July 30, 2014 - 50th trip to Mayo

Yes, this was trip number 50 in 8 years.  Wow, this journey started 8 years ago and a lot has happened in that time.

We went out to dinner Sunday night with Sr. Pat, she really is an interesting person and we all had a wonderful time.  We went to Whiskey Creek and had a good meal with a lot of good conversation, Sr. Pat has some amazing stories of the things she has done in her life.

Monday was a typical Mayo visit, test, test and more tests and then a biopsy.  We, well ok just Margaret, was on the Mayo diet on Monday, first meal of the day at 5:00 PM.  I was able to sneak out during her biopsy and get a quick bite.  The one interesting thing was that there were very few people there, patients wise.  We walked into Charlton for blood work at 7:00 AM (we were able to sleep in) and normally the line would have been out the door at 7:00 AM on Mondays.   This time there was no line, very odd.  The rest of the test all seemed normal as far as wait times until we got to the biopsy, as soon as we checked in they called her to go back and do the prep stuff for the biopsy.  The whole biopsy experience only took about 3 hours, very quick for something that normally takes about 5 hours.  For Margaret they have to go in through the groin and the recuperation / “let’s watch her” time is longer than if they were able to go in through the neck.

She did have a pain in her arm, good thing it wasn’t in her neck or places lower.  They did an ultrasound which was very cool and it took about 1 hour, the tech and the intern couldn’t find anything so they brought in the radiologist and he found the ‘thing’.  Apparently it is a small mass in the arm which when pressed pushes up against a nerve causing pain.  It is nothing to be concerned about and should go away on its own.  My take on it is that it is a deep ‘pimple like thing’ that when pushed makes the nerve cranky.  Bottom line, leave it alone and it should go away, it just concerned us that they called it ‘fat necrosis’ but that is just the medical term and do not get concerned about the whole necrosis thing as we did at first.  Hmm, fat death, didn’t know you could do that.

Now on to the visit with transplant....  Most of the ‘stuff’ is normal except she has a rejection level of 1R.  What, you say, a rejection of 1R, well to be fair they do not have all the detail results in so we do not know how many of the samples (they take 4) are 1R and even a 1R does not shake up transplant much.  Actually they told us that they would are happy it it was always a 1R, (0 would be better) and they can live with a 1R.  They are also going to get more info on what kind of cells were creating the 1R.  Apparently there are good cells that can cause what look like rejection, something called regulatory cells which are good.  We just keep learning more and more.  If they are regulatory cells then no one cares at all.  They were a little concerned about her EBV counts going up.  EBV is the thing that mutated and turned in to the lymphoma and this is causing a concern for transplant (more on this later).

On to hematology, her Free Light Chain (FLC) numbers were cut in half!  Yippee!!  This is one of the markers for amyloidosis.  As my notes say, the bottom line, hematology is happy.  We then talked about the EBV counts (known as EBV copies) going up and that transplant has their undies all bunched up over it.  He really didn’t think it was an issue and was more concerned over the 1R.

This made for an interesting issue, transplant is not concerned about what they know about, the 1R rejection and is concerned about the EBV copies which is not their area.  Hematology is not concerned about the EBV copies (their area) but is concerned over the 1R, which is not there area of expertise.  So bottom line is that nobody is concerned about what they know about but is concerned about others areas of expertise.  Apparently this happens in the medical world just like the ‘real world’. 

We did get more info from hematology as a follow up with the whole EBV copies thing and its relationship with lymphoma.  Our amyloid hematologist talked the lymphoma hematologist and the bottom line is if the lymphoma was going to come back it would have come back by now.  Also her EBV copies would have to be 2 – 3 times higher than they are now and even then, the correlation between EBV counts and lymphoma is shaky at best.  This all assumes that you have had the lymphoma already.

That’s all I got for now, thanks for stopping by.

Mayo Clinic May 28th and 29th

Sorry for the delay in posting.  There were technical difficulties.  Amy and I went to Mayo Clinic last week.  My heart biopsy was a 1R in 2 of 4 samples.  That is considered a resolving rejection, which is good.  They changed my anti-rejection meds yet again.  I'll send Mayo blood every 10 days for awhile, but I don't have to go back for 2 months.  Hopefully, the rejection will clear up by then.  It was too soon to have a Hematology check-up.  Thanks for checking in.
Margaret

May 10th, 2014 - Our recent visit up north

Well we got back late yesterday from a yearly checkup and have news, some good, some not so good.

First the good news, we met with an endocrinologist and Margaret gets to take a holiday from her anti-osteoporosis medicine!  She actually grew bone.  Now in all fairness, she did not grow a lot of bone but since she was losing it the fact that she now has a little more than before is great news.  The bone loss was mainly caused by the steroids, more on that topic later.

We also met with a dermatologist who found absolutely nothing to worry about.  This is also good news since her anti-rejection meds have a tendency to cause skin cancer.  She has already had a few dug out of her so we consider this good news.

We also met with hematology and most of her blood work was good.  Her FLC (Free Light Chain) numbers went up.  FLC is one of the markers for amyloidosis and this was cause for concern so they are taking her from ¼ dose of Velcade to a ½ dose of Velcade.  She was on a ½ dose before and then they reduced it to ¼ when her numbers were looking good.  He did say he would be ok if transplant says come back in 6 months, a good sign.  Every once in a while we mail Mayo blood so she would not be ignored.

