Yesterday night we got back from our most recent trip to Mayo and we saw a number of people we hadn’t seen in a while. Apparently there was a convergence of schedules from a number of people we haven’t seen in a while.
Ten days after Margaret got her new heart someone else got a new heart. We got to know them while staying in the transplant house together. So it was a lot of fun to find out that they had their checkup the beginning of this week and we were able to visit and eat dinner with Mike and Dianne on Sunday night. They were staying in the ‘old house’, where we stayed together for three months post transplant. We have been wondering how we could not have run into them since then since Margaret and I have been there so much. It was a real trip to be able to meet up with them again.
This past Saturday there was an Amyloidosis Support Group meeting (we never miss them when we are in town) and we found out that a couple who were there were also going to be at Mayo on Monday. It was a very nice treat that our joint schedules allowed us to eat lunch together on Monday. We have known Joe and Colleen for years from the support group meetings and it was fun to see them outside of the support group meetings.
We saw a number of others who we had met in past and it was good to see them all doing well with their transplants.
There was no room in the transplant houses for us but there was room in the Founders House, it was an interesting experience. The Founders House is a separate house that is part of the Gift of Life Transplant house, it has three bed rooms and two bathrooms. It was good to have the experience but I not sure I would want to stay there again. It is an old house, the floors creaked, the doors squeaked and the door knobs were noisy, it made for a good night sleep (catch the sarcasm!) .
On to the medical part of the trip... We were expecting to hear that she would be going on chemo (Velcade and Dex). As it turns out they want to start slow and see if it works so it is just going to be velcade (sub-Q (shots)) and only a half dose of velcade which will all be given locally. This should reduce the side effects being only a half dose and it is wonderful that they are not currently adding Dex (mean nasty beast of a steroid!). She will take velcade by shot every week for four weeks then take a week off, then repeat this cycle. Velcade works pretty quickly so they are expecting results after about three rounds. If this doesn’t work they will boost the chemo until it does start working.
All in all it was a good trip.
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