Re: Getting scared

[Guest guest]

Fran wrote:

> For me it is helpful when I begin thinking scary thoughts about 'what

> in the heck am I going to do to myself'...to focus on 'what in the

> heck have I done to myself, AND WILL MOST CERTAINLY KEEP ON DOING if

> I don't have this surgery.

I really think that for many of us, it's not a case of " us " doing

anything to ourselves. At a certain point, this becomes a disease. You

may not eat optimally, but you know what? Lots of thin folks eat badly

too! I'm generalizing, of course, but I do think that in general we need

to stop beating up on ourselves about this thing. Realize that we have

crossed a threshold into a disease process that is very difficult if not

impossible to reverse. The DS puts us into remission. :-)

M.

---

in Valrico, FL, age 39

Lap DGB/DS by Dr. Rabkin 10/19/99

Starting weight 299, now 153

Starting BMI 49.7, now 25.5

Starting size 26/28, now 10/12

http://www.duodenalswitch.com/Patients/M/melaniem.html

Direct replies: mailto:melanie@...

_________________________________________________________

[Guest guest]

By the way, I forgot to write who this was from. Sorry, Sharon

[Guest guest]

The exact same things have happened to me, I am now on the lung transplant list at Cedars Sinai in L.A. You really need to have an oxygen meter if you don't. What has helped me the most is Pulmonary Rehab and losing weight. This all happened to me in April and May of this year. Three times with the collapsed lung. But I have adjusted pretty well, but must really watch my oxygen level or I have a coughing fit. You need to keep yours organs suppled with lots of oxygen. It does get better. CarrollHello all, my name is and I have had IPF for 3+ years now. Up to now, it has not been that bad, a LOT of coughing, some shortness of breath. I agreed to get some home O2 tanks for exertion or whatever, but was still very functional. Then I agreed to let the doctor perform a biopsy. Big mistake. After the first surgury, I was weak and sore and needed alittle more O2 than usual, but went home OK. Three days later I start blowing pink frothy foam from the drain site in my chest. The lung was leaking air from the surgury and my lung collapsed. I went back into the hosp. for 2 weeks with a chest tube to try to resolve the pneumothorax (collaped lung). Twice more during that time the lung collapsed again. It was still leaking air from the biopsy surgury. Finally they released me saying that it looked like the leak stopped.I was home for 3 days and could tell that something was wrong. I had a sudden HUGE shortness of breath incident. Oxygen wasnt helping, I thought that I was dying. Called 911, rode the ambulance to the hosp. where the x-ray showed a 75% collapse of my lung. The doctor said that I had to have a second surgury to go back and seal the leak. After the second surgury, I thought that I was going to die in the hosp. My lungs just seemed to quit working at all. I was needing 3-4 lpm O2 just to lay still. If I tried to stand up I would collapse with choking coughing and feel as if I was suffocating. I have had this sensation a lot lately and I hate it.Anyway, I laid up in the hosp. for another week and the leak is indeed stopped, but now I cant breathe. I am a slave to this Oxygen hose and keep having to just sit or lay down and gasp like a fish on the dock. They discharged me any way, and the first day at home was nothing less than terrifying. I couldnt seem to get enough air. Now I am slowly improving , and believe that I will get back to my "normal" soon. The problem is that I feel like I have gotten a glimpse of what this is going to be like down the road, and I am afraid. How do you deal with that suffocating gasping sensation? I take some heavy duty cough suppressant which helps. Oh, by the way, I am being considered for a lung transplant.That is a whole different set of fears. I know that I am rambling here, but any words of wisdom would be greatly appreciated.

[Guest guest]

this is probably a really stupid question, but should I be worried about how

much O2 I am using? If I use too much will my lungs get " lazy " and not be able

to function otherwise? When I was trying to get it together at the hosp. to come

home, the nurses would say that I needed to " wean " myself from the O2. I was

clinging to it and would freak out if they tried to turn it down. I was gasping!

Now I am home and with the aid of my hycodan cough suppressant, I can sit and

walk slowly with no O2, but I get very dizzy. I dont really know how to use this

oxygen, I guess.

