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Pulmonary Hypertension


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#1 anaelenawallar

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Posted 20 December 2012 - 05:52 AM

I had my doctor's appointment yesterday and he seems a little concerned about me having Pulmonary Hypertension. He wants me to see a team of Pulmonologists in January.

I hope they don't find PAH but if they do, I want to know if there is anyone in this forum living with that condition. What should I expect in the future? The internet is pretty scary.

Thank you in advance for your help.

Ana

#2 Joelf

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Posted 20 December 2012 - 01:33 PM

Hi Ana,

Welcome to these forums!

I'm assuming that you have Scleroderma and I'm sorry to hear that it's possible that you may have Pulmonary Hypertension. I hope that your doctor's worry is unfounded. Although I have lung (pulmonary) involvement, thankfully I don't have PAH. However, we do have members who do suffer with this complication due to Scleroderma and it's possible that they will be along to give you more first hand advice. We also have a collection of PAH patient and caregiver stories to provide some more support for you.

Please do keep posting and let us know the results of your pulmonologists' appointments in January.

:emoticons-group-hug:

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#3 miocean

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Posted 20 December 2012 - 11:12 PM

Dear Ana,

The internet can be a scary place, can't it? Welcome to the forum and please share with us what you find out. First of all PAH can be primary, meaning that it is your only disease, or secondary, meaning it comes along with another condition. If you already have been diagnosed with scleroderma, it would be secondary.

I have diffuse scleroderma with Interstial Lung Disease (ILD) along with damage to all my organs, and had a kidney transplant a couple of years ago. Interestingly, I was diagnosed with PAH right before my transplant and was supposed to start medication but due to the transplant, could not take anything, and then it sort of went away. I will be tested again in January and these are the standard tests:

The initial testing will probably be a pulmonary function test (PFT) where your lung capacity and diffusion rate (DCLO) are tested. These will tell your lung capacity and how much oxygen is flowing in and out of your lungs. It is noninvasive and you follow the directions of the technician for breathing in and out of a machine that is connected to a computer. This is usually accompanied by a 6 minute walk test to see if you desaturate during exercise and an ECHO of your heart, possibly a CT scan of your lungs, all noninvasive tests. If there is a question with any of these a right heart catherization is the standard for diagnosing PAH. This is a procedure done under a light anesthesia and local, usually the entry point is in your groin, and the pressures are tested in the arteries going to your heart and lungs. It can also find blockages.

I would highly recommend if you have scleroderma you see a scleroderma specialist and have the tests done at the scleroderma center or under his/her direction. I had a problem with the specialists saying the didn't get the correct numbers form the catherization done by a local cardiologist, in January if my tests show I need a heart cath I will have it done at the center. Always try to go to the best medical team you can.

Keep copies of all of your tests, that is very important. Please ask any questions you want, we are all here to help you.

miocean
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#4 debonair susie

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Posted 21 December 2012 - 09:48 AM

Hi Ana,

I am really pleased you have joined our Community; we have folks from all over the world and there is a wealth of experience with each and every one of them.

You are wise to appoach this information with caution and not expect it to be so, until you know "what is" for sure. Jo provided you witn invaluable information to peruse in the meantime. Yes, as Jo also mentioned, we DO have some here who have PH and I'm hopeful they will share with you, their experiences.

Please keep us updated, as to what the findings are in your case.
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#5 Amanda Thorpe

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Posted 21 December 2012 - 04:51 PM

Hello Ana

Have a look at our pulmonary hypertension video, there's a big difference between the primary and secondary disease and I am assuming you will have it secondary to scleroderma.

Pulmonary hypertension (PH) is a serious illness with no cure but there are treatments for it and mild to moderate cases can remain stable for a long time.

Early diagnosis and treatment are really important. You say "he seems a little concerned about me having Pulmonary Hypertension" so have you actually been diagnosed with PH yet or is it something your doctor suspects and if so based on what? Doppler ECHO can suggest PH but it can only be diagnosed with right heart catheterisation and then catheterisation results can even show a disease more mild than initially suggested by ECHO.

