Kidding on the square there.
On May 13, just after breakfast, I got a call. It was my turn to be primary after one and a few months on the Kidney/Pancreas transplant list. Because I"m me, and because I'd asked to have it this way. the very first thing I asked was if there were ANY children on that list that qualified for those organs. The coordinator I spoke with (I'm sorry I don't remember your name!) said that there were not, and that all she could tell me was that the back-up was an adult.
I said let's do this.
That night at 10PM I was admitted into UF Shands in Gainesville, FL. Since I live in that city, it wasn't hard to get there. Because of COVID-19, no one could come with me. I had to be in isolation while they did COVID testing, and by the time that was going to be over, it would be midnight or later. So, Nick dropped me at the door. We've both since agreed it was the hardest thing we've ever done: Him dropping me and watching me walk alone into this trial, and me doing it. It was hard. It was scary as fuck-all, and I don't mind admitting it.
After being cleared of COVID, I got shuffled into the pre-op routine. Honestly, most of that is a blur. I did what I was told when I was told and don't remember much about it, except for Enid the nurse, who saw how scared I was and was just plain awesome.
I don't remember much about the next few days. What I'm writing here is what I've been told and small fragments of my own memory.
I had the initial surgery on the morning of 5/14. On the morning of 5/15 they went back in to correct a blood clot and reposition the pancreas. They left me mostly open after that, because they knew they were going to have to go back in. They gave me one day off because they had to, and went back in on 5/17 to make sure the corrections took. They had, and I was closed up. For those four days and one after, I wasn't allowed to move myself at all. I was flat on my back (propped here & there with pillows) What I remember most about that is every time the nurses came to move me, one of them would comment on how tiny I looked in the bed. I've never EVER thought of myself as tiny, or even small. That was a revelation. On the sixth day I was moved out of CCU to the transplant floor. I also stood up and took a couple of extremely wobbly steps.
In the hospital, I have no memory of medication intolerance. I know things changed, but it wasn't because I was omitting or itchy or anything. On that front, I've been extremely fortunate. I'm told I'm on a comparatively light medication regime. This may change as time goes on, but for now, I'm grateful.
Emotionally, it was a roller coaster at first. Have I mentioned how much I hate roller coasters? The steroids seriously f'd with my chi. I spent one night stuck in a childhood trauma memory after the second surgery due to a tube running down my nose & throat. They sedated me. It was a good thing. They then weaned me off of that onto a temporary anti-anxiety med. That helped a TON. Once they did that, I was able to remember my mantras & mental tools to keep myself on an even keel. It got easier from there. They also have reduced the steroid dose (as is appropriate to this process) and that helped too.
The next few days were a series of getting up as I could to walk as I could and doing my breathing exercises. They moved me from clear liquids to solids as soon as they could. At first, because i've had NO appetite for the past couple of years, I could only hold about 1/4 cup of food at a meal. Over the next couple of days my appetite picked up. My most overwhelming memory of that is Nick beaming at me as I was tucking into some plant-based lentil bolognese over dinner one night. He's been watching me pick at my food for a couple of years now, and quietly worrying about it. His relief is huge and quite palpable. As palpable as the hunger I'm getting used to feeling again. The only complaint I have on that front is that my jaw muscles have apparently weakend because by the end of a meal I'm tired from chewing. (?Dafuc).
So I'm home, and doing all the things. I have therapy coming to the house. I've been doing my breathing and exercises and walking. The puppies LOVE the walks. We go round & round the pool, and they think its just THE BEST EVER. So far, my creatinine is normal. My blood sugar is normal with no medication. I'm doing all the things to protect these organs and get stronger and with more stamina. Every day I'm a little bit better. It is going to take time. More so because of being flat for 5 days. I'm determined and motivated though. I'm going to get back to me. I just have to pace myself to not push too hard.
Nick was a trooper through all of this. He was there when I woke in CCU. He wasn't allowed to stay in CCU, and by the time they moved me out of there, I had a handle on things at night enough that I sent him home. I've done ca retaking before and I know how draining it can be if one can't take care of oneself. So, I insisted that he do so. To his credit, he agreed and that made it so that he had the energy to take care of me when I needed him. I am amazed and humbled at his dedication and love and most of all willingness to do this work. I've never met a man before who would - and he did and did it extremely well. Bronnie held down the home front - including puppies - and was here when I got home. They've both been rock-stars about my physical limitations ( no bending, twisting, reaching or lifting for 3 months at least).
So, my world is a lot of timers telling me to do things right now. That's how it has to be - for now. The silliest of these is the "Drink Water" timer. You see, I'd gotten used to my fluid restrictions. That simply isn't enough water now, and I'm out of the habit of drinking. So, "Drink Water" alarm was born. It is working, and until I'm not needing it, I'm going to use it - along with all of my exercise alarms and pill alarms & such. Yes, my world has become way more type A than it used to. I'm okay with that. I determined before I signed up for this that I would not be a complication in it. So far, so good.
