Tuesday, March 20, 2018

How I'm doing

When i first found out that I needed a 2nd transplant, I may have been in shock.  Not as bad as the first time, because I wasn't totally surprised...just pissed.  Someone recently said to me that lightning isn't supposed to strike the same place twice, but it did! I've also been asked if it's easier this time because I know what to expect?  The answer to that question is yes and no.  It's easier in the sense that I don't have the fear of the unknown.  I have a general idea of what's to come.  It's harder, because I know what is coming.  I vividly recall the loneliness and  missing my family and friends.  I missed seeing people. I missed fresh air and wind.  I missed my freedom.  It sucked depending on other people for everything.  It sucked pooping and peeing in a "hat"  and having to call a nurse every time nature called.  The other question is, are you scared?  Yes, I'm very scared, all the time.

So, the most annoying thing that has happened was when I called my nurse practitioner and she told me that they would like me to stay at Hope Lodge for my 100 days.  For those of you who don't know, the first 100 days after transplant are critical.  That is when the body is, hopefully, engrafting or changing over to the new healthy cells.  That's also the time that Graft Verses Host Disease (GVHD) may rear its ugly head. GVHD is when the new cells and old cells are kind of fighting with each other.  It can happen anytime, but that is the bad time, because the blood is all f'ed up.  That is the best way I can explain it in layman's terms.  Anyway, when I had my first transplant, I came home after 5 weeks.  We initially had to go to Boston twice a week and then it lessened as time went on.  This time they want me closer and they want me to have a caregiver.  Okay, I don't know anyone who can take that amount of time off from work and I'm not loving the idea of a stranger.  This news sent me into a tailspin.  I broke down and I felt completely overwhelmed.  I was ready to change hospitals and Lee was bugging me to get a second opinion.  I spent the next two days being depressed and fed up with all the bullshit.  Finally, I discovered coffee filter flowers.  Making them pulled me out of my funk. I spent two days dying and making flowers. I cleared my head and stopped crying. I needed to make some decisions.  I called some friends and I spoke to my Danbury doctor and got the names of some physicians for a second opinion.  I researched all the doctors and found one at Yale that I thought would be good.  I called and they won't even set up an appointment until I have my records sent to them so I called Boston for my records.  I received a call today from Boston and they want me to tell them exactly what records I want.  How the hell am I supposed to know what records a doctor needs for a second opinion!!!  I don't have an MD after my name!!  I might as well after all this shit.  So for now, I'm just trying to send back a release even though I don't know what to release.  Could everyone make this crap any more difficult? 

As it all stands now, I'm sticking with Mass General and I may or may not get a second opinion. PHEW!! I'll talk to the social worker about Hope Lodge and what kind of arrangements can be made.  I'm keeping an open mind while also reminding myself that it's my life and I have a say in how this all pans out. I should know more about a bone marrow match in the next ten days or so.  Until then, I will try to get myself organized for my extended Boston stay.
One more quick note.  I received a response to my letter to the President of Danbury Hospital.  The letter was from the Patient Relations Coordinator and "The issues and concerns you have shared have been forwarded to the Quality Department and appropriate department leaders for review".  It was a very politically correct response, but I was quite impressed that there was a response at all.  Also, my Danbury doctor called and said he owed me a call and I promptly told him I called a month ago.  So the good news is, my letter was read and some action was taken. My fingers are crossed that they fix the TVs in the infusion area also!! 



3 comments:

  1. You're in my thoughts and heart, Mary. <3

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  2. I am so in awe of how you are doing this. So many of us, your many friends, are with you and want this to go smoothly for you.💕

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  3. Your wit is truly your weapon Mary...keep your mind entertained and there will be nothing to stand in your way..you are an inspiration. Sending healing and loving thoughts your way always...oh and I will drop off some of those 2 sided puzzles to keep you annoyingly "entertained."

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