Take care and keep posting.
Amanda Thorpe
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#6 anaelenawallar

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Posted 22 December 2012 - 12:38 PM

Hi there,

Thanks for writing. I was having a hard time a couple of days ago, specially after I went online just to read a little more and try to understand PAH.

I was diagnosed with scleroderma 9 years ago. I suffer from Raynauds and a little interstitial lung disease (ILD). I have never really had any problems with this condition other than lots of pain in my muscles and joints. I do not take any medicine for pain since I think it is better for me to learn to live with the pain. So far it has worked. Because of my husband's job, my family moves every 2 years, mostly to a different country which makes it hard to keep up with testing and things like that.
When I was diagnosed, 9 years ago, my doctor recommended a doctor in Boston. I am very pleased with him. He now moved to Philladelphia. It's great that I am now back in the US so I don't have to travel across the world to see him. He is a couple of hours away.
A couple of months ago I had my regular pulmonary function test (PFT). That's the one that came out "iffy". I took the test to Philly, there the doctor did another test (climbing stair) and he didn't like the readings. I get very tired and short of breath. After that he mentioned his concern with PAH. Now I have an appointment to see the Pulmonologyst on January 10. He wants me to get an echo.
I don't know what to think of all this. My echos have always been good but I know my body and I know something is going on.
I just wish I didn't have to wait until January for this. The holidays are going to be hard worrying about something I don't even know.
I will keep you posted.

Thanks a lot for listening.

Ana

#7 Shelley Ensz

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Posted 22 December 2012 - 01:41 PM

Hi Ana,

I know how rough it can be during the holidays when worried about health issues. Worrying is usually when we use our imaginations to conjure up a worse outcome. We can also use our imaginations to conjure up a better outcome, but it does take a lot of determination because worrying can come so naturally to us that we often believe it is inescapable.

To try to put the worry to good use during the holidays, see if you can imagine meeting with the doctors for your final results, and they are telling you that you do not have pulmonary hypertension, you are just out of shape and need to begin a graduated exercise program. Think how mad you'll be for all the useless worry you put into this project! Think how upsetting it will be to have to begin a new exercise program, and what do they mean you are de-conditioned, when you have been exercising most of your life?!

This will get your brain going and still tax the worry-generating portion of your brain but it will still probably generate less stress. And since you have an equal chance of each outcome (PAH or just de-conditioned), it is only fair to worry about both outcomes, rather than just one, isn't it? What will you tell the doctor when he basically accuses you of being a couch potato? Does he have any idea how hard it is to find a good exercise bra these days, or how rough it is trying to exercise when all your joints are on fire?

I'm assuming of course that like most of us, you've already dedicated as much effort as you can into learning about PAH and trying to be level-headed about it, so that you are psychologically prepared in case you have to deal with the worst. Therefore, you can mark that project completed. There will be plenty of time to learn more about that, later on.

Meanwhile, you have the holidays to enjoy. So if you want, you can let us do the worrying for you. We will all take it upon our shoulders for you and I promise we will even work overtime doing the worrying for you, so that you can start worrying about what to if you do NOT have pulmonary hypertension, and instead need to buy a fresh pair of walking shoes.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 anaelenawallar

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Posted 23 December 2012 - 09:40 AM

Dear Shelley,

You have made cry and laugh (mostly laugh) with your message. As days go by, I am feeling better psychologically. It is truly silly to worry about something I don't know. I think it has to do with my "control issues" :) I fix everything.

Thanks again for your response. I will keep you posted. I am going to enjoy my holiday with my family. My son just came from Scotland where he goes to the University and I want him to enjoy his time with mama and his sister.

I hope you have a great season.

Ana

#9 Shelley Ensz

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Posted 23 December 2012 - 11:21 PM

Dear Ana,

I am glad it was "mostly laugh". Since you are busy laughing and enjoying the holidays, we will all get busy worrying our heads off for you, so that you can feel comfortable taking a worry break but not have to lose your place in the Worry Dance Line.

:emoticons-line-dance:

Anytime you want, we will also hold your place in the grocery store line, too! :emoticons-yes:

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.