As to side effects, the only one I've noticed is a slight tremor all over. My hands and lips especially. I've told the docs about it, and followed up with "it isn't enough to make changes". I can live with this. I've been told that if that ever changes, we can try changing meds. I'm pretty reluctant to rock that particular boat. It is going SO very well. My vision is borked at the moment, but I expected that, and it may settle back down to what it was, or I may need to go get a new prescription in a few months. Not fussed either way. Life will be what it will be, and I'm kind a looking forward to seeing what that is.
As to quarantining and social distancing: We are still doing so, with no plans to change that any time soon. I am not leaving the house except for labs and doctor appointments. If peeps want to visit, we are asking that they get COVID tested and quarantine during the wait period for results. Testing is free in Alachua county (they do request insurance info if you have it, but it is free regardless), and we'll happily provide info to any who are interested in being tested for any reason. Yes, we are being extreme. No, that isn't really negotiable right now. Once a vaccine for COVID is available to me (as in no live culture vaccine), then we can talk about a little more freedoms for me and a little looser on my social restrictions. For now, this is how it has to be. To that end, I'm willing to set up Zoom/Facetime visits. As soon as I'm able to stay awake with any coherence past 7pm, I'll be joining my ongoing Zoom S&B. Not rying to be anti-social here. Also trying actively not to get sick. So. . .balance, bitches. Balance. For us, right now, balance means restriction. I'm okay with that.
For now, I'm busy doing life. It is taking all of my focus and stamina just to get my exercises and normal daily activities like bathing and dressing done. This will change, and pretty rapidly according to the therapists I've seen. I'm strong, and it is going to serve me well in the coming weeks. I've also been through a lot physically and it has taken a toll on that strength. Right now so much has and is changing that I'm barely keeping up, but I AM keeping up, and my stamina and strength are improving daily.
To all of you who held me up from a distance: Thank you. Keep it up. Please know that I have nothing but gratitude to all of you. I could not have done this without all of your thoughts, prayers and/or good intentions.
We shot for the moon. Right now, it appears we have landed there. If someday we fall back and land at the beach - I'm still so very grateful for this miracle that I have no words to really express it.
Was it worth it? Fuck yes. It was grueling and scary and still so very worth it. I haven't felt this good in years. I say that with all of the pain that moving entails right now, and all of the trackinig I have to do. It has been so worth it already.
On May 13, just after breakfast, I got a call. It was my turn to be primary after one and a few months on the Kidney/Pancreas transplant list. Because I"m me, and because I'd asked to have it this way. the very first thing I asked was if there were ANY children on that list that qualified for those organs. The coordinator I spoke with (I'm sorry I don't remember your name!) said that there were not, and that all she could tell me was that the back-up was an adult.
I said let's do this.
That night at 10PM I was admitted into UF Shands in Gainesville, FL. Since I live in that city, it wasn't hard to get there. Because of COVID-19, no one could come with me. I had to be in isolation while they did COVID testing, and by the time that was going to be over, it would be midnight or later. So, Nick dropped me at the door. We've both since agreed it was the hardest thing we've ever done: Him dropping me and watching me walk alone into this trial, and me doing it. It was hard. It was scary as fuck-all, and I don't mind admitting it.
After being cleared of COVID, I got shuffled into the pre-op routine. Honestly, most of that is a blur. I did what I was told when I was told and don't remember much about it, except for Enid the nurse, who saw how scared I was and was just plain awesome.
I don't remember much about the next few days. What I'm writing here is what I've been told and small fragments of my own memory.
I had the initial surgery on the morning of 5/14. On the morning of 5/15 they went back in to correct a blood clot and reposition the pancreas. They left me mostly open after that, because they knew they were going to have to go back in. They gave me one day off because they had to, and went back in on 5/17 to make sure the corrections took. They had, and I was closed up. For those four days and one after, I wasn't allowed to move myself at all. I was flat on my back (propped here & there with pillows) What I remember most about that is every time the nurses came to move me, one of them would comment on how tiny I looked in the bed. I've never EVER thought of myself as tiny, or even small. That was a revelation. On the sixth day I was moved out of CCU to the transplant floor. I also stood up and took a couple of extremely wobbly steps.
In the hospital, I have no memory of medication intolerance. I know things changed, but it wasn't because I was omitting or itchy or anything. On that front, I've been extremely fortunate. I'm told I'm on a comparatively light medication regime. This may change as time goes on, but for now, I'm grateful.
Emotionally, it was a roller coaster at first. Have I mentioned how much I hate roller coasters? The steroids seriously f'd with my chi. I spent one night stuck in a childhood trauma memory after the second surgery due to a tube running down my nose & throat. They sedated me. It was a good thing. They then weaned me off of that onto a temporary anti-anxiety med. That helped a TON. Once they did that, I was able to remember my mantras & mental tools to keep myself on an even keel. It got easier from there. They also have reduced the steroid dose (as is appropriate to this process) and that helped too.
