Transplant Testing Round 4
Life has been positively nutty lately. I'm finally getting around to writing an update from the last couple of weeks. I don't love waiting this long because my memory just isn't what it used to be. Let's see if I can get everything in here...
Last Wednesday, my mom and I had another full day of testing and appointments at UTSW. This was the last set of big tests for transplant testing. I started the day with a nuclear stress test. Originally, they told me that - because most dialysis patients don't feel well enough to do the treadmill stress test - I'd be doing the kind where they give you medication that causes your heart rate to increase artificially. I thought this would be strange because I'd be sitting still, and my heart would be beating fast, as though I was doing heavy cardio.
When they called the day before to give me pre-op instructions, they asked if I was able to walk on the treadmill, I told them I was, and they decided to switch my test to a traditional stress test. That morning, when I checked in, they told me that I might have to do a two-day version of the test, depending on the clarity of the images. I found that slightly frustrating, but I know they have to do what they have to do.
They started by putting in an IV and getting my baseline vitals. Then, they determined my target heart rate based on my age. Next, I got hooked up to an EKG, pulse oximeter, and blood pressure cuff. I also had a physical therapy safety belt on in case I fell.
They got me going on the treadmill. In my left arm, I had the IV. I had the EKG tabs all over my chest with a monitor belt, a safety belt, and my right arm had the blood pressure cuff and pulse oximeter. They increased the speed and incline of the treadmill until my heart rate reached the target. Every few minutes, they'd take my blood pressure. Once I hit the target heart rate, another nurse came over and injected a radioactive dye into my IV. What a sight! I felt like a bionic woman with all those belts, monitors, tubes, and cuffs. Sheesh!
After the treadmill part was over, they took me to a gamma scanner machine where I laid down for 20 minutes or so, and it took pictures of my heart and veins. It had been an early morning, so I was grateful for a 20 minute power nap!
Following that test, I had to prepare for my abdominal CT scan. Due to my renal failure, I can't have IV contrast, so I got to drink a lovely barium sulfate shake. After 40 minutes, I got the abdominal CT scan.
My mom and I went and got some brunch from the cafe in the physician building, and then we went up to see if I could see the infectious diseases doctor. Since I had done the physical stress test instead of the version with the medication, I had finished the testing much earlier than anticipated. Unfortunately, the doctor wouldn't be available until my official appointment time, so Mom and I played a LOT of Solitaire sitting and waiting for a couple of hours.
That afternoon, I met with the infectious diseases doctor. I had been feeling mildly anxious about this visit because of the infection-apocalypse of 2011. We talked a lot about my previous infections (CMV, staph, cytomegalovirus, etc.). Basically, because I have a history of those infections, it's possible that I might be more susceptible to them again in the future, particularly after transplant, when my immune system will be at its lowest. He spent about half of the visit going through my personal history of disease and contaminant exposure. The second half of the visit was spent discussing ways to prevent infection post-transplant.
These are some of the highlights from that conversation:
1. Six months seems to be the magic number. After transplant, my immune system will be very low, so it will probably take me a good 6 months before I'm able to resume some normal activities. For example, I can't hike outdoors for six months following transplant due to fungi and bacteria in the soil. Also, because I work with kids, I will probably need a longer recovery... possibly up to six months... before my immune system can handle being back in a classroom. Even then, I'll have to be very careful.
2. Being a teacher = higher risk of infection.
The doctor asked me, "What do you do for a living?"
I replied, "I'm a teacher. Eighth-grade English."
"Ooh. So... how much do you love what you do?
"Um, I love my work. Why?"
"Well, I'm not going to tell you to quit your job."
"Um, okay."
"But - You need to be aware that working with students will put you at a higher risk of infection."
So, yeah. While he wasn't exactly telling me to quit my job or change careers, he was definitely encouraging me to keep in mind that I will need to be careful. Very careful.
3. My lifestyle may need to change a bit. After transplant, I will always need to be careful to avoid crowded shopping malls, festivals, and events. I'll have to be super careful and diligent about wiping down shopping cart handles and using antibac gel after shaking hands with people, touching handrails, etc. No more tuna nigiri sushi, runny yolks, or medium-rare grilled meats.
Last Wednesday, my mom and I had another full day of testing and appointments at UTSW. This was the last set of big tests for transplant testing. I started the day with a nuclear stress test. Originally, they told me that - because most dialysis patients don't feel well enough to do the treadmill stress test - I'd be doing the kind where they give you medication that causes your heart rate to increase artificially. I thought this would be strange because I'd be sitting still, and my heart would be beating fast, as though I was doing heavy cardio.
When they called the day before to give me pre-op instructions, they asked if I was able to walk on the treadmill, I told them I was, and they decided to switch my test to a traditional stress test. That morning, when I checked in, they told me that I might have to do a two-day version of the test, depending on the clarity of the images. I found that slightly frustrating, but I know they have to do what they have to do.
They started by putting in an IV and getting my baseline vitals. Then, they determined my target heart rate based on my age. Next, I got hooked up to an EKG, pulse oximeter, and blood pressure cuff. I also had a physical therapy safety belt on in case I fell.
They got me going on the treadmill. In my left arm, I had the IV. I had the EKG tabs all over my chest with a monitor belt, a safety belt, and my right arm had the blood pressure cuff and pulse oximeter. They increased the speed and incline of the treadmill until my heart rate reached the target. Every few minutes, they'd take my blood pressure. Once I hit the target heart rate, another nurse came over and injected a radioactive dye into my IV. What a sight! I felt like a bionic woman with all those belts, monitors, tubes, and cuffs. Sheesh!
