August 21, 2013 – Our Latest Visit to our Favorite Vacation Spot

We just got back from Mayo.  We were there for a couple of reasons, check on her heart rejection, a hematology checkup and a follow up with dermatology.  We got lucky at the last minute and got into the transplant house.

The results of her latest heart biopsy was…. Ready…. No Rejection!  Everything from cardiology was good and while her Sirolimus level was a little low they are not changing anything, they maybe a little nervous of changing anything now that things seem to be going good again and that they have been mucking around (Hey! Sorry inside joke) with her meds for a while.  The fewer the variables the better.

Now on to hematology (don’t ya just love the suspense).  There are two parts of hematology, the amyloid part and the lymphoma part.  The amyloid doc was on vacation but we ran the blood work and he will call next week.  We were able to check the numbers on the on-line portal and since this is not the first time we have been to the rodeo we know what the numbers mean, STABLE. 

She had a PET scan to check for the lymphoma (PTLD) since she was having issues with her EBV  (Epstein Barr) virus counts were going up (EBV copies)  and it started to raise its ugly head when her suppression was a little goofed. The PET scan results, No signs of lymphoma!   Her AlkPhos is still slightly elevated (comes from the liver) and they are not sure why, could be from a couple of reasons but since it is only slightly over the ‘normal range’ nobody is concerned.

Our visit with dermatology was to check on something on Margaret’s temple that was bothering her.  The doctor didn’t think it was anything but froze it off anyway.  She did notice something near it and took a sample for further review.  It may be another basal cell carcinoma tumor and if it is next time we go they will cut it out.  Basal cell tumors are pretty common in transplant patients and Margaret has already had one previously cut out right before transplant, not a big deal and they are slow growing and not an immediate threat so nobody gets there bowels all tied up in a knot about them if they are caught early.  She does have yearly checks with Mayo dermatology because of this.

On the social side, we met with my college roommate and his wife who were at Mayo for some of their own issues.  We met them for dinner at Dooley’s and had a really good time.  I hope they get some good answers.

Before we left for Mayo we contacted Sister Pat to see if she wanted to go out to dinner.  Sadly she was busy Sunday night but we will ask her again.  Sister Pat worked at the Transplant House while we were there for the transplant and the lymphoma and we both really like her. It will be fun to have a meal with her, hopefully on our next visit.  There are a few nuns from the local convent who work at the transplant house.

Since we were staying at the house we were able to hear the Mennonites sing.  It is my understanding that the Mennonites must do volunteer work and some work at the transplant house and Mayo.  They also sing at both transplant houses the first and third Tuesdays of the month and always sound great.

Random points, for the first time we went to the 20^th floor (top floor) of the Gonda building to see the view. We have been going there for 7 years and have never done that.  Not a big thrill but just something we did.  Also we went to Whiskey Creek (on Broadway toward the WallMart) for dinner, it was our third time there and the final opinion is it is a little pricey for Rochester ~  $60 for dinner for two (no booze) but it is good food and good service! The price may have been caused by me having prime rib, who knows. FYI, I highly recommend the prime rib there!

At this point is sounds like we will probably be going back in 3 months but we need to follow up with transplant to confirm this.

Thanks for checking in!