Today I drank water with cucumber, lots of it. I took 3 fiber pills this morning with the rest of my meds. At lunch I had 2 string cheeses made from skim milk. That seemed to do me until dinner tonight.
I made an omlete out of egg whites in the carton 1/2 cup. Peppers and onions and the rest of the ground turkey w/ taco seasoning we had the other night, and then 1 ounce of grated pepper jack cheese. Then I had 1 whole wheat english muffin sprayed with "you can't believe it's not butter spray."
I actually was stuffed and it was very good. The whole wheat muffins will take some getting used to, but I thought maybe I could make mini pizza's and use those as the crust. We'll see.
I found a couple facebook sites for transplant information and people who have had transplants. I traded phone 3's with a couple woman. One who has had her left lung transplanted, and one that is on the waiting list for a double lung transplant.
I need to write a list of questions. I have so many I don't know where to start?
When I was first diagnosed with Emphsyema I wanted to know all about it. At first it seemed I was most focused with what stage I was in. Then what the life expectancy is.
This seems to be the same type of thing. Not stages... but definately life expectancy. All that I have read concerns me. I know there must be survivors, but hearing the #'s scares the (excuse me) shit out of me.
I want to talk to the woman who had the lung transplant about recovery and what to expect? What can I do to help and what shouldn't I do? Also, about the immunosuppresive drugs that I will need to take the rest of my life? How she deals with the side effects? Do they damage the liver and kidneys?
I want to ask the woman who was already accepted into the program and waiting about the beginning of the process and what to expect. Was the transplant center near her? Or did she have to relocate?
What are the precautions she is living with while waiting for lungs? I am possitive about infections of any kind.. viral or bacterial, no flu or colds. What is she doing to pass the time?
I want to know from both of them how long they have waited?
It's just all so unknown and I think I would feel better if I knew something. Of course, then I go back to the point of ... me jumping the gun and waiting for my file to get to the center and them to send the paperwork to me.
I guess that would be the best thing and in the meantime I could work on my will and the advanced directive.
That is something to sleep on.
5 comments:
Hi Kelly,
I've been following your post and am sorry you are heading for transplant so soon. For a good source try COPD Internation. They have, among others, a message board and chat room specifically for surgical options. One member has just passed the 3rd birthday of his new lungs and is quite an inspriation.
Linda
59yrs; FEV1 24%; o2 while active.
Linda,
Thank you, I'll visit that site. I have to say I feel SO much better after reading answers to all my questions by an actual recipient rather than a board on a hospitals webpage.
You take care too,
Kellie
Hey Kellie!!!
I'm sorry -- I'm not "the woman", but I am someone who has been through what you're facing... And I can easily understand why a lot of what you're reading might scare the shit out of you!!!
I have cystic fibrosis. In April, I celebrated my 10th year post transplant... As you know, from all you've read, that's pretty awesome...
My transplant center was near me -- I did not have to relocate... Most of those rules/policies are dictated by the center you're listing with... Some will allow you to be as much as 2-3 hours away -- though, after transplant they may require you to relocate much nearer to them for a few months...
And yes -- you can plan to be on a number of drugs for the rest of your life... Usually, a reasonably high number. And we learn to adapt / deal with the side effects... Often, we're on additional drugs to deal with the side effects of other drugs! And they can be damaging to your liver and kidneys -- more often to the kidneys... Some of us (me) develop a perfect storm -- toxic drugs cause us to develop diabetes and hypertension which also taxes the kidneys so all that must be controlled too... But, it is all controllable...
Our clinic explained that our transplants do not so much "cure" our disease -- it's more like swapping one disease for another -- you'd be swapping COPD for transplant.
You will learn a lot from your center -- and if they have a lung transplant, or transplant support group, those can be very beneficial... Being around other people waiting, and people newly transplanted, and people out a few years can really put things into perspective -- try to take advantage of that if you can!
And I'm only too happy to answer questions if I can... I have a website (that strongly needs to be updated) about some of my journey at www.ClimbingForKari.org and my email address is also at the bottom of that site...
You hang in there -- I won't lie to you and say that the journey is not, or should not be scary -- but I will tell you that for the vast majority of us, it is so very worthwhile...
Love, Steve
Steve Ferkau
Chicago, IL
Steven,
Thank you for taking the time to write such a nice comment on my blog. Sounds stupid (or maybe not) but it's nice to know I am not wacko for going through these emotions. Both my daughter and my husband go through each day as if nothing is wrong or nothing is looming in front of us.
For a while all I could see was this transplant cloud with very low survival rates. Remind me not to get online to search out information I am not ready to hear.
You and I are about the same age. I am 48.
I am doing my best to just hang back and let this happen at it's own pace. And, most of my apprehension is moving 13 hours away for an unknown period of time to an unknown location, and it could be soon. LoL
How does one prepare for that?
Anyway... Thank you very much for taking the time to stop by. It really does help knowing in those #'s I read that there are those that come out wonderfully on the other side.
Bless you and keep in good health,
Sincerely,
Kellie
Hey You...
It truly doesn't sound stupid -- most people never experience the need to make a decision like this in their lives. Ever. And I'm not sure if it's sad or good when family reacts as if nothing is looming... I don't know if they're in denial, or if it is a position of strength, or if they do not want to get YOU upset by showing their true emotions... It probably makes it difficult to discuss your feelings with them because they don't appear to have any clue what you're approaching... It's good that you have this blog to vent your spleen and throw your fears out there... Think about a few posts on what you want to do with your new lungs too...
I will say that it's not good to look at statistics -- beyond the fact that, right now, it's very much a moving target and moving towards the good -- but I think you are also interpreting some of these statistics from a negative perspective. The idea that around 15% of us don't survive the first year is frightening -- but 85% of us survive and you need to focus on being in that group...
I'm uncertain how you prepare for moving 13 hours away for an unknown period of time -- I was fortunate enough to live 15-30 minutes from my center... But I've known a number of people who had to relocate temprorarily and I know that it can be boring and lonely at times -- but you need to focus on what you're doing already; staying healthy, staying as active as possible, eating right and maintaining a proper weight, and day-by-day you just get through things. It's not forever.
You hang in there, buckaroo... Love, Steve
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