Tom--no weany, no sissy no no no

[Guest guest]

Tom,

I too was on a vent post biopsy for about 48 hours. Not fun but completely necessary. I had a bad reaction to the anesthesia, it depressed my breathing too much and I desatted into the 60's on 4 liters of O2. I probably shaved a few years off my anesthesiologists life with the difficulties they had with me but I'm still here. And oddly I've lost the ability to be afraid of much anymore. I survived what they called a "near code" in the hospital, I survived the vent, the chest tube and all the crap they threw at me. Every day that I get up and I'm on this side of the dirt, it's pretty much automatically a good day.

Don't ever think you're less than courageous when dealing with what we must. We all do the best we can at any given moment and I am of the opinion that we all have more guts than super heroes!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Re: hi

Re: BiopsyI made the decision to have a biospy while in the hospital when RF first discovered (or should I say it discovered me). Too many things had been going on over the years dealing with my autoimmune (AOSD) that I needed some real answers to this new event. SInce I was already an inpatient, decided to do it then and there. They were able to do the less invasive method with the 3 holes and fiber optics. Found out that it was quite close to having to go to an open lung but I had a good surgeon and he got his "pound of flesh" without having to go that route. We found out what we needed to find out and final recovery was smooth.However, I was told that the woke me in surgery to remove the vent to see if I could breath on my own. (do not remember this) They sat me up and I did ok, but then started waving my arms indicating I could not breath and they had to revent me. Waking up in the

ICU with the vent still in totally freaked me out. I imagine the first time waking up on a vent is that way for many. Please tell me that is the case so I do not think that I am just a great big WEANY! I totally freaked and they finally let my wife in to calm me down and stop fighting it. After about 15-20 minutes (seemed like hours) they removed the vent and I was fine after that.All those tubes were very inconvenient when changing positions and that first big cough was an 15 on the 1-10 pain scale.But, would I do it over again to get the information, you bet.So please tell me that I was not a big wuss and weany with my first venting, ok?tom from PA> >> > I've recently been dx'd with IPF and know almost nothing about> it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't> received much info from my doc as he is waiting to see how things> improve with my quitting smoking...quit 1/1/08! He wants to put off> doing a biopsy as I also have multiple sclerosis and diabetes. But in> the meantime I feel hung up with no info and lost in space. Would love> to have friends who will help me

find myself again and who I can help in> anyway. Looking forward to meeting some.> > noreen> >>

[Guest guest]

Beth

I was awake and aware for a period I shouldn't have been as the

anesthesia wore off too quickly and this was while they were fighting to

get the breathing restarted and between the pain and the inability to

breathe it wasn't fun.

So, there is one thing I'm scared of now. It's the next time of

anesthesia and waking up too early. I had a colonoscopy where the

sedation didn't take as it was suppose to but there was no pain there. I

can assure next time I have any surgery, if there is a next time, I

will have a long talk with the anesthesiologist in advance.

You can do anything in the world you want to me as long as you have me

sound asleep....lol

> > >

> > > I've recently been dx'd with IPF and know almost nothing about

> > it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

> > received much info from my doc as he is waiting to see how things

> > improve with my quitting smoking...quit 1/1/08! He wants to put off

> > doing a biopsy as I also have multiple sclerosis and diabetes. But

> in

> > the meantime I feel hung up with no info and lost in space. Would

> love

> > to have friends who will help me find myself again and who I can

> help in

> > anyway. Looking forward to meeting some.

> > > noreen

> > >

> >

>

[Guest guest]

The anesthesiologist told me afterwards that if I have surgery again

to let them know that I am difficult to intubate. My response should

have been, " what next time? " .

Twilight sleep with a bronch (have had 7 or 8) were a piece of cake

campared to the full blown deal.

> > > >

> > > > I've recently been dx'd with IPF and know almost nothing about

> > > it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

> > > received much info from my doc as he is waiting to see how

things

> > > improve with my quitting smoking...quit 1/1/08! He wants to put

off

> > > doing a biopsy as I also have multiple sclerosis and diabetes.

But

> > in

> > > the meantime I feel hung up with no info and lost in space.

Would

> > love

> > > to have friends who will help me find myself again and who I can

> > help in

> > > anyway. Looking forward to meeting some.

