Dr visit and Infusion

 Friday was an interesting day.  Lee and I were on our way to Boston for my IVIG infusion and Doctor visit, when we hit snow!!  It was almost a white out at one point and lucky for us the roads stayed fairly clear.  We were on the outskirts of Boston, in the left hand lane, when a snow plow on the opposite side of the barrier, violently threw wet snow on all the cars in our lane.  It was scary!  I am still shocked that there wasn't a major accident.  Stupid head plow driver!

The IVIG infusion is to raise my IgG level, meaning my immune system.  In my 14 years of going through all this nonsense, I've never had a low IgG level.  We suspect it's another side effect of covid, as if diabetes wasn't enough.  What a mofo!!  I did get both vaccines without anything major, other than a backache. Thank goodness. There is a thought that because my immune system is low, my body didn't fight the vaccine, it just accepted it.  Kind of cool.

I was able to see my doctor in person for the first time since October.  He came to the infusion area to see me.  He said that my blood work looked good.  We are hoping that I won't have to do another infusion.  It took us over 3 hours to get to Boston, 4 1/2 hour infusion, (with Lee waiting in the lobby) and then a ride home.  We don't like 11 hour days with traffic. 

I hate my trips to Boston.  They always freak me out, but once I get there my emotions change.  I feel at home there.  I feel safe there.  It always ends up being hard to leave the comfort of being well taken care of.  I know the doctors and nurses.  I even had the same infusion nurse that I had over three years ago before transplant.  It's nothing like the complete cluster F at Danbury Hospital, with the exception of the awesome nurses in Danbury. I will be sharing my Danbury Hospital covid nightmare very soon. 

Our awesome neighbors Lynda and Tom took care of our dog, Sadie, when we went to Boston.  When we got home, there was a very pretty flower arrangement waiting on the coffee table.  How sweet is that!!  They are the same people who made sure we had Thanksgiving dinner after I got out of the bad hospital.  There are some very kind people in this world and we are lucky to know some of them!

Peace out Peeps! 🐥😷

The Never Ending Saga

 Well, my last labs proved to be interesting.  I had the labs done on a Friday and early Saturday morning, I received a call from the transplant floor at Mass General.  That is NEVER good! My blood sugar was over 500 and I could be in crisis.  I was in a tailspin.  The nurse asked if I have a Primary Care doc and I don't.  Then she asked if I have a local oncologist and I don't.  My PC told me that I have to be a new patient even though she knows that I've been under constant care because of transplant.  I can't even get in to see her until July.  If anyone has a really good PC, who wouldn't be afraid of treating me, please let me know.  I make doctors nervous.  What a bunch of babies!!  Anyway, after I had a minor meltdown, Dr Mac (Boston) called me from his private cell phone at home, and calmed me down.  The prednisone is messing me up and causing trouble.  We are trying to lower it and I was put on yet another pill along with a pill for diabetes.  I think I'm up to 17 or so meds every day.  I've also learned how to do the finger pricks twice a day.  I have charts and alarms on my phone just to try and remember all my medications.  PHEW!

On a brighter note, the diabetes was making my vision worse, so that is improving.  Not perfect, but definitely better.  I also put myself on a diabetic diet and I've lost some weight.  WooHoo!  BTW,  so many thing on the Internet about diabetic diets are contradictory.  I'm doing balanced protein, veggies, fruit and whole grains.  I'm sick of chicken...blah! Chicken sucks!

This afternoon I'm getting my vaccine.  I'm nervous.  When I asked Dr Mac about it he said that they've never had a 2 time transplant patient, who had covid, get the shot.  I'm the guinea pig.  Hey, is that a crack about me being Italian?  I'm offended.  I just wanted to jump on the ridiculous band wagon of being offended by everything.  I better stop talking about that now or else it could be a very long rant.

Please keep me in your thoughts this afternoon, that I get through this vaccine easily.  I think I deserve a break, if I do say so myself.

Peace out Peeps 😷

Last virtual visit...meh!

