Please, please, tell me now…

I wanted to post some good news I learned yesterday… my transplant coordinator called to tell me that my cardiologist WILL be able to make it to this Friday’s committee meeting!   I could get approved for the kidney/pancreas this week!  Even if I get just the kidney, I could very well get “the call” any day now.  So, I’m praying it happens soon!  I don’t even care if I’m spending the holidays in the hospital, I’m so excited!  😀

I’ll post again Friday with an update of their results…

On a different note, I’ve had a few people ask me how everything started…how I knew I had kidney failure.  I realize I’ve been very detailed on this current part of my experience, but not much about how it started, so, I thought I’d take a moment to reflect on the beginning of this roller coaster ride.  Bear with me as this will make this blog entry a bit longer than normal.  However, it’s a bit of a story, and I’ll be as open as I can with it.

For years, my endocrinologist had been telling me that my sugars were too high.  I knew they were, and I was having a really hard time trying to bring them down.  In fact, being on dialysis was always one of the biggest fears I had when it came to the damages that diabetes could do.   It’s amazing what a motivator fear can be when it comes to effecting your life!  However, no matter what I tried to do to change things, the damage continued, and pretty soon, my doctors were telling me they were seeing protein in my urinalysis.  (Knowing that kidney failure is a possibility, a good endocrinologist will keep an eye on this sort of thing as a routine test… I am constantly having to provide blood and urine samples to my doctor for monitoring.)  Once a doctor sees protein in your urine, it’s a sign that something is going wrong with your kidneys, and they told me as much.  However, no one ever stopped to talk to me about how to slow down that damage…nothing about changing my diet or lifestyle changes, nothing.   At that point, I had early stages of kidney disease, but didn’t know it.  This went on for a couple of years… I’d give them a sample, they’d confirm there was protein, and nothing would change.

Then one visit I went in, and they started telling me about my last test results.  This time they told me that things were starting to look “critical” and that I needed to see a Nephrologist ASAP.  Not knowing how badly it had gotten, I made an appt.  I wasn’t having any symptoms yet, so I thought I was fine, and possibly still in early stages of damage.  Maybe we could save this!  Once I met the doctor, he told me I needed to take a test that would tell me what percentage of usage my kidneys had left.  It took all day, and at first sounded simple, but turned out to be much more difficult than I thought.

I went in to this clinic downtown, and before I could even sign in, the man in charge gave me a shot of some liquid and said “quick, drink this!”  Thinking it was something like water, I did, and it was the most disgusting thing I’d tasted!  What sucked is that I couldn’t follow it up with a drink of anything else b/c it would ruin the results, so I had to bear with this nasty taste for awhile.  Turns out it was some radioactive fluid (or something like that) that they needed to watch as it flowed through my system that day.  They gave me a big plastic pitcher and said I needed to drink 10 cups of water within the next 45 minutes.  I was sitting with a group of people (all doing the same test) and we each had different amounts to drink.  However, at the end of that 45 minutes, we were all told we had to use the restroom, and they would time exactly how long it would take for us to go and flush.  (We had to hit a button the second we flushed.)  Afterward, they would draw some blood and the entire process would repeat for the next 45 minutes…over and over and over.  Each time we were given different amounts of water to drink, and I was soooooo sick of water by the end of the day I could have vomited!  What’s worse, is we couldn’t eat during this whole time, and their TV was stuck on the Food Network.  Nice.  I was the only newbie in the room, so it was interesting to talk to everyone about their experiences and what they were having to go through.  I was shocked to learn that some of them (who’d been on dialysis for years) hadn’t even peed in several years!!  I guess when you think about it, when your kidneys fail, they can’t produce urine, so it makes sense.

At the end of the day, I asked the guy if he had my results, and he said yes, I had 10% usage.  I talked about that thought process in an earlier blog, but at that moment, I was in such shock, I think I just stood there and cried.  Ten percent usage meant failure, and I felt completely sucker punched.  Why hadn’t anyone gotten me to the doctor sooner?!  How come I was never given the chance to prevent this from getting this bad??  The man in charge there told me that as a diabetic, I unfortunately would not have been able to slow down the process much, so I shouldn’t be too hard on myself.

