Along for the Ride

Well, hello, there, friendly blogger friends! It's been a while since I've dusted off the ol' blog, and like most medical update websites, that's because no news is good news. Things in my medical mystery tour have been going swimmingly, and I've been doing very well, all things considered.  Of course, there are things going on in the world...LOTS of things, in fact.  But one of the biggest things recently has been COVID-19. As a transplant recipient, I've been following developments of the novel coronavirus diligently since January when the first rumblings of this illness began making their way into the news. At first, we all just kind of assumed that this would be one of those things that would creep up and then just sort of disappear, but man...we were wrong. This illness has shut down life as we know it. Social media feeds are filled with people bickering over whether masks are political statements, whether our government has responded appropriately and done...

I can't quite believe this, but yesterday marked 8 weeks from transplant!  Things have been going very well during these last two months.  I've been recovering at home, and I've enjoyed some relaxing time reading, watching Netflix, and catching up on household chores. When I was released from the hospital, I had Steri-strips along my incisions and a list of activity restrictions: no driving, no lifting, no exercise except gentle walking in the house, no crowds, no shopping at stores, no visiting kids, and no time spent outside.  Since then, some of the restrictions have been lifted.  I can drive again, and I can go outside for short periods of time as long as I wear a surgical mask.  I can go to stores as long as they aren't busy (so no weekends or evenings), and I have to wear my surgical mask at all times, clean my hands thoroughly, and wipe down the carts.  Needless to say, we've become BIG fans of curbside pick-up for groceries and Amazon for delivery...

I am sitting down to write this entry a full four weeks post-kidney-transplant!  That's right!  On Sunday, May 13, I got "the call" and received a kidney transplant in the wee hours of the morning on Monday, May 14, 2018.  For the last few weeks, I've been thinking that I wanted to get online and write up a series of blog posts about that experience.  Believe it or not, despite being in recovery from surgery, those four weeks have been super busy!  So I'm just now getting around to gathering my thoughts and putting digital "pen to paper." First, to clarify, I was technically listed on two transplant lists.  I was placed on the deceased donor list just last summer.  However, because they count your dialysis time as "wait time," I had accrued almost 6 1/2 years of wait time on the list, which put me pretty close to the top.  The average wait time in the DFW area with my blood type (O+) is 6-7 years, so I knew that it was possible I could get ...

Well, hello there!  Guess what?!?!  I have an UPDATE!!!! Y'all may remember that I mentioned in my last post that I had a potential living donor who has generously volunteered to go through the testing process. Well...he isn't a match for me. BUT... he's open to a paired donation, which is where they match us with another pair (or multiple pairs) to swap kidneys.  So, in other words, he won't donate directly to me.  Instead, his kidney will go to another person on the list who also has a living donor.  Then that living donor (or another one) will give to me. So...the news is that he is approved and now fully listed! The way I envision this is... Imagine you're going to a concert.  You get in the line, buy a ticket, and now you're in the venue with thousands and thousands of other people.  Groups of people are in their sections, but they aren't allowed to go to different sections.  This is like the cadaver donor list.  Lots, an...

Greeting and salutations, dear friends! Happy 2018!  I hope you've had a wonderfully relaxing holiday break.  I know we have!  Tomorrow, it's back to school for me, but Mike has the rest of the week off as his post-holiday PTO (personal time off).  I'm sure he'll enjoy a quiet house for a few days! I thought I'd pop online and a post a quick entry just to fill everyone in on the progress for #teamkidney. Basically, I'm still waiting.  All of my potential direct donors have been eliminated, but I do have one more very generous donor who is open to doing a paired donation (where h/she will donate to another person who will then have someone donate to me).  They are getting started on the workup and testing for this potential donor, so we shall see how that goes. The donor process is completely confidential, so - understandably - my docs and transplant team don't give me any updates on the donors.  The only way I know anything is that this potenti...

Greetings, fine friends!  Look at this!  Two updates on the same day?!?!  Yup. Today my mom and I went down to UTSW to see the infectious diseases doctor for a follow-up.  He still wants me to try to track down some documentation of my vaccinations from when I was a kid.  Apparently, I have antibodies for mumps and rubella, but not measles.  With the increase in anti-vaccine parents over recent years, he's concerned about me returning to the classroom without documentation of my vaccines.  Basically, if a kid comes in my room and happens to have skipped his/her vaccines, I could be in serious trouble.  So tomorrow I'm calling my university to see if they have any student records that would show my vaccines.  Public Service Announcement: Keep your vaccine records.  You just never know when you might need them. He also shared that - right after transplant - I'll be given three doses of an IV medication that will essentially wipe out al...

Hello there! The last few weeks have been somewhat uneventful at Chez Penny, but I do have some updates to share. First, this is pretty much the best way to depict my state of mind since being placed on the transplant list. Yep, that's right.  Every call results in a frantic reach for the phone.  Typically, it's just an automated voice offering me a free cruise or life insurance.  I have no idea how they get around the nomorobo, but alas... they do. So yeah, I'm pretty much just waiting. Mike was contacted and told to start his donor testing.  He went in at the beginning of July for glucose monitoring testing.  Unfortunately, his results came back slightly elevated.  They discussed his case at the transplant committee meeting yesterday and decided to deny him as a donor.  So today I got a letter saying that they have exhausted all of my potential living donors. Mike isn't giving up.  Even though he's already lost 30 pounds, he's dete...

