Day +3368: “Twas Pirelli’s Miracle elixir…”

“That’s what did the trick, sir
True, sir, true
Was it quick, sir?
Did it in a tick, sir
Just like an elixir ought to do
How about a bottle, mister?
Only costs a penny, guaranteed”

2/19/2020 Greetings 2020, Can I see clearly now? Well, maybe not, but an update is a little overdue.

Karen is well, life moves along on its own pace. This year’s Super Bowl was not watched in the ER as a year ago, nor did we spend Valentine’s day in the ICU watching shock trauma choppers land on the roof next door as in 2010. All in all a wonderful new normal life. Well, those pesky annoyances post transplant as attributed to chronic Graft versus Host Disease (GvHD) do pop up at the most inconvenient times – yesterday, today, and tomorrow. However, as stated, life is good!

Early last year Karen’s blood pressure started acting up, and through a few visits to the Hopkin’s resident clinic, our lab rat, to her great disappointment, was put on a minimal dose of HCT. She can update y’all on the slew of regular and routine appointments.

“I’m dialing up 911
I’m on the brink of trouble again,
If you could change the time, a little,
Then everything would
fine, fine, fine.”

So, post transplant, Karen has been dealing with muscle spasms and cramping. Mostly, it is an inconvenient spasm, such as in the hand which then looks like one of those road signs in the middle of nowhere pointing haphazardly in all directions. Nome: 3211 miles that way, Seattle: 1400 miles 90 degrees out, Tokyo: 4 months 3 days swimming on the opposite, DC: 90 miles sorta south, and Baltimore: well, just straight down. You get the picture. Unlike us males, cramps are also nothing new to women; hence, let me supply an updated definition:

Hmm, 1) Cramps, like muscles knotting and the arms not really working. Yup, you had those too?
2) Cramps and spasms so that you can watch the pretzel reform itself repeatedly while trying to elevate and depress the bed to some position for sleep. Old hat you say, just drive on – well, ok.
3) Spasms shooting up both sides, inability to walk, labored breathing… feeling like being drawn and pulled apart by horses with no one crying mercy to put one out of her misery.

Well, if you had those too, then you bloody well wound up in the ER like Karen despite assurances by her of “I’ll be fine, fine, fine,” and fears that the doctor on duty also moonlights as a barber on Fleet Street. (The escalation of pain meds and muscle relaxants during this buildup was omitted so as not to cloud dramatic effect – or they didn’t do a damn thing.)

Bloodwork, IV, observation…slightly low sodium? Hey, she’s ok again. I mean fucking really?!? Sorry, forgot to bleep that.

“Oh, baby, baby, it’s a wild world
It’s hard to get by just upon a smile
Oh, baby, baby, it’s a wild world
I’ll always remember you like a child, girl”

So, Karen had this idea to try adding Pedialyte to her daily routine. Ok, 9 parts salty tasting crap and 1 part cranberry juice – result palatable? (Yes, it does come in obnoxious flavors for the brave). Wow, significant decrease in all the spasms and cramps. Of course the blood pressure meds and Pedialyte don’t complement each other, and Karen did another couple rounds with the Residents Clinic to get the meds changed.

The part in all of this that really strikes home and is continually the most frustrating is simply the lack of aftercare for post transplant patients. The journey continues, and there is just a lot of hit and miss in post transplant care. After all, the miraculous and statistical five year mark – you are cured; well years ago so… YES! Grateful to be alive, but are there so few that gathering the lessons are not considered valuable? Well, maybe that is just the problem – not a horrible markup to be had on measured salt and sugar water. (Not important – but discovery learning: Pedialyte does screw with a low carb diet).

So, looking forward….

Thank you!

First and Foremost to Mary Lou … the gift of life, doesn’t get better then that.

The doctors, nurses, technicians, clerks, general staff, et al that make the medical profession move forward, step by step…and yes, it is Tuesday every day.

The fellow travelers and your families – share the lessons, trials, and tribulations.

Finally to Karen, Mausi the lab rat. 97 – 35 love.

Finally, thank you for enduring the excerpts from the diary of just another mad man.
As normal, for fun ..three sets of song lyrics embedded above.

20:20 …far sooner than the mind attempts to plan a cloudy future, the past will be Picasso clear.

Michael

5 Comments so far

  1. Thank you for sharing. I wish I could fix this all for you and keep trying to think of ways to help make it so others don’t go through the same thing.

  2. Heather on February 19th, 2020 at 8:39 am
  3. Hi kids? On my way to Chenowith center for old lady exercise class! Yup I’m old!
    Nice to hear all is “ normal” I see the girls about monthly and hear from the old man weekly! My new normal sucks and I still pine for my old life which ended March 18th 2015!! Can’t believe it’s been five years! I old got the Cat Stevens song as I’m not taking too long to think cuz….I’m out of time ❤️

  4. Dana hinchliff on February 19th, 2020 at 8:51 am
  5. Hi Karen. Sorry to hear about the awful cramping. There are so many things post-transplant that bother us, with no answers. I know we are grateful to be alive. I actually feel guilty complaining about some new weird thing happening to me after eight years. Aftercare for BMT patients is severely lacking. They turn us loose after a time to let “the locals” handle any medical issues. Unfortunately, the locals’ eyes glaze over as we try to give them our medical history, physical & emotional dealing with this BMT survivorship thing. Trying to tell them why we are so cautious. Why we ask a million questions. Why every gastro upset, skin rash or body ache makes us freak out a little. I think about you often. Most of the time all is well, but things pop up suddenly. This journey is not for wimps.

  6. Kathleen Scott on February 19th, 2020 at 9:17 am
  7. You look so good Karen. Graft v host is ongoing with me mainly my eyes and fatigue. I have spasms in my rib area that stop me in my tracks. I will try Pedialyte! I’m happy you share your experiences.

  8. Lori Patrick on February 19th, 2020 at 4:38 pm
  9. Cindy lauper
    Karen my friend Bob gave me this stuff Theraworx it’s for spasms and
    Cramps. It’s wonderful. You should check it out. Best wishes❤️

  10. Dana on February 23rd, 2020 at 12:32 pm

Name (required)

Email (required)

Website