Well folks, it has been a long while since I have been to this thread.
It was suggested I update it and I think it is a good idea.
The past year I have been dealing with support and finances and such, much with help of dear Jackie.
I did get that sorted out and three months ago had to get a contract signed for support and the bank. I think it is ridiculous and so did my social worker. It really was a fiasco. I believe things were in order for a while and they were stalling.
If I am wrong, then I will stand corrected. I have been totally stressed but not letting it play with my emotions too much.
So, more tests were done...endoscopy, barium swallow, and gallbladder scan. The barium swallow was a new addition to the tx testing that they just started this year.
I received a call from the nurse, Kevin. He said that the finance coordinator at Penn was working with the insurance to get it approved. He said to fax the reports from the GI dr. I did.
Today he again called and the insurance wants me to fax the recent mammo and pap. Also, they want me to have more ekg, echo, ct scan, HIV, and more blood screenings. I had all these tests done, but now it seems there may be a small battle with the insurance. So, Kevin will set up a date to have these tests done within two weeks. Guess I don't get to schedule them..
My first financial meeting I was told the insurance covered the surgeon, surgery, hosp., and all the scripts. I hope that hasn't changed.
So folks I have made some strides with help here, and now it is a small wait for the big wait.
sorry it's been such a struggle...sometimes I think this is the test to see if you can handle it....you make it through all the crap they throw at you and you can go ahead...... Hang in there hon, sounds like you really may be at the end of your rope on this long wait........ And thanks for letting us know!
Aero; Been following your journey as much as I can and hope you will soon be on the list. I will be watching more closely as it does seem to be falling together. Hope no snags upcoming. Sorry you have to redo so much.
If you start to stress over it, maybe think of this picture and smile.
Aero, I'm so sorry that they seem to be mucking you about, they just don't seem to realize how urgent and important it is. I'm having the same problem here in Spain with a possible LVRS. I went to one hospital and saw the pulmonary surgeons and they sent me off to have a nuclear scan and echo nearer home, which I did , and now two weeks ago they rang my nuemologist and told him they were not able to do such an operation and he would have to refer me to a hospital that also does lung transplants for the surgical team. So back to starting point again. Yes, it's so frustrating. Let's hope, (to put it crudly) that they all take their fingers out ! ! !
Post by Blossom/Jackie W. on Jun 16, 2011 7:31:53 GMT -5
Antoinette; thank you for updating us. It's truly appreciated. Hon; by the time you get "officially" listed you'll have earned it and then some! It's been a such a long battle/struggle BUT.... I do believe you're seeing some light now at the end of this long tunnel. And, maybe, just maybe, you'll be rewarded for all the hassle and "testing of you" as Wendy put it, by a very brief "wait time" till "THE" call.
Candle is lit and so many prayers for so many blessings for you. I am sorry you have do deal with all of the paths you have to take to get to the ultimate destination. Some are understandable and desirable, some have been downright unnecessary and more than an inconvenience. I hope this last kink is the final step in them getting it all straightened out. Also hope that you pass all your tests that need doing before they'll place you on the list. Know that you will never be alone, there are so many here that love you and only want to see you breathe with new lungs, healthy and happy.
Thanks for keeping this 'diary'. It will help anyone who's considering the process themselves.
On Nov. 13 at 1:55 p.m. I recieved a call from the on-call transplant nurse from University of Pennsylvania. I was told that there were donor lungs available to me and that they were from someone local. He asked if I wanted them and when to expect me. I said "Where do I go? The main entrance?" So, naturally we hit traffic. I made my calls on the way and sent notes to those I had no number for. Didn't mean to leave anyone out if I did. I was calm, I mean whatever happens happens and I can't change it so I had to accept it. I was admitted and put in a room immediately. I really expected to be waiting longer, but I was in the room by 3:30 and in O.R. by 5. I kept hearing them say they were "on the way down". I was asked the usual...allergic to latex or dye and any problems with anesthesia. I do get very ill with anesthesia.
