Joyce and PH

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Hi Joyce,

All I know at the moment is that they have identified PH from the echo. I am waiting to see a different specialist to get the cath. I'm not looking forward to that, I think it's the idea of it more than anything. It feels bizarre as my blood pressure is generally low, especially for a big girl, it's usually 110ish over 70ish, so although I know that it's not related to pulmonary pressure, it seems weird that it's not also going high. I should have guessed something was up as the technician doing the echo kept leaving the room to ask questions.

I don't have swollen ankles, (infact I have quite slim ankles for a big girl ) I don't notice any arrythmia (sp?) and I get chest pain with the PF, so I wouldn't notice a little bit more. Ditto the shortness of breath.

I don't know how long it will be before I see Dr Wart (hahaha, should be a dermatologist with that name) I can only wait til I get a letter in the post. The usual treatment here for PH is viagra If I get any bonuses with that I'll let you know

Love Ze xxx> > > > >> > > > > I am new to the this forum and have never posted before. I am> > > > hoping> > > > > to see if my issues sound familiar and if others are> experiencing> > > > > what I am. I apologize up front for the coming long post.> > > > >> > > > > 14 years ago (I know its been a long time) I was diagnosed as> > > > having> > > > > Stage 4 T-cell Lymphoma. The bad thing was that this wasn't> > > > > diagnosed until I was in the terminal stages with all my organs> > > > > failing. I spent a month on life support and had many many bad> > > > > things happen including a stroke, ARDS, septic shock, etc.. The> > > > list> > > > > is long.> > > > >> > > > > Somehow I experienced a miracle and survived this ordeal. Went> > > > thru> > > > > a traditional regiment of CHOP + Bleomycin for several rounds. I> > > > > went into complete remission after my 5th round.> > > > >> > > > > A year after this I was told that I had to have a Bone Marrow> > > > > Transplant to prevent my kind of lymphoma from coming back. So I> > > > > went ahead with this. Part of my treatment was total body> > > > > irradiation (TBI).> > > > >> > > > > So since then I have led a very normal life except for a couple> > > of> > > > > things. I don't have the long capacity that I used to and I have> > > > > this incredible recurring cough.> > > > >> > > > > I was diagnosed about 7 year ago as having moderate restrictive> > > > lung> > > > > disease. Not a lot was done then. Given what I had gone through> > > I> > > > > didn't pay much attention to this.> > > > >> > > > > The problems that I have is that A) when doing anything aerobic> I> > > > run> > > > > out of air fairly quickly. Cycling is a huge sport where I live> > > > and> > > > > I have tried to ride at lunch with the semi-serious group. I can> > > > > keep up well for 4-5 miles but I simply run out of air. I have> > > > come> > > > > to live with this and move on at my own pace. The more annoying> > > > > problem is this cough. I get this recurring dry cough that can> > > > last> > > > > anywhere from 1 to 3 weeks. I am on week 3 of a cough right> > > now.> > > > I> > > > > went to my doc at the beginning of this cycle to get the usual> > > > > narcotic cough syrup. I have since run out. I didn't sleep at> > > all> > > > > last night and right now doesn't look promising for tonight.> > > > >> > > > > I am so sick of this cycle that I can scream. I hate the normal> > > > > routine of cough syrup but hate the lack of sleep even more. It> > > > > seems like I cough hard every 30 seconds or so. I get> > > > > embarrassed going to the doc when this cycle starts. Seems like> > > > with> > > > > all the prescription abuse going on they seem to think anyone> who> > > > > shows up as often as I do must have a problem. I am epecially> > > > > annoyed with my current internal doc as I had to direct him to> do> > > > > some additional pulmonary testing to confirm that something> > > wasn't> > > > > right.> > > > >> > > > > If only they knew how much I HATE this cycle. It hurts all> > > aspects> > > > of> > > > > my life. I simply am sick of coughing.> > > > >> > > > > I know that many people here are fighing much worse issues than> I> > > > > am. I wish them the best.> > > > >> > > > > > > > > >> > > >> > >> >>