How it came to pass & the recovery process... Warning: some parts of this will be boring and mundane
Sunday Oct. 22
It's a story as old as time. Boy meets girl, girl takes boy's vital statistics, boy get's new kidney and the rest is history. Well, at least in the shortest version of this story. But that's not why you clicked on the link, is it? I didn't think so. So here's the full story, at least to the best of my memory and it actually only includes about two weeks. The rest of the story will be told over the course of the next several years, because... that's how blogs work. |
Three hours earlier at approx 6:45 am I received a call to let me know there was a kidney they believed would be perfect for me. So I pulled my shit together, rallied my family and headed to the hospital for 9:30.
They ran some tests, all of which seemed to confirm the kidney would be a good match. But they also didn't like my potassium levels so they decided I should dialyze for a couple of hours before the operation to make for the most successful transplant opportunity. It was a little after 4:00 pm by the time they started wheeling me off to the operation room.
They didn't get me into the operating room until about 5:15 pm and about 8 minutes later I was out cold and the next thing I knew they were trying wake me up so that I could wave goodbye to Meg & Annie. It was about 10:30 pm and the girls wanted to head home. I vaguely recall waving, though Meg & Annie tell me that I said in a really loud voice, "Ok, Love You."
Then I was wheeled back to my room. All the way I was trying to tell the nurses that I needed to pee really bad. They told me I was peeing. I couldn't make them understand. What was happening was the catheter was restricting the flow and putting pressure on my bladder, making me feel like I needed to pee more than I was through the catheter. Eventually they adjusted the catheter and that gave me a brief relief, but from that point on I had to keep fiddling with it to get it to drain enough to allow me to pee as much as I felt I needed to.
Monday Oct. 23 - Wednesday Oct. 25
Monday, Tuesday and the first half of Wednesday are mostly a blur. No one visited Monday and I was thankful for it. I was sore from the operation but they were keeping me on pain killers. There was a lot of pressure in the area of my incision and I could feel the new organ inside of me. I couldn't sleep on my side and I'm a side sleeper so I was quite uncomfortable. I had a few moments here and there where I was able to like FB comments from folks on Meg's post. I posted a picture of my liquid breakfast and gave the most lame status update.
Tuesday I was very agitated and when Meg came by she didn't stay long. I was a bit of a jerk. After she left I was given some meds that made my heart start racing and that continued for 5 hours. When it was over all I could do is sleep. No updates were given on Tuesday.
Wednesday started out well, but after my morning meds the heart racing began again. Two hours later they got that slowed down and again all I could do was to sleep for a few hours. That's when I finally started to feel a little normal and began to eat a little solid food. I also was able to give a decent status update and answer a few FB questions on how I was feeling.
Thursday Oct. 26
On Thursday my doctors came by and told me I would probably go home today. This caught me off guard. I thought for sure one more day. I had three solid food meals on Thursday, which felt great. My catheter came out, which was the most painful part of my whole experience. Not to mention the nurse thought that ripping the tape off my leg holding the catheter, like you would a band aid, would make it less painful... not realizing I had sensitive skin. She ripped the skin right off my leg.
Meg came in with Annie around 4:00 pm. Annie helped me to eat my dinner and by 6:00 pm they sent us on our way. But not before Meg got this picture and posted it to FB.
Now go back and look at the first picture again and look at the difference between the weight on my face and neck.
Granted my hair is really bad in this shot, but it wasn't great to begin with. What a difference though, yes?
Friday Oct. 27
Home again, it felt nice to do even a little bit of anything I wanted to do. Shower, watch TV, eat my toast and drink my tea for breakfast, walk out onto the deck for some fresh air, raid the fridge for something bad to eat, etc.
Of course the new pill regimen became my responsibility to maintain. This is a view of a typical round of morning pills based on my original schedule. The schedule has since changed a bit but more or less looks very similar
Thirteen in the morning, two in the afternoon and thirteen more at night. Twenty-eight pills a day. At least until I get my daily BMs under control. Right now my body is resisting the urge. Some others will also fade off over time. Already my morning BP pills seem to be doing too much for me.
On Friday I also got to visit Annie at school, where her class was doing a living wax museum called "Dead & Famous." They each portray a famous dead person and when you approach them they recite a written mini biography they did as part of the project. Here's Annie at her station. I remember after this was over all I wanted to do was to crawl into bed and rest. It was harder on me than I had expected.
At home I rested for a while and then I wrote what I hope to be the last entry into my "Diary of a Wimpy Kidney" blog.
My mom and dad and another sister were in town from Florida for a few days and it was pretty much the only chance to see them. It was there that this picture of me was taken and man do I look like the drunk uncle.
At home I rested for a while and then I wrote what I hope to be the last entry into my "Diary of a Wimpy Kidney" blog.
Saturday Oct. 28
Saturday began with an early morning visit to the clinic in Boston to get some blood work done. While there I mentioned my drain was still bleeding... oh right, you probably don't know about the drain.
So when they do all that work inside of me to tie my kidney in to my body, not to mention all of the cutting through layers of my flesh and fatty tissue and the myriad stitches that tie me back together. There's a lot of bleeding that will still occur at those sites. So they put a little tube into the general area connected to a suction ball outside of my body to help remove all of the blood and various other body fluids that gather in that area. They pull that out before I leave the hospital, but it leaves a tiny open hole that needs to heal and might still bleed a bit so I just have to watch it and keep it bandaged until it stops.
Anyway, back to the clinic. I mentioned the still bleeding drain and they tried to bandage it with those little butterfly bandages that sorta work like a stitch. Then added a compression bandage over that.
