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.

 

 

 

 

 

Movie Review: Going In Style

For the past few years it was pretty hard for me to see movies.

For one, I was worried about my oxygen tank running out (I had one leak in the theatre once) & it was hard to fit it in the seats even in the disabled seating area.

(Even when I had my portable concentrator I was self conscious about if it was making too much noise even when it was stowed under my seat.)

But now, post transplant I find I can go to a matinee & enjoy myself without having to worry too much about crowds & germs (I do carry my mask in case).

My attention is also better.

It’s a relief because I really do enjoy movies, documentaries especially.

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VIDEO: How The National Transplant Waiting List Works (From UNOS)

UNOS had this excellent video posted to their Facebook page last month.

I think it makes a very straightforward & practical explanation of the list & how it works in a way people can relate to.

I know I struggle to really boil it down to people in a way that’s easy to grasp, so I am so glad they posted this video to their social media page & hope they will add it sometime soon to their website.

(Photo credit:  UNOS Facebook page profile image)

NEWS ARTICLE: Transplant Recipient Relieved After DEA’s Kratom Decision

So in more important news, I was happy to see this news report.  I had heard from others who have used this herb, Kratom, to help their pain with great results.  I didn’t know this until recently.  The way I actually found about it were that some friends I knew were being affected by the proposed change to the law that would have the herb banned & they were just as shocked & scared as Jordan was at the proposed change.

I admire Jordan for her advocacy for transplant patients but also for those of us who suffer chronic pain.  I’m glad she explained in her own words to the general public what this herb has done to improve her quality of life.

The post surgical pain for many solid organ transplant recipients can turn chronic.  Life with transplant is hard enough,  to have to manage post transplant with intractable chronic pain is even more daunting than it sounds & unfathomable to people.

I’ve talked about my own struggles here with chronic pain with past lung surgeries & now end stage lung disease while I wait for my transplant.  My quality of life is greatly diminished without adequate pain control.  I am in pain every day,  but thanks to the regimen my doctors have given me, it’s a manageable one.  Without that control, I’m almost bedridden because the pain is so intense.

I wanted to bring this up to my doctor to talk to about using instead of an opioid, but I was hesitant & abandoned it because I had thought that it was going to be banned so there wouldn’t be much point.  Now I’m glad I can at least bring it up as an option because most people report very mild if any side effects in taking Kratom.

It can be hard for pre & post transplant patients to find non opioid alternatives for their pain because just like many immunsuppressant drugs,  most pain relievers aren’t kidney safe.

However, both medical marijuana (MMJ) & Kratom are touted as such and are being recommended as opioid alternatives.

It appears too that Kratom gets the same bum rap as marijuana in the public eye. There’s a lot of stigma & misunderstanding surrounding the use & many anti-drug websites consider Kratom an herbal narcotic.

(In fact, the hyperlinks I’ve shown above here, the two – point out the most balanced & least sensationalistic collective studies on Kratom. The second is an in-depth collective analysis done by Dale Jarue. I read through quite a bit of it & it’s pretty well balanced compared to most other news reports & information on the web. Though I did sift through quite a bit & found some decent articles for background on to the real issue & scurry to ban the herb.)

There’s quite a bit of the same politics at play here as there is with MMJ, as this Forbes article outlines.   Another prior article outlines research that proves why Kratom is safer than opioids.  That’s what makes the politics of it so distressing.

I’m hoping the public opinion gets the ban permanently abandoned because people need access to these pain alternatives (including both MMJ and Kratom) if they can tolerate them better & with fewer side effects.

I may now, hearing that this decision might be reversed, bring it up to my doctors for discussion just to have an open discussion of the context of Kratom and whether it might be an effective alternative for me to consider for chronic pain.

Some strains of Kratom also help with sleep & anxiety in addition to pain.

As the news clip pointed out it also helps with PTSD symptoms.

So there are a lot of good reasons to keep this herb from being banned & further reasons why like MMJ it needs further study.

I’ll be watching  for more news to see how this all turns out.

   (Feature Image: source: Wikipedia)

 

Movie Review: Kidneys On Ice

I know organ trafficking is a huge issue in some countries.   I don’t comment on it on my blog because it’s a tough situation.

I can understand why some patients would undertake the risk because of the massive shortage of organs.

So I was expecting this documentary to be grim & even possibly somewhat sensationalistic from the description.  That could not be farther from the truth.

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Ari Sytner Commits Himself to Raising Organ Donation Awareness

This is a subject I haven’t really touched on.  The ongoing controversy & commentary as to whether inmates can or should be allowed to donate their organs.   I didn’t know how to broach it until my friend Ari, who is a living kidney donor & a rabbi, weighed in on it himself when asked by 60 Minutes Australia.

I know Ari through Twitter & now through supporting his Kickstarter campaign. (Please check it out & back his project, it really is worth it).

He’s a very positive person who I am so happy does so many things to champion organ donation as a whole, but especially living donation as well.

I’m glad he’s discussing some of the more hot button issues like inmate donation.

On the recipient end, we are always given the choice.

Yes, there could be certain diseases that we could be exposed to but the organs are tested thoroughly.

We are told the nature of the high risk donation & given the detail & they re-iterate the risks.  We can then choose to accept or not accept the organ.

Even if I ran the small risk of contracting hepatitis I would still accept the organ because Hepatitis can be treated & managed & I know it wasn’t given to me intentionally because it was screened.  The risk is, if I pass on that organ & I’ve already been waiting 7 months for a call to come already, it could be another 7 months I might have to wait again if I decide I’m not comfortable with the risk.   It’s up to the recipient to weight their quality of life & situation on a case-by -case basis.

No good or willing organ should be discarded just because it came from an inmate. Inmates are people.   I  don’t think they should be forced or mandated to donate if they clearly don’t want to, but I would willingly accept an inmates organs & treasure them for the gift they are.

I know others may see things differently,  but it is something you cannot decide until you’re there in that moment in the wait yourself & fighting for your life.

Thank you Ari, for what you are doing to increase donation awareness as a whole but to reach out to others to encourage them to also choose living donation if possible.

I know several who have benefitted from the experience (both donors & recipients) so it really does warm my heart to see someone so committed to championing that & also taking on issues that might seem to be a barrier or an excuse not to donate.

(Photo credit:  Ari’s twitter profile photo)

 

 

 

Article: ‘Gift Certificate’ Concept Enables Kidney Donation, Transplant When Needed

This innovative program by UCLA is a step in the right direction for organs that can be donated through a living donor.

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Press Release: Apple & Donate Life America Bring National Organ Donor Registration to iPhone

I saw this press release floating around recently & I was encouraged.  I was happy to see Apple taking strides to partner with Donate Life America to offer yet another way for people to register as organ donors.

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Article: Man Needs Another Miracle 20 Years After Getting New Heart

Frank Bodino’s story is incredible.  Read it for yourself here.

Yet, what’s even more incredible is how he’s being re-listed through a novel program after being turned down by 4 other centers even with his relentless dedication to taking care of his donor heart.

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