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To all who have Pulmonary Hypertension!


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#1 summer

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Posted 11 March 2008 - 05:39 PM

Hello everyone,
I went to see my Cardiologist yesterday for a routine check up and to talk about me being on Atenolol for Tachycardia. I also gave him the results of my PFT that I had done a couple of weeks ago.

As you all may remember I have been SOB intermittently now from the last 12 months or so, and also have had lung pain. I was on Prednisolone for a few months and those symptoms disappeared, I am currently am off this medication, and the SOB has now returned. I have had many Echos/Stress Echos and so forth to rule out PH, but have not had a Right Heart Catheter done.

My PFT tests a year ago was above normal with the DLCO, it is now declining at a steadily rate.

Since I showed my Cardiologist my last Pft yesterday which I had done a couple of weeks ago he is now not 100% sure about me having PH. He is a bit reluctant for me to have a Right Heart Catheter as it is an invasive prodedure to have.
He seems to think that because I am not breathless all of the time that it probably is not PH. I can be SOB for 10 straight days/nights then it can go away for a few days then return.

My question is this:

1. For all of you diagnosed with PH, in the beginning of your PH diagnosis was you SOB 24/7?. Do you think my Cardiologist is correct saying this?

2. I am taking 50mg Atenolol for Tachycardia, it is affecting my Circulation, my Cardiologist says that there is no other med that I can take that is not a beta blocker, and it is important for me to stay on this.

I am due to see a Respiratory physician in one weeks time for the first time, and my rheumatologist in a couple of weeks. My Cardiologist is now waiting to see what the Respiratory doctor has to say.

I'm sorry this is so long and I am hoping that someone can possibly give me their opinion.

Many thanks to all
Celia :)

#2 janey

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Posted 12 March 2008 - 05:05 PM

Celia,
Sorry that you're still having problems with SOB. I was diagnosed with mild PH about 1.5 years ago and atrial fibrillation about 2.5 years ago. In reference to the PH, I only get SOB when I exert myself (even a mild exertion). My SOB is not 24/7. For the fibrillations I was put on an antiarrhythmic medication called propafenone. It's really nasty stuff and I hated the side effects. I was on it for two years, then it was determined that it was actually causing my fibrillations than stopping them (a possible danger of anti-arrhythmic drugs). Here is a link to tachycardia medications from WebMD. From my experience and research, treating tachycardia at times can be a guessing game. Right now, I think my fibrillations are causing more of my SOB than the PH.

I hope you get some answers from your respiratory doctor. I see a new cardiologist next week and am hoping to get some answers myself.

Big Hugs,
Janey Willis
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#3 JJ-Knitter

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Posted 13 March 2008 - 08:03 AM

Hi Celia,

I was diagnosed with PH about a year and a half ago. Like Janey, my SOB wasn't/isn't 24/7, it's just with exertion. I definitely can't talk and walk at the same time, but I can walk and chew gum! :lol:

My echo's showed moderate PH, but I was fortunate in having the doctors insist on a RH catheterization before starting treatment an it showed mild PH. :rolleyes: It's not a real fun procedure, but not all that bad and gives actual pressures, with no technician bias of interpretation, and a definitive answer on whether or not you have PH and to what degree if you do. Me? I'd rather have the definite answer.

I have had a work-up with a cardiologist, but it's the pulmonologist and a PH specialist who oversee the PH treatment and the rheumatologist who keeps an eye on everything. Fortunately they play well together and with me!

Janey's website re: tachycardia meds is definitely a good one to check out. There IS more than one way to skin that cat. Maybe a referral for a 2nd cardio opinion would be a good idea? A passing thought, a friend of mine had surgical ablation for tachycardia, which cured it, but then he doesn't have sclero.

Good luck and warm hugs,

JJ

#4 peanut

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Posted 13 March 2008 - 09:51 AM

Hello.
My shortness of breath was intermittent but enough so that my PH doctor wanted to do a right heart cath (RHC) as a preventative measure and if anything to establish a baseline. It is an invasive procedure but honestly it was no big thing. Also, if you did get an RHC it might even rule out PH... which is a good thing.

Getting a second opinion might be a good idea but it seems like a lot more work than just asking your current doctor if you can go ahead and do a RHC. I was never sure about getting second opinions because if you have two doctors and they think 2 different things then who do you believe? And I'd get confused... I'm so easily confused.

take care,
peanut

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

#5 summer

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Posted 13 March 2008 - 05:03 PM

Thank you all so much for your replies, I shall give you all an update when I see my Respiratory Physician next week.

Take care
Celia :rolleyes:

#6 CraigR

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Posted 14 March 2008 - 09:32 AM

Sounds like you need a good pulmonologist - and one who is connected with a good center for pulmonary hypertension. A RH cath is the only way they can have any idea what your pulmonary pressure is. Sounds like your cardiologist is avoiding it because he isn't all that familiar.

I've had three RH caths - no big deal. The worst part is the slight sting of the anesthetic. they then slide a little tube in the vein (in my case, near the groin) and up to your heart to get the pressure reading.

The invasiveness seems minor compared with the potential seriousness of pulmonary hypertension.

Good Luck,

Craig