Re: Ze** and PH

[Guest guest]

I was diagnosed with Pulmonary Arterial Hypertension following the

right sided heart catheterization. The cath was done in September,

2007, but I wasn't given this information until November, 2007, by

the transplant team at UPMC. That was kind of scary - I don't know

why they didn't tell me in September? Anyway, the first treatment

recommended was Viagra (also called Revatio)and both contain the drug

sildenafil citrate. But, my presription company would not pay for

it. The pharmacist told me that they would not pay for it because it

was Viagra, and because of it's more popularly presribed for other

reasons (hahaha). Anyway, then my pulmonologist prescribed Tracleer

(which contains the drug Bosentan)which has shown to reduce pulmonary

arterial pressure. I have been on Tracleer since January. It's

known side effects include liver damage, so I am required to have a

liver function test every 4 weeks. So far, I have not had any side

effects. I will not know if the Tracleer is working until my next

heart cath or echo. Although I had an echo and it did not reveal the

pulmonary hypertension. I also had a dobutamine stress test and it

did not reveal the pulmonary hypertension either.

Like you, I did not exhibit any signs of PH. I did not have any

swelling, until after diagnosis. And, now I take Lasik to reduce

fluid retention.

My transplant team advised that because of the PH, I would not be

eligible for a single lung transplant, that it would have to be a

double lung transplant. And, I am still trying to lose weight to be

eligible to be put on the wait list. It is a slow process. I have

begun Pulmonary Rehab again, hoping the exercise will help motivate

me.

It's all too overwhelming some days. I have my self-pity days, and I

have my grouchy days...but lately I have been so busy that these days

I just keep going and keep going, like the Energizer Bunny.

I hope I didn't bore you with my details, but I just thought you

might like the additional information.

Also, I will be attending the Pulmonary Hypertension Association's

International Conference in Houston, Texas, on June 19-22, 2008. I

hope to return from there loaded with information. This is a medical

care provider conference, as well as a patient conference. My

pulmonologist from the Cleveland Clinic is on the schedule to be one

of the speakers.

God Bless,

Tina (41)

IPF 04/07 PH 11/08 Ohio

> > > > > >

> > > > > > 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.

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Tina,

Actually, I was exhibiting signs of PAH and guessed that is what it was. My oxygen dropping really fast and being slow to recover. I was also having crushing Angina pain. Because I had been totally clear, my pulmonologist did not believe it was PAH, but he did send me to a consult and sure enough ..... full blown, stage 4.

My consult doc who happens to be Chief of Pulmonary Medicine at the University here is starting a new Pulmonary Hypertension Clinic. I will be one of the very first patients. I am excited about it. It is such a serious disease and often not treated aggressively.

I will ask my doctor if he is going to the conference in Houston in June.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > > > > >> > > > > > > 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.> > > > > > >> > > > > > > > > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Hi Tina, thanks for the info, and any you pick up in Texas that you are able to pass on would be most welcome.

Tina, Joyce and anyone else with PH, do you get headaches? I'm not normally one to get headaches, but I seem to have had one for the last fortnight. I wondered if it might be because of the PH.

Love Ze xx

> > > > > > >> > > > > > > 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.> > > > > > >> > > > > > > > > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Zena,

Nope, just the chest pain and falling numbers. I did have excruciating headaches from the Flolan when I first started it. I am not a headache person either and have no desire to be! I hate headaches!

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

> > > > > > > >> > > > > > > > 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.> > > > > > > >> > > > > > > > > > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Hmmm I wonder why I'm getting them then. Oh well something else to get checked out then > > > > > > > > >> > > > > > > > > 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.> > > > > > > > >> > > > > > > > > > > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>