Pulmonary Hypertension

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Subcutaneous Remodulin site pain

I have been on subq Remodulin for almost 14mos. I do not retain fluid, I weight 110lbs. Due to not having a lot of body fat I have more site pain than most. My question is my sites can be on my left side and they do not hurt as long as the sites on my right side. Does anyone know why this might be? Also when my sites are on my right side they do not last as long. Any suggestions as why?

posted 21 days ago by A myPHteam User

i have same problem don't know why either

posted 17 days ago

How can I get to the daily postings on new break thoughs on treating this disease and the experience of PH members

I wanted to go back and read some of the articles but do not know how to get back to them.

posted 30 days ago by A myPHteam User

hit the box on the very right top of page

posted 17 days ago

What is the best way to get the attention of PH doctors who do not have a sense of urgency in your case and how do you get them motivated???

I was finay diagnosed with PH four months after it showed its ugly head when the pulseox would not go over 87 after rotator cuff surgery in October 2017. It was not actually diagnosed until I had a heart attack the end of January 2018 even though I had been on oxygen 100% of the time since October 5th. The first meeting with my pulmonologist he referred me to a specialist team… read more

posted about 1 month ago by A myPHteam User
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Jan both machines can have oxygen. Each machine helps differently. Hope you get better soon.

posted 9 days ago

What are specific symptoms of PH?

I have PH and also COPD, ILD and rheumatoid arthritis. I am on Letairis for the PH, Spiriva and Breo for lungs and Celebrex for arthritis. All along I have assumed that the SOB when exerting myself too much, or bending over, is from lung issues and the pounding heart is the PH, but could ALL of these symptoms be PH? I'm on 3 liters O2 for exercising and 2 at night. How can I know what meds are working for what problem? I've got checkups with heart and lung docs at the end of May… read more

posted about 1 month ago by A myPHteam User

I too am on Breo and I was on Celebrex for my Osteoarthritis. I'm curious about you still being on Celebrex. As soon as I was diagnosed with PH and… read more

posted 20 days ago

Has anyone tried stem cell therapy for PH?

posted about 2 months ago by A myPHteam User

My understanding is that they haven't gotten that far yet. Apparently there are companies out there who say they do them, with "some" success, I do not… read more

posted about 1 month ago

Concerning measurements

In 2013, when I was diagnosed my bp was thru the roof after the left heart Cath, I immediately was prescribed sidenifil (I now take 3 - 3times a day) last week Kaiser has me redoing all the normal tests to evaluate my severity. With the 6min walk test I passed with flying colors 98% oxgyen super exciting for me since the one I did last year I got dizzy and had to stop & take a 5sec break and restart. My BP is 130/75 consistently. I feel good more than bad lately, I used to pass out or… read more

posted about 2 months ago by A myPHteam User
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My doctor tells me that the with the echo they can only estimate how high the pressure is. A Right Heart Cath would be more accurate.

posted about 2 months ago

Is Tracleer available in Canada and covered under private drug plans?

posted 2 months ago by A myPHteam User

Yes, Tracleer is available in Canada. I was on it but was switched to Volibris. While I was on it my Blue Cross Medavie would paid for it if my NS… read more

posted about 2 months ago

Bloated after breathing issues?

Has anyone noticed that when they have trouble breathing their abdomen swells too? After the lung cramp episode on Sunday, I've noticed a fullness or bloated feeling in my stomach. I'm not sure if I'm describing it well, but my stomach is ballooned and taut to the touch

posted 2 months ago by A myPHteam User
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I get this when I start retaining fluid. Some people retain fluid in the abdomen Check your weight daily to see if your weight fluctuates. This may… read more

posted 30 days ago

Please send me information on the PH symptoms and if you can have both PH and COPD

What is the treatment for the PH and can you also have COPD with the PH ?? I was told I have both. And now suppose to be on oxygen 24/7. I can not return to the job I had and use oxygen. I need to work to support my self.

posted 3 months ago by A myPHteam User
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I too feel as you do.It is such a effort to do anything.I have a great friend who helps me out very much, I am so grateful for her. MY husband has… read more

posted about 1 month ago
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