Pulmonery Heart Pressure-Scleroderma

[RockyMelb]

I have always felt tired with little exertion since childhood (I am now 56 yrs old), but no one could say why. Ten years ago, I was diagnosed with Scleroderma. In last 7 years, my lung function has dropped from 42% to 39% and I feel weak after any small excercise (getting worse with time). I did some internet reserach and thought I may have Pulmonery Heart Pressure problems. Now the Doctors are doing tests (like O2 levels etc) and would do the heart catheter test soon. My new Pulmonery Heart Doctor says I am doing better than he would have expected. I am worried what happens to people like us and to what level the lung function can drop to live peacefully?
T

[hava]

Good to see that you are trying  the exercise. How about doing one minute everyday, and then increase by 10 seconds every week.It will be of some help.

[RockyMelb]

Thank you Hava. I have been doing it for three years now, but get get extremely tired if I do it more than 2 times a week for more than 2 minutes each time. If I could do it even 7 days a week @ 3 minutes everyday, I may not be complaining. The time is gradually reducing and not building up.

But I am sure the O2 intake during the excercise will help.

[hava]

Try this exercise to get more oxygen into the lungs. Start with 5 minutes and build up your timing gradually
Carry on doing and come back to forum after a few days to say how you are feeling.  
Anulom Vilom - Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for upto 30  minutes twice a day(maximum 60 min/day).

[RockyMelb]

Thank you Maggfiemag. The two echo's (one now and one 4 yrs ago) do not show any elevated pressures. But these are 'resting' echos, as per PH doc. I had O2 level tests done two days ago, and I am now recommended to have O2 while doing any excercise. My resting O2 was fine and the respiratory Dr says O2 deficiency during mild excercise may be the cause of tiresomenes.
2) My cardiologist has suggested to do Thallium Excercise test to check if there is any heart issue that can be resolved by doing a left and right heart catheter instead of just right one.
3) What I want to know is if it is better to get the right heart catheter done even if Echo is ok, just to get rid of any doubts? Is it safe enough? The PH doc (a professor) has asked for heart cath to be done asap.

[maggiemag]

Have you had an echo first, before they rush into a cath?  Certainly you are more likely to get PH along with the scleroderma, but what exactly do you mean by lung function?  What were your specific pulmonary function test results?    42 to 39% may not even be considered a significant drop.......just a variation as the number would not remain constant all the time.  If you would indeed have pulmonary hypertension there are a number of very effective treatments available today.  Some are just pills and some are intravenous only, but there IS treatment.  Combination therapy is also very effective.  Find out first if you have elevated pressures on echo, and if you do, then seek out a PH specialist, as most pulmonologists and cardiologists really do not know how to treat PH, although they think they do.  Just don't panic yet!