Has anybody else experienced heart problems with an MPN?I have been having heart palpitations and more severe breathlessness than usual for about 6 months. An x-ray showed an enlarged heart and I've been awaiting the results of an echocardiogram since January, but repeated calls to the hospital and GP told me the results were not back. So I was totally shocked yesterday when a haematologist at my 3 monthly clinic wanted to discuss my heart issues. It emerges I have 2 leaking valves and a condition called pulmonary hypertension. He was also surprised that I haven't been notified by my GP or referred to a cardiologist. So today I get on the phone once again.
Anyway, the cardiologist said I obviously needed treatment but he didn't know what it would be, that I should see a cardiologist ASAP. He would be writing to my GP but he couldn't answer many of my questions.
I want to know is my heart damaged because of the MPN because it has had to work harder, haemoglobin being below normal for 4 years , and is it OK for me to continue park runs and long walks?
Any similar experiences?
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JP1952
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hello JP1952, sorry to hear that you have this problem, and not good that you had to keep chasing up the results. With regards to your questions, it would be best to discuss this with the cardiologist and your haematologist once you have been seen by the cardiologist, they can both advise you on the park runs and long walks. Best wishes, Maz
I have a heart condition, apparently not related to my Mpn and it is very different to what you describe. Even so, I’m suggesting caution and to forget the park runs until you’ve had a cardiology consultation, clear diagnosis and treatment plan discussed. It really isn’t wise to push your heart until you know and are confident about what you’re dealing with. I say this based on personal experience.
Thank you Maz and Rem31 for your replies. Both good common sense. My problem is I don't know how long I'm m going to have to wait to see a cardiologist and if I stop exercising I don't know if I'll ever get started again. Sorry, it's turning into a moan. Need to stay calm and carry on.
You have my every sympathy with the diagnostic process. Mine took years and I really had to push to get a clear diagnosis as it required very specialist testing not done locally. The upside is I have since been able to manage my heart condition (and it’s medication) a whole lot better once I was able to understand it and how its symptoms affect me.
I guess we can say that about any ongoing condition!
Funny enough had an echocardiogram in Jan results arrived in writing this morning to GP and myself!! My local Heam had the results 3 days after having the scan!!I would ask.Your Heam to liaise with the cardiology dept they can get an appointment sorted
Sorry to hear that you had to push to access results of such a critical issue. That is not acceptable quality care. Assertive patients receive higher quality care. Passive patients do not. In this situation strong advocacy is definitely indicated. Your situation is not one where waiting is acceptable. Pulmonary hypertension with an enlarged hear in the context of MPN needs prompt intervention.
The heart becomes enlarged from pumping blood against the resistance. You are clearly experiencing symptoms related to cardiac function. This requires attention as an emergent condition. It would be far better to prevent an emergency than to respond to one.
There is assistance available for advocacy should you wish to access it.
Hi. I’m sorry you’re experiencing this. The not getting responsive medical treatment & information is very stressful. I was diagnosed with heart failure this January & left ventricular hypertrophy (enlargement). I also have atrial fibrillation. But I don’t think it’s related to my MPN but I don’t have low hemoglobin. I’ve had pulmonary hypertension but it improved. Definitely do not exercise until you’ve been cleared to do so by a medical specialist knowledgeable about your specific heart issues. I think from what you said, things should get moving soon about getting a cardiologist. If not, push as hard as necessary to get that accomplished. Best of luck to you. Katie
Thank you Katie for your reply. You state the pulmonary hypertension improved. Do you mind if I ask how, do you mean it got better or your symptoms alleviated with meds?
Hi. My recollection (& I may be wrong) is it was a problem related to many blood clots found in both of my lungs. This is when my MPN was discovered. Once those blood clots went away & my blood thinners prevented more, my pulmonary hypertension improved. I may be remembering this wrong but it’s so long ago I’m unable to be more accurate. Katie
I’m on hydroxycarbamide 1500 mg daily 9 years in 2014 I had an enlarged left ventricul and aortic valve regurgitation now the mitral is leaking
And in January I went to my Gp to see regarding left side chest pain they referred me to NHS cardiology routine I’ve rang the hospital 53 weeks waiting time to be seen I wrote to my Gp he wouldn’t change to urgent so I paid for an mri scan private then a C T angiogram which shows the LAD artery severe calcification and diagonal artery the cardiologist did a further stress test which was inconclusive due to fatigue and not reaching 160 heart beat required
I sent results to my GP who still refused to put me urgent to NHS and in a phone call told me my hearts ok !!
I’ve emailed my mp who contacted the cardiologist department at Macclesfield hospital there is 568 patients infront of me waiting to be seen!
I'm sorry to hear about your experience but thank you for replying. It appears the problem has to be deemed urgent, surely all heart problems are urgent, however, your story does not surprise me. I think I may have a battle on my hands. I hope you can get seen very soon.
Sorry to hear this jp. I have a friend who works as a respiratory therapist and since the pandemic has noticed a lot more heart and lung issues in people and younger people also. Very scary. Don't know whether it's covid or the vaccines. We have all noticed how enlarged hearts, myocardial issues and more after the vaccine have impacted our younger men- boys. My aunt just died at 68. Was very healthy, then about a year ago needed oxygen and could barely breathe, died on Easter. To get a cardiologist appointment for me was a 4 month wait. Should speak volumes. Like you not getting results since January isn't shocking, too many heart lung issues now. Wonder why
I hadn't considered COVID to be the cause of my symptoms but it is possible. I had COVID for 19 days but didn't require antiviral meds, however, the cough and hoarse throat stayed a long time and my son says that my voice has changed permanently, it is more gravelly.Guess we'll never know.
