Pulmonary Hypertension Support Group
Pulmonary hypertension (PH) is an increase in blood pressure in the pulmonary artery or lung vasculature, leading to shortness of breath, dizziness, fainting, and other symptoms, all of which are exacerbated by exertion. Depending on the cause, pulmonary hypertension can be a severe disease with a markedly decreased exercise tolerance and right-sided heart failure.
Hi everyone.
I had my multiple bilateral PE 7 months ago. I was carrying the PE's for about 6 months...my breathing was getting worse and worse over time until I went to the ER and was diagnosed. I have since been diagnosed with Factor V Leiden, so at least we know the cause.
Unfortunately my breathing seems to be getting worse over the past couple of months. I am a 3x a week exercise guy, but I just do not have the breath to do any kind of cardio..no matter how light. Stairs are even getting difficult. So I was sent for a VQ lung scan which showed many clots still in my lungs. The doc said that sometimes the clots will not dissolve completely over time if they go undiagnosed for a long period of time. In any case, the risk is developing Pulmonary Hypertension and from my quick research....this is something that is not good at all.
My echo cardiogram early on did not show damage to my heart, but they are now sending me for another one as well as a breathing test.
While all of this has been going on, I developed a seizure and anxiety problem that I am dealing with too.
Was hoping someone might have some experience with Pulmonary Hypertension and could give me an idea of what to expect.
Many thanks and best wishes.
Bill
I had my multiple bilateral PE 7 months ago. I was carrying the PE's for about 6 months...my breathing was getting worse and worse over time until I went to the ER and was diagnosed. I have since been diagnosed with Factor V Leiden, so at least we know the cause.
Unfortunately my breathing seems to be getting worse over the past couple of months. I am a 3x a week exercise guy, but I just do not have the breath to do any kind of cardio..no matter how light. Stairs are even getting difficult. So I was sent for a VQ lung scan which showed many clots still in my lungs. The doc said that sometimes the clots will not dissolve completely over time if they go undiagnosed for a long period of time. In any case, the risk is developing Pulmonary Hypertension and from my quick research....this is something that is not good at all.
My echo cardiogram early on did not show damage to my heart, but they are now sending me for another one as well as a breathing test.
While all of this has been going on, I developed a seizure and anxiety problem that I am dealing with too.
Was hoping someone might have some experience with Pulmonary Hypertension and could give me an idea of what to expect.
Many thanks and best wishes.
Bill
I was (and still am) under the care of Papworth hospital and was fortunate enough to be put forward for the pulmonary thromboendarterectomy surgery which I had in October 2012 and - after a three month recovery - has changed my life.
I am back at work full-time, swim 10 lengths, walk around the park with my dogs, no longer need oxygen. My blood pressure is down and I am fit and healthy at the moment.
so - there is life and hope after PH!!
Thanks for the quick response. Would you mind explaining when your PH symptoms began after your PE...and what they were like?
Very much appreciated.
Bill
Things have altered so much since the op and while my right heart might be a bit damaged my life is so much better.
Being out of breath, sharp pains in my side and exhaustion are my only symptoms. I am wondering if your oxygen level was low or had any other symptoms? I am having another VQ on Friday and hopeful to get my pressures check with a heart cath to get ahead of this.
Any advice would be so appreciated.
Thx. Bill
My oxygen levels were awful and very bad. My echo did show up some anomalies too. I was always tired but it was the breathlessness that really go to me. I also had a pain in my throat and the pulse in the right side of my neck was very noticeable (my daughter called it my alien pulse!). My skin wasn't a nice colour either. Please - if you do find out you have PH - consider having surgery if you can. You will be amazed what a difference it makes