What's going to happen to me?

Thanks for the comments. I have had the "one disease for another" line from one of my doctors. There are two issues then. One is how much time does one tend to offer (on average) than the other, and how tolerable is life with the post-transplant meds and routines?

So your husband had exactly one year without the transplant? Interesting. Dang I wish this decision was a bit easier for me and my wife.

Speaking of wife, I am also in need of information on caregiving. It sounds like a pretty awful thing to do to my wife, although I hear Hospice and Palliative care helps a lot. But I have little to go on with that. I will be seeing a palliative care doctor soon though.

Once again, thanks very much for responding.

Best,

es

JMJ

Hi Eric,

Hospice and palliative care are wonderful! I was very blessed to have my 3 children  and their spouses take shifts of caring for my husband and I pretty much could not bring myself to leave his side but every once in a while one of my kids would take me out for the day. When the time came hospice provided a care person to come in and shower or bath John.

there is a lot of letting go and coming to terms with how life is changing.

John was able to have complete care at home with two visits to the Hospice Facility and they take care of the wife too! They are truly heaven sent.

for almost 10 months we did all the kids soccer games and went to movies and yes along the way John had to give up driving and use a wheelchair and more oxygen but we made the most of life and were very thankful for our children and their spouses.

the last two months hospice came to the house three to four times a week and they will also come whenever you call them.

hospice will provide a special bed for home as well as a recliner chair that will help you automatically sit and stand up. Hospice will provide a lot of things some I can't remember right now.

I continue to keep you and your family in my heart and prayers.

I hope this helps answer some of your questions.

one thing more we were told that meds taken after transplant can cause more other illnesses and that John would have to have a feeding tube placed for the rest of his life. Every case is different though. 

All my best for you!

 

Wonderful response. Thank you thank you.

I will process this. Nice heads up on feeding tube bit as that have been testing my esophagus and esophageal sphincter and all quite a bit. Freaky.

Take care, and thanks again.

es

Hi Eric,

This is Cheryl again.  Just checking in to see how you are doing.  I'm still status quo, but I'll tell you something.....it's like waiting for the other shoe to drop.  You know that it's a progressive disease, but never know when it's going to take a nose dive.  Also, there is someone by the name of "Joe" who is on another area of this forum, and he has had a lung transplantation.  Search for PPFE on this forum.  His entry is the second one from the last.  He had a transplant at Cleveland Clinic three months ago, and I'm sure he could load you up with info!

Best wishes,

Cheryl

Hi. Way sorry I was trying to get bac to you the day you wrote. Two days of stuff and then bang! Rectal bleeding (GI) and am in a hospital one finger typing at last. Colonoscopy in 9 hours and then ???

so kind of not replying to email much but reading it. But will be out of it a good deal tomorrow. 

Es

Take care of first things first, and the GI thing is first at this point. And, You do very well with one finger typing!  Just want to send my best wishes and prayers your way today!  Take care, Cheryl

Hi Cheryl,

It has been 21 days since we corresponded here. The update from me is that after the GI bleed thing, I wasn't home but for a mere eighteen hours before chest pain and another ride to ER. So two cath lab visits and the doctors himing and hawing the second was for a stent. (Four now). So that was a pretty crummy week. On the other hand, I'm still around. I'll take what I can get!

Being on new blood thinners will possibly impact transplant list placement.Oddly that is fine with me. I just don't want to make that decision now - or any time frankly. Part of that is obviously because I am in relatively good health, even with those hospital visits accounted for. 

It appears there may be some important information I am lacking about the transplant thing. My wife read that one hospital told their candidates that they "must" apply for additional funding from charity or crowd-funding. What? Again, being just back and in a communicative frame of mind at last, I'll try to track down the fellow, Joe, you mentioned. 

I have say that I am getting tired of my own problems. I'd like to get into some other study or volunteer work, but the coughing is coming back making talking a hassle for everyone so the recommendation that I visit older people in need of conversation may not happen. Dang. I may pursue this anyway as I am suppose to listen and not talk so much anyway. Quite a challenge!

Regarding YOU, yeah, the limbo thing... It is a kind of familiar place for me anyway. I'm one of those guys that never transitioned from being a "becoming" person to a "being" person. I'd better hurry up. I am very concerned about running up a big medical tab and just being a useless person with a lot of doctor's appointments. I mean, Steven Hawking I am not. This of course leads into a rather deep and dark philosophical realm which you may not be interested in. But of late all of my reading is about death and dying the existence/non-existence of a god, origins of the universe an what not. I am trying to understand the concept of "nothing". I don't think the human brain is wired for that concept, although it appears that Zen is pretty content with the concept. 

Hey, I write a lot too. I guess we will have to make that OK. 

Later,

es

Oh, the cat Mr. Purple says hi. 

Hi Eric,

I've been waiting to see a post from you.  Wow, you've been through the mill, that's for sure!  However, it sounds like you've come a long way, and things are looking good.  A year ago, my husband had a STEMI / Widow's Maker heart attack.  He had the stent thing and thankfully survived the whole episode.

I have read a little about the financial aspects of lung transplantation.  There are so many things to deal with when it comes to that type of complex procedure.  And, I can understand why.  Patient "Joe" posted some great messages on the forum that is all about PPFE.  He had a single lung transplant and offers much information to others.

I totally understand it when you say you are tired of your own problems.  I also feel like that way, but I'm still caught between being fed up and wanting to read the latest and greatest on pulmonary fibrosis, ILD, PPFE, etc.  Then, I get totally overwhelmed just reading all of this stuff, plus, I can get depressed after reading the articles.  And, that philosophical realm that you spoke of -- Oh yes, I too read a fair amount on that subject.  After all, it happens to us all and to all whom we hold so dearly. 

Mr. Purple looks totally contented or blase with the world.  Pretty (handsome) little thing, he is. 

Take good care, and very nice to hear from you,

Cheryl