 Oh boy, one step forward and two steps back.  My red blood cells are recovering and my platelets are good.  My IgG, which is my immune system, is in the crapper.  This means that I need an IVIG (gamma globulin) infusion in Boston, but nothing seems to be getting set up.  I've called and emailed a few times, I guess they are working on it.  I asked if a nurse could come here and give me the infusion with a pre-med because I always get hives from stuff like that.  Maybe that's what they are working on. Needless to say, this is making my isolation even more intense and sad.

My eyes are not getting better with the auto serum.  That's only half true.  My reading has improved, but my distance vision is a lot worse.  It's really hard to even watch TV.  Everything is very blurry.  I see (well kind of) my eye doctor on Friday. I hate the idea of going into the office, but something really needs to be done soon.  I would cry, but I actually do not have any tears, so what's the point.  The dry cry is useless.  Oh, and I can't taste most food.

I'm not going to lie, I have good days and bad days.  Things I really enjoy doing, I'm not able to do anymore.  I can't bake, because I don't have enough energy.  Cooking dinner is a damn nightmare, because the heat from the stove and oven make my eyes feel like they are on fire.  I can't go for a walk because the prednisone has given my wobbly legs.  There really isn't a lot I can do these days. Lee does the laundry, dishes, takes care of Sadie and grocery pick up.  I sit on the couch, which is molded to my butt, and it has given up under the constant pressure. I want my life back!!!

On the brighter side, I've been having some fun dipping my toe in the acting pool.  My old friend, Mary Anne, has FloreyMare Productions with The Opening Night Players, has given me a few parts in the new "Pass The Popcorn" virtual comedy.  It will be via zoom on April 2nd and 3rd, 7:00 pm. More details to follow.

One other small note, Moon Moon is thriving and is now working its way into my neck.  I'm just so damned attractive these days, but I will keep my chins up (or just one massive chin).

Peace Out Peeps,😷🙏

Update on recovery

 Hello and Happy New Year!

I'll start with good stuff.  I've been off of oxygen for a little over a week, which is awesome!  Dragging around those tubes and tanks when I went out was getting on my nerves.  I kept scaring the dog and Lee kept "accidentally" stepping on the tubing.  Hmmm!!  I have to check my oxygen quite often to make sure it doesn't drop too low and the doctor wants me to keep the machines a little while longer.  I even check in the middle of the night when I get up to pee.  Don't bother with the TMI, you know that most of you tinkle in the middle night. At least once!

This is what happened at my last virtual doctor appointment with Dr Mac.  My platelets are much better, because they were low 2 weeks earlier.  My reds are low, but they are always the last to recover from any kind of trauma.  My Jakifi (one of my anti rejection meds) was lowered because that can be responsible for the reds and my predisone was raised.  Moon Moon is back!  This CoVid screwed everything up and set me back with my GVHD.  My left eye is terrible and I have an appointment on Monday to hopefully get drops made.  I pray they work, because my eye is pretty painful.  The mouth bumps and sores kicked back in, but not as bad.  My skin is holding its own and my liver seems okay.  

I had an echo a couple weeks ago, because of my breathing and everything was normal!  Yippee!!!  My heart rate is crazy high and it was running close to 140 just walking to the bathroom so I was put on a beta blocker.  Oh boy do I feel better just from that.  My oxygen still drops if I walk around too much.  Too much meaning,  around the bedroom to get clean clothes.  It doesn't take much.  I can't wait until I'm able to go for a walk.  I actually think that day is getting closer all the time.  So this is what Dr Mac says, it's a combination of lung GVHD, low red blood cells and cocky CoVid.  He didn't say cocky, that was me.  The nurses in Boston told me that my doctor was worried sick about me when I tested positive.  He kept checking all weekend and I'm pretty sure he had off.  We've been together for 14 years, so I guess there's a bond there and we always laugh a lot after the important business has been discussed.  He also always checks on Lee.

I will tell the tale of what I went through with the blasted Vid soon.  I thought I should give an update first.  I didn't realize it had been so long since my last post, but I've been watching TV and taking a load of meds.

Peace out Peeps!

Sadie doing the husky curl!

