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New Member Denelle - Questions About PAH


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#1 Denelle

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Posted 28 November 2007 - 05:38 PM

Hi y'all,

I think my PAH may be worsening. I can't walk very far at all without SOB. My heart rate is also very high. I was wondering what you guys with PAH experienced when your pressures rose. I have had previous pressures of 25 and 29 by echo - what are your pressures like? Also, do you know what your DLCO is? I have never felt as bad as I do, right know ;) . I find it very concerning. I end up panting when I just roll over in bed. I also dream about not breathing well. I think I am overreacting just a little, but my appt with the collagen-vascular disease cardiologist is Dec 11. I have the 6 min walk and an echo on the 10. Please tell me your stories so I can hear from expert patients!
Thanks in advance,
Denelle

#2 peanut

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Posted 28 November 2007 - 08:07 PM

Hey Denelle,
I monitored my BP and Heart rate at home for two months. My avg heart rate is: 107 which is high for regular people but for someone like me who has sclero, mild ph, lung disease and all the meds I'm taking... I guess it's about right.

If you're having shortness of breath at night you might consider asking about a night oximetry test or sleep apnea test.

My dlco is 38%. low way low. Have you had a right heart cath? I did. My pressures were within normal range but when they had me do a little exercise it shot up to 42/27, mean 33.

You might also ask about pulmonary rehab. Sometimes our muscle fatigue contributes to our fatigue and shortness of breath. Learning to breathe properly is good.

best of luck and don't freak out - that will just aggravate things further.
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 janey

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Posted 29 November 2007 - 04:39 AM

Denelle,
Ditto to all of Peanut's suggestions and comments. I've had both the nighttime oximetry and the sleep apnea test and both have yielding tons of information.

Prior to diagnosis I was extremely SOB and it was worse at night. Like you - just turning over was a chore. It turned out that was due to muscle weakness in the chest and diaphragm caused by polymyositis (my overlapping CTD). Once on meds, that weakness went away and so did the SOB,

However, a couple of years later it started back with any type of exertion. My ECHO showed a PA pressure of 45 so I was put on Tracleer (Bosentan). After a year the PA pressure dropped to 30. My DLCO has been as low as 49%, but after six months on cellcept is now at 56%. My resting heartrate is 70 (which is actually the lowest setting on my pacemaker so it can't drop lower than that anyway). I do have atrial fibrillation so I do have racing heartbeat problem, but when the fib stops, my heartrate goes back to normal.

I do have mild fibrosis in the lower lobes of the lungs so that also attributes to my SOB when walking as well as the drop in O2 saturation. I'm glad you have an appointment and some tests scheduled here soon. Please let us know how things go. In the meantime, please do not push it. Just listen to your body and if you get tired or short of breath - stop what you're doing.

BTW - Welcome to the forums!!!!! I'm glad you've joined us but very sorry for the reason why. Please take care of yourself and visit us often.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#4 constance

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Posted 29 November 2007 - 06:30 AM

Hi Janey, I am new to this site and new to the whole idea of more autoimmune disorders for me. I was diagnosed with Hasimotos last year and put on a thyroid supplement and that cleared up many symptoms I was having. Now I find I have continuing shortness of breath (with less and less exertion) and I am pushing through the medical system to find out why. I had an echo Monday and yesterday saw a pulmonologist. My echo was normal and he gave me a copy of the readings. I don't really understand them all, but he said it was all normal. He said I do not have pulmonary hypertension or fibrosis in my lungs. He said I may have mind asthma and sent me home on mild steroid inhailors. My treadmill showed that my 110/60 BP went to 206/60 after 9 minutes of exertion. My rythmn was normal. My shortness of breath has been slowly progressing to happen with less and less effort. I feel like I'm looking like a hypocondriac to my general doctor/ maybe even my husband. Can you tell me how you got such a clear diagnosis of chest/diaphram muscle weakness? I am in such a scarey place of limbo right now. I know my body. I WANT there to be nothing going on.. Besides Hashimotos I have tight hands with a couple of trigger fingers (told I could just get a couple of short of cortisone and be fixed right up...) I am weak and have had joint pain in my knees and hips. I am scheduled to see the endocrinologist new at the end of December. This is taking so long and I want to believe I just have mild asthma..... Sorry to put so much out there, but I feel like I so relate to what Denelle is going through and what you have experienced. Janey, who diagnosed your polymyositis? What specialist?... I am just lost. Sorry , Connie

#5 janey

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Posted 29 November 2007 - 06:49 AM

Connie,
First let me say Welcome! I'm sorry you are going through all this. It's so hard to accept and to deal with at first. Fortunately (I guess that's the right word), you eventually get use to it and going to the doctor becomes like going to grocery store. Just something you need to do to keep moving forward in life. It does sound like your doctor is trying to find the problem so that's always good.

In answer to your questions, my rheumatologist diagnosed me with scleroderma at first, then ran a bloodtest to check my muscle enzymes because of my increasing weakness and breathing problems. I also had knee pain and swelling. The test is CPK or CK - a simple bloodtest. It came back positive so polymyositis was added to my diagnosis. Polymyositis is another connective tissue disease like scleroderma.

It's great to read that your lungs are good! Did your pulmonologist schedule a lung function test? That's a non-invasive test that provides lots of information. One of the stats from my initial test indicated an external (to the lung) problem, which again - pointed to muscle weakness around the lungs. Might want to ask about a PFT as well.

Hang in there Darlin'! This is a great place to "put it out there" so free feel to post anytime. Stay on top of your doctors until they find out what's going on. I, personally do not accept statements like "it's probably mild asthma" from doctors. If that's what they think it is, then run some tests to prove it or eliminate it. You have to push these doctors sometimes.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)