Hi guys, a change of subject from covid19. Has anyone else had issues with stiff (that’s how my gp described them) heart valves? I still have too many red blood cells, which are small also but my iron levels are now staying low. I had a GI consult and they don’t think that I’m losing blood that way.
I have an appointment on Friday to see a cardiologist and get an echocardiogram which will hopefully identify exactly what the valves are doing or not doing and check if any intervention is necessary - I’m keeping everything crossed that an op of any kind is not necessary. I just wondered if anyone else has similar problems.
Thank you, kind regards Aime xx😻
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I can’t answer your question, just offering my support really. Poor you, you could do without this right now. Hope someone else can offer you some answers.
Wishing you well at your appointment on Friday, will be thinking of you.
Sending very best wishes Aime,cannot really help,I had a stent fitted at the beginning of PV 11years ago,have had Doppler scans recently to make sure arterys were OK ,as my cardio Dr was worried,not the same as valves I am sure,don't worry tho,I did and it makes you worse,we have enough to concern us just now,all will be well ,you are being looked after properly.
Thank you Sally. I've made up my mind to take things as they come as there is one thing happening after another with my health just now but it could be a lot worse so I'm no longer feeling sorry for myself. My sister in law, who has cancer which has spread, is in a far worse position then I am.
My hubby is concerned but doesn't like to show it and I'm travelling alone to the hospital on Friday because I dont want him exposed to covid more than he has to as he has got AF and asthma.
You take care, keep safe. I'm sure in a fee months time, we will be celebrating the end of covid 19 for a while and next time round, some folk should have immunity. Kindest regards Aime xx😻😻
You are so brave Aime,I have to have hubby take me to med R Vs ,I am scared on my own now to drive. No bus any where near us get on!!But I would be worried about that too.This is me who had an H G V license and drove all over U K ,inc Scotland loaded with our competition horses!
So ashamed now to be a wimp.I will think of you on Friday and hope all will go well for you ,strong minded lady.Very ,very best xxxxx Sally
Hi Sally, I quite often find its better to go to new appointments on my own because although daunting, I can ask anything without worrying it will cause even more concern for my family. I have a tendency of telling my family only what they should know meantime and tell them all once I have a firm diagnosis and treatment plan.
My mum, bless her, she passed in 2012, had everyone in the family worried sick with crying wolf over different health issues by exaggerating and fabricating. I won’t do that but tend to veer the other way and get caught out if my hubby does insist on coming with me!
So sorry to hear you are having to cope with lots of health issues at the moment,Aime. Take care and hope all goes well at your hospital appointment on Friday. Kind regards,Fran xx
I’m so sorry to hear this and that you are suffering with lots of different things health wise. I can’t help I’m afraid but I hope the investigations help to find out what’s going on.
As Mary says take extra care at this time. Let us know how you get on.
Thank you Judy and Poppy. I’m hoping it’s going to be a “wait and monitor situation or perhaps medication only treatment. But whatever it is, I’ll just have to get on with it. As I said, there are folk a lot worse off.
Keep well both of you, kindest regards and E hugs Aimexx😻😻
No experience with the heart valves, at least I hope I don’t have any experience, but just wanted to wish you all the best for your appointment. Keep us up to date won’t you.
I have ET. During a pre op recently (op now postponed) they discovered I have a heart murmur. Hade ECG it confirmed it's on left hand side of heart. Now to get an echo on saturday.
I dont feel I have any heart issues. So a bit in the dark hope to find out on Sat.
Not sure if it was having thick blood for years (didn't know I had et) or even my medication or something else. Hope u find out soon.
By stiff heart valves are you referring to Valvar Stenosis? I did a quick look and there is some evidence of a link between PV and Aortic Stenosis. This link is something new to me, but of interest. I have a JAK2_ PV and hx of a heart issue, but mine was paroxysmal atrial tachycardia. My daughter, who is also JAK2 positive, but with ET, has mitral valve prolapse. My son, not MPN+ but NF1 positive, was born with an Aortic Stenosis. This will be something I will want to learn more about too.
Here is one piece of the literature I found. ashpublications.org/blood/a... . I found some interesting information in the article.
There is no way to know whether this applies to you, so suggest not worrying excessively over it until you know what is really going on. You might find it helpful to learn a bit more on this topic so you can be sure to ask the cardiologist the right questions. Chances are the cardiologist may know little about MPNs, so getting this doc to collaborate with your hematologist will be really important. I sometimes find it helpful to print out a study like this and take it with me to the appointment.
I am sorry to hear you have an additional worry, but thankful you posted your concern. What you learn may benefit us all. Please be sure to post what you find out so we can all learn and support you in any way we can.
Hi Hunter, not sure yet what exactly is wrong with the valve(s) as my gp was going on what he could hear through his stethoscope. I will make sure tomorrow that I talk about any possible links between my IE and what they are hearing. Truthfully, I will be glad when this time tomorrow is past and I have more information.
I will post after my appointment and give you all an update.
Thank you very much for your very important advice and I will follow this through tomorrow. Kindest regards Aime xx😻😻
Hello Aime. I’m so sorry to hear you have yet ANOTHER problem to deal with. Goodness you are being tested! I hope this can be resolved swiftly for you.
Hi guys, good news - murmur is coming from blood flowing quite quickly through heart sometimes, valves etc working well. As always thank u so much for your support. Kindest regards Aime xx
Thank you Cindy. The good news is that the murmur is caused by the blood flow and not dodgy valves which is a relief as nothing needs to be done, thank goodness. Keep safe and well, E hugs Aime xx😻😻
Hi Anne-Marie, thank you, I must admit I’m very relieved. It all started with my haematology visit in a January who arranged a GI consult as I’m now getting more anaemic. Tests revealed no reasons which I was grateful for but the consultant could hear a heart murmur. Went to GP and I knew by his face he was hearing something.
In the end I paid to go private to get the ECG and echo done quickly as I knew any appointment at the local hospital would be ages away. It meant a 3 hour round trip but it’s done and dusted.
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