After the treadmill part was over, they took me to a gamma scanner machine where I laid down for 20 minutes or so, and it took pictures of my heart and veins. It had been an early morning, so I was grateful for a 20 minute power nap!
Following that test, I had to prepare for my abdominal CT scan. Due to my renal failure, I can't have IV contrast, so I got to drink a lovely barium sulfate shake. After 40 minutes, I got the abdominal CT scan.
My mom and I went and got some brunch from the cafe in the physician building, and then we went up to see if I could see the infectious diseases doctor. Since I had done the physical stress test instead of the version with the medication, I had finished the testing much earlier than anticipated. Unfortunately, the doctor wouldn't be available until my official appointment time, so Mom and I played a LOT of Solitaire sitting and waiting for a couple of hours.
That afternoon, I met with the infectious diseases doctor. I had been feeling mildly anxious about this visit because of the infection-apocalypse of 2011. We talked a lot about my previous infections (CMV, staph, cytomegalovirus, etc.). Basically, because I have a history of those infections, it's possible that I might be more susceptible to them again in the future, particularly after transplant, when my immune system will be at its lowest. He spent about half of the visit going through my personal history of disease and contaminant exposure. The second half of the visit was spent discussing ways to prevent infection post-transplant.
These are some of the highlights from that conversation:
1. Six months seems to be the magic number. After transplant, my immune system will be very low, so it will probably take me a good 6 months before I'm able to resume some normal activities. For example, I can't hike outdoors for six months following transplant due to fungi and bacteria in the soil. Also, because I work with kids, I will probably need a longer recovery... possibly up to six months... before my immune system can handle being back in a classroom. Even then, I'll have to be very careful.
2. Being a teacher = higher risk of infection.
The doctor asked me, "What do you do for a living?"
I replied, "I'm a teacher. Eighth-grade English."
"Ooh. So... how much do you love what you do?
"Um, I love my work. Why?"
"Well, I'm not going to tell you to quit your job."
"Um, okay."
"But - You need to be aware that working with students will put you at a higher risk of infection."
So, yeah. While he wasn't exactly telling me to quit my job or change careers, he was definitely encouraging me to keep in mind that I will need to be careful. Very careful.
3. My lifestyle may need to change a bit. After transplant, I will always need to be careful to avoid crowded shopping malls, festivals, and events. I'll have to be super careful and diligent about wiping down shopping cart handles and using antibac gel after shaking hands with people, touching handrails, etc. No more tuna nigiri sushi, runny yolks, or medium-rare grilled meats.
The infectious diseases doctor also wanted me to get a baseline CT chest scan. There was concern that the cytomegalovirus might have made its way into my lungs, and since that was the fungus that gave me the "crazy days" in 2011, I didn't remember what tests had and had not been done, what the results were, or other details of those infections. With a current CT scan, he would then be able to establish a foundation from which he could compare subsequent scans.
My mom and I made our way back to the imaging department so they could get my chest CT before leaving for the day. As we were sitting in the waiting area, we were seeing people who had arrived for work while we were waiting for my nuclear stress test leaving for the day. It was a long day.
We headed back to Plano, picked up Mike, and stopped for a bite of dinner.
Then, this last Tuesday, I went to the UTSW Richardson office for a cystoscopy. This test is like a PAP smear for bladders. Because of my history of urinary tract infections, as well as the fact that I took Cytoxan (which has been linked to bladder cancer), I had to get a test done where they take a narrow scope and get a good look at the bladder wall. During this test, they found a small cyst, so they took a sample of cells from it. Although they don't think it's cancer, I got a call today saying that they'll need to do a second procedure where they remove a biopsy from the cyst. I'm actually not very nervous about this test, but it is another hoop that we'll need to jump through in coming weeks.
We're nearing the end of the school year (only 2 weeks of school left!) and some of my "high-flier" kiddos are starting to come apart a little. It's a rough time of year to be out. But, when the transplant scheduler calls, you make plans and take the day. So, next Tuesday, I have an appointment for lab work and a consultation with the transplant surgeon. The purpose of this meeting will be to determine how my body will respond to surgery. I've been doing my "drop it diet," and I'm down a few pounds, but I still have about 14 to go. We'll see what the surgeon says on Tuesday, and in the meantime, I'm enjoying protein shakes and lots of raw veggies.
The other night, I was messaging with my pre-transplant coordinator, and she said that she intends to present me to the transplant committee in the next couple of weeks. The date for that may vary depending on when I can get in to get the bladder cyst biopsy, as well as feedback from the surgeon's meeting.
One of the nurses explained to me that - because they can't start testing my living donors until I'm listed - they may present me to the committee and decide to list me as "inactive." This would allow them to start testing my donor. It would also allow me an additional 4-6 weeks (the time it takes to test the donor) to get to my goal weight. I'm still hopeful that I'll be able to see the endocrinologist soon, but in the meantime, I'm continuing my "drop it diet" and Weight Watchers. I know that I have to be patient and rest assured that the wheels are moving and everything is progressing one step at a time.
Thank you so much for all of your love, support, thoughts, and prayers. I appreciate you all more than you know.
#teamkidney
I remember a year ago doing some of those tests. The nuclear stress test was awful for me! As soon as they started it, I went into a panic attack and started vomiting non-stop. It was very traumatic. I'm glad you were able to do the treadmill.
ReplyDeleteOh, no! That's terrible! It was definitely challenging to walk/jog with all that stuff on me! I'm so sorry that happened to you!
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