CoVid Saga, Part one 11/29

 Hey Turkeys,

I'm writing this to let people know what this blasted virus is like and I also want to keep track for book number 2.  So much has happened in the past three weeks, but I would like to start with something positive

The nurses and PCTs at Danbury Hospital are amazing.  Their circumstances are beyond trying and through it all they were fabulous!!  I was treated with care, dignity, warmth and they fought for things I needed.  They even made sure that I had food, if I didn't order anything.  Very bad food!!  These young women and men came into my room everyday with encouraging smiles which was comforting.  They helped me do everything, and I mean everything!  I believed that they were doing good work, but to see it in person, is truly awe-inspiring.  They were my rocks.  Thank you to all of the people who cared for me so wonderfully.

I was going to say something about the doctors...next post.  Only positive today!

Peace out Peeps

Another Bump in the Road

Hey All,

When I said another bump in the road, I meant it figuratively and literally.  That's right, the GVHD in my mouth is back, but not as bad.  The back of my tongue felt funny and when I looked in my mouth, I saw a bunch of white bumps...so gross.  I'll try to describe the feeling.  It's like eating something gooey (like fig newtons)  and it gets stuck on the back of your tongue so you drink something or do a quick finger sweep.  Oh come on, you know some of you have used the finger sweep, you can't kid a kidder.  Anyway, I feel like something is stuck all the time and the bumps are also down my throat.  Not painful, just annoying.  As soon as I noticed the bumps, I called my doctor and my stupid steroids were upped.  Call me moony moon moon face... and body.

I do have a little rant to share.  No, it's not about politics, because nobody got time for that!!  In the past couple weeks a few people have said to me that they didn't share their problems with me because I have enough on my plate.  Well, that's bullshit and it really pisses me off!!  I'm already completely isolated from my friends and family, so does anyone really think it's a good idea to isolate me more, to eliminate me from your lives?  I'm not a fragile china doll and I have proven that on more than one occasion. Do you want me to stop telling you things, because that can be arranged.  I've heard stuff like,"You have enough on your plate". I say, "So what"! Am I supposed to sit around here and wallow in self pity?  Ridiculous!!  BTW, I'm really sick of myself and all my crapola.  I'd like to know about other people and not just the good things, all things, good, troublesome and bad.  So get with it people!!!  I'm a big girl and getting bigger every day.  DAMN steroids!!  When this covid stuff is over, I will be bitch slapping some people if this continues.  PHEW, it felt good to get that off my chest.

Peace, Face Masks and Sharing bad shit! 😷

Beautiful flowers my sister sent to me!

Another week of doctors

 Howdy,

I guess I'll start with my eye doctor.  Well, my permanent plugs that were put in my eyes fell out.  Not so permanent, LOL!  Next step, autologous serum tears.  I give blood and the red blood cells and clotting factors are removed to make eye drops for me.  It's fairly successful, but it isn't covered by insurance.  I think that it's about $100.00 per month.  Yikes!!  Maybe this is where the term "bleeding money" comes from.  It's literal!!!

On to the Boston appointment.  It was okay.  My liver is almost in the normal range, which is good news.  My red blood cells aren't great, which could be from my meds and would explain my exhaustion.  Most of my GVHD seems to inactive. I'm still having some mouth issues, my GI tract acts up and the muscle cramps are crazy!  The anti-rejection medications are making my fatigue worse and that's what is causing the muscle cramps.  I get them in my fingers, legs, toes and back. When I told my doctor about the cramps in my back, he said that is unusual (of course it is) and those are large muscles so it must really hurt. LOL!  Yes, it does hurt. 

I discussed the serum tears with Dr Mac and I asked him if it was okay to use my own blood because, let's be real, it's kind of shitty.  We laughed.  We always have the serious part of the conversation first and then all bets are off.  My doctor and I always end up laughing.  Anyway, my steroids were lowered again, but everything else is the same. I'm all set for Halloween with my Nick Nolte hair, my funky looking eyes and my very round moon face. Uncle Fester has nothing on me and I don't even need a costume!  Boo!  I hope life gets back to normal fairly soon and I wish you all good health.

Peace, face masks, and Halloween! 😷🎃