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New Member Has Questions
Thanks, @carol, I am posting your questions here as a topic so that others can respond, too.
Carol asks, this is great because I have so many questions. when you have no one to ask how things are to someone who has the same problem, it makes you quite in the dark. I have had a procedure where they burned out heart signals to help with my A fib. at that time which was just a few years ago now I found out I also have artrial isomerism which is the arteries are going the wrong way in my heart. I have a pacemaker which keeps my heart from stopping and trying to keep it in rhythm. I take digoxin and tiazac also fluid pills and blood thinners. my first question that I have wanted to know for sometime. do people with this problem have chest pain when they are in the cold or exercise or pains in their ribs that feels like your lungs are paining? these questions I have never gotten an answer to by any doctors I have seen, and believe me I have seen many. it will be nice to ask questions that might get answers. I am excited to hear back with any information that anyone can give me. thank you for this chance to be a part of this group of wonderful people
It sounds like you had an ablation to your heart. It sounds like you have been dealing with a ton through the years. Yes, for me, the cold air burns my lungs. I live in Texas. so do not have to worry about that too much. If you are getting chest pain or tightness/heaviness while exercising, it is usually a key to stop and rest. What has your PH team said about that?
We are happy to have you and hope that we offer you the support you have been looking for.
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11 Replies
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I did have ablation of my heart I had forgotten what it was called. I don’t have a team of doctors. I go see a cardiologist every 6 months. Things are different in Canada we don’t get the same treatment. We don’t pay for our treatments but we don’t have the same doctors you guys have unfortunately. The doctor I see is good and he has me pretty stable right now but all these new things that are happening I would like to know how far to push myself. Hope someone will talk to me. I would like to have someone who knows what I am talking about for a change. talk sometime thank you
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Thanks, Carol, Yes, so many differences between Canada and here. I have a few PHriends in Canada.
But, I am happy to know that the doctor you see is good and you are stable.
Don’t push yourself if you notice an increase in shortness of breath, heart rate, lightheadedness, or dizziness. Also, let your doctor know of any new or worsening symptoms.
It is often a balance o find with how much one can do. Forme and I are sure most others, each day is different, too. I hope that I did not confuse you too much here.
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Not at all thank you so much for your letter every little bit of information helps. I will do what I can and not push to hard. I forgot to say I also take oxygen at nights. I think maybe it would help me to use it when I exercise but I will have to ask about that first. I will see my cardiologist in February so then I will know. thank you so much Carol
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Hi Carol, I just commented where you shared about your journey, asking about oxygen. If you use it at night, ask if you need it when exercising and moving around. That should help some. You mention that you see them next month. Can you call them before and ask about the oxygen?
I am happy to help; that is why we are here. Thanks for your kind words.
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@carol when my son had PH extreme cold or heat would give him chest pains. He also complained a lot about his ribs hurting and his doctor explained why but I can’t remember exactly what he said. I think he said Cullen’s heart failure and PH was causing his organs to push up on his ribs. I also think that he was so use to not breathing well that sometimes he wasn’t aware when his oxygen was low and this probably caused a lot of rib pain and chest pain too.
I’m glad you found the forums and hope you will keep posting. We might not always have the answers but we will always give you support.
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Thank you very much for the answer. I will be seeing my doctor in February so I will find out what is going on with all these things. That sound very logical about the lungs being pushed against my ribs. It feels like they get swollen and I have no room in my chest and ribs when it feels like that. I’m not sure about exercise either but I guess I will find out about that too. Exercise I think is important just to keep everything running good. I have A fib too which is really hard to do things when my heart beats so crazy. It is nice to have people to talk to so thank you again Colleen I appreciate your answer. Carol
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<span class="Y2IQFc" lang="en">Hi, My name is Maria. Today I joined the big PH family. I am writing to you from Romania. My son was diagnosed 4 months ago with veno-occlusive disease and this caused me to panic. I just want to know if there is anyone among you who suffers from this disease and what your doctors say. Thank you.</span>
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Welcome @mariaagneta66. I read your profile and see that your husband and your child has a form of PH. Is that correct?
I interviewed a mom recently whose son had PVOD. I will reach out to her and ask if she will join the forums and maybe share some information with you. This is the article.
https://pulmonaryhypertensionnews.com/2021/04/26/eli-crawford-long-journey-double-lung-transplant/I’m afraid I don’t know a lot about PVOD but I found another article that you might be interested in reading.
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Hi @katesnonnie, another one where a woman shares her son’s story of PVOD for our 30 Days of PH. I hope you will find some of these stories helpful.
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Dear Colleen,
<span class="Y2IQFc" lang="en">First of all, I want to thank you for answering me so quickly. Yes, indeed my husband and son were diagnosed with PAH, with the difference that my son suffers from veno-occlusive disease. Thank you very much for the articles sent, they helped me understand certain things. I hope that my son will also have the chance to benefit from a transplant, here in Europe and to have the chance to a new life. I have faith that God is with us and will help us.</span>
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@mariaagneta66 we might not always have advice to provide but one thing that is never lacking here in the forums is support and understanding. I will reach out to the mom in the article for you at a later time. Her son is ok but had a rough day yesterday. I’ll hold off until a better day.
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