The next few days were a series of getting up as I could to walk as I could and doing my breathing exercises. They moved me from clear liquids to solids as soon as they could. At first, because i've had NO appetite for the past couple of years, I could only hold about 1/4 cup of food at a meal. Over the next couple of days my appetite picked up. My most overwhelming memory of that is Nick beaming at me as I was tucking into some plant-based lentil bolognese over dinner one night. He's been watching me pick at my food for a couple of years now, and quietly worrying about it. His relief is huge and quite palpable. As palpable as the hunger I'm getting used to feeling again. The only complaint I have on that front is that my jaw muscles have apparently weakend because by the end of a meal I'm tired from chewing. (?Dafuc).
So I'm home, and doing all the things. I have therapy coming to the house. I've been doing my breathing and exercises and walking. The puppies LOVE the walks. We go round & round the pool, and they think its just THE BEST EVER. So far, my creatinine is normal. My blood sugar is normal with no medication. I'm doing all the things to protect these organs and get stronger and with more stamina. Every day I'm a little bit better. It is going to take time. More so because of being flat for 5 days. I'm determined and motivated though. I'm going to get back to me. I just have to pace myself to not push too hard.
Nick was a trooper through all of this. He was there when I woke in CCU. He wasn't allowed to stay in CCU, and by the time they moved me out of there, I had a handle on things at night enough that I sent him home. I've done ca retaking before and I know how draining it can be if one can't take care of oneself. So, I insisted that he do so. To his credit, he agreed and that made it so that he had the energy to take care of me when I needed him. I am amazed and humbled at his dedication and love and most of all willingness to do this work. I've never met a man before who would - and he did and did it extremely well. Bronnie held down the home front - including puppies - and was here when I got home. They've both been rock-stars about my physical limitations ( no bending, twisting, reaching or lifting for 3 months at least).
So, my world is a lot of timers telling me to do things right now. That's how it has to be - for now. The silliest of these is the "Drink Water" timer. You see, I'd gotten used to my fluid restrictions. That simply isn't enough water now, and I'm out of the habit of drinking. So, "Drink Water" alarm was born. It is working, and until I'm not needing it, I'm going to use it - along with all of my exercise alarms and pill alarms & such. Yes, my world has become way more type A than it used to. I'm okay with that. I determined before I signed up for this that I would not be a complication in it. So far, so good.
As to side effects, the only one I've noticed is a slight tremor all over. My hands and lips especially. I've told the docs about it, and followed up with "it isn't enough to make changes". I can live with this. I've been told that if that ever changes, we can try changing meds. I'm pretty reluctant to rock that particular boat. It is going SO very well. My vision is borked at the moment, but I expected that, and it may settle back down to what it was, or I may need to go get a new prescription in a few months. Not fussed either way. Life will be what it will be, and I'm kind a looking forward to seeing what that is.
As to quarantining and social distancing: We are still doing so, with no plans to change that any time soon. I am not leaving the house except for labs and doctor appointments. If peeps want to visit, we are asking that they get COVID tested and quarantine during the wait period for results. Testing is free in Alachua county (they do request insurance info if you have it, but it is free regardless), and we'll happily provide info to any who are interested in being tested for any reason. Yes, we are being extreme. No, that isn't really negotiable right now. Once a vaccine for COVID is available to me (as in no live culture vaccine), then we can talk about a little more freedoms for me and a little looser on my social restrictions. For now, this is how it has to be. To that end, I'm willing to set up Zoom/Facetime visits. As soon as I'm able to stay awake with any coherence past 7pm, I'll be joining my ongoing Zoom S&B. Not rying to be anti-social here. Also trying actively not to get sick. So. . .balance, bitches. Balance. For us, right now, balance means restriction. I'm okay with that.
For now, I'm busy doing life. It is taking all of my focus and stamina just to get my exercises and normal daily activities like bathing and dressing done. This will change, and pretty rapidly according to the therapists I've seen. I'm strong, and it is going to serve me well in the coming weeks. I've also been through a lot physically and it has taken a toll on that strength. Right now so much has and is changing that I'm barely keeping up, but I AM keeping up, and my stamina and strength are improving daily.
To all of you who held me up from a distance: Thank you. Keep it up. Please know that I have nothing but gratitude to all of you. I could not have done this without all of your thoughts, prayers and/or good intentions.
We shot for the moon. Right now, it appears we have landed there. If someday we fall back and land at the beach - I'm still so very grateful for this miracle that I have no words to really express it.
Was it worth it? Fuck yes. It was grueling and scary and still so very worth it. I haven't felt this good in years. I say that with all of the pain that moving entails right now, and all of the trackinig I have to do. It has been so worth it already.
