Along for the Ride

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...

I'm not sure what it is about Sundays, but I tend to get a bit reflective on Sunday afternoons.  Perhaps it's the preparation for the week ahead.  Perhaps it's the goal-setting and planning.  Perhaps it's the rare moment to sit back, relax, and unwind after a busy week and weekend.  Regardless, it seems like this time - these evening hours on Sundays - are when I find my mind wandering. I've always been a bit of a Pollyanna, but I have to admit that my outlook in the last few weeks has been more positive than it has been in a long, long time.  I try to stay positive most of the time, but this transplant business has really  lit a fire under my tail.  I gotta be honest.   I come from a long line of strong women, from "firm up, Mable," "put on your big girl panties," and "keep your chin up."  So I guess that tenacity, combined with my natural optimism, makes for a pretty strong "anything can happen" attitude.  So natu...

Greetings! Well, today was my first "big day" of appointments down at UTSW, so I thought I'd write up a bit of an update and overview.  The kidney transplant gears are definitely in motion!  Previously, right after my appointment with the transplant nephrologist, the transplant testing team was able to squeeze me in for an EKG, a visit with the social worker, chest X-ray, and lab work (19 vials!).  However, that was just the tip of the iceberg! Today started with a visit to the urologist.  When I was diagnosed with Wegener's back in 2011, I was placed on high doses of prednisone and Cytoxan.  Well, Cytoxan use has been shown to lead to an increased chance of developing bladder cancer.  That, combined with my personal history of urinary tract infections, alerted the transplant team, and my doctor wanted me to see the urinary specialist.  Today's visit was pretty quick, and the urologist basically confirmed that he would like me to get some scans...

I've been pondering how to write this post for a few days.  I learned long ago that - when I'm confronted with difficulty - I tend to focus on logistics and organization as a way to calm myself and deal with my emotions. Well, today I decided to dig in and talk about the elephant in the room: how I'm feeling.  Since my last post was primarily the "nuts and bolts" of the transplant, I thought I should now devote a little time to the circus that has been playing in my head in recent weeks. Right after I got the call about applying for transplant, I found myself oscillating between ecstasy and fear.  Of course I was excited to reach this next stage in my journey.  After all, I've been working for years to be a candidate for transplant. But I also felt trepidation.  See, I've been doing pretty well over these last few years.  Sure, dialysis is a total pain, but we humans are resilient beings.  We can adjust to anything.  I also recently saw an a...

Well, this entry will probably be pretty "nuts and bolts" since I have quite a bit of news to share.  I'll save the mushy feeling stuff for another entry. This is Easter weekend, so we had last Friday off from work, and we also have this coming Monday off.  Hallelujah! So, to pick up the story where we last left off, let's recap a bit.  I received a phone call from UT Southwestern a few weeks ago, inviting me to apply for a kidney transplant.  I completed the application and submitted it that same day (yes, I was definitely eager).  Laura, my pre-transplant coordinator, then took care of my insurance verification and approval (getting pre-authorizations for the transplant testing).  She then called to tell me that I would need to make an appointment with the transplant-team nephrologist, which I set for yesterday. Side note - the first available appointment time was actually on April 10, which was the 6 year anniversary of my dad's double lung transpla...

Howdy there! I spent some time recently trying to clean up my blog a bit.  I figured that - with this new phase of my journey - a fresh "look" might help renew the purpose of this blog.  In previous years, I've found that this site not only helps me communicate important updates and information about my medical journey, but it also allows me a place to process my thoughts and feelings.  Somehow it seems to help me calm my monkey mind, organize my thoughts, and build my team. I also added categories for easy sorting to help with distinguishing my medical life from, you know, life  life.  If only real life were that easy to sort and categorize! If you have recently joined me in this journey, welcome!  I try to be an open book, and sometimes I'm probably a little too  honest, but I know how much it helps me to have open and honest people to turn to, so I'm taking a leap of faith and continuing to put myself, my thoughts, my hopes, and my fears...

Yesterday afternoon I had my monthly dialysis visit at Davita UTSW.  My mom went along with me so I'd have company in mid-afternoon traffic, and - BONUS! - we stopped for a delicious (and healthy) dinner afterwards. Yum! I was excited for this visit because it was the first time I'd been able to see my doctor and ask him questions about the transplant process.  There are still so many unanswered questions, but I was able to ask him some things and get a little bit of clarity. I thought I'd share some of what I learned here.  I've discovered over the years that this blog not only helps me communicate updates easily, but it also allows me to chronicle developments in my journey.  Rereading entries helps me piece together "muddy" moments in my memory and fill in plot holes in the story. So, here goes... Q:  I had been doing some reading online, reading a lot of articles on good-ol-Google MD.  The articles sufficiently freaked me out by stating that the...

Well, hello there... I know... it's been a while.  I suppose I haven't posted because I didn't feel like I had any news to share.  I've been rocking and rolling along on peritoneal dialysis for the last five years, and - to be honest - I think I've been on a bit of auto-pilot.  I read through some of my old posts, and dang... what a journey. So here's the update... Remember that whole kidney transplant thing?  To catch you up, in 2011, before starting dialysis, I went to UTSW to be evaluated for a transplant, and they basically said I need to go lose 60 pounds and the come back.  Well, for any of you who have struggled with your weight, you know it's not exactly that easy.  I worked on my own to stabilize my illness and lose weight for about 4 years, but  had only lost about 10 pounds.  So I decided to join Weight Watchers in October of 2015.  The program had worked well for me before, and I knew it would allow me to implement my specia...