Update – It’s Been Awhile

I was just talking to some transplant recipients down here this weekend at the Gift of Life Family House where I stayed after this hospitalization & realized I hadn’t posted an update to my blog in awhile.

Overall, I had been doing well, just obviously moving slower after my dad’s death due to the raw grief.  That seemed to lift some but then I wasn’t feeling great but not my “usual” self either so I was communicating back & forth with my transplant doc & nurse practitioners about some symptoms that were bothering me.

Then came another hospitalization.

I spiked a fever & when they did another blood test they found out my white count was super low. Then the day I was set to be discharged a storm came.

I’m going home Monday but have been down here at the transplant house since getting out Tuesday (and that discharge was super frustrating without the weather at play).

I’m making due and have what I need as far as critical meds & stuff but have another appointment Monday to be sure I’m making good progress.

But I have a procedure coming up April 4 to remove a benign tumor in my bladder. My pre-surgical testing had to be cancelled & that office is slow to follow up or return any calls. I’ve been calling daily since being out of the hospital, which is super irritating.

What I’ve realized too is the difference in care on transplant floors in the hospital & non transplant floors.  I’ve gotten some lectures that I shouldn’t have been subject to.  I’d report them but I know the rudeness is coming out of people who don’t deal with transplant patients on a daily basis or live transplant life.  But I also realized I’m human.  Most of the time I am way more on point with my planning, but I got caught off guard & due to my illness & worry of not having experienced this low white count before I had no idea how long things were going to be or what to expect. I forgot more this time & had a harder time getting “with it” or organized with everything going on.

I did find a way to work around this for now & the future which helped me calm down much more.  Yet it was also helpful for me to be down here at the Family House & have other people experiencing similar things.   Also talking about their experiences.  I felt supported but also that I was able to help others.   Everything as they say “has come out in the wash.”

So I’ll be rested for my appointment on Monday & ready to raise super hell then & ask for help again getting things rescheduled because I am not moving this surgery.  I’ll at least have proof of 2-3 calls to tell people that I’ve not gotten calls back to push things along.

I also want to thank everyone for the concern they showed during this last stint.  I learn something new with transplant life every day even after a year of living it.

Sometimes it can still be a bit daunting.

Many of my transplant friends have shared their experiences with this exact issue before & I appreciate that because it helps me learn & feel less alone with it.  I’ve also had some great conversations with some new people & old friends down here & that’s been such a soothing balm.

There’s a few things I may post in the way of tech reviews in the next few weeks depending on how I feel.

I received a bluetooth spirometer to beta test so I’d like to comment on that.

I want to do a few reviews of some other helpful devices, products, & apps amongst other things.

 

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One thought on “Update – It’s Been Awhile

  1. Thank you for sharing! Hoping for the best outcomes for all your upcoming health encounters.

    I would be interested if you ever felt up to it in a discussion on the difference between care for transplant vs non-transplant patients. I think that could be an interesting view in ways to improve care.

    Liked by 1 person

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