Warning: there are some photos that might make you squeamish....I'm sorry if it does but want you all to see what this is like
Okay, where were we? Yes, slumber and surgery.
My surgery started at 3:00pm, and Joacim made it to Mayo at 3:20pm, so I didn't get to see him before it. I wonder what that was like for him...you know, having a 4 hour drive from up north to contemplate what was happening and start planning for how we'll handle everything logistically. Then going home to pack who knows what for a stay here for who knows how long, get Izzy and Tucker settled and THEN driving to Mayo and finding a hotel for us and my parents....it just must've been so much.
And all on his birthday. That's right, I got a new kidney for Joacim's birthday!!!! He won't ever forget the date of this transplant.
Anyway, surgery went well. The kidney was put on the left side this time because Adam's kidney is still in my body on the right side...they don't remove non-functioning kidneys unless they're causing problems, and his is not. Physiologically this is a more difficult location due to anatomy (here's what Claude.AI gave as an explanation for this:
The left-side placement for your second kidney transplant is indeed more challenging for several anatomical and surgical reasons:
Vascular anatomy differences: The left iliac vessels (where transplant kidneys are typically connected) have a different configuration than the right side. The left common iliac vein lies deeper and more medially positioned, making it harder to access and work with during surgery. The surgeon needs to work around more complex vessel branching patterns on the left side.
Previous surgical scarring: Since you already had surgery on the right side, placing the second kidney on the left means working in a completely new surgical field. However, the left retroperitoneal space (where the kidney sits) can be more technically demanding to access initially compared to the right side, which is typically the preferred side for first transplants.
Anatomical space constraints: The left iliac fossa has slightly different anatomical relationships with surrounding structures. The sigmoid colon and its mesentery can create more crowded conditions, requiring more careful dissection and potentially a larger incision to safely place the kidney and create the vascular connections.
Surgical approach complexity: The angle and depth required to access the left iliac vessels often necessitates a longer, more extensive incision. This allows the surgeon better visualization and working room for the more technically demanding vascular anastomoses (connections between blood vessels).
Ureter implantation: While not dramatically different, the path for connecting the new kidney's ureter to your bladder may require slight modifications in surgical technique when working from the left side.
The larger scar and longer operative time reflect the additional technical complexity, but left-side kidney transplants are still very successful. Your surgical team chose this approach because it was the safest option for your specific situation.
By 7:18pm, Joacim had posted in a group text the following:
Jenn is in recovery. They did an ultrasound and everything looks great. BP is a little low but Doc isn’t worried. She might go to the ECU for monitoring. I should be able to see her in a couple of hours.
I hardly remember being in recovery...the only thing I remember were multiple people telling me to breathe deep. I tend to be hard to wake up after a general anesthesia, and I breathe so slow that my heart rate drops too low, so they try everyone to wake me up but all I want to do is sleep. I didn't feel any pain at this point as I was still pretty knocked out, but I was in recovery for a little longer than usual (I think) because of my low blood pressure. They were trying to decide if I should go back to my original room under General Care, of if I should go to the ICU for closer monitoring. They eventually decided ICU because of my BP, and I spent 3 nights there monitoring me, giving me infusions for transplant, giving me meds to raise my blood pressure, pumping me full of prednisone and antibiotics. It's all pretty standard stuff, but I'm glad I was there. It's a very low ratio of nurses to patients and I needed all the care and help I could get.
My first night there was brutal though. My bed was in the middle of the room, right under a vent that blew ALL NIGHT LONG, and we couldn't get the temperature to stay where I wanted it, so it felt like cool air. I eventually got the chills and those bone-deep shudders. It was painful being that tense, and I felt like I was strangling in blankets. I even tried to cover my head, which helped but wasn't very practical. I hate breezes blowing on me in the hospital. I had great nurses, and the food was pretty decent. My nurse eventually moved my bed closer to the door and wall in order to avoid the breeze which was a lifesaver!
I sat up the day after surgery 2 times in a chair. I think I had dialysis again this day to help with my electrolyte balance. By the 3rd day I was started walking, at first assisted with a walker and a nurse associate (I know that's not the name for them, but I don't know what to call them). It's pretty painful at this point, and I can't stand up straight at all...I feel like I have absolutely no deep core muscles, and the skin around the incision feels so tight.They told me about a Methodist Mile competition in that if you walk a mile while in the hospital you could get a free t-shirt, and I was determined to get it. I was moved from ICU to General care the afternoon of Day 3 and walked assisted by pushing a wheelchair all the way over there. Day 4 had no dialysis or anything, so I watched a lot of cringey TV shows (think Charmed or Bones) and was happy. Day 5 came, and I finished my Methodist Mile and got my Foley catheter removed (bladder), did more labs (this was a multiple-time per day occurrence, and was discharged to go to the hotel
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| Methodist Mile t-shirt |
I got fairly decent sleep throughout this time (except that first night). Most of the people coming in started around 5:30-6:00am, with my nurse coming in to give pain meds and check my urine output and incision drain output, and then labs, and then nurse again to give Immunosuppressant meds, and then General Care rounds, and then Transplant rounds, and then more nurses and meds, and sometimes hanging a bag of lasix to help my kidney remove some of the extra weight I was carrying, and then remind me or order meals, and then someone to bring them in. An ever rotating cast of care providers.
