I’ve often thought how lucky I am that I’ve gone through life able to avoid direct experience with any major negative world event. I’ve been blessed to have a front row seat to several world events, but not negative scary ones. If you look at history, the usual time between things such as wars, and it really is quite extraordinary. Yes, we’ve been at war, even attacked on Sept. 11, 2001, but I’ve never really felt my life was in direct peril – not really. I’ve never had to think about going without anything I could afford. I’ve never worried that my house would be bombed, or that I’d be kept a prisoner for some, hopefully, unjustified reason.
I still count myself very blessed in this respect. History has marched on though, and it might just have caught up with me.
For these past few months our world, yes the whole world, has been experiencing a pandemic. It has impacted every aspect of our lives no matter where we live. Personal liberties have been curtailed for the good of society as a whole. Together we’ve all made huge lifestyle changes. Children have been sent home from school and adults that could, have been working from home. And for me, a very immune compromised post lung transplant patient, I do truly fear for my life. I don’t feel it is an exaggeration to say I feel like a prisoner in my own house. Every once in a while I get out for some medical reason, but otherwise for months (even before the pandemic) I’ve been on a kind of germ house arrest. I’ve learned I’m a wimp and had better never do anything illegal. I’m going bananas in my 500-square-foot apartment with its TV, music and internet connection to the outside world. I know I couldn’t handle anything worse! Yep. Wimp.
Along about November I started experiencing some trouble with my new lung. It was gradual this time, not a quick onset like the previous bouts of rejection. I ended up in the hospital, again, and underwent several therapies in hopes of curing the rejection. Lots and lots of steroids, a treatment called IVIG and apheresis (where they took blood out of my neck in hopes of removing the offending antibodies, and then pumping the now “cleaned” blood back into my neck.)
We thought it worked for a while, but once again my spirometry began to fall ever so slowly. Back into the hospital again, then out, then back in from an infection I seemed to have picked up at an IV site. Out again, and then, yep, back in, this time for a bigger canon in the rejection arsenal – thymoglobulin.
Everyone who has an organ transplant is immune suppressed. The suppression is because of the medications we take to trick our immune system into not noticing the foreign body in its midst and mounting an attack against it. Add these rejection therapies, and well, you get extra immune suppressed.
It’s a great state to find yourself in amid a global pandemic the likes of which the world hasn’t seen in a hundred years. Besides being scared to death my body will reject my lung, I’m scared to death that if I touch the railing in my apartment building to steady myself, and forget to wash my hands immediately afterwards, it could be a deadly error.
I haven’t blogged much lately, despite everything going on in my medical world and the world in general. I have lost a lot of lung function. It is very possible I won’t get it back, although I intend to keep trying. My muscles are very weak from all the treatments. It’s as if I’m starting all over again. Walking a fourth of a mile (around my block) is a huge victory right now. It is frustrating to have come so far, gotten a little taste of an almost normal life for a few months, and then to be kicked back to the beginning and not know if all the hard work will ever even gain me any ground.
Disability is not enough to live on in the Washington DC area, so I work as much as I can to pay the bills, yet not lose the health insurance that pays for the literally hundreds of thousands of dollars in medical bills that seem to be a way of life now. I get tired easily, so I feel that if I’m feeling well enough to blog, I should be doing something I might be able to turn into income. I do think, however, that blogging is good for my mental health and that somehow I should make more of an effort at it.
I’ve also avoided blogging because, well, I feel so moody. Between the medications, the rejection and the pandemic, there are days I’m working really hard to seem pleasant. It might be a good thing I live alone, because if someone else were here I’d likely bite their head off often for no good reason. Finley is pretty lucky he’s so cute. Yelling at him would be like yelling at a baby. I just can’t do it. Thank God I have him for company.
In the beginning of the pandemic, as hard as it was, there was this sense of national unity. Everywhere you looked there were memes, music parodies or TV commercials declaring our unity to fight the pandemic. People followed the directions of medical experts and wore masks, stayed inside and many have paid a personal financial price to do their part.
We made jokes about the lack of availability of grocery items – especially toilet paper - and people banded together to start making facial masks when none could be found.
Grocery shopping was especially fun for me since I was not allowed to leave my apartment. I created shopping lists on pretty much every grocery delivery service I could find. I ended up spending more money than usual because I ordered way more than I needed. Even if the delivery systems would let you order an item, more often than not when they went to put your order together, the item would be out of stock. So, instead of ordering one type of paper towel, for example, I ordered five different brands of paper towels hoping at least one would be in stock. My sister-in-law and other family and friends would occasionally bring me things I was having a particularly hard time getting a hold of – like yes, toilet paper and of course, Clorox or Lysol wipes to try to keep everything free of germs. I ended up with some of the wackiest combinations of things!
The shortages are improving. I’m able to get a delivery time much easier now. For everyone else things are beginning to open up. They have a light at the end of the tunnel. But for me, an end to my germ jail sentence is no where in sight. I can’t help but feel a little jealous of people who can now go to a restaurant or get their hair done. I’m still extra suppressed from the rejection treatments. As things open up, there will likely be some increase in the virus transmission again. For me, that means more germ jail.
There are days when I seriously contemplate an escape. I knew a transplant was trading one lung disease for another, and that some of us had more post transplant medical issues than others. You go into it hoping for the best. You hope you’re going to be the one running marathons (even if you never ran before your transplant!) I somehow wasn’t contemplating being alone for months and months, and possibly indefinitely. But then I think of how precious this gift was from my donor. What if being able to hang in there a bit longer is the difference between this lung (which clearly isn’t going to last forever) making it several more years or not making it at all?
I am climbing the walls in here. Some days I feel like my brain is going to turn to mush. Yet, thanks to technology I’m able to talk to friends around the world. I’m able to work on HPS stuff, even if it never seems like enough. If my energy levels perked up (and they have been improving) I might find the stamina to do what I have to do, and still be able to write and paint. It isn’t all I hoped for, but I suppose I could adjust.
Still, what I wouldn’t give to walk around public streets and go to Starbucks!
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