So sorry you’re going through this. Impo you shouldn’t do any further park runs until you’ve seen a Cardiologist. You can also contact your Hospital PALS (Patient Advice & Liaison Service). I had to use them and they were very helpful and expedited my appointment. Good luck and keep us posted.
Thank you, I am going to heed all the good advice I've had from everyone on the forum, just strolls for the time being. Re PALS , hopefully won't need it but I'll have to check if it's available in Wales.
Thank you all for your replies. I read the 4 links posted by Hunter, the advocacy help very interesting. Thank you. And I appear to tick every box for symptoms of pulmonary hypertension. So try to keep this short, I managed to get a call back from a GP , he had just received notification from my haemo that he wanted me referred to a cardiologist. He hopes to hear back by next week, so I shall be phoning again next Friday. Fingers crossed.I have decided not to do anything strenuous until things are clearer. Thanks to everybody who gave their view. I fear that like many of you I may get added to what I call "The Great British waiting list". This is not a criticism of anybody working in the NHS, everybody I encounter is lovely and I can't fault them, but the system does appear to be struggling at the moment .
It was just horrible receiving that news Thursday when I was expecting a chat about blood counts. I've calmed down now. It was so good to "talk" to you guys.
I have exactly what you have. I ended having a valve repair (2004) and being treated with Pradaxa (anti-clotting agent) especially designed for Atrial Fibulation (AF). My valve is about 90% efficient and my heart has not continued to enlarge over the years. It was recommended that I not excise too vigorously and concentrate on moderate weight training.
I do carry a bit of fluid now and then and causes my feet and hands to become painful. On those occasions I take a Frusemide.
My recommendation is get a very good cardiologist asap. Also I suggest you cancel anypark runs for now. You need to get the size of your heart asap.
Thank you Uz for sharing your story. It's reassuring that you are managing your life with AF. Hopefully a cardiologist appointment for me in the very near future, and no park runs (must admit I was only shuffling around the course due to my breathlessness) for the time being.
I have MPN ET, with 3 mutations. Diagnosed 2022. I'm on Aspirin (75mg), Hydroxycarbamide (Hydrox), Allopurinol and Famotidine. Haematologist increased my Hydrox, last June 23, from 500mg per day to 500mg Monday to Thursday, 1000mg Friday to Sunday.
End of July 23 I started having heart flutters and contacted Haemo. re medication causing the effect. They advised A&E to test if it is a heart problem. A&E took tests and referred me to Cardiology. Cardiology programmed me for Scan and 24/7 monitor. Finally had monitor 1st week December 23. Was told a Cardiologist would send results to GP, copy to me, and see me re results. Having not heard by March 24, found out this was only a machine check and Cardiologist would send results to GP.
I had an operation 13 March 24, Local Anaesthetic, open surgery, half way through my heart registered 175, BP 220. This happened twice during surgery and 4 times in recovery. Surgeon annoyed at Cardiology reaction to August issues and wrote a full report, with ECG and BP copies to Cardiology Consultant. GP also not happy with Cardiology. Cardiology apparently are now treating this as a New Referral.
Have had low Haemoglobin since August 23. Have found out, on the net, that Aspirin and Famotidine can both cause Heart issues. Also, following surgery in March 24, advised to take Paracetamol to ease recovery pain. Paracetamol can also cause Heart issues.
Bought a BP and Heart monitor March 22nd, and have registered heart fibrillations on every occasion. BP Normal. Heart Rate Normal.
I have appointment with my Haematologist April 18th and have also, thanks to my GP and the surgeon, have an appointment, April 23rd, with a Cardiologist.
Hi Katie. We bought the Omron M3 Comfort. After investigations we only looked at monitors recommended by The British & Irish Hypertension Society. However, on their site, there were still a number of different monitors available. The Omron M3 Comfort was not the cheapest, but had good reviews from on-line sites and from other people we knew. We bought the Comfort version, rather than the standard, as the cuff is very easy to attach and use. We purchased last month March 22nd from Argos as they had a deal at that time. So far, we have found it to be very accurate.
Thank you for the information. I appreciate your taking the time. I’m looking for a watch that accurately tells heart & arrhythmias. Does yours tell you only what’s occurring while you have it on? I really hope you get some help soon. Katie
Hi Katie. The Omeron registers BP, Heart Rate and whether the heart beat is uneven. You have to press start each time you want a reading. A Friend has the top of the range Apple watch that does shows constant heart rate and they press an icon to register BP etc. He had a heart issue about a year ago and uses the watch heart rate monitor whilst he is running. To use the BP monitor he has to stop. During our investigations, we read that wrist mounted BP monitors were in the main not as accurate as bicep cuff wrap BP monitors with added heart rate monitors. Obviously, if you are a runner, it depends if your priority is heart rate monitoring or BP monitoring. You might consider having to buy both. Is it just an indication you are looking for or accuracy?
thank you for the information. I do have a BP cuff at home. The watch is mostly to use while exercising. I have heart failure & don’t want my heart rate to get too high or my oxygen levels too low. I’m not a runner but want to avoid straining my heart & lungs. Keep us posted on your efforts to get cardiac care. Katie
morning regarding waiting for referrals especially for cardiac issues , have you tried emailing the cardiologist secretary. Or leaving a message .
I have frequently tried this route it can at least start a dialogue . At the moment it is very easy to get lost in the system . They already have test results if you can highlight this in email direct you may find you get a response . L
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