To give you an idea of how much weight, my "dry weight" the day before my transplant was 69kg. This is a term used to estimate your "true" weight when you've pulled off all the "extra" fluid. After surgery, I think I was up to 77kg. If you need a conversion, that's 151.8lbs to 169lbs. I felt so full....it was so hard to breathe, but I asked for one of those breathing things you see that help you train you to draw deep breaths again because I didn't want to get pneumonia. I was given fluids during surgery, and told that my body was in shock, and my internal organs were also, and they were holding on to a lot of fluid, so it was going to take some time for it to come down. I'm down to 73.4kg (161.5lbs), so the kidney is perking up. We estimate I'm making somewhere along the lines of 2.5L of urine right now (based off the frequency that I have to go and the amount I go each time, which I'm estimating to be 250ml). It's going to take some time for my tiny little bladder to stretch and expand to that of a normal person's, and it's good to do this slower so as not to risk that sutures that are there from connecting the donor kidney's ureter to my bladder. At some point during my hospital stay I looked at my belly button and freaked out because it was essentially "missing" due to the swelling. At first I was swollen everywhere....eyelids to toes. But each day I saw a little improvement, starting from the top and moving down, and so I just stayed patient with everything.
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| eyelid swelling right after surgery |
That's what was so different about this time. My first transplant was full of emotion (mostly anxiety), trying to absorb everything and all the numbers. But this time I was just....chill. Like not dead inside but not anxious. I keep my hope under wraps because it's too hard, but I'll say I'm better off at this point now than I was the last time, both mentally and physically.
So, Joacim and I are staying in a Residence Inn for at least the 2 weeks post hospital discharge. I usually have labs in the morning, and various other appointments during the day. I meet with the transplant nephrology team most frequently but there are also visits with a social worker, dietitian and pharmacist. It's not terribly busy, and there's lots of down time, which is nice. Joacim can get some work done and calls made, and I can rest and keep my feet up to help the swelling in my legs. I left the hospital with an incision drain that's stitched to my abdomen inside and out. I was having some leakage at the site where the drain line comes out, so they put a urostomy bag around it to contain that leakage too. I have to empty the little bladder for it fairly frequently, as I'm draining about 450ml of fluid from the area around my new kidney per day, and write down the times and amounts. So now I carry a little plastic measuring cup around in my purse and a notebook everywhere so I can do that. Also trying to get my head around my meds. Some have to be taken at exact times so trying to stay on top of that too.
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| too many meds |
We've got a nice room...it's a newer hotel and they have breakfast available so it was an easy choice. It's like a studio with a bed, sofa and nearly full kitchen, so we're set. Sometimes we go out to eat, and sometimes we just hang out here and eat groceries we've bought. The last 2 nights were spent watching the NBS conference finals. We had AMAZING food at a placed called First Meeting Noodles. Think hand-pull noodles stir fried or in soup. I ordered pork wontons in chili sauce and Mongolian Beef Friend Noodle, and they were AMAZING. The chili in the wontons set off like a volcano the heartburn I've been dealing with. Even the hot green tea was irritating. Coffee too. Anything temperature or spicy hot wrecks me. I had heartburn the last time due to prednisone, but it's 10 times worse right now. All of my abdominal swelling is aggravating the reflux that I have, so I eat very bland foods, and very small amounts. And drink a lot of water.
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| My bland snacks |
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| Water is my best friend! |
We were done with appointments today by 11, so we've been back at the hotel. I'm resting in bed, online shopping, keeping up with my email, reading ALL the newsletters I subscribe to, and writing these posts. Joacim's gotten some work done, attending a few calls, and is now working out in the hotel gym. He still has his annual summer solstice mountain bike race in Canada in June that he's trying to stay in shape for it. Being here can make that so challenging, and it's easy to lull into lazy, but I'm proud of him.
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| my current setup |
He's been a great caregiver so far, attending to all of my needs. We haven't argued about anything, and he's been kind and patient. Honestly, just perfect.
I'll have labs again tomorrow, and there was some talk about doing an ultrasound around the kidney due to some of the swelling and pain that's happening around there, so we'll see. I've got a gnarly scar that goes from my left hip all the way across my pubic bone (probably 6 or 7 inches??), and this drain line sticking out of my abdomen, and some of the worst bruising I've ever seen. I have a bruise that covers the entire front part of a bikini...like DEEP purple, extending down the front of my thighs. The bruising doesn't hurt, thankfully.
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| this is what I'm dealing with |
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| You can get an idea of the bruising too. It's solid dark purple under my underwear |
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