Hi guys,
Well I am still "hanging out" and wishing that I wasn't! I keep the valve in place with a coloplast "plug" 35mm.
Tomorrow I will try the 45mm and see if it doesn't hold it all together a bit better. I find that the 35 holds it in, but it still twists and I have problems trying to navigate the tube in and pass the valve.
If I can get it to stay strait with the 45 maybe I can hang on for a while.
Dr. Fazio says that he won't tough it for a year and my surgeon in Toronto isn't back yet. I have a telephone RDV with him on the 16th.
Dr. Nicholls in London refuses to work on me, telling me that Cohen is the best and that I should go back to him...so I will wait.
Has anyone out there had the valve redone through an endoscopy????? I am still hoping against hope for a miracle here.
Let me know
Sharon

did you see the post on the other 2 docs in london, 1 at st marks and Miss sue clark at london clinic? Maybe call her, she is younger than prof nicholls and maybe has new tricks in her bag.

Do you have any idea when Dr. Cohen will be returning to his office?
Could you be there waiting for him?

I am rather afraid to fly at the moment. I fear that on top of the physical stress of the flight and the air pressure, I won't be able to intubate on board.
I can't strait drain it because I prolpase with the drain in!
Therefore, I am afraid to fly out for nothing if Cohen refuses to operate immediately! I am calmly waiting for his arrival. Only 2.5 days to go and I am hanging on by the skin of my teeth! Every intubation is triumph, every walk, meal and bath. Nothing is being taken for granted right now. If I amcalm mu husband is not. I invite people to dinner and make lots of food that I can't eat. I am blending most stuff by now other than protiens! Fear of a blocked tube is a great motivator!
I have gained 8 lbs. from living off of ice cream and that can not be good for me.
But then again being house bound and lonley with no girlfriends around and no daytime visitors is starting to get to me!!!
I will try the others in London, but I just tried another on in Paris and my answer was to go home! OR to St. Antoine where my old nemissis used to be.
I can feel myself giving up,slipping away. It is not like me at all to feel this way. I have always been a fighter like most of us here but I am loosing hope.
Keep writing, you are all my lifelines for now.
Thanks for being there.
Sharon

Remember. A lot of us on this site have told you if you want this to be your last valve revison - Go to Dr. Victor Fazio in Cleveland.
I have had a Kock pouch for 30 years and know every doctor on the planet. Fazio is your man.
[ And he did not do my surgery. ] I went to Joel Bauer in NYC.

Hey Sharon
You are a trooper. You amaze me waiting patiently. I do agree that flying without the Dr agreeing would be costly and disappointing. You are right to wait.
You are also doing what Dr Fazio told you to do, which is wait and speak to Dr Cohen. Perhaps Dr Cohen will speak with Dr Fazio, afterall he did do his fellowship with the big guy!
You are hopefilly asleep now and when you wake it will be one more day!
We are sending healing thoughts your way.

Thanks Holly, bodoni and all of the rest of you,
I had a hard morning, trying to intubate against the valve. It sometimes takes the strangest twists and turns! Took about 1/2 and hour but I stayed calm (what choice do I have?) and finally managed to work with both the 30 marlene and the 35 french. Too much blood for my taste but it finally worked.
I am still working out, my only drug for the moment. Stair master and stationary bike but without any pressure on the abdomen. Without my workouts I would loose it
I am starting to get scared about leaving the house, fear of having to intubate "elsewhere" which is a bad sign. I have convinced a girlfriend to fly with me if need be, to Toronto so that I don't have to do this plane thing alone. I will have a stopover in Montreal on either end if i want to get a decent rate but if I am not alone, it will help!
I may try for lounge priviledges so that the bathroom is a bit more private and cleaner.
One day to go. Itremble at the thought of what he wil tell me. Fazio says go with Dr. C so I am. Is Dr. C willing is the question?
I am going out to visit my sister-in-law in the hospital, my only real outting for the day but I think that I will cut it short, too scared today.
So, keep those tips and encouragements coming, you are all my cheering section and I need you greatly right now.
Thanks again
Sharon

Sharon, bedtime soon and then your phone call will be just hours away. I hope you hear what you need to hear from Dr Cohen. Keep us informed.
We all have you in our thoughts.
Holly

Ok everone, here goes.
I spoke with Dr. Cohen a few minutes ago.
He feels that the valve has loosened up and that with any luck he can go through the stoma to "tighten" it.
He cannot be sure until he sees me but says that that is what it sounds like to him.
I will fly out next week ( Monday or Tuesday). My best friend will take over from there and I hope to be able to tell you all, with much relief that it was easy.
Thank you all for your support and helpful info. It is what keeps me afloat.
I will accept any advice on flying with a prolapsed valve, right now, I am pretty nervous about it.
Sharon

Dr. Cohen did a fellowship with Dr. Fazio? I didn't know that. Dr. Cohen is my surgeon and he just returned on the fifteenth of August.

I guess you caight it at the wrong time being Thursday and all. Next week, can you hang on that long? Wouldn't it be best to just get there fast so you will be closer to the ER!?
Keep doing what you are doing. We are all still here with you.

Hi guys,
Bad day, intubation is officially my own personl nightmare
It is hard work and it belleds like hell, i just can't seem to fine the tunnel.
North, south, east or west I just can't which direction is best but it is never the same twice. How in the lords name am I going to do this on an airplane????
N.P.O.? probably. I will have to be on clar fluids form the day before and nothing the morning of or during the flight. I don't really want to have to get picked up by ambulance!
airplane bathrooms are not exactly the best place to get stuck in either ! (Been there, done that!)
So I am ticket shopping and should be taking off no later than Tues. if I can make it that far. I have no idea whether I am booking for one month or two, or more. Wheelchair assistance would be useful but how am I going to do this?
I have recieced new coloplast "plugs". I asked to ty the 45mm insted of the 35 but it turns out that the measurement is in the width and not the length like I was informed. I am trying one now but fear that it will not give me the results that I had hoped for.
I need to find a way to prevent twisting, especially on that flight.
I slept 5 hours last night but that may have been too long because I couldn't intubate upon waking at 4am.
I have to try to do it every 3 hours max or I just can't get past the pressure!
I will let you all know what happens, but do you think that a parachute is a valid fashion accesory for the flight????
Keep that encouragement coming....It feels so good to no longer be alone out here.
Sharon

Hi Sharon
Nice photo.
Why can't you just put a tube in and leave it in with a foley bag like Chris does and Dr Fazio does when he sends patients home?
You need the face plate, belt and a baby bottle nipple, waters catheter.
I never sent the stuff becasue I wasn't sure where you would be.
Air Canada had a flight when I looked for you last week for $900. Just do one way. The airlines should be able to provide wheelchair service on both ends. Chris always had one. Just request it.
Or, go to the et nurse there and get some ostomy bags and leave your tube in and put the ostomy bag over it for the flight. Just suggestions.

Sharon,
Just wanted to wish you luck when you get here. I am sure Rena will work wonders and get some quick O/R time for Dr Cohen so he can get you fixed up in no time.
We'll be thinking of you next week and hope for good news for you!
Nicole

I also suggest leaving the tube in until you see Dr. Cohen. If you don't have a bag t connect the catheter to than clamp it until you need to empty.

I wish you lots of luck. I hope Dr. Cohen has the answers for you.