Where I'm At....(a novel)

I have a few minutes before the hubby gets home (and I start the 6 hours of dialysis) to catch you up on my latest goings on. I went to my appointment at Duke having done all of the required tests. Everything was good, or so I thought. After meeting with the nurse, it seems I need four more tests (arterial blood gases, sleep study, cardiac clearance from a heart doc and one other one that I don't even remember) before I can go before the medical review board. They're telling me that once I get all these test done, it will be at least one month (probably 2) before the medical review board will meet to hear my case. If it was me, I would have scheduled all of my "newly required" tests for this week. (Heck, I don't have anything else better to do!!) But, as you know, you have to get referrals for everything and I am having to wait for my nephrology nurse to call and get appointments. This is like waiting for paint to dry. It's been 12 days and still no appointments.  The day after my first eval. @ Duke, my dietician calls me giving me royal he|| about my labs. (I have to do monthly labs because of the dialysis.) My potassium is like an 8. (Your heart can stop at 6.) And my blood sugars were 506. I told her "There’s no way. Dr. D. would have given me he|| if my labs were that bad. What date did you get the labs from?" She told me it was from a time period while I was doing the liquid diet. So, that got me thinking that the supplement that I was using wasn't going to work and maybe I might not get to have the surgery. The dietician went on and on (kinda like I'm doing here!!) about my labs and I left the conversation feeling devastated. Later that day (after a long stew), I call my nephrology nurse to ask her if she's going report these labs to Duke. She said, “Not unless they ask? Why are you so concerned?” Then, I told her about the dietician’s call and she said “Don’t worry about that!! We didn’t spin your blood down right so all of your lab results were skewed and she didn’t have the date right either. If Dr. D says the Boost is OK, go with it!!” I’m now back in Euphoria-land!!  Meanwhile, I had lost 28 lbs in the 2 weeks I was on the liquid diet. (Jan. 15th thru 29th) I decided that I didn’t want my body systems to start shutting down from just quitting food cold turkey......So, I did it....I started eating real food again and gained back all of the weight. I know that 99.9% had to be water weight because you wouldn’t believe how swollen I am!! Keith, even though he supports me at any weight, is disgusted with the weight gain. I am disgusted with the weight gain. Dr. D says that even after dialysis, I am about 4 kilos (8.8 pounds) above my dry weight. (which means I have 8.8 pounds of excess fluid) You can see it in my face, hands and ankles. I’m really going to have to grit my teeth and bear it tonight and let the machine pull, pull, pull the fluid off!!! (You can only pull so much off before you start cramping or you pass out. Problem is you don’t know sometimes until you get there!!) 

Also, during the time I wasn’t feeling sorry for myself or ordering Chinese delivery, I was working really hard on my presentations for the Alpha Phi Omega Section 79/80 Conference. I did one on “Everything You Wanted to Know about Alumni Associations But Were Afraid to Ask” and “Service With a Smile: How to Have a Living, Organized Service notebook and a Program of Service that ROCKS!!” I had them on the net and everything. It was super cool. Also, at the banquet I got an award for establishing western NC’s only A F W Alumni Association.

What a super day and night!!! Until I had to drive home, that’s a big long story in and of itself. Suffice it to say, I won’t be driving again until we get a hand brake for the car. Keith doesn’t see to drive at night. And apparently, when I’m over-loaded with fluid I don’t feel the brake pedal so good. