Rough Time

I know it's been a while since I've posted, but this transplant shit is no joke.  My bad stomach got to the point where I was afraid to move around too much for fear of horrendous cramps and crapping myself.  It's been a cocktail of meds, most of which only mildly alleviate the discomfort.  It's been hell.  My emotions have been all over the place. There are days that I feel happy and days when I question why I put myself through this again.  I'm bored, but unable to concentrate on anything.  This is one fucked up ride.  It's funny, because one of my doctors said that I've breezed through this.  Yikes!!  I can't imagine what having a difficult time would be like!

I guess I'll fill you in on what's happening now.  I'm off of all IV's, which is awesome because it's much easier to get around.  It's very freeing to just walk into the bathroom and not have to unplug myself.  It's also weird. I keep forgetting that I'm not hooked up to something.  The big thing now is that I have to prove that I can eat.  This is much easier said than done.  Besides not having an appetite, I have a wicked sore throat.  I tried to eat a baked potato last night and it felt like sandpaper on my throat.  I haven't lost any weight since I've been here, because they kept me on IV nutrition until yesterday. So that sucks!!  If I can't prove that I can eat, they won't discharge me.  I'm stressed out over it! I just want to go home and put this part of this nightmare behind me.  I know that I'm still facing ups and downs, but this part will be over.  It's hard spending weeks in a hospital room. 

Enough of my damn whining!!  So, I'm almost bald now, which means a new wig!  I'm thinking something with that lavender grey color.  I haven't decided on a style yet, but I know my friend Christie will cut a wig to look cute.  Until I'm able to get out into the world, I'll probably wear my brunette wig for a while and really mess with peoples' heads.  I have many hats and bandanas to change up my look often.  I'll be incognito for a while, so no one better be talking shit about me.  LOL!

I'm looking forward to breathing fresh air soon and seeing my family and friends soon.  That's what is keeping me going.

Peace out Peeps!

Two transfusions

Yesterday Consisted of transfusions.  The first one was blood and they used 0 positive (universal donor). The afternoon transfusion were platelets. I have always had a reaction to transfusions so I was pre-medicated with Benadryl. These two transfusions bumped up my numbers so I wasn't as tired yesterday afternoon. The carnage with my stomach has not improved, but I think that I've devoted enough time to that subject...oh except I have lidocane for my sore butt.

Since I got here my bed had this metal pole running the length of the bed.  I never complained about it, until yesterday.  I think my fat ass compressed the memory foam to the brink of demise.  It was waving a white flag of surrender.  I think I heard it weep once or twice.  Anyway, I told my night nurse and she got me a new bed!!!  It felt great to sleep and not feel like my bed was taking advantage of me. Maybe my hiney wasn't sore from diarrhea, hmmm. 

Lee has been working hard to clean and fix up the bedroom.  So far, he has taken down the cornices, ordered and put up curtains, painted the room, bought a new air-conditioner and installed it, put the summer comforter on the bed,  bought me a new pillow and ordered new sheets. PHEW! He's been a very busy boy.  I can't wait to see it!  My environment at home needs to be very clean before they will consider letting me go home.

Many people have asked me when I'm going to be home and my answer is, I have no idea.  I've been here two weeks already and it could be another two to three weeks.  It all depends on when my numbers (blood counts) go up high enough that I won't catch every illness flying around.  I'm shooting for Mother's Day weekend, but that might be a little ambitious. Please feel free to ask me questions.

I have a question for you guys...Where are my cards?  Thanks to my step-son and his wife for sending me funny notes and thanks to my great-nephews and niece for drawing cards for me.  That was my only question. 

Peace out Peeps
PS I'm having baking withdrawal.🍪🍪

Another day, another bout of stomach cramps.

It's been almost a week since the transplant and things haven't changed much.  All my number have been going down, which is good news, but I have to be even more careful about germs than I was before.  My day consists of waking up around 4 AM  to have my vitals taken, labs drawn and weighed.  This is the time that the stomach cramps usually kick in  and the hershey squirts are not far away.  I wait until eight or eight thirty for my day nurse to come in with a dosage cup filled with pills.  This is different from last time because 11 yrs ago many of my meds were given IV, now they are pills.  I guess if I was barfing they would do IV.  I may dose off briefly during this time.  My nurse and I decide on a good time for me to shower.  My care team shows up around 10 AM  and they ask me questions, mostly about my poop, and they listen to my lungs. My care team consists of my day nurse, the bone marrow doctor who is in the rotation this week, a nurse practitioner, some woman in a white lab coat (I haven't figured out who she is yet).  We discuss my plan for the day.  The rest of the day is usually vitals, potty, mouth rinses and sleep.  Some days I have company.

So, Sunday was a really bad day.  The cramping was so severe, that I had to cancel any visitors.  Luckily, the meds made me very tired and I slept most of the day and night.  Saturday was nice. My sister, Marlene and nephew, Jimmy visited me in the morning.  Jimmy picked Marlene up from the airport and came straight here.  There is nothing like family to make a dreary hospital room, home!  Marlene was here yesterday too with Justine.  Oh my gosh, we were laughing hysterically!!  It's amazing how much better you can feel from belly laughing.

I just found out from my day nurse that I need a platelet transfusion today.  This isn't unusual, but I do need to shower early, because I have to be pre-medicated. I have a tendency of getting hives from blood and platelet transfusions.  That's all for now.

Peace out Peeps