Well, the transplant testing is now complete!  I am officially listed!  And now...we wait. Mike and I enjoyed a celebration dinner last night. Sushi, of course. Post-transplant, I'll have to avoid sushi and buffets. Sushi is my favorite food, so I'm filling up on tuna nigiri while I can.  Now that I'm listed, they'll start testing my living donor. Mike goes in for his blood work on Monday, so they haven't wasted any time getting him started.  They estimate that his testing will take 4-6 weeks.  They also told me 4-6 weeks, and I started in mid-April. The entire process for me wrapped up yesterday, so that was more like 10 1/2 weeks. Therefore, I'm taking the time estimate that they gave him with a grain of salt.  If Mike is the donor, we'll have the luxury of scheduling the surgery. That would allow me to prepare for a long-term sub at work and consider recovery time.  Of course, it's still possible that I could be offered a cadaver kidney anytime...

I'm sitting here in a nail salon getting a much-needed pedicure. Today is Mike's birthday, so  we have dinner plans, and I'm picking up a cake for him in a bit.  This morning my mom and I went down to UTSW for my bladder biopsy. The procedure was somewhat uncomfortable, but the good thing is that the little cyst they found a few weeks ago during my cystoscopy was gone. The doctor went ahead and took two little biopsies to be sure. After he cauterized the sites, all was done! It'll be a 3-4 days before we have the results.  This should be the last piece in my testing, so we're hoping that I'll be presented to the committee soon. The transplant committee only meets on Tuesdays, so the biopsy results probably won't be ready for this coming Tuesday the 13th. I'm hopeful that I'll be presented on the 20th. It's hard to believe that I could be listed by the end of this month! In other news, I've been enjoying my summer off so far. Since I back...

Whew! Another long day of appointments down! I originally thought that today would just involve labs and a consultation with the transplant surgeon, so I had arranged for my last two classes of the day to be covered.  I figured that I would leave around noon to head to the hospital.   But yesterday I got a call saying that I also needed to see the dermatologist. The only opening was at 10 a.m., so I ended up having to take a sub day. I'm trying really hard not to have to take any more sub days so that I have the extra time for leave after surgery, but at least I was able to make the most of the day with multiple appointments. My regular monthly dialysis visit was scheduled for Wednesday afternoon, so I messaged my nurse and was able to move that to 8 a.m. this morning. This prevents me from having to drive down to Dallas two days in a row. Thankfully, it all worked out, and I was able to start the day at my dialysis clinic. As far as dialysis goes, everything ...

Since all this transplant business has started, I've had several people ask me how I'm feeling about everything.  I figured this week was a good week to tackle that topic. The short answer is... overwhelmed. Earlier this week, Mike was out bowling with his buddies, and I was home alone. I knew my mind was reeling, so I decided to distract myself with a chick flick on Netflix, but as soon as the ending credits began to roll, my mind quickly returned to its looping cycles of anxious thoughts.  So I called my mom. That's what every grown woman does during times of stress, right? Anyway, I cried. For the first time, I let it all out. My fears, my anxieties, and my emotions. So you might be wondering... But why are you crying? Aren't you happy?  You're getting close to getting a transplant! OF COURSE I am! I'm ecstatic!!! But there's also fear. I fear letting people down. I fear getting some terrible news or results from some test. I fear complications du...

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 switc...

So tomorrow I head back to UTSW for some more tests. Everything is moving and grooving, and so far my tests are coming back well. But... I'm 17 pounds away. So, it's time for the big guns. The endocrinologist is super busy, and even though I'm on the wait list, so far I haven't had any luck getting my appointment moved up from the end of August. My pre-transplant coordinator is pulling all the strings she can find to get me in earlier, though. I am doing my Weight Watchers thing, but it's slow. Really slow. I was emailing with a few folks today: my pre-transplant coordinator, my nurse, and my renal dietitian. I had been wanting to try a variation of the pre-bariatric surgery diet. You know... The one that's like 700-800 calories, almost all liquid, that helps to shrink the liver and reduce weight quickly a few weeks before bariatric surgery? Yep. That one. But I was nervous. See, on dialysis, my blood levels are a finely tuned machine. One thing gets outt...

Well, hello there! Last week on Thursday, my mom and I headed down to UTSW for another full day of tests and meetings.  The day started with an abdominal ultrasound.  That's a pretty simple test, so it was quick and painless.   After that test, my mom and I made our way over to the office building where we'd be the rest of the day.  We had breakfast in the cafe downstairs before heading up to the kidney transplant office.  The biggest part of the day would be spent in that office in a "kidney transplant orientation" class.  It started at 9am and finished up just before 1pm.  Basically, my mom and I sat at a conference table with a couple of other transplant candidates while different people cycled through the room, each giving a little presentation. I find the stories of other people fascinating.  Especially in a place like UTSW.  You see folks in the elevator, and you just know that they all have a story.  Pretty soon, these ladies...