Yesterday the Co-coordinator at TGH called to tell me that my angiogram was clear however she still needed Dr Hutcheon to review it. She wanted to know what I weighed (I've lost 32 pounds since I started this journey in March) and I told her.
She then said "So, are you ready to go on the transplant list?" At this point, I burst into tears. I said I didn't know for sure. She then asked if I would like to speak to the Social Worker and I agreed that it would be a good idea.
I called Ursula the Social Worker and she listened to me blubber away and then she asked if I wanted an appointment with the Psychiatric Nurse. I thought that was a good idea so she will set it up. She also asked if I wanted to speak to a Mentor. I said absolutely...I think this is what I really need...to speak to someone who has had a lung transplant.
You see, I've had some doubts all along yet I think they were buried deep inside me. Now we're getting to the hard part and with this decision so huge, I'm finding myself totally overwhelmed. It really came out this week when I got totally stressed over this angiogram.
So now I await the call from the Mentor and we'll go see the psychiatric Nurse once that appointment is set up.
Post by Blossom/Jackie W. on Sept 19, 2009 9:29:59 GMT -5
Toni; I think it's totally understandable what you're feeling and I think you're making the smart moves. A psychiatric nurse and a mentor.
Youve' gotta be experiencing some really heavy duty emotions and reservations. I can only begin to imagine. Talking about a Tx, going through all the testing etc, loosing weight... BUT NOW.....you're down to reality and crunch time! A lot of soul searching I would imagine!
Unfortunately you're the only one that can ultimately make the decision. But; IMHO you're on the right path by doing what you're doing (talking to folks and professionals) and addressing the fears and the 2nd guessing etc.
I'm confident that in the end you'll make the right decision FOR YOU! Whatever it may be. You're not having the Tx right now nor do you have to make that decision at this moment. So; if at all possible try to relax a bit . Stressing and worrying isn't going to change anything except make you "feel" worse. Wait until you've had an opportunity to meet and discuss with these people.
agree with Jackie 100% You are only human . And every time a Dr talks TX to me I lose it the thought scares me to death. I think thats a normal part of it. You are a brave women hang in there you will make the right decision. Bobbi
Post by deltagirl on Sept 19, 2009 13:38:12 GMT -5
I too think what you are experiencing is totally normal and that you are doing the right thing by speaking to the "experts" with regard to having a transplant. It is a huge decision and not to be taken lightly as quite often even a successful transplant does mean exchanging your current medical problems for new ones. Get all the information you can and give it a good hard think. The decision doesn't have to be made today. You are a strong, intelligent woman and will make whatever choice is right for YOU when the time is right. Keep up the good work!!
Toni I have to tell you I have had the same thoughts and fears as you have. we go through this and know it "might" happen, but when they say it's a go, well that takes on a whole new reality check, huh?................................I'm with Bobbi and my doc has tried to get me to look into TX for years....I finally got so limited and knew something had to happen that I agreed with the doc and started the procedure/testing for the LVRS (I opted out for Tx myself)....it's still a big decision and you know the dangers and reality of that.....with both our decisions, the surgery itself is a huge thing and then the weeks/months after...it will be a tough road to travel you should be sure it's the way for you to go.....I am a true believer that if our mind thinks it will work, by golly it will (usually )....and I believe you went through a reality check and once that has sunk in, you will be fine......heck you would not have gone through what you have already if you didn't think you could get better, and you CAN!
I don't say things so well all the time but didn't want you to think anything was wrong with your reaction.....and I know you have the inner strength to make the right choice for you...... we will all be with you in spirit whatever you decide to do..... (((((HUGS)))))
You are such a strong Lady, like everyonbe said it is totally your decison, and you will make the right one. I think if you were not scared that would be something to be concerned about. But talking to someone who had a TX, and the nurse will calm your fears. I love you and wish you the best . (((((((((((Huggles))))))))))) Linndie
Toni, you have gone through so much already. And you wondered if you'd be able to do some of it, and you did it. You are a very courageous lady! I can understand the hesitation, however. I'd guess I'd get on the list, and then decide when I got the call. This gives you the opportunity but leaves the ultimate decision down to the time. I read online of one person who did that and wasn't ready to make the big step with his first call. On his second, he was ready. Obviously it is ultimately up to you. Just know that whatever choice you make we are all here for you. A little prayer just went up to the Big Guy, BTW. He's watching over you.
PS, congratulations on the weight loss. That's a toughie in it's self!
...to speak to someone who has had a lung transplant.
I have keep this on my computer since 03-2007. In case I was ever in the possion like yourself and neaded some inspiration to go through with it.
Professor Dame Julia M. Polak, M.D. is Professor of Endocrine Pathology at Imperial College London, where she studies tissue engineering in the Division of Investigative Science. She is the founder and director of the Tissue Engineering and Regenerative Medicine Center there and her work centers on finding ways to grow lung and bone tissue to provide alternates to transplantation. The leader in her field, Professor Polak is Editor of the Tissue Engineering journal and advisor to both the MRC Stem Cell Bank Liaison and the Science and Parliament Committees. For her services to medicine, she was created Dame Commander and her work has been recognized by the Society for Endocrinology, the International Academy of Pathology and Association of Clinical Pathologists.
In 1995, Dame Polak had a double heart and lung transplant