Also had a meeting with transplant and most of her blood work was good from their perspective, they were saying that depending on the results of her cardiac biopsy we would probably be back in 6 months.  Well, that will not be the case, she had a grade 2R rejection level.  Huh, what the heck does that mean you ask, good question.  It gets a little complicated, basically there are 4 levels of rejection 0 (none) – 3R (not good) and then to complicate it a little there are two type of rejection.  We will call one type ‘normal’ rejection and the other is antibody rejection (bad kind, nobody wants this), she has a 'normal' 2R rejection.  She has had this before and they just upped her meds and that took care of it.  The second time you get a 2R it gets more fun, what is considered fun, try 1000 mg (that would be a one followed by three zeroes, sadly no typo here) of prednisone IV for three days in a row, oh boy!  Well we got a little lucky (just making lemon aid here), on Wednesday she got the 1000 mg and then transplant consulted with her PTLD hematologist and they agreed to just 500mg for Thursday and Friday because her EBV (Epstein–Barr virus) numbers were up and there is always a concern that the PTLD may come back, but for now her numbers are too low for that to happen.  So she had 2000 mg of prednisone in three days, no matter how you look at it that is a boat load of prednisone.  The rest of the cardiac numbers were just fine, her ejection fraction (EF) was good, angiogram was good, right atrial pressure was good and her echo was good.

Also her QRS duration was a little longer (...each P wave is followed by a QRS, blah blah blah) but that may be because of the rejection, if you want to know about QRS durations, Google it and you   have way to much time on your hands.  The increased QRS durations may be caused by a bundle branch block which she has, as do most heart transplant patients. She will be going back in two weeks and have another biopsy, echo and ECG (previously called EKG).

Overall this is not totally horrible,  it can be managed with medication, the tricky part is finding the right level of the right meds.  That appears to be a little tricky.

It just occurred to me that we are way to comfortable with all the medical acronyms, PTLD, EBV, CMV, M-Spike, SOB (hey, it means shortness of breath), FLC, AFIB, SCT, VGPR, BNP, etc...

We did run into Kendon and his family, they are doing well.  We did not get a chance to see Sister Pat, she was working.

That is all I got.  Thanks!

It's April 11th Again

Hi,
It's April 11th again. Today is the 3rd anniversary of my heart transplant.  If I ponder it, it is still so weird that this is not the heart I was born with (that's in a sealed bag in a sealed bucket somewhere at Mayo Clinic.  I can see it whenever I want.  Once was enough.)
I have the 4 day anniversary check-up next month.  For now, I feel good.  The gallon of blood I sent to Mayo at the end of February yeilded stable results so I am not expecting surprises in May (of course, I never expect surprises).
The plan is for all 3 issues to be stable; heart, lymphoma remission and amyloidosis.  I've been on the low dose chemo (for amyloidosis) for 18 months now and will see if they change that or not.
Hoping this will be a stable year with fewer trips to Mayo Clinic (and docs in general).  In 2012-9 Mayo trips.  In 2013-6 Mayo trips.  May 2014 will only be my second trip to Mayo this year (a good trend).
Thank you all for your prayers and support.  We couldn't have done it without you.  Please remember my donor family in your prayers.   Be well.

The First Spa Trip of 2014

Surprise!  It's Margaret.  Well, it wasn't quite cold enough for us in IL, so Amy took me to MN (Mayo Clinic) on Sunday, January 5th.  We had good news! My heart has 'zero rejection'.  The C4D test which scared everyone with a faint positive in November was negative.  This confirms that I am not making donor specific antibodies, which would be very bad to make.  My echocardiogram was unchanged.  This is all very good news.

Not quite as good, my amyloidosis marker (Free Light Chain blood test) went up instead of down.  I will send Mayo blood to retest in 6 weeks.  In November, they reduced the frequency of the chemo, so we'll put it back to the old frequency if the number continues to rise.  Not good, but not a serious problem.

I don't have to go back to the spa till my 3rd annual check-up in April or May.  That's huge! I've been there 47 times since 2006.  And soon they will stop doing heart biopsies.  I've had 15 and they take 5 'bites' of my heart each time.  (Gross, right?)  This biopsy, the happy drugs must have been lighter than usual, cause I was fully aware every minute.  I could have handed the guy things.

I'm trying a new B/P med.  The previous one gave me dry mouth so bad it woke me all night long.  And since I haven't slept well since transplant, I am exhausted.  We'll see how the new one goes.

It was a quick trip (back Tuesday night) but Amy and I had many laughs.  I really missed her when she spent 4 months in LA last year.

Stay warm and well.  Margaret

December 4, 2013 – News from the North

Good evening Mr. and Mrs. America, from border to border and coast to coast and all the ships at sea.  Let’s go to press.  (Thank you Walter Winchell).  News Flash, we heard from Mayo today, Margaret does not have AMR (Antigen Mediated Rejection), this is a good thing!!  This means that she just has a plain old boring rejection level of 1R, been there (and worse) before.  We are all VERY pleased that it turned out not to be AMR even though we were not sure how they would have handled it if it was AMR. 

Other news, her sirolimus target level (antirejection med) is 8 - 10, hers was, well not as high as the Gonda building but close it was 18.  Gonda is a 20 story Mayo building, yes, yes, I know who would know that, well apparently I do and so does almost anyone who has spent much time at Mayo.  That is way too high, so she is lowering the amount of sirolimus she is taking and will check her levels in the near future.

That is the only update I have for now, thanks for stopping by!