I promise this is the last play-by-play post of my transplant. I wanted to get the experience written down so that I’ll have it. That also means this post is a long one. Thanks for reading along.
Our first week at home after being discharged from the hospital was relatively, thankfully, uneventful. Before having surgery, I remembered other patients telling me that the first weeks after transplant are all about sitting around waiting to take the next round of medication or go to the doctors. This is absolutely true.
I got organized first thing.
There is a lot to keep an eye on with a new organ. Each day is mostly resting, only punctuated by the routines that come with managing a transplant. My rest was also happened to be punctuated by a kidney that was producing urine at record speed. I had to drink at least 8 glasses of water each day which meant that I was headed to the restroom at 30 minute intervals, at least it sure did seem that way. Apparently it takes a while for the new kidney to remember how to concentrate urine. (I’m pretty sure that was TMI.)
On Monday and Thursday mornings I would go to the lab for a blood draw. Tuesday was clinic day when we would meet with my doctor. Weight, blood pressure and temperature were taken and recorded each day. I took meds at breakfast, lunch, dinner, 9am and 9pm. Phillip and I also tried to get up the energy to walk the block once daily. And that was pretty much my life for the first week. Well, that and Food Network which I wrote about here.
Thursday of that week was the first time I did my hair and makeup. KCRA was coming by to follow-up on us and I had already done the ‘be on TV without makeup’ thing once. Getting sort of dressed and put together really did make me feel better. Here’s the news segment that came out of their visit:
Our first Saturday home was also our 11 year anniversary. As is customary, we only exchange cards and spend gift money on a trip, usually a long weekend somewhere driving distance from our home. This year our trip was two rooms across the hall in the hospital. I wouldn’t have wanted to be anywhere else.
Our anniversary morning was a lot of lounging around in our pj’s. That afternoon we decided to take our first post-transplant outing in the form of a drive. We headed toward the Sierra Mountains to catch a glimpse of the fall leaves. This was both a good and not so good decision. Because I was constantly peeing, I ended up needing to use the restroom at a Starbucks in the mountain town we drove to. The intent of our drive was for me to stay in the car due to my immune suppression and a public restroom doesn’t count as sanitary. I used paper towels and a few impressive maneuvers to avoid touching anything, and I bathed myself in hand sanitizer when I got back to the car.
I started feeling a bit tired that Saturday, but told myself that it is part of healing from major surgery. Sunday was a different story.
Sunday I was exhausted. I had a hard time standing for an extended time and could have easily slept the entire day. We had a few, very sweet and generous, visitors that day who brought us food. I tried to be sociable, but mainly felt like a zombie. At 9PM, I started having chills.
I had a feeling I had a fever, but didn’t want to worry anyone, so I snuck into the bathroom and took my temperature with the water running so my mom and Philip wouldn’t hear the thermometer beep. My instinct was correct. My temperature was 100.7. Anything over 100.5 and I was instructed to call the on-call transplant coordinator.
When I came out of the bathroom, I said, “Please don’t be alarmed, but I have a fever,” and I picked up my phone to make the call. I really thought I was going to be told to go to the emergency room; however, I was instructed to take some Tylenol and go to sleep and re-take my temperature if I woke up in the middle of the night and call back if it was over 101.5.
At 2AM I awoke, shivering again. My temp was 101.7. This time I was instructed to head to the ER. We were having a setback.
Just chillin’ in the ER.
That is one good thing about being immune suppressed: you don’t have to wait in the general waiting room of the ER with all of the other germs. Once we told them that I had gotten a kidney transplant last week and my temperature was confirmed by the triage nurse, we were whisked back into one of the ER cubbies.
Two IV lines were started to take blood cultures. I got a chest x-ray. I gave a urine sample. Fluid and IV antibiotics were hung. Oh, and I got a shot of morphine (hurray) because my back and legs were super achy. The transplant residents were down to see me and order an ultrasound of the kidney within the first hours of arriving. I felt very well taken care of. We were also very worried.
There is always concern of organ rejection with a transplant and having a fever is one of the signs of rejection. Fortunately, the verdict was that I had a urinary tract infection that, unfortunately, had spread to my blood. The fatigue and fever were from a blood infection.
Eventually I was transferred to the transplant floor were all of my wonderful nurses that I had seen just over a week ago welcomed me back. I needed to stay in the hospital on IV antibiotics until my urine and blood were fully cultured to determine what specific antibiotic I needed to be on to fight the infection. During this second, way too soon, hospital stay they decided to remove the stint that had been placed during surgery.
The stint is a small piece of plastic that supports and holds open the new connection between the kidney’s ureter and the bladder. This is normally removed after 4 or 5 weeks. We were in week 2. There was some risk of having that opening collapse; however, the greater risk for me was that bacteria had colonized on and around the plastic and that I couldn’t get rid of my infection without having that gone.
On Tuesday morning, I headed to the operating room to have my surgeon remove the stint. This was a very quick procedure that didn’t require general anesthesia. I was in and out in less than an hour-and-a-half. One of my least favorite parts of being in the hospital is being wheeled around in a bed by someone else. It feels so helpless – I always want to tell them that I can walk myself to where ever we’re headed. Phillip decided to capture the moment:
I’m giving him “the look” here, but that is very hard to do with a mask on.
This bump in the road was a definite wake-up to what being immune suppressed can mean. The Thursday before I got sick, my urinalysis that was done as part of routine lab work was clear. Hence, in three days, I had a UIT start and go from my bladder to my blood. The tough part of immunosuppression is that by the time symptoms show up (fever, fatigue), the infection is pretty far gone.
On Wednesday, my cultures came back and it was decided that I would go home on a course of oral antibiotics. This UTI had slipped past the dose of bactrim (an antibiotic) I was taking, so after meeting with the hospital infectious disease specialist, it was decided that when my course of heavy-duty antibiotics was done, I would go back on a prophylactic antibiotic I had previously taken that had proved successful with preventing UTIs.
I felt really guilty for this slip-up. I know it was worrying to my mom. It was also concerning to me because I tend to be prone to UTIs. I was assured several times that there wasn’t anything I could have done to prevent this. Forty-percent of transplant patients end up back in the hospital for something during the first year, and thirty-percent have a UTI. It happened. We got through it. Happy to be home again.
Since our setback, everything has been smooth sailing. I’ve been taken off of a few medications. My lab work has gone from twice a week to once a week, and my doctors appointments are now every three weeks. My lab work is stellar. We could not be more thankful to have had an uneventful last few weeks.
Phillip is back at work. I have been resting and slowly getting my energy back. My red blood cell count is increasing, not quite normal yet, but the new kidney is working on it.
I am still working on processing everything that has gone on in our lives. It is hard to capture a miracle – even in your mind – even after it has already happened.
Catch up on our kidney transplant story here: