I completed the series of cardiac tests. The results all look good.
Calcium Cardiac Score = 0 (no buildup)
Echocardiogram = No issues. Ejection fraction =72% (high functioning).
Cardiac Stress Test = No issues. Rare Premature Ventricular Contractions noted.
Heart monitor = Several incidents of atrial tachycardia that were short-lived. Several looked like a reentrant tachycardia. All were 7-13 beats. None were sustained. Rare Premature Ventricular Contractions were noted.
Cardiac results pretty good for age 67. The heart is structurally in good shape. The issues with arrythmia we knew were present. There were no sustained tachycardia incidents while monitoring. Those have been declining. So, no explanation for the occasion mild tachypnea incidents. Could be related to the arrhythmia, to a Besremi adverse effect, or both, or something else. It hasn’t happened recently, so perhaps just a passing phenomenon.
Also went to the endocrinologist. All endocrine function is within normal limits. We will continue to monitor annually given the family history and use of Besremi.
The Liver Function Tests all remain Within Normal Limits. Current CBC results include 01/20 HGB=14.2 HCT=43.7; 2/17 HGB=14.1 HCT=44.2%. So, staying in goal range for the erythrocytosis. The single venesection did its job. If the HCT continues to creep up to over 45%, I plan to opt to increase the Besremi to 175 or 200 mcg if my LFTs stay stable. I do feel better with my iron levels higher. Providing I tolerate a higher dose of Besremi, if needed, that would be my preference.
The one advantage to doing a second venesection within six months would be that I would qualify for the Rusfertide clinical trial. I am interested in the potential of combination therapy but would prefer mono-therapy with Besremi providing I tolerate a higher dose. We will see how things go.
So, things are going well. I remain very pleased with my response to Besremi. The benefits definitely outweigh the risks/adverse effects.
Wishing the best to all of you all.
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hunter5582
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Excellent report all round Hunter. I’m pleased to hear and see your results.
I’m struggling at the moment with some issues with right kidney area pain with nausea. Had two abdominal scans last year in which all was reported OK, but these symptoms have been occurring at intervals about four monthly through the past 2/3 years, so trying to get to bottom of cause. An ultrasound scan is being arranged, hopefully quickly. I’ve asked if the ET or Hydroxy could have anything to do with it but they don’t seem to know. I’ll keep battling on. Glad you’re coping well. Regards Fran
I hope your care team gets things sorted out. It can be hard to figure out what is the MPN, the hydroxy, or unrelated to either. ET can cause kidney issues, as I am sure you know. ncbi.nlm.nih.gov/pmc/articl... . Hydroxy can cause renal impairment and a variety of GI issues, including nausea. And of course we can have unrelated issues. I have had some kidney cysts and age-related weaker kidney function. Hydration is a must!
What an outstanding milestone to accomplish on your MPN journey. Thank you for sharing the details of your experience. I learn a lot from you that helps me along in my journey. Thank you and congratulations, Hunter!
hunter5582 this is all great and encouraging news. What was involved in the Calcium Cardiac Score test? How is it performed and was it done for PV purposes, or do you have an underlying condition the dr. was testing for?
I have an arrhythmia that required surgery several years ago. I continue to have occasional minor tachycardia incidents and recently have had some minor tachypnea incidents. In the context of also having PV, we monitor my cardiac status carefully due to the increased risk. The testing was in part routine monitoring but also in response to the recent tachypnea episodes. Better safe than sorry when dealing with both PV and a heart issue.
The cardiac CT calcium scan is a simple test that only takes a few minutes to do. In the USA, it is not covered by many insurance programs unfortunately. Cost varies quite widely. i shopped it around and was able to get the procedure done for $104.00. Here is some information about it.
"A cardiac CT calcium score, also known as a coronary calcium scan, is a quick, convenient and noninvasive way of evaluating the amount of calcified (hard) plaque in your heart vessels. The level of calcium equates to the extent of plaque build-up in your arteries. Plaque in the arteries can cause heart attacks." hopkinsmedicine.org/imaging....
Thank you. You would think insurance would want to cover it if it can show plaque build up which would promote treatment before something catastrophic happened (which may be more costly to the insurance company).
One would think; however, it is not considered to be medically necessary. Rather odd since if there is significant buildup it can have such serious consequences.
Dear Hunter, The news is exciting, cardiac calcium 0! Whoohoo! It is reassuring to have those sorts of reassuring results to keep your mind in a more or less contented space. Thank you for letting us all know.
I just had (yesterday) a hernia repair by laparoscopy, which I tolerated very well. I had one surprising experience in the days before when the anaesthetist called me at home and asked me to resume taking aspirin due to my MPN. I thanked him yesterday, as it was the pre op nurse who asked that I stop it for a week before surgery and I had. Grateful that someone was at least trying to make allowances for this problem. My haematology work results remain great, liver enzymes and renal function too.
Hope you continue to have positive results and feel well taken care of. It matters so much.
Starting to look like spring here, eagles nesting, song birds warbling, peonies poking up.
That is great that the doc made the adjustment to the typical aspirin d/c order based on the MPN dx. My GI doc had me d/c only 2 days before the colonoscopy. It is great when we have docs that know to make adjustments to the tx plan due to the MPN.Spring is starting to roll out here. The daffodils and crocuses have popped here. Another few weeks will see the cherry blossoms in bloom. I am ready for Spring.
Heck pop, your EF is better than mine and I'm 30 years younger than you. I'm really glad you got put through all those tests, it gives us some peace of mind.
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