Once my doctor started us on the process of getting a transplant (which involved him writing recommendation letters to the transplant teams in town), I braced myself for what was to come.  I allowed myself time to accept it emotionally, but had no idea what to expect physically.  I started to get the tiredness early on, as well as the nausea.  As my anemia got worse (due to the kidneys not producing enough enzymes that make red blood cells), my energy would disappear.  I had enough energy to go to work, then come home and crash.  There were times when my sister had to help me down the hallways of our apartment b/c I could barely walk.  My ankles would get so swollen, I couldn’t wear most of my shoes and had to resort to flats or flip flops at times.  Then the nausea would get worse, and my breathing became effected.  I would have to sleep sitting up or leaning forward b/c the fluid was building up in my lungs.  (I explain the pleurisy in earlier blogs too).  When I’d bring all this up to my doctor, he would give me water pills, and tell me that he wanted to wait until my nausea got “worse” before we started dialysis, but I wasn’t sure what “worse” would be, so I did as he told me and kept my “vomit bowls” all around the house in case I got sick wherever I was…which happened quite often already.  Keep in mind, I was experiencing severe diarrhea and skin rashes from the undiagnosed Celiac disease, so I was a total mess.  This is the “ugly” I managed to keep hidden from everyone for at least a year.  When I’d leave the apartment, no one would have a clue what was going on, but behind closed doors, I was free to collapse and be as sick as I needed to be.

One morning, I woke up to get ready for work, and realized I felt extremely groggy and slow.  Realizing my blood sugars were low, I went to the kitchen to fix some cereal.  I noticed that every time I took a bite, the cereal would fall out of my mouth!  Still feeling slow, I turned to my sister to tell her not to leave for work yet b/c I think something is wrong… but when I tried to speak, all I could do was grunt.  My mouth was failing me and I couldn’t speak!!  Luckily my sister has a 6th sense about when something might be wrong and she quickly ran out to see what was going on.  I wrote to her on a piece of paper that I felt like a stroke victim and we needed to get to the ER.  My speech started coming back to me after about an hour, and after the ER ran a bunch of tests, they told me it wasn’t a stroke (thank GOD!), but was my body’s way of telling me that my kidneys had shut down and I needed to start dialysis.  Body, you couldn’t have come up with a more simple way of letting me know?  How cruel!   As we waited to start dialysis, my body would go through these stroke-like episodes several more times…each time getting worse.   I’d feel like I was drowning and my body would go into a mini-seizure before they could fix my blood sugars.  It was the scariest thing I’ve ever experienced in my LIFE!  I could see it was for my family too, and there were moments where we would just sit in silence taking it in.  None of us could have expected this to happen this way, esp when I was told I would just get “a little more nauseated” before it was time to start.  Once I started dialysis, though, it went away, and life started getting better!

Once I was sent to the dialysis center, they changed my Nephrologist, and they told me that I never should have had to go through all that “ugly” had I started dialysis sooner…like a YEAR sooner!   Hearing this, I felt sucker-punched for a second time.  Again, why hadn’t anyone told me this sooner?!?!  It had definitely given me some doubt regarding how I was feeling about the medical field.  I was relying on the experts to tell me what to do, and twice now I’d been let down and ended up with possibly more damage than necessary.  However, I’ve been able to get over that anger and put my faith in them once again as I continue to get more selective about my options…resulting in better care.  I’ve learned that I am ultimately the one responsible for myself and no one else can do a better job if I don’t pay attention!  I’ve continued to keep myself educated on what is happening in the kidney/diabetes community and I plan on sharing that with you here on this blog so that we are all on the same page.

So, that’s the full story of how I’ve gotten to where I am now, and as you can see, it’s constantly a learning process!  Thanks for taking the time to hear me out on this long and not-so-fun story, but if I’m going to tell what it’s like, I should reveal it all!  🙂

Now, I’ve got to just pray that this committee meeting Friday turns out well and puts an end to this saga!  At least until I have to go through it all over again… LOL!


What I’m thankful for today:

1.  That my doctor can make it to the meeting Friday!
2.  That I can work and be as productive as I am (I’m learning that this is not always the case with others going through this).
3.  My family for helping me get through each step of this process.  🙂
4.  Christmas decorations.  They give me the warm-fuzzies.  🙂

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