A Caregivers Transplant Journey

[stargazer]

When we arrived in Toronto there was another couple here from Halifax waiting for lungs as well and they were a huge help. They literally met us at the door and helped unload our stuff and made sure our rented van got back to the car rental place. We rented from National Car rental and when they found out why we were renting they were great, giving us a special rate and no mileage.
Our first day here was just an OMG day, look where we are!! Calling family and friends to let them know we were here safe and settling in. The tv/phone guy showed up so we had our internet at least. We still had no tv at this point but it hardly made a difference to us.
Our second day we made our inaugural trip to the hospital to meet with the surgeon, transplant coordinator and physio people. I could still find my way around from the summer so it wasn't quite so strange.
We had a great meeting with the surgeon, he took alot of time answering questions and describing the procedure and making sure we were comfortable with what the future would bring. I found it amazing that a busy surgeon would take that amount of time with us actually getting to know us abit and make us feel so at home. When we were finished there off we went to the transplant coordinator where we got put on "the list". She explained what to do when the pager went off (the pager was here and working when we arrived!) where to go if went off during business hours or after hours. The procedure is that the first call goes to your home phone, then your cell phone and then your pager. You only have an hour to get back to them (the clock starts at the first call home) and if they don't hear from you they go to someone else on the list, so you really don;t want to miss that first call!! The co-ordinator is just that, she runs with the process and makes sure every procedure is followed. She too spent a fair amount of time with us. There are 2 lung transplant co-ordinators here and with 67 on the list and 71 already done this year, they are really busy people. Their job never really ends as they follow you right through the entire process,even scheduling your followup appts in the years following transplant. If you should get ill or have any issues she is the first person you call, if the caregiver has any issues she is also the person to call. It could be that from a caregivers perspective you need medical or dental help, or emotional support...doesn't matter there is a whole team here ready to jump into action to help out.
One of the most important things while waiting for the transplant is to attend physio three times a week. No excuses except an illness get you out of that. We met the physio team that first trip and they set up a routine for us to follow and we started the very next day.
Every Wednesday there is a support group meeting, this is not mandatory but alot of people go. We went to our first one the third day we were here. It was a great meeting and the "Maritimers" all meet afterwards for lunch in the food court of the hospital. In a way I think us "out of towners" are very lucky because we have each other and thats a huge support group in itself. In this apt building where we live there are 2 couples from NS and 2 from NB. Across the street there are another 2 couples from NB. There is another couple that live about 45 min away that are from NS as well. (FYI he had his transplant on Monday)
So now we have a hospital routine of Physio on Mondays, Tuesdays and Thursdays and support meeting on Wednesdays!! Along with these meeting you also have clinic days where you meet with your co-ordinator and then your respirologist as well as blood work etc. No time for being homesick!!
Our second week here we met with the respirologist and cardiologist as follow ups to our August meetings. The respirologist does a quick exam to make sure all is well and then makes sure you understand the risks etc of transplant. He also has to talk to you about what your wishes are if something goes wrong. Thankfully this didn't come as to much of a shock as I had already gone through the DNR process in Halifax and we had seen a lawyer after that experience and drawn up the proper paperwork.
I could probably write another book on all the laughs we have had since we have been here. Truthfully I have laughed more in the last few weeks than in the last few years. I alway said to my hubby as long as we are laughing we are breathing and thats always good!!..The strong friendships already made the knowing that you are not alone and a simple phone will bring help...and knowing that you are sometimes the one answering the call takes away the feeling of uselessness that creeps up every now and then. I know that anyone of the "group" could get a call at any time and the rest of us will make sure the caregiver is not sitting in a waiting room for 10hrs alone.

[shelley]

Your posts are so important to so many of us and I thank you for sharing this journey with us.

[Blossom/Jackie W.]

Kathy; you seem to be handling this experience so very well. The GREATEST thing that I'm reading here is that of the "Support"; not just from the medical community but the others that are in a similar situation.

I think it's wonderful that you're laughing!

[stargazer]

It's hard to believe we have been here for 3 weeks now. Our life seems to revolve around the 4 days we go to the hospital. We had a physio student working with us for the last couple of weeks and she has been a real treasure. She has finished her rotation with us and we are really sad to see her go, she did set up a home exercise program for us for over the Holidays when the rehap program is closed. I went and bought leg weights and hand weights to use and of course there is that long hallway to the elevator!! During our support meeting this week an informal book exchange was set up so we can all exchange books. When we showed up at physio on Friday one of the Ontario caregivers left us a big bag of books!! Another one of the Ontario patients has done an amazing thing for all the out of towners. He and his wife were trying to think of something that they could do to make things easier for those that had to leave there homes and families, they have secured tickets on a regular basis to musicals here in Toronto!! This particular patient is waiting for a double lung transplant and had 2 ("dress rehersal" ) or false alarms a week ago and still he thinks about ways to help others! On a happy note shortly after the support meeting he recieved his call and got his new lungs. Last I heard he was doing very well and we all look forward to seeing him back at meetings.
Next week is Christmas and although we won"t be going home we have decieded not to let Christmas pass us by. There will be Christmas dinner here at our apartment and so far we have 2 couples from New Brunswick and 2 from Nova Scotia joining us. Some of us went out this afternoon and picked up the makings of a big turkey dinner!!
As some of you may have read, Nova Scotia will be providing financial assistance to anyone who must go out of province for medical care, that was wonderful news! It takes off a lot of stress and worry that plays on your mind. Another good news story is about the new procedure undergoing clinical trial here in Toronto. The hope is that it will increase the number of lungs that can be used for transplant. All in all a pretty good week.

[shelley]

Kathy, I'm happy to hear that you'll be getting provincial assistance. I can't even imagine what it must be life for those who come from out of town. Although there are certain programs set up by TGH, there is definately not enough going to really help with everything. Your Christmas plans sound great. It's great that you have other couples to link up with. If at any time you feel like getting out and around let me know as I'm in the GTA area and I have a car. Take care.

[Blossom/Jackie W.]

That was a very kind gesture Shelley.....

And; Kathy..... good for you and Lionel.... staying in the "spirit" of Christmas!