I’ve been a bit incognito lately, so I am writing sort of an update to see if I can still write.
Good things are happening even as my health rapidly declines from ESRD. I have become an 85 year old disabled person with very little energy. I plan and ration every trip upstairs or outside. I had a test last week that would probably give most people 1-2 days of downtime, if even that. It really took 2 weeks out of my life. Soon, I will go and get another required vaccination (Shingles) that I was going to get two weeks ago but didn’t because of said test. I know that will make me ill for a few more days. Then, I need to gear up for a 2 day nuclear medicine stress test, and then more vaccines after that. It totally sounds doable for a normal person, but for me, each one means several bad or poor energy days. My body’s requirements to feel “fine” leave little margin for error. It is hard to describe to people the lack of energy, the brain fogginess, the little annoyances like constant itching or headaches that take more energy. Its also very boring to talk about and listen to. So, I’ve pretty much abandoned social media updates for the most part. There is nothing too interesting to say about my state of being. I feel like I’m fading into oblivion.
All these tests and vaccines are part of a looooong preparation for a possible kidney transplant. People heard about this over a year ago and can’t understand why nothing has moved along. There have been delays due to the pandemic, but this is how long things take, too. It is a lot of testing and waiting and testing some more. So far, things have gone well, although there are still a few hoops to jump through.
So, from February to now, I have had my initial physical, 18 viles worth of blood work, a kidney and bladder ultrasound, an EEG, an echocardiogram, a colonoscopy, a mammogram and pap, visits with dietitians and social workers, and a host of various vaccines that adults usually don’t need to get (as well as Covid.) All results have looked good so far, and I keep advancing to the next stage. On July 21st, I was officially put on the UNOS kidney transplant waitlist. I still have a cardio stress test and vaccines to finish up. In addition, my son Avery turns 12 in December, so I really would like to get him vaccinated for Covid as well.
My family, both my nuclear family and my family of origin have been very good to me during this time when I keep getting sicker and am able to contribute less and less. My father and sister have helped me by settling the matter of the house I live in, which has always been a point of stress and up in the air. Not that I thought I would be kicked to the curb, but there was just a lot of uncertainty with it and it was unsettling for me to worry about what would happen to my husband and kids if I died. So we have been able to get our will/estate in order and clarify what happens to the house. I now own the house and Nik and the kids will not have to worry about a place to live if something bad were to happen to me. This is a big relief for me, as well as being able to possibly move in the future if we need a one story house or a cheaper living situation.
More people than I would have ever thought possible have approached me about donating a kidney. This is very humbling. Some, I knew would not pass the screening, but I still am very grateful that they even considered this at all. I am grateful to everyone who has even expressed interest in wanting to learn more about living kidney donation. To have someone willing to donate a kidney to you is a gift that is very hard to wrap your brain around or articulate the feeling about. I don’t think I do it justice.
At this time, I have approached my sister, Lori, about the possibility, and she agreed to be tested. It was very important to me that she didn’t think that she HAD to do it and that she had a choice. I get that this is a huge, massive pain in the ass to put someone through, and it does carry certain risks. I have always been all about bodily autonomy, whether it is about choices to carry a child or try or refuse a medical intervention for disability or donating an organ. I have lived a life of health uncertainty and surgeries and interventions, so I am used to that mindset. I get that it is going to be a bigger deal for others to put themselves purposefully through medical risk. I can’t make those kinds of judgements for someone else. At first, I wasn’t even going to ask my sister, it seems like to much emotional complication. But then, it came down to logistics and practicalities. She has a better chance of being a match, she has a healthy lifestyle, she doesn’t have kids to have to think about. And right in front of me are my kids, one who is only 11 and the other 16. I had always thought I would at least make it until their adulthood. I still needed to try my best to make it as long as I could. I had to go with the smartest choice, but also be ok with the fact that she may not want to do it or not be able to do it. And, honestly, I was/am ok with it.