They explained they were going to give me something to relax me then put some ports in while they waited for the doctor. They strapped one arm down and I had IVs in both arms. They then placed a sheet over my face and had me turn my head to the left. They then placed two catheters in my neck. I was asleep after that. I woke up at 7 and they were by my side and the young man said he had bad news for me. He said that the doctor determined that the lungs were too damaged.
I was amazingly calm. My daughter grabbed my bags and chargers and put them in the truck. I gave big hugs and kisses to my grandson and Lakota. So not much to really tell. I expected to be waiting longer after the prep and the nurse said it would be a really really long wait. Even the nurses taking information in the room were rushing and trying to get me to OR as soon as possible. I wonder if it moves that fast for everyone? Or was it pretty sure that it was going to happen and then the doctor saw something.
I was supposed to get more details today but I haven't gotten them. My neck is so sore and I am really bruised on my hands and wrists. I do have some pain relievers though.
I can't say I am totally disappointed that the lungs were too damaged. I would rather wait for better. Actually, I think it still seems unreal.
I mean I expected a really long wait before the call. I have only waited four months.
The nurse that wheeled me to the parking garage kept telling me that it could be anytime real soon that I get the call and usually within a month. He said (sadly) that around the holidays there is high rate of donors.
I feel for the family now that the excitement is over. I wonder what the donor was like and how the family feels.
Thank you for sharing with us, Antoinette. Such a rush it all seemed to have been, but you sure do seem to have been calm through it all. Like you said, what will be will be. I personally would have been in a panic with the sheet over my face, etc...that must have been some really good relaxant that they gave you! That makes me feel better as I know I couldn't have handled the anxiety otherwise.
I understand and agree that it is better to wait for a better suited donation, but still, would be disappointed to have gone through this for no outcome. Yet I guess there is an outcome as you now know what to expect and how things will go in the future. I thought the same thing as you did about the family of the donor. It would be hard enough to lose a loved one and then to not be able to donate as was wished would be difficult, too. I will say prayers for them in their time of loss and sorrow.
Hopefully the wait won't be too long for the next try. And hopefully this has prepared your daughter and grandson and Grady for the future better, too. So much!!!! Sleep well tonight and dream good dreams. I will be dreaming for you, too.
Post by Blossom/Jackie W. on Nov 15, 2011 7:26:42 GMT -5
Antoinettte; I marvel at your calmness but I guess like you said "whatever happens, happens and you can't change it."
You'll get your call and the lungs will be good and you'll wake up and they'll tell you the surgery was a success and. and, and..... It'll happen!
I don't know about how fast these things go but I suspect that in this case becasue the lungs were "local" (the donor may have been perhaps in the same hospital as you) they really didn't have to wait for them. But; I really don't know how these things work.
I hope you're feeling better and the prep discomfort has passed .......
Thank you for sharing with all of us and you'll remian in our positive thoughts and prayers. We'll continue to wait with you.....
They told me all those things needed done yearly so some may have been past a year. Relax it wont be long now. And Ive never been able to handle my own apts they do it and tell me when its to be. I think its silly would be easier to do it yourself. Good luck stay well....We are all pulling for you. Bobbi
Antionette, thank you for sharing your journey with us. It seems the hardest part is getting approved to be on the list. After that it's a waiting time. One bonus with your call, you now know what to expect and won't be quite as stressed about it, also your family now knows the drill. Almost like false labour. I'm sure you will get another call soon, as the nurse said unfortunately there are a lot of deaths around the holidays, meaning on the good side a lot of organs will become available. I hope your neck, arms and hands are healing well. Also that you have had time to digest what has happened and are able to fine tune what you may be able to do easier when the next call comes. You are a remarkably strong woman and very logical in your approch to life, able to remain calm and in control when you need to. Wishing you the best and keeping you in my thoughts and prayers.