>

> > Hello all, my name is and I have had IPF for 3+ years now. Up

> > to now, it has not been that bad, a LOT of coughing, some shortness

> > of breath. I agreed to get some home O2 tanks for exertion or

> > whatever, but was still very functional. Then I agreed to let the

> > doctor perform a biopsy. Big mistake. After the first surgury, I was

> > weak and sore and needed alittle more O2 than usual, but went home

> > OK. Three days later I start blowing pink frothy foam from the drain

> > site in my chest. The lung was leaking air from the surgury and my

> > lung collapsed. I went back into the hosp. for 2 weeks with a chest

> > tube to try to resolve the pneumothorax (collaped lung). Twice more

> > during that time the lung collapsed again. It was still leaking air

> > from the biopsy surgury. Finally they released me saying that it

> > looked like the leak stopped.I was home for 3 days and could tell

> > that something was wrong. I had a sudden HUGE shortness of breath

> > incident. Oxygen wasnt helping, I thought that I was dying. Called

> > 911, rode the ambulance to the hosp. where the x-ray showed a 75%

> > collapse of my lung. The doctor said that I had to have a second

> > surgury to go back and seal the leak. After the second surgury, I

> > thought that I was going to die in the hosp. My lungs just seemed to

> > quit working at all. I was needing 3-4 lpm O2 just to lay still. If

> > I tried to stand up I would collapse with choking coughing and feel

> > as if I was suffocating. I have had this sensation a lot lately and

> > I hate it.Anyway, I laid up in the hosp. for another week and the

> > leak is indeed stopped, but now I cant breathe. I am a slave to this

> > Oxygen hose and keep having to just sit or lay down and gasp like a

> > fish on the dock. They discharged me any way, and the first day at

> > home was nothing less than terrifying. I couldnt seem to get enough

> > air. Now I am slowly improving , and believe that I will get back to

> > my " normal " soon. The problem is that I feel like I have gotten a

> > glimpse of what this is going to be like down the road, and I am

> > afraid. How do you deal with that suffocating gasping sensation? I

> > take some heavy duty cough suppressant which helps. Oh, by the way,

> > I am being considered for a lung transplant.That is a whole

> > different set of fears. I know that I am rambling here, but any

> > words of wisdom would be greatly appreciated.

> >

> >

> >

>

[Guest guest]

,No no no! It is so obvious you need more when you move I want to come turn it up for you. My o2 provider just freaks when I tell her I am on 8 lpm on exertion, they worry about getting out the co2,but co2 is not our problem O2 IS and that is what I need even though I can turn it down to 2-3lpm when I am sitting still. Turn it up until you don't feel the 'feeling'. When your lungs heal you may be able to turn it down but right now your lungs are still hurting. I like those nurses to wean themselves from o2, maybe stick a bag over their heads. (and no I know they mean well Beth but come on if he was terrified why would they tell him that?) Dyane Phoenix ipf 02ps Look at your fingernails. If they have any medium to dark purple or blue tinge when you are walking you need more oxygen.> > > > > Hello all, my name is and I have had IPF for 3+ years now. Up > > > to now, it has not been that bad, a LOT of coughing, some shortness > > > of breath. I agreed to get some home O2 tanks for exertion or > > > whatever, but was still very functional. Then I agreed to let the > > > doctor perform a biopsy. Big mistake. After the first surgury, I was > > > weak and sore and needed alittle more O2 than usual, but went home > > > OK. Three days later I start blowing pink frothy foam from the drain > > > site in my chest. The lung was leaking air from the surgury and my > > > lung collapsed. I went back into the hosp. for 2 weeks with a chest > > > tube to try to resolve the pneumothorax (collaped lung). Twice more > > > during that time the lung collapsed again. It was still leaking air > > > from the biopsy surgury. Finally they released me saying that it > > > looked like the leak stopped.I was home for 3 days and could tell > > > that something was wrong. I had a sudden HUGE shortness of breath > > > incident. Oxygen wasnt helping, I thought that I was dying. Called > > > 911, rode the ambulance to the hosp. where the x-ray showed a 75% > > > collapse of my lung. The doctor said that I had to have a second > > > surgury to go back and seal the leak. After the second surgury, I > > > thought that I was going to die in the hosp. My lungs just seemed to > > > quit working at all. I was needing 3-4 lpm O2 just to lay still. If > > > I tried to stand up I would collapse with choking coughing and feel > > > as if I was suffocating. I have had this sensation a lot lately and > > > I hate it.Anyway, I laid up in the hosp. for another week and the > > > leak is indeed stopped, but now I cant breathe. I am a slave to this > > > Oxygen hose and keep having to just sit or lay down and gasp like a > > > fish on the dock. They discharged me any way, and the first day at > > > home was nothing less than terrifying. I couldnt seem to get enough > > > air. Now I am slowly improving , and believe that I will get back to > > > my "normal" soon. The problem is that I feel like I have gotten a > > > glimpse of what this is going to be like down the road, and I am > > > afraid. How do you deal with that suffocating gasping sensation? I > > > take some heavy duty cough suppressant which helps. Oh, by the way, > > > I am being considered for a lung transplant.That is a whole > > > different set of fears. I know that I am rambling here, but any > > > words of wisdom would be greatly appreciated.> > >> > >> > >> >>

