AML: Mayo Experience

What a strange spring.  Here it is May 2nd and Rochester got 8 inches of snow this morning.  Andy couldn't get the car out of the parking lot and the house shuttles weren't running.  She hitched a ride with a woman who had a large truck, otherwise she would have been snowed in today.  It is still snowing... big, heavy, wet flakes. 

I am still an in-patient at Rochester Methodist.  The mouth sores were pretty bad but the pain meds helped a lot.  Now I am left with what feels like a bad sore throat, which is manageable.  My electrolytes are all messed up so I am getting a lot of magnesium and potassium via IV.  I have also had most of my antibiotics and other meds given IV because I could not swallow the pills.  Today we will work on switching me back to oral meds.  The goal would be to switch me back to outpatient tomorrow. 

There have been a few frustrations during this hospital stay.  Maybe I was spoiled at Sanford Hospital in Sioux Falls, but I sure do miss my Sanford floor 6000 nurses.   There are so many doctors and nurses here at Mayo that there has been a few cases where the left had had no idea what the right was doing.

It's a bit complicated to explain.  Since I was admitted to the hospital through outpatient this time, I have a whole new set of doctors then I had just a few weeks ago when I was admitted through the hematology department.  So we had to go through the whole "getting to know me" phase.  They ran their own tests to find out why my heart rate is a bit high (it's just normal for me).  Pretty much the same thing I did a couple of weeks ago.  In fact, I have not seen any of my original doctor team that started with me on this round of chemo. 

Even the nurses change so often and rarely repeat so I am always retelling my story on pretty much a daily basis.  Sometimes they don't seem to know why I am in here and start asking me all kinds of questions.  Questions I don't feel like answering because it hurts really bad when I talk.  Luckily Mom or Andy have been here to be my voice. 

So the repeating of tests has and all the new faces isn't a huge deal.  Everyone here is quite nice, but because there are so many levels of nurses & doctors involved here (medical, outpatient, hematology, transplant) they seem to get lost in their own shuffle. 

The worst of it was a few days ago when I was admitted.  The doctor there told me my platelet count was 9 and that I would get platelets after being admitted.  But once admitted I got a whole new set of doctors and nurses.  Though we asked multiple times they never gave me the platelets.  The next morning my platelet count was down to 5 (tested at 3am).  It took them until 2pm to actually give me a unit.  In all likelihood, my platelet count had continued to drop.  It got scary because bruises just started appearing all over my body.  I started getting some stomach pain and for all I knew I was bleeding out for the inside. 

Had we not been nagging them so much about platelets I wonder how long it would have taken.   Later the doctor came in and explained that though the notes of my outpatient doctor specified that platelets were needed, no order was submitted and it was overlooked (even though I kept asking the different nurses).  I kind of grilled the doctor about this because the protocol is to transfuse if my platelets are under 15. He said they usually do it if under 10 unless the patient has a history of excessive bleeding.  He never bothered to ask if I did have a history of bleeding, which I do.  Since then we have been playing catch-up and I have had 4 platelet infusions. 

The people here are great, but there are so many moving parts to the Mayo machine.  I miss home and I miss the care I received there.  I have no doubt that the doctors here are among the best there is, but they could sure take a note or two from Sanford Hospital on how to care for the patient.  From the quality of the food to knowing the patients history, I would so much rather be on Sanford 6000 then where I am at today.

This ended up being longer then I though it would.  I'll get results from my biopsy tomorrow and then we will have some real news to tell.  The pain is greatly improved.  Andy is here with me. Mom went home for a few days.  In all, things are progressing well.