Newest problem, Pulmonary Hypertension

alicia · Jan 27, 2007

Hi guys..I've been reading up alot on the forums and thought I would give an update..My cardiologist has now diagnosed me with mild pulmonanry hypertension with a PA pressure of 38...He does not seem concerned, however I am. As I have said before I am a Murphys Law kind of patient (if you know what I mean)..He does not think that me taking Redux in 1997 was the cause. Im doing pretty good. I have good days and bad days just as everybody else. He said I will never be able to return to work and I am 46 years old. He said just enjoy life and live not dwell on dying. I have to admit I try but I've got so much going against me. When I got so sick 6 months after my first open heart surgery on 10-15-01 the drs told me that w/o a new heart I would probably live 5 years. As you can tell Im past 5 years. The cardiomyopathy and the other heart problems are so depressing. I want to be "normal" again. Im sorry for whining, I guess Im having a pity party for myself! I have so much to be thankful for.

Does anyone out there have any input? Especially about the pulmonary hypertension thing. My cardio said its just mild now, well so was my mitral valve and look at all thats happened since then. Wow.

Alicia (Lisa)

Harrybaby666 · Jan 27, 2007

Hi Alicia..

Hi Alicia..

I too have been diagnosed with Pulmonary Hypertension...you and I have alot of the same heart issues-I also have Cardiomyopathy/CHF/Pulmonary Hypertension and I do know that it's not easy to deal with or accept...I would like to be normal as well, and I am also sick and tired of being sick...Although I haven't had any heart surgeries as of yet, I just want you to know that I am as terrified as you are....

I do have one question for you? Have they tested you for Sleep Apnea? It is another major cause of Pulmonary Hypertension, and I have it, and since I have been on my CPAP machine, my PH has gone down from 43 to 15 as of my last echocardiogram...it's worth a shot to ask your doctor about it...If you need to, please feel free to IM me, and I can try and help you in anyway I can.

We all have our days when we are struggling with our own health issues, both physically and mentally, so please don't feel as though your alone or having a "pity party" and please know that you are very courageous one for having endured OHS where I haven't-I have had other surgeries, but I will tell you, the thought of having to have OHS myself one day ABSOLUTELY FRIGHTENS ME......I hope this helps you and comforts you....Harrybaby

Christina L · Jan 28, 2007

Alicia -

Alicia -

I'm so sorry to hear your new prognosis. Pulmonary hypertension is a very scary prospect. I know it is one of my fears. I, however, just had an echo and it was not detected on the echo. I will not worry about it (or try not to) for another year until the next echo.

Whenever I bring it up with doctors (recently my endocrinologist) - they always say IF you had PH, it would not be the primary kind (which is a disease). However, that doesn't necessarily make me feel better, but the doctors should know what they are talking about. Secondary PH is highly treatable.

I think your doctor is right in a very real sense telling you to concentrate on living. Tomorrow is not a given for anyone. Seven soldiers were killed in Iraq yesterday - young men and women are dying for us when they should be starting families and enjoying the freedoms of our country. Anyway, THAT is something that I try to remember and I am not lecturing you by any means - I need to hear these things over and over - I have been on this earth for 47 years and I feel truly blessed to have made it this far. I hope to be here another 20, but there is something after death that is going to be far more wonderful and the "struggle" will be over - I believe that.

I hope you will be able to find medication and peace of mind that will allow you to live a full life for the years you have remaining and you probably have many, many mortal years ahead of you.

Find a relaxing hobby and put your heart and soul into that - it is the best medicine. My thoughts and prayers are with you. We here on VR.com all have our stories and our pain and trouble - know that you are not alone and are cared about.

Christina L

Christina L · Jan 28, 2007

P.s.

P.s.

Harry is right - sleep apnea will cause pulmonary hypertension and right heart enlargement. I was found to have mild sleep apnea and have been on CPAP for about half a year (after being able to tolerate wearing the darned mask and accepting the fact that I needed to!) - I wonder if I hadn't found that I had sleep apnea, if my echo would have been different this year.

I also was found to have hypothyroidism which is also a culprit in causing sleep apnea and pulmonary hypertension - the bodily systems all work together so closely.

Get a sleep study - you might find you have sleep apnea and wearing CPAP will heal your heart majorly - not to mention you might feel so much better in your awake hours!

Christina L

alicia · Jan 28, 2007

You guys may be on to something. I've never been tested for sleep apnea. My Drs have never mentioned or questioned me about it. My husband does say I snore alot at times. Not every night though. Wonder if I should ask my Dr about that possibility.

Im trying to make myself go to the healthness center and workout. I've been going to the aqua aerobics and I do enjoy that. Tomorrow they are going to set me up on a regular exercize routine. If I follow it, Im sure that will help if nothing else occuping some time so I dont dwell on the what ifs...This is a great facility that is Hospital owned and operated. I feel safe there working out since they have so many trained staff and they also have a great cardiac rehab program. Wish me luck...

Thanks for the support. What can be done to help improve the pressures? Is there any other meds I should be on for PH? Im on Coreg,aspirin,Coumadin,Altace,Potassium,Prevacid,Reglan,Celexa,Torsemide,
and Valium as needed. Guess I need some this weekend,huh? I guess Im also going into football withdrawls (LOL) Go Bears!!

Harrybaby666 · Jan 28, 2007

Alicia....

Alicia....

If they do test you, and they do indeed diagnose you as having sleep apnea, once you get going on the cpap machine (I have the full mouth/nose mask as it's the only one I can tolerate-I cannot tolerate the nose buds), your pulmonary artery pressures should subside if sleep apnea is what's causing your PH. I hope this helps. Harrybaby