November 21, 2013 – Day 955, Our Latest Visit

Ok, I admit it, it is day 955 if Bill Gates got the whole DateDiff algorithm right.  I did not manually calculate the number of days.

We got back from our latest visit late last night. We had a number of doctor visits, even a new one.  I kid Margaret that we have seen someone in every –ologist there is, now we may have.  She would still point out that we have not seen a sociologist so I guess I am wrong, who would have guessed.

Anyway we met with a rheumatologist, she has a swollen knuckle and it has become an issue.  The bottom line is that she got a shot of cortisone into the knuckle and we will wait and see if it works.

We also met with hematology and the results are good, her Free Light Chain numbers are down.  Yippe!  Her M-Spike is also lower and her Alk Phos is now in the normal range.  What all this means to most people is again Yippe!  Things are getting back to “normal”, whatever that is these days.  The doc’s final words were “We are in good shape here”.  Technically his last word were probably goodbye but I am granting myself some literary license here.

We also had an appointment with Dermatology for her skin issue from last visit.  It turned out to be another basal cell carcinoma, we actually knew that before the visit.  It was a simple removal, just one scoop got it all.  Now for an odd part, normally if you get stiches here you have to go back to have them removed.  Mayo trusts me with a suture removal kit and I get to remove them early next week.  I am thinking about billing insurance for the visit to my office to have the stitches removed, perhaps which would be a bad idea.

We also had our standard visits with transplant and here is where it gets a little interesting.  On the initial visit which we need to have before the biopsy, I think they need to verify that you can stand up.  Everything went well, Margaret did mention that her blood pressure was always normal at the doctor’s office but at home it was always high.  The simple solution is to get a new blood pressure machine for home.  Simple solution, I hope that is all it takes.  At that point they said that if we got a good biopsy then the next visits could be in 6 months.  My Mom used to say, “Man plans and God laughs”.  Her biopsy had a little problem, most of the issues are not worth talking about as the biopsy samples were handled a little incorrectly.  But using another method to test the biopsy samples show a rejection level of 1R.  Not a big issue, been there before BUT this MAY be a caused by anitgens that are attacking the heart as opposed to just white blood cells.  Anitgens can be a bigger issue but it is still a level 1R (the scale for all you non-cardiac transplant patients is 0, 1R, 2R, 3R, 3R, lower is better, 3R means time in the hospital).  We were given this info on Wednesday and we will be sent a kit home for a test to be done next Thursday and sent back to Mayo.  We asked if we could have them done there since we were there (seemed logical to me) but they said next Thursday was fine.  This actually makes me feel better as there does not seem to be anyone at Mayo getting their undies all bunched up over this.  Until they get all the tests done they will not have a plan, at this point the chances of it being antigen are the same as it not being antigen.  The initial test was a little positive, how about that for precision!  After my query I was informed this no, it is not like being a little pregnant. Who knew I could be a bit of a smart alec.  Hey, put your hands down please. Anyway, if it is antigens then we will be going back in December, otherwise we can wait until January, so much for a 6 month vacation from Rochester.  We keep trying to have appointments the same days as Mike and Diane but have only been able to arrange it once due to the whole PTLD thing threw us off schedule.  Maybe now we will be able to be in sync with you guys if we go back every month! (Make lemonaid, make lemonaid...) Mike had a heart transplant 10 days after Margaret.

 On a better note we had dinner with Sister Pat on Sunday night.  Sister Pat used to work at the transplant house and we like her a lot.  She has since quit the transplant house and is working at the Convent.  She is a very interesting person and I don’t think she would like it if we put personal information about her here.  It will have to suffice to say she is a VERY interesting person.

Today it appears that Margaret has something like the flu, let's just say things are coming out both ends.  I called transplant at Mayo to see what we do if she can not keep her meds down and they said 3 people were admitted to the hospital today with similar symptoms.  As of now things are slowing down and she was able to keep the nightly meds down, perhaps this is a one day issue. 

I think that is everything from the last visit.

Thanks for checking in!