> > > > noreen

> > > >

> > >

> >

>

[Guest guest]

Tom,

Me too...all my medical records are red tagged. "Patient known to have narrow airway. Requires fiberoptic intubation." I also wear a MedicAlert bracelet that says the same thing. Being difficult to intubate is something that needs to be known by anyone who is treating us. If we can't speak for ourselves (as in the case of a car accident) we need to make that information extremely easy for emergency personell to access. I have an envelope with my medical info and my Healthcare proxy information taped to the glove compartment of my car and I have all my most up to date medical records loaded on to a "memory stick" that is attached to my key chain. All that in addition to my Medic Alert bracelet hopefully would assure I would get the appropriate treatment in case of emergency!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Re: Tom--no weany, no sissy no no no

The anesthesiologist told me afterwards that if I have surgery again to let them know that I am difficult to intubate. My response should have been, "what next time?".Twilight sleep with a bronch (have had 7 or 8) were a piece of cake campared to the full blown deal.> > > >> >

> > I've recently been dx'd with IPF and know almost nothing about> > > it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't> > > received much info from my doc as he is waiting to see how things> > > improve with my quitting smoking...quit 1/1/08! He wants to put off> > > doing a biopsy as I also have multiple sclerosis and diabetes. But> > in> > > the meantime I feel hung up with no info and lost in space. Would> > love> > > to have friends who will help me find myself again and who I can> > help in> > > anyway. Looking forward to meeting some.> > > > noreen> > > >> > >> >>

[Guest guest]

Just my two cents worth here on the VATS issue... I had mine the day

after Christmas (Boxing Day in Canada and the UK - OZ too?). Unlike

the other folks who have chimed in so far, I had no problems, in fact

the surgeon let me go home the next afternoon - in the middle of a

snow storm, I might add!!! No problems post-op, no pain, no

coughs...I guess I am one of the luck ones! Here's hoping that my

ability to tolerate that procedure so well will stand me in good

stead with the transplant team as the complete my evaluation.

Steve aka...Knip Dx IPF 9/07 confirmed via VATS 12/07

57 Plymouth, NH

> > > >

> > > > I've recently been dx'd with IPF and know almost nothing about

> > > it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't

> > > received much info from my doc as he is waiting to see how

things

> > > improve with my quitting smoking...quit 1/1/08! He wants to put

off

> > > doing a biopsy as I also have multiple sclerosis and diabetes.

But

> > in

> > > the meantime I feel hung up with no info and lost in space.

Would

> > love

> > > to have friends who will help me find myself again and who I can

> > help in

> > > anyway. Looking forward to meeting some.

> > > > noreen

> > > >

> > >

> >

>

[Guest guest]

My biopsy happened at noon. By 3.30 pm. I was in the ward, awake and ready to eat. I had no pain, no discomfort and went home the next day. My only time of discomfort, and it was minimal, was a result of a catheter to drain the urine. A scratch happened and the blood coagulated and stopped me up. The only course left was to pee it out, and that hurt. For the moment. The second discomfort was removing the huge piece of bandage applied with Gorilla glue. The third day I was back to my normal schedule and working.

The value? Well, I learned that I had the original diagnosis. And that settled that.

Full disclosure: I tolerate pain extremely well. Except for heart break. Jack79/IPF - UIP/dx06/05 Maine

Re: hi

Re: BiopsyI made the decision to have a biospy while in the hospital when RF first discovered (or should I say it discovered me). Too many things had been going on over the years dealing with my autoimmune (AOSD) that I needed some real answers to this new event. SInce I was already an inpatient, decided to do it then and there. They were able to do the less invasive method with the 3 holes and fiber optics. Found out that it was quite close to having to go to an open lung but I had a good surgeon and he got his "pound of flesh" without having to go that route. We found out what we needed to find out and final recovery was smooth.However, I was told that the woke me in surgery to remove the vent to see if I could breath on my own. (do not remember this) They sat me up and I did ok, but then started waving my arms indicating I could not breath and they had to revent me. Waking up in the

ICU with the vent still in totally freaked me out. I imagine the first time waking up on a vent is that way for many. Please tell me that is the case so I do not think that I am just a great big WEANY! I totally freaked and they finally let my wife in to calm me down and stop fighting it. After about 15-20 minutes (seemed like hours) they removed the vent and I was fine after that.All those tubes were very inconvenient when changing positions and that first big cough was an 15 on the 1-10 pain scale.But, would I do it over again to get the information, you bet.So please tell me that I was not a big wuss and weany with my first venting, ok?tom from PA> >> > I've recently been dx'd with IPF and know almost nothing about> it.. Have had 2 PFT's done and am waiting to do a 3rd. Haven't> received much info from my doc as he is waiting to see how things> improve with my quitting smoking...quit 1/1/08! He wants to put off> doing a biopsy as I also have multiple sclerosis and diabetes. But in> the meantime I feel hung up with no info and lost in space. Would love> to have friends who will help me

find myself again and who I can help in> anyway. Looking forward to meeting some.> > noreen> >>