ensuring that a skilled MPN Specialist is involved at each step of the journey will be very important.
Your question about how the PV will interface with this new cardiovascular finding is a good one. This is something to review with your MPN Specialist. I would note that the primary risk factor, erythrocytosis, appears to be well controlled. I would worry less about the exact number of the platelets. How the platelets behave is more important than their absolute number. It appears that you are already acting proactively with two antiplatelet medications, so you have taken action to protect yourself. Please be sure to review your question with your MPN care team and see what they advise.
I believe you are 110% correct about the importance of controlling BP. Since you are already taking an ACE inhibitor, your BP may already be well controlled. Your cardiology care team can best advise on this. The reduction in the viscosity of your blood by controlling erythrocytosis will certainly help with this.
While this situation is concerning, have confidence that you will work out the best possible care plan. Ensuring collaborative integrated care is the best way to achieve this.
Please do let us know how you get on and what you learn.
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Good news on mutant allele reduction on Jakafi.
Is it just me, or has this disease taken over my life? Problems since being diagnosed. 
Just been diagnosed with ET
Just diagnosed with ET
