Re:Flolan

[Guest guest]

Hello Joyce,Thank you for your warm welcome.  I thought Flolan was bad because right at the beginning a nurse took too long to make the change and instantly my body formed a C due to pain and my face melted ( they say the correct term is flushed).  I was afraid to look into a mirror later.  Remodulin alos has some bad side effects to get thru, jaw pain, leg pain, headache, ect.  I got thru all those except

leg pain,  the pain was in  the marrow and exploding...I ended up back in the hospital,  but now everything manageable.  How did you get thru those first few days?     Gayleen Re: cheyenne195959@...

Gayleen,

Welcome to our group.  We are just a group of sickies trying to hold each other up.  Today is a bad day for me.  I am on Flolan.  You said that you thought it was a bad drug, why?  It has literally saved my life..  I have been on it for about 2 1/2 months.  I go into the hospital tomorrow to see if my pressure is down ....among other things.  It has stopped the horrible chest pain and helped control my plummeting saturations.  They experimented during the catherization to see what would work on the pressures and this one did.  It is a real inconvenient drug, but the side effects are nothing right now.  I went through each of the side effects, but once passed did not return.  They may add to it or change it after they get this under control. 

You have come through so much.  What a strong woman you are.  That you survived ARDS is a miracle. 

Glad that you are here. 

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  

 

>> Hello Group,> I have just joined and from reading a few of your digests, think I have come home: )> I hope everyone is doing well today and stable. To introduce myself, my name is Gayleen, 48 years old, never smoked (every nurse and doctor asks that!) and have been grappling with IPF since Christmas 2001. I think I fit the normal pattern, a few pneumonia's before the season and I fell into respiratory distress on Christmas eve. I woke up on life support on Feb. 20. The doctors had to resuscitate me four times so they induced a coma. My family had been gathered to say their goodbyes because it was thought I would not live. My daugthers were 14 and 16. My heart bleeds that they had to experience that pain. Over time this was to happen so many times, that they knew I'd come back even when the doctors said 2% in 100. I was on the

ventilator> for another month and half. Then a month in rehab, where I talked again, walked again(how painful that was) and regained most of my memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My sixteen year old Mirelle, went from being a teen in high school with their little cares to changing my port a potty, giving me insulin shots, helping me sort the 15 pills I was taking and running our house. My ex-husband drove from California and picked up my 14 year old, on the grounds I was too sick to care for her. Mirelle refused to go with him. I continued to visit the lung specialist and continued to crash, coughing up blood and gasping for air. I rode the ambulance too often. I was still trying to work, dragging my cannisters into the office and trying to have a phone discussion without coughing the whole time. After another lenghty hosital stay I lost my job. Six months later the company went out of business. Everyone there

was like> family and that hurt alot.> It also meant I had no insurance. At that time my ex file for custody of my youngest daugther and I had to appear in court in California to fight it. I was relatively stable and was driven to CA, 8 large cannisters a few small, refilled in Arizona, but i arrived in ca in insulin shock(I couldn't afford it) Fell into a diabetic coma for a week in a hospital outside of Victorville. I missed the court appearance. Recovered from that and was relatively stable for months, then it starts up again, pneumonia's ect.> After a few different ineffective doctors I found Dr Lugiania at St marys in Long beach and he helps me thru 3 ICU events and recommends I see DR Saggar at UCLA. After being in ICU at ucla, I awake to find I have a Floland Inplant, the worst medication in the world, thank God I only had it two days before they put in> a Remodulin implant an experimental med for pulmonary

hypertension. Did I mention I had agreed to be a guinea pig? I had days left in my life expectancy and now I have months according to the Experts... but I have my own plan and that is to keep on going. Now they want me to take a pill called Letarisis , anyone have experience with that? I am on 4L 24/7 down to 10 pred but feeling the need for more. Just started losing my hair this year. Haven't been off of pred since 2002, was wondering what was messing with my sunny mood? Just got out of a 2 month stay in the hospital and am moving so ssssslow. wonder if I'll ever be "me"again.> Hope this wasn't too much, it feels good to write it down for some reason.> Thanks, Gayleen> > > > __________________________________________________>

[Guest guest]

Gayleen,

I just knew that I had to. They took it very slow and that helped. The flushing was awful. I felt like I was on fire. The headaches were horrible, but Lortab took care of that. The nausea, etc. never happened. I tolerate meds really well. Thank God!

My pressures were 75-80, so there wasn't much time to be experimenting. That is why they immediatly went to the Big Dog. We have had some mishaps and scares us to death. But, it is becoming a part of our everyday life. Just one more cross to bear.

Besides the pressures, I have a 70 % blockage in the same artery that the PAH is in. They are supposed to fix that this week.

I look forward to getting to know you when I return from the Big House.

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 > >> > Hello Group,> > I have just joined and from reading a few of your digests, think I have come home: )> > I hope everyone is doing well today and stable. To introduce myself, my name is Gayleen, 48 years old, never smoked (every nurse and doctor asks that!) and have been grappling with IPF since Christmas 2001. I think I fit the normal pattern, a few pneumonia's before the season and I fell into respiratory distress on Christmas eve. I woke up on life support on Feb. 20. The doctors had to resuscitate me four times so they induced a coma. My family had been gathered to say their goodbyes because it was thought I would not live. My daugthers were 14 and 16. My heart bleeds that they had to experience that pain. Over time this was to happen so many times, that they knew I'd come back even when the doctors said 2% in 100. I was on the ventilator> > for another month and half. Then a month in rehab, where I talked again, walked again(how painful that was) and regained most of my memory.I left Baylor Hospital in Texas on 80 pred and 3L oxygen 24/7. My sixteen year old Mirelle, went from being a teen in high school with their little cares to changing my port a potty, giving me insulin shots, helping me sort the 15 pills I was taking and running our house. My ex-husband drove from California and picked up my 14 year old, on the grounds I was too sick to care for her. Mirelle refused to go with him. I continued to visit the lung specialist and continued to crash, coughing up blood and gasping for air. I rode the ambulance too often. I was still trying to work, dragging my cannisters into the office and trying to have a phone discussion without coughing the whole time. After another lenghty hosital stay I lost my job. Six months later the company went out of business. Everyone there was like> > family and that hurt alot.> > It also meant I had no insurance. At that time my ex file for custody of my youngest daugther and I had to appear in court in California to fight it. I was relatively stable and was driven to CA, 8 large cannisters a few small, refilled in Arizona, but i arrived in ca in insulin shock(I couldn't afford it) Fell into a diabetic coma for a week in a hospital outside of Victorville. I missed the court appearance. Recovered from that and was relatively stable for months, then it starts up again, pneumonia's ect.> > After a few different ineffective doctors I found Dr Lugiania at St marys in Long beach and he helps me thru 3 ICU events and recommends I see DR Saggar at UCLA. After being in ICU at ucla, I awake to find I have a Floland Inplant, the worst medication in the world, thank God I only had it two days before they put in> > a Remodulin implant an experimental med for pulmonary hypertension. Did I mention I had agreed to be a guinea pig? I had days left in my life expectancy and now I have months according to the Experts... but I have my own plan and that is to keep on going. Now they want me to take a pill called Letarisis , anyone have experience with that? I am on 4L 24/7 down to 10 pred but feeling the need for more. Just started losing my hair this year. Haven't been off of pred since 2002, was wondering what was messing with my sunny mood? Just got out of a 2 month stay in the hospital and am moving so ssssslow. wonder if I'll ever be "me"again.> > Hope this wasn't too much, it feels good to write it down for some reason.> > Thanks, Gayleen> > > > > > > > __________________________________________________> >