On Wednesday we went to TGH to meet with the surgeon and to sign the consent papers for transplant.
Didn't sleep a wink the night before and when we left at 6:30am had to battle really bad rush hour traffic. Almost didn't make our 9:00am appointment...more stress I didn't need!
Met with the thoracic surgeon who along with four other surgeons, does the lung transplants. He explained the procedure to us along with all the risks . Those on the transplant list are divided into three. Those who are in Group 3, need both a heart and lungs, Group 2 are those who are the very sickest and Group 1 are those like myself. It doesn't mean that I have to get into Group 2 in order to get the call as it could come at any time. We asked whether or not I would receive one lung or two and he indicated that we won't find out until closer to the actual surgery but if someone only needs one then obviously they would give the other to someone else. We also asked about the size of the lungs and he said that if they try to match someone with the correct size but if they are a bit too big they will trim them to fit! I found that pretty amazing!
He then spoke about the research and clinical trials TGH is doing. I was given three consent forms to sign with respect to the clinical trials. I am to read them over and if I wish to participate, I sign them and give them to my coordinator. I'll do a separate post to explain them later.
Next I signed several consent documents for the surgery and Gord witnessed them. Surprisingly my hand didn't even shake as I signed them.
After our meeting with the surgeon, we met with Cathy my coordinator. She set up my pager which I received by courier several days before. She quickly ran through how it works (since then I've gotten comfortable with how to use it)and then she proceeded to give the instructions on what to do when "The Call" comes. It's a good thing Gord was with me because again there was so much information, I found myself overwhelmed when we left. We were given everything in writing and I've since gone through it. I now have a clinic appointment on Nov 4, an education session on Nov and I meet with the Physiotherapists Oct 15 to set up my schedule.
When we left Cathy, we attended the weekly support meeting (Wednesdays at 11am). My Mentor was there along with several folks who had already received their transplant and two of us who are waiting. The fellow that was waiting was from Newfoundland and he has moved here along with his wife and mother. It was very interesting to hear some of the stories...some good, some bad. Hopefully we will be able to attend more meetings as I feel they can be beneficial.
I guess not sleeping the night before and also having the stress of signing the consent papers lifted because after we left the hospital I slept all the way home in the van.
Now the really hard part...waiting for the call...
Toni I am happy for you......you must feel a huge sense of relief, having gone in and talked about the "details" and then signing and moving forward.......I hope you don't have to wait too long and you feel at peace with it all along (((HUGS)))
Toni I am glad to see that now you have made the decision things are moving along well. It must feel good to be finally taking steps towards improving your health as this disease can certainly make you feel helpless at times. I myself had a meeting this week at BC Transplant with the Nurse Co-ordinator and The Transplant Respirologist. It was very informative and they were both most supportive. We have started the pre-transplant testing as it seems I will be a good candidate as long as nothing unforseen turns up along the way. I am very excited and hopeful for the first time in a long time. Since my blood type is O+ I will probably have a longer wait (if accepted into the program), as this is the most common blood type making for more available organs but also for the largest waiting group. They indicated I will probably wait 18 - 22 months. Trim to fit lungs - one size fits all? - awesome!! (just kidding!) Talk about long-winded! You never are - always full of great info.
Post by Blossom/Jackie W. on Oct 10, 2009 13:48:39 GMT -5
Well Toni.... I think I could feel the weight being lifted. You did all the right things; researched, checked into some additional support etc... You know what? You made an awesome decisionn in that not e'one can face these things to this degree. You weighed it out, with the help of Gord .... you made a choice for you and moved forward. I am so very proud of you Lady.
(I too thought it was neat re: "trim to fit" .)
Happy Thanksgiving Toni......
Deltagirl. I hope you'll share your journey. It's not only intended for those considering it BUT, in time you can print it off and have it for "memories" shall we say
Incidentally; yeahp I know about the blood group thing. o+ I believe is the Universal Donor. They can give to anyone BUT can only accept from their own blood type. I could be wrong but I don't think so.
It's all coming together for you, Toni. I'm not sure how I would handle all that information. It is a good thing you have Gord to help you absorb it all. A recorder would be nice to have along during these appts., although you did say everything was written down for you. Would they call you before you went through your physiotherapy sessions if one became available for you? Do you know how many people are in the Group that you are in (1)?
You are very brave. I wish I was as brave as you are, as a matter of fact. God bless you and be with you as you continue your journey.
Hope everything goes smoothly, seems the hardest part is waiting, you are so brave, deltagirl, wendy everyone deserves nothing but the best, support system is so needed. Your all so brave, i hope one day you can run, and enjoy many many sunsets, and sunrises, and happiness forever
Hi Toni, I'm so glad that you were able to make your decision. I know that you laboured over it, and reseached the possibilities, and now it's just time for things to move forward. My thoughts and prayers are with you and your family, and that you won't have to wait too long.