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Question About Cardiac Involvemant

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6 replies to this topic

#1 Annie N

Annie N

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Posted 28 September 2007 - 12:15 PM

I just had a cardiac cath and they found that it wasn't that my lung fibrosis had changed or that I had developed PAH, but that my heart valves were stiffening so that the lungs aren't getting enough oxygen.
Does anyone else have this diagnosis?
Anyone else take any meds for this?
I'd appreciate any feedback you all can give me.
Thanks so much.
Annie N.

#2 summer


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Posted 28 September 2007 - 07:34 PM

Hi Annie,
I'm sorry that I don't have any answers to your questions, I'm sure that a few people will chirp in soon.

I will probably have to have a right heart catheter soon, to rule out PH, can you please tell me if you were in any pain after the procedure, and also, how big was the incision that was made?

Many thanks
Celia :unsure:

#3 barefut


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Posted 28 September 2007 - 08:08 PM


Bless your heart. I do not have heart involvement. I am so sorry you do. I don't know anything that would help you.

Did your doctor prescribe anything for you for this condition? Do you have to be on o2? Would that help?

Take care and stay in touch!

#4 jefa


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Posted 28 September 2007 - 09:56 PM

Hi, Annie. I will give you a link to our page on Cardiac Involvement but I would caution against getting too stressed out about trying to diagnose yourself in the various discussions. I ask the same questions that barefut asked. Has your doctor discussed a treatment plan at all with you? I presume that you will be referred to a cardiologist. Please keep us posted on your progress.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#5 Patty


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Posted 29 September 2007 - 01:03 AM

Hi Annie,

Last year I had a right and left heart cath. I was lucky that my Dr did both sides as I did not have PAH I have Diastolic dysfunction, meaning the left side of my heart is getting stiff. Right now I take a heart pill but its more of a water pill. I go to my Dr's monthy for a BP check as I run a tad bit high. I myself feel that yes its ok to be concerned but as long as you and your Dr stay on top of this, like the rest of the things that we get with scleroderma, it should be ok. I had to see my cardio after the test for results, and now I need to make an appointment for a yearly checkup. other then that I just see my general practitioner. I know it is very scary when they tell us our heart is involved but again as long as you and your Dr stay on top of it, I think you will be fine.

Please keep us posted as you learn more about what your dr wants to do.

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#6 bookworm


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Posted 29 September 2007 - 06:22 AM

Hi, Mary,
I haven't had a heart cath, but my husband and my dad have both had them. They had some sort of anesthetic and were in no pain during the procedure and apparently, they were not in pain afterwards either. Neither was given any pain medicine and neither complained of pain. As for the incision, I don't think it was very big, but I don't really remember.

Mary in Texas

#7 Annie N

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Posted 29 September 2007 - 01:56 PM

Hi Everyone
Thank you so much for your replies.
The doctor told me something about Diastolic dysfunction, but I haven't met with him yet.
Thank you all very much for your help and support - it helped made me feel a lot better!!
Annie N.