So, my sister is only in the early stages of her own testing, it is not a go yet. But she is a perfect match. She matches all 6 antigens that they measure. So far, so good. But she still could be disqualified based on the results of upcoming tests. I am cautiously optimistic. Its a weird process. Right now I am filling out an application to get help to pay for her travel costs and that sort of thing. My insurance pays most of her medical costs, but there are a lot of miscellaneous expenses involved in this. Its complex and my brain gets foggy and I can’t think of words or apparently have the most intellectually stimulating conversations anymore. I don’t even feel like the right words are coming to me now, when writing about it. Just the basic facts is about what I can accomplish here.
Just the basics is what my life has been stripped down to. To get up and exercise and eat right and try to pick up after myself and do a little bit of homeschooling with my kids (they are fairly independent right now, and I do utilize the older kids to sub for me when I am off to doctor stuff for the younger one.) Nik does all the cooking. Everyone pitches in on the cleaning and I am very well aware that I have started to do less. Maybe I clean my bathroom sometimes, I do gardening in short bursts. My guide dog is bored so I try to still take her on walks. I used to be able to walk miles a day, now I go a mile in 30 minutes and I am pretty much done. I exercise always doing the modifications in Fitness+ videos and I even sometimes have to make modifications to the modifications. But my goal is to not lose it altogether. You know that saying “The more you know, the more you know?” My current motto is “The more you do, the more you do.” When an opportunity presents, I try to say yes. Even though I know it may mean I do some modified version of yes. Even when I am a high risk person living in a pandemic. Moving in some fashion is always better than staying still. It will never be the perfect time or feeling or way to move.
The best case scenario for me would be that my sister passes the rest of her assessments and I get a new kidney sometime in the next 6 months or so, then I will probably have to go another 6 months to recover and manage rejection. Then maybe things look up for me? I get some energy back, I feel better, my brain fog clears up, I stop itching all the time? But I also have to be prepared for my sister not making it through and having to start from scratch or wait for a cadaver donor and that will likely mean starting dialysis in the next 6 months. Those are two very different outlooks, but its all I can do. Long ago have I let go the false notion of free will. It will be what it will be.
But the title of this post gives me hope. It means “Will I be super spry?” in Swedish, which I am hanging on to right now. It refers to something Prince Daniel of Sweden said on TV recently. He had a kidney transplant about 12 years ago with a kidney from his father and he said that almost immediately after, his brain cleared up, his body felt good and he kept saying he was “super pigg” and since my Swedish knowledge is extremely basic, I asked Nik why he kept saying he was super pigg? I thought that sounded funny. Nik explained that he meant he was highly energetic, or very spry and alert. So now we talk about the time when maybe I will be “super pigg” again. Maybe I will get a “super pigg” t-shirt.
So when you are dealing with something like this that is hard now, and hopefully has a good chance of getting better but also could just as easily get worse or even be the end of you, it is hard to frame your day-to-day. Life is happening NOW, no matter what. You can’t push pause, even in a pandemic. My kids are gettin older, Nik is getting older, seasons are coming and going. You can’t put things on hold in hopes that it will be better someday. You still have to participate as much as you can. You also have to give yourself some grace and know that you just simply will not be able to do all that you want to do. You have to come up with different ways of living and balancing things, while still hanging on to some hope. I am trying to come up with different ways to be social with people, and reach out and give…but I struggle with this because I mostly feel like a dud with nothing interesting to say. I’m trying to resist the urge to just put everything on hold and find new ways to keep moving forward. I thought I would try to write more, even though my brain is full of cobwebs. I’ve thought about reaching out to penpals (email pals, actually) instead of doing the social media thing which I just feel unmotivated to do. I thought of doing something on Youtube, just something simple like putting up videos on how to use different blindness hacks and things that might help people. Maybe I read more books? I don’ t know. Got any ideas for me? What have you done when your life has had to slow way down for the foreseeable future? How have you balanced grace for what you can’t do with pushing yourself to do just a little more? How to stay just “lite pigg?”