[Guest guest]

That is a typical statement made by a nurse not familiar with PF. You

will often hear nurses familiar with COPD warning greatly against too

much oxygen and they are correct in some of those warnings but COPD is

an obstructive disease and PF is restrictive. You should be on whatever

amount of oxygen it takes to keep you above a certain saturation level

at all times. That level is generally considered to be 90%. You need an

oximeter and need to monitor yourself. One cannot go simply by shortness

of breath. You are likely to need different amounts sleeping, sitting,

in activity and exercising. This also immediately brings to question

have you seen a pulmonologist at an ILD center expert in PF yet? If not,

I'd highly recommend that.

> >

> > > Hello all, my name is and I have had IPF for 3+ years now.

Up

> > > to now, it has not been that bad, a LOT of coughing, some

shortness

> > > of breath. I agreed to get some home O2 tanks for exertion or

> > > whatever, but was still very functional. Then I agreed to let the

> > > doctor perform a biopsy. Big mistake. After the first surgury, I

was

> > > weak and sore and needed alittle more O2 than usual, but went home

> > > OK. Three days later I start blowing pink frothy foam from the

drain

> > > site in my chest. The lung was leaking air from the surgury and my

> > > lung collapsed. I went back into the hosp. for 2 weeks with a

chest

> > > tube to try to resolve the pneumothorax (collaped lung). Twice

more

> > > during that time the lung collapsed again. It was still leaking

air

> > > from the biopsy surgury. Finally they released me saying that it

> > > looked like the leak stopped.I was home for 3 days and could tell

> > > that something was wrong. I had a sudden HUGE shortness of breath

> > > incident. Oxygen wasnt helping, I thought that I was dying. Called

> > > 911, rode the ambulance to the hosp. where the x-ray showed a 75%

> > > collapse of my lung. The doctor said that I had to have a second

> > > surgury to go back and seal the leak. After the second surgury, I

> > > thought that I was going to die in the hosp. My lungs just seemed

to

> > > quit working at all. I was needing 3-4 lpm O2 just to lay still.

If

> > > I tried to stand up I would collapse with choking coughing and

feel

> > > as if I was suffocating. I have had this sensation a lot lately

and

> > > I hate it.Anyway, I laid up in the hosp. for another week and the

> > > leak is indeed stopped, but now I cant breathe. I am a slave to

this

> > > Oxygen hose and keep having to just sit or lay down and gasp like

a

> > > fish on the dock. They discharged me any way, and the first day at

> > > home was nothing less than terrifying. I couldnt seem to get

enough

> > > air. Now I am slowly improving , and believe that I will get back

to

> > > my " normal " soon. The problem is that I feel like I have gotten a

> > > glimpse of what this is going to be like down the road, and I am

> > > afraid. How do you deal with that suffocating gasping sensation? I

> > > take some heavy duty cough suppressant which helps. Oh, by the

way,

> > > I am being considered for a lung transplant.That is a whole

> > > different set of fears. I know that I am rambling here, but any

> > > words of wisdom would be greatly appreciated.

> > >

> > >

> > >

> >

>