Pulmonary Hypertension

[Wiggler83]

Has anyone else here been diagnosed with Pulmonary Hypertension? I have had two Right-heart Catheterizations. The first showed pressure of 60 and the second one showed pressure of 74. So obviously the disease is progressing. I would just like to talk with someone one else who has it so we can commiserate together, Lol!

[Katinka46]

Good morning Wiggler. I am intrigued by your story. PH usually has a cause. Is it linked to a lung condition? If you feel comfortable can you tell us a little more? What triggered the doctors concern to refer you for RHC? Are you in the UK and are you being seen at one of the six tertiary centres for PH?Sorry about the interrogation.

All the best

K

[Katinka46]

Hello again. I have just read your profile so some of my questions are answered. I think it was very lax of your doctors not to pick up on your symptoms to test for PH earlier. The difficulties you describe are classic for PH. There is a good PH Facebook group you might find helpful to join. A lot of the members are in the US. If your PH turns out to be CTEPH, (you say you spend a lot of time on the computer so look it up!) then there is an operation for that. Several centres in the US do it. The main one is in San Diego, CA. Good luck!

[Wiggler83 in reply to Katinka46]

Hi Katinka, I just joined the Facebook group so I'm sure that will be helpful. I looked up CTEPH and I'm pretty sure I don't have that type of PAH. I have been diagnosed with Diastolic heart disease and heart failure seems to run in my family so I'm Assuming (again) that I am in the Group 2 PAH or Left Heart failure. I changed Drs before my second RHC and missed my follow up with him due to the side effects of the antibiotic that they sent me home with when discharged from hospital. He is the only Dr in the area who specializes in PAH. He put me on two new meds, Opsumet and Cialis, and upped the Lisinopril and Lasix. I am looking forward to meeting with him again and see what he does!My concern right now is that I don't know how serious my condition is. I know there is no cure for PAH and I believe my pressure of 74 puts me in stage 4(!).

Sorry for the Long reply. Best of Luck to you!

[Carnival567]

I also have PH, diagnosed 4 years ago, probably caused by my congenital heart disease and probably not helped by my lung diseases. I was put on supportive care only. I hope your doctors are going to send you to one of the specialist centres. My medical history is very complicated and not typical. I wish you all the best xx

[Wiggler83 in reply to Carnival567]

Thank you, Carnival567, I'm sorry to hear that you're on supportive care only. I'm assuming(!) that is like our hospice care in the States. I haven't checked out CTEPH yet, but mine started with exercise-induced asthma, then I was hospitalized for Flu/pneumonia as I was in acute respiratory failure (according to the chart). I was sent home with an oxygen tank and no instructions about its use. I quickly learned what hypoxemia is! It is lovely how we learn some things isn't it?I wish you all the best also!