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Author Topic: Can Pulmonary Hypertension be linked to ßTM?  (Read 4121 times)
deb
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« on: December 21, 2009, 05:58:12 AM »

Yeaah... another newbie here. I already posted on the ßTM pregnancy thread about this, but thought this topic might need its own thread:

Does anyone have any experience/opinions about Pulmonary Hypertension correlated with ßTM?
Not to be confused with regular Hypertension, btw.

I've read there is a high incidence of asthma with thals, asthma being one precursor to PH. The Pulmonary Artery (to the right heart from the lung) comes under high pressure from overwork to deliver (under)oxygenated cells to the heart, which cannot effectively pump blood throughout the body. PT untreated can lead to heart failure. I'm not concerned if causal or correlated, just need to focus my doctors on this possibility, and will be undergoing invasive and expensive tests to determine it, as I am suffering from a progression of symptoms.

Thank you. Any insights appreciated!
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Andy Battaglia
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« Reply #1 on: December 21, 2009, 06:48:04 AM »

Hi Deb,

I have talked about this possibility for a few years now, but you are the first thal minor I have heard from who is being tested for PHT. I would very much like to hear if you do show any signs of even mild PHT, as I suspect this is a problem in many thal minors, especially as they age. It is well known that PHT occurs in thal major and at a high percentage in non-transfusing thal intermedias, so it does seem likely that some occurrence would be in thal minors with lower hemoglobin levels. If you do a search on our site for PHT, you will find many previous mentions of a possible connection between thal minor and PHT. Even mild PHT causes problems, and the symptoms many minors report are the same as with PHT, so there is anecdotal evidence that would lead one to think there may be a connection. I recently wrote about this in a post at http://www.thalassemiapatientsandfriends.com/index.php?topic=3126.msg31284#msg31284   

L-carnitine has been regularly recommended to thals to help prevent PHT and Sildenafil citrate (Viagra) is used when treatment is necessary. I would like to note that the son of our moderator Sharmin, had a significant improvement in ejection fraction after using L-carntine for some months. Diet and supplements do help many minors, just as they help majors. Somehow, doctors need to be convinced that thal minor does often have symptoms and the patients are not crazy.

Please let us know the result of your PHT test.
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Andy

All we are saying is give thals a chance.
deb
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« Reply #2 on: December 21, 2009, 07:53:21 AM »

Andy.

Thank you. Thank you. Read your linked post—VERY helpful! Sorry you had to repeat yourself. I will take the time to peruse the site for more like posts. It is stunning to me to hear that ßTM helps the heart? Not the case here, at least not indirectly. I think the key link between the two is the asthma/COPD, plus Cardiomyopathy that developed during pregnancy when ßTM symptoms became more dramatic. I can only imagine that ßTM amy not be directly responsible for serious illness, but sets off a chain reaction of interconnecting, compromising events in a marginal health profile, that over time, can only catch up with you.

Btw, since my Thal-Major uncle (RIP) self-treated in addition to doc's, I also strongly believe in diet/lifestyle factors. Your tips for vitamins are very helpful. Re the L-Carnitine: I confess I shouldn't do it for a lot of reasons, but would this explain why I CRAVE raw meat on rare occasions (pun intended)? Also, are you saying women with ßTM take Viagra?

And I most certainly will let you know about my PHT results.

Lastly, thank you—we minors are not crazy—at least no more than anyone else trying to conduct a healthy responsible life in the modern world!
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