Tiny Bubbles, Er… I Mean Blips

I promised to be honest when I started my blog to not just report all the “good stuff” all the time, because like any path, the transplant path has fits & starts, blips, & snags.  Mine, overall despite being annoying, have been small.  Yet, it’s frustrating at times.

I finally got back to exercising after about a month off because of knee issues.  I tore a meniscus in high school, re-injured it a few years ago.  It can’t really be repaired surgically, so it’s pretty prone to re-injury & it has arthritis.

A few days after my birthday it swelled up.   Things are slower to heal post transplant so I needed this extra time to be sure it wouldn’t blow up and set me back further.

While I’m easing back in, I’m on a schedule of going one day and then having to rest 1-2 more days after because it gets very tight & sore doing small things, so I have to be careful not to re-aggravate it.

It’s coming along.   However, it means I will have to put off my transplant goal of doing/training for a 5K until it’s stronger.

Minor gripe, but it was something I was looking forward to starting about now had this not happened.  Just means it might take longer to reach my goal.

Thankfully, I’m back on sirolimus (rapamune) but my body seemed to go a bit haywire after.  I spent one weekend laid up being on 3 immunosuppressants (I had to stay on the one they were taking me off of until my sirolimus levels were therapeutic).  That was about like the barrage I had at the beginning with the drugs.  Triple side effects.   I’m glad it was just one weekend.

Yet,  after that came more fun.  I’ll finish an fungal medicine on Wednesday night because I had oral thrush (It’s not something contagious).    I take Nystatin to prevent that generally, but I think the extra immunosuppression tripped it off.

I spent a lot of time the first week getting ice cream & shakes to cool my tongue but the medicine really did a number on my stomach.

I’ve had to use about twice the amount of nausea medicine as normal.

I also had to buy about 2 weeks worth of toothbrushes, because I have to change them out daily to keep from re-infecting myself.

I’ll have to throw out my thermometer after I finish the antibiotic because even though I have been cleaning it, I don’t want to take the chance of re-introducing anything.

Lastly,  I’m expecting tomorrow I’ll find out some further instruction on my blood work.  They had to reduce my cyclosporine (main immunosuppressant) while I’m on the fungal medicine because it does tend to raise the level.  If they didn’t & it went too high then I’d be at risk for kidney damage.

I’m a little nervous because I can’t tell if it’s bad air quality, summer heat & humidity or what, but my numbers have been a bit lower when I was looking through my last few weeks of logging.

I think also my nerves are waking up & healing because I have had some intermittent pain. Thankfully, it’s still not near as strong as my end stage pain was.

I contacted them today just to be sure there’s nothing amiss because of all of this together has transpired since my last appointment.   But I’m hoping things will look up soon.

Right now, I’m content to be at 7 months & able to breathe well most days.

My energy levels aren’t where I want them but I am still farther ahead than I thought.

It wouldn’t be honest if I didn’t share these blips.

Someone out there could be having them & feeling like if they share when things aren’t going well they are complaining or not grateful.

Not true. Venting is necessary & good.

It’s not all sunshine, but it is still worth it (to me).  Even when it’s not entirely smooth sailing.


One thought on “Tiny Bubbles, Er… I Mean Blips

  1. Thank you for being honest. It matters to others experiencing similar ups and downs. A lot of what we see online is all positive and doesn’t show what’s underneath, and that can be discouraging to someone who is not sunshine-and-rainbows that day.

    Sorry about your 5k plans. It can be very frustrating for an exciting plan to be put on hold. I hope you will find somewhere constructive to put your energy before then.

    Liked by 1 person

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