Pulmonary Hypertension Support Group

Hi there linco and welcome to DS.
I was admitted to hospital with breathlessness caused by multiple blood clots in my lungs last June - almost a year ago now!
I had PH because the blood couldn't flow through my lungs but I understood that as the clots dissolved then the PH would right itself too ....it didn't and I was diagnosed with chronic thromboembolic PH in November.
I do understand how you must be feeling right now. Its a scary time but there are lots of new treatments for PH now - and lots of research that will hopefully bring more new teatments out very soon.
I am taking sildenafil (viagra) which has helped enormously and am feeling much much better than I did 6 months ago.
Please feel free to read my journal if you think it will help. Don't lose hope - I'm now back at work in a busy library and I've just returned from a trip to see my son and his family who live a 7 hour flight away from me!
Anytime you think I can help just ask !!!Take care - Sandi xx

How did you get through the fear? Fear of not knowing, fear of all of the dreary information on the internet and such.

If you don't mind me asking, what is your pressure as measured in the pulmonary vein and how extreme are your symptoms?

We were at the cardiologist this afternoon and are scheduled for a cath on Thursday.

Thank you very much for responding, God bless

Hi linco,
I don't know what my pressures are but if you have time to read my journal you'll see that - yes - I was scared - but once diagnosed and given a treatment plan I started to feel a lot less anxious.
The right-heart catheter is the best test for PH and don't worry because I didn't feel a thing after the injection - keep me posted and let me know how everything goes - love S x

Hi SandieG,

Have the right side heart cath scheduled for tomorrow.

Cardiologist was going to wait six months and perform another echo. He also said that the increased pressure could be from hormonal imbalance and not to worry. We decided to not wait the six months and have a cath this week. That way, if the cath confirms the echo we can start treatment right away in stead of six to eight months from now.

Will fill you in later on the results.

Thanks,
Linco

Good luck with your tests - I think that you are doing the right thing by having them done asap. If PH is confirmed then the sooner it's treated the better.
thinking about you - love Sandi x

My PH pressure is 71. I was diagnosed three years ago and it has gone from 50 to 71. I have had many caths and echos and TEE to see the pressures as well as my heart, since I have right sided heart failure too, and reduced lung capacity due to asthma. So, I am on oxygen 24/7.
Yes, if you read the internet, it is very scarey, so I just dont do it anymore. I take life one day at a time and dont think about how bad it could get.
Sandi is right. There are many new drugs out there now and I am also on viagara and find that it has really helped. I can breathe much better, and it has only been a month.
What happened with your heart cath? Let us know.... oh and yes WELCOME!

Am a 28 year old and i have just been diagnosed with ph am so sad i don't know what to expect am scared i feel lost can't anyone help please any info will help.

The Pulmonary Hypertension website has a ton of information, very active discussion boards and daily chat sessions. phassociation.com You will find a caring community of patients and caregivers and all the information/support you want and need.

When I was first diagnosed with PAH my pressure was 110. The doctors were surprised I could still walk into their office. I am thankful that I go there when I did. It takes a while to get the right diagnoses but sooner the better. I am taking revatio and letaris. I thank God every day for His help. Praying for you. Love and Prayers, Berta

Hi. I was told I had PH on May-2008. I found out when I went to the emergentcy hospital in N.D. after working all week. I gained alot of fluids and felt like I was having a heart-attack. After an echoe I was told to go to Mayo Clinic in Rochester,Minn. Since I had no money, no job (Drs said "no work" and didn't know anybody I came back to SLC where I had a history. I prayed to the Lord everyday and with Him and good old friends found really good Drs and got on SSI. I am on revtio and fuorosemide,potassium,along with all kinds of meds. The revatio was like a miracle drug. It helped my SOB tremendously. When I first came back here I had to live upstairs but now I have my own apt. that accepts pets and has no stairs,so there is light at the end of the tunnel. I was very scared especially for my one and only son(19). Pray to our kind Father in Heaven and God Bless You All. PH is a tough one but I'm confidant there will be better and better treatment.