When I had left on Thursday I forgot my phone charger so we went upstairs to see if they had it and we bumped into a nurse who asked us what we were doing back. We told about the charger and that we were here for labs and had the drain re-bandaged because of the bleeding. And she asked if we wanted one of her doctors to take a look at it. We figured why not.
This doctor looked and the new bandages were already soaking from the bleeding so she recommended a stitch. We went for it. That seemed to help. After that we were on our way back home.
A few hours later I went to a little family gathering at my sister's house.
I was there with my daughter Amber and her baby Teagan. We had discussed only staying for two hours because I knew I would need to get home and rest. It was a great visit. We saw my parents, four of my five siblings, several nieces and nephews and some of their children. Before leaving my niece Erica wanted a picture with me. I decided to do one with the surgery site exposed... not a good look. Because of the surgery my belly is all lopsided and distorted.
So ends week one of recovery. If you can stomach it, read on to learn about even less exciting week two.
Sunday Oct. 29
Sunday was mostly down time and in my boredom I came up with this: "So I did a little math and the numbers are approximate. In 4-1/2 years I've done 2400 hours of dialysis and over 1400 needles stuck into my arm", which I then posted to FB.
Also by now I hadn't been able to have any successful movements of my bowel. Something the transplant team really wanted me to accomplish. So I had made it a goal to try and use laxatives to help me get there.
We ate dinner over our friends house and after dinner my mouth began to water... my gut began to ache... I was going to blow chunks. I went to the bathroom but when I got there it all started going the other direction. I took to the seat as quickly as I could and within moments my gut began to squirm and five pellets later I had had my first BM since surgery a week earlier.
Monday Oct. 30
Our first early doctor's appointment day. Up at the crack of dawn out by 5:30 am for a 7:00 am appointment in Boston. Turns out the doctor doesn't even get in until 10:00, so why we needed to be there so early was beyond me. Also we were forgotten for a while, but Meg put a bug in someone's ear and we finally were seen.
My stitch from Saturday wasn't really helping and so I was still bandaging as well. I mentioned it to the doctor and he took a look and didn't like the hematoma forming behind it and so he brought in an expert and they agreed they needed to remove the stitch and just let it bleed, or ooze or whatever it was trying to do. Otherwise all my numbers were excellent and the doctor felt this would be a really great kidney for me.
Back home I had more success on the BM front. Then rested up.
Tuesday Oct. 31
Sunday Night's Storm led the city to postpone Halloween to Friday night. Tomorrow morning Annie leaves for a three day camping trip with school. I had an appointment with my PCP, she was thrilled to hear that I had my transplant. I had lost so much weight though that she told me I looked like a boy. After the doctors we needed to run an errand and then did some grocery shopping. At the grocery store I kept my mask on... lots of sick people out in the real world environments. Got to make some efforts to stay healthy.
Wednesday Nov. 1
Woke up feeling fine. While making my tea and toast I suddenly felt the urge to throw up. I spent the next several hours throwing up and eventually ended up in the emergency room in Boston with my body convulsing and my bucket at the ready because I didn't know if I would throw or not. After several hours in the ER they admitted me for the night and by 2:00 am I felt fine. The good news was that there wasn't any sign of rejection.
While they never could say what it was that happened, Meg was convinced it was my visit to the grocery store. The doctors decided to go with it being a reaction to a certain med I was on and changed that med out. Personally I think I've got digestion related issues going on, what with all the minimal BMs and the fact that I've been getting unexpectedly full every now and again. Maybe I need to look into portion control and take the lack of any BMs into account as I make food choices.
Thursday Nov. 2
Released from the hospital, a week after being released from the hospital, I begin a second week of trying to recover at home. On the way home we treated ourselves to some Santarpio's Pizza on Route 1. Also on the way home, Meg had said something funny and a little laughter like nothing I had ever done before came very naturally out of me. She asked what was that? We decided it was a Kevin influenced laugh. The very thought of it made us laugh more. It was a good ride home.
At home the house felt a little empty without Annie, but Meg took advantage of the situation and slept in Annie's bed for some much needed peaceful sleep. This also gave me a better night's sleep as Meg is a classic snorer. Note: I'm probably as much a snorer... but I'm always asleep when I snore so I can't really hear myself.
Friday Nov. 3
Another day of mostly rest. I wrote about food in hospitals and posted it to FB. Then began working on the layout for the blog I'm now writing. Health-wise... every day I feel a little better. Also my drain has finally healed over so I'm no longer bandaging that.
Saturday Nov. 4
Aside from purchasing a new to me, used dresser, not too much going on today. I used much of the day to continue working on the new blog and resting up.
Sunday Nov. 5
Finally got the first draft of the blog laid out and added a single entry along with a disclaimer. Another day of errands and grocery shopping followed by some much needed rest and the efforts to start this very long and relatively boring recap of what my first two week recovery period looked like.
Week two was less interesting than week one but for the added overnight at the hospital. All entries going forward should be more about specific events and or accomplishments. Perhaps some updates based on doctor visits and or changes in my meds or overall health. I'll try to make sure it's always more interesting than this recap.
One thing though... I used to end each entry on my Wimpy Kidney blog with the same tag line, it was a way to sign off as well as take ownership of my situation... "My name is Bil... and I have kidney disease." I feel like I need a similar tag line here but nothing has come naturally... so if you think of something as the reader looking in... feel free to make a suggestion.
Thanks
P.S.
Here are some samples of some of the tag lines I've decided not to use:
"My name is Bil and I still have kidney disease but I also have a new kidney to help me live a more full life."
"Words to live by from the drunk uncle."
"That's all I got folks."
"Smoke em if you got em."
"If you didn't change the world today, try again tomorrow."
"If you can't change your world, change yourself. And if you can't change yourself, change your world" - Matt Johnson
all of these are either too dorky or too deep. I need something casual, brief, and not preachy.
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