QUARANTINE & COPING

I am restarting this blog because of COVID19.  I didn’t have it but started quarantining in mid-March like most people.

But even though parts of my state are re-opened along with some businesses, I still remain at home most of the time.

I am on another break from my MSW program which I did start, but needed to take some time off for some family situations before the pandemic.

During the first few weeks of the pandemic, I tried hard to remain in my class since it was virtual but it was too hard trying to stockpile food and supplies and commit 20+hours a week to learning.

My professors are supportive and I know it was the right decision because I couldn’t force myself to learn something new and retain information.

Since I’ve entered stage 4 kidney disease I have more side effects and balance issues in particular.

I’ve fought off digestive issues and disordered eating and have been keeping a fever diary to see if there’s a pattern to many low-grade fevers I’ve been having recently.

I’ve been struggling with the quarantine but my depression is finally lifting some with the change in season and longer days.  I’ve been trying to take strolls around the neighborhood when I feel up to it.

I was struggling with typing for the longest since I’ve been having some neuromuscular issues with my fingers and wrists (specialists are still trying to figure that out).

When it’s safe again I’ll meet with the Kidney transplant team to talk about evaluation since my lung team told me it’s time to get ready for evaluation testing.  (My kidneys are functioning around 20 percent right now thanks to LAM & TSC.) I found this out in late February.  The thought about another transplant gives me pause but I’ll always go through the process to at least see if there’s a donor match out there.

I’ve had a few friends volunteer to be tested for me which means a great deal. But with the pandemic, something tells me this will be a longer process than it would be otherwise.

I’ve had some really dark thoughts and moments,  lost a few more friends (not to the virus), but even though some days I don’t feel the best, I’m still grateful to be here.

It doesn’t mean I love everything that happens with transplant and I’m still chronically ill so I have to be careful. That doesn’t bother me.

What bothers me are people who don’t give a damn about me by societal standards. There are certain people who think I’m expendable.

Well, I’ve got news for those people. I’ve hacked healthcare for about 15-20 years now, and I have no intention of stopping or dying by anyone’s hands but my Creator.

If that means staying in quarantine longer because I follow the science, then so be it.

 

 

 

 

 

Long Time No Update

On December 2, I’ll be at 2 years post transplant.   In some ways it doesn’t seem it’s been that long, in other aspects it seems longer.

I had another blip in my lung function again but rebounded again.  I guess this is just an annual dip due to weather changes.  Which I’m not really surprised by.  I’ve always had sensitivity to changes in season.

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It’s Been a Year…

Last night, I celebrated my one year transplant anniversary.  At that time in 2016, I was coming off the ventilator & breathing my first new breaths on my own.

I still remember those moments. Still remember crying when my surgeon showed me my first x-ray of my lungs.

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A Few Answers

A few months ago, my numbers were unexplainably down about 30 perecent.

After some steroid pushes & medication changes, things were still looking a bit funky & my numbers still hadn’t risen,  so I needed another bronchoscopy (scope of my lungs).

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NaNoWriMo 2017: Plotober is Here

For the past two years I’ve written a novel for National Novel Writing Month.  It was a welcome distraction & radical departure from my life.

It also disciplined me to write 50,000 words in 30 days, which seemed really daunting at first but was actually doable.

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9 Months…

A few days ago (on 9/2) I made my 9 month transplant anniversary.

A few weeks before that I had another bronchoscopy because my numbers were down.

All appears to be OK.  No rejection.  That’s good.

I’m hoping the fall brings better breathing numbers.

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