This week I've had the opportunity to speak with several different people in order to help me along with my decision to go on the transplant list.
First was my very supportive husband Gord. We've had some very long, intense and emotional talks this past week. Married for 33 years, I have never known him to open up the way he has these past few days. Whatever I decide, he will support me 150%.
Secondly, after exercise class on Thursday, I met with a gentleman who attends my maintenance exercise group. Karen, who is the physiotherapist, arranged the meeting and set it up for us to have an office so we could speak in private (I haven't told a lot of people in my group yet about the transplant as I wanted to wait until I was on the list).
He is 72, was on 14 litres of oxygen and hadn't even completed the pre-assessment when they put him at the top of the list. He was put into the hospital March 20 and he got his new lungs April 4. After the surgery, the doctors told him he had only about eight weeks left to live.
This man looks fabulous! He couldn't say enough about the Transplant Team and the care he received at Toronto General. On Friday, I had a telephone interview with Tara, the Psychiatric Nurse at TGH. We talked about a lot of things; my anxiety being the main topic. She explained how the body copes with anxiety and how it can’t cope as well with it when one has a debilitating disease. Everything the body has is being used to help you breathe so it can’t cope as well. She said this chemical imbalance can be controlled with medication and she made a promise to me if I were to try these meds that I would feel less anxious.
We also talked about the darker side of this whole process (death before or after transplant) and the support that is available.
I felt pretty good after speaking with her as she was very easy to talk to, had a great sense of humour and she totally understood my fears.
I was also put in touch with a mentor who I spoke to briefly on Monday. She invited me to her home in Toronto on Saturday morning. We met and spoke for over two hours. This lady is in her mid sixties and she had her transplant two years ago. She was on the list for seven months when she got her lungs. She did have a false alarm (which I’m told is quite common) and she was totally scared to death, however she felt it prepared her for the actual event. In her case the first set of lungs were just not good enough.
I asked her so many questions and she was so easy to talk to that I felt I knew her all my life. She still attends the support group that is held every Wednesday and she encouraged me and Gord to join.
Since Saturday Gord and I have done more talking and I have done more soul searching. I also discussed my fears with some close friends which has helped. This decision is a very difficult one to make but I think I’m very close now.
Sorry to be so long winded but I didn’t want to leave anything out.
Post by deltagirl on Sept 28, 2009 13:45:18 GMT -5
I am so impressed with all the support and information you have been accumulating this week on your journey to making your transplant decision. I am scheduled myself to begin evaluation next week at BC Transplant and can only hope to receive as good treatment as you seem to be getting. As for my own decision, well something that seemed to come out of the pages of a sci-fi novel when first mentioned to me a few years ago now feels to me more like the medical miracle it actually is and I think that if given the opportunity I will jump at the chance to have a transplant. Of course, I, like you, don't know what my reaction will be until the time comes, do I ? Keep up your searching and pondering. You will make the right decision soon enough. Take care.
I am glad you are carefully weighing your decisions. It is so good that you can talk to all these different people and get their views on the subject. The only thing I got, was my specialist asking me if I wanted to go on the list. That's it. No talking to other people, nothing.
Post by Blossom/Jackie W. on Sept 28, 2009 18:29:11 GMT -5
I read awhile ago your message here and I stopped so I could "ponder". And then I read Zoom's.
Let me start with you if I may......
First.... heck lady... you weren't "long winded" though I run the risk of running off at the mouth here myself !
I was so happy to read how they dealt with your concerns (TGH) and the wonderful reception you got from a mentor and nurse!!! Even the fact that you were "looking" for more info etc and the reception you got, I think speaks volumes I'm sure for you and the program! You were able to get into it!
And; I could also understand in a minor way, (nothing compared to you) ... the plight of you and your hubby....... the tears, the talks, the "e'thing" must be overwhelming!!!!
If I may be so bold, and I CAN'T compare to what you two are experiencing... but; I do remember some things. Dave had said to me before my going ahead (maybe the deciding factor) of my cancer surgery.... he said... "Mom I'm selfish; I want you around for as long as I can have you...." It was however a Lonnnnng process, for me, getting to that point even with my kids included. You are faced with something even beyond that..... I can't imagine!
I got ready; mentally and physically after weighing things out. This; I think my friend, is what you're doing. The sensible thing... weighing things out.
Personally; I think you've made a decision already...... but no matter what it is ... it's NOT a minor thing and you are being so dang smart about it! Yours is not a decision easily made......
I/we love you Toni; no matter what you decide. Your family here, will stay here and we be here for as long as you want!
From my/our to yours..... get some sleep now O.K.?
Toni, you are really being wise in your search for the answer. It sounds like you have hit all the right people. I can only imagine how difficult it is for your husband and you to discuss this, but he seems like a super guy. I'll say a prayer to the Guy upstairs that you make the right decision. And like was said before, we will be here for you no matte what you decide to do.
Congratulations on passing all your tests. It really sounds like Toronto is a great place to have your TX with all the support you're being given. That would make things so much easier for me. Good luck, Toni.
Toni, I'm streaming tears for you girl. I'm going through the same process with Dr. Hutcheon but haven't yet given him a 'go'. My husband and I talk about it a lot and of course, the kids are involved. We cry, we laugh and we all hold so much to hope. Wherever it comes from, no matter the decisions we make, hope is what feeds the spirit. It's good to hear how TGH is handling this and the support you're being given. Mentoring is probably the best idea I've ever heard of because frankly, we need someone who's been there to talk to and answer the millions of questions we have. Perhaps it should be introduced a little earlier in the process. You can rest easy with the TGH team as they are reputed to be among the best in the world. I don't know which direction I'm going and maybe I won't for a little while. Yeah, I qualify but..... So I just meet with Dr. Hutcheon regularly and he asks me what my current quality of life is and we go from there. I pray that all goes well with you no matter the direction you take and girl, you got chutzpah! Congrats.
Everyone on here is so supportive! It just means so much to me.
Shelley...I knew you were seeing Dr Hutcheon however I had no idea you were wrestling with this as well. Anytime you'd like to meet to talk, let me know and we can set something up.
Wendy...I'll be rooting and praying for you when you have your surgery.
Yesterday I called Toronto General and told my coordinator Cathy, I was ready to sign the papers. I didn't cry or get upset as I spoke to her which amazed me.
She has now made an appointment with a surgeon on Oct 7 and I'll sign the consent at that time. Afterwords we will meet with her to go over the what to dos and where to go when the call comes and also go over how the pager works.
I loved reading your thoughts and what you had to say. It is brave of you. I am glad that you are talking things out, sometimes words can make us think even harder about things...rather than just researching and thinking about them.
I am glad things are moving along for ya. You seem to have a such a great support system that you will be able to lean on and take advantage of.
Toni, it is a hard decision and it sounds like they have quite the support group for you, it is fantastic all the help that is available. I took me almost a year to make the decision. It is not an easy process and I also had 2 nodules that had to be checked in 6 months to see if they were growing so I had time but still needed a little more to get my head around everything. I started the process in December and was listed at the end of October, so it was a while. Best of luck to you and your in my prayers.
Toni, the staff at TGH are incredible. They will do whatever they can for you to help you thru the process no matter what you choose to do. There is a support group that meets every week, but some of the best support is found in the treadmill room with others waiting and going thru the same thing. Lionel and I are both thankfull to the staff and all the friends we made here. Our life has been forever changed by our experiences while on this journey. Lionel is doing amazing and hopefully we will be returning home soon. Take care.
I admire you so much, what a soul searching decision you have. But where ever the road takes you, you will always have a wonderful support system with each step you take. What an example Lionel and stargazer are, the love and devotion shines like a bright light. I wish you so much Toni, I wish you peace, and one day to be able to breathe easily, I wish you long walks, and long kisses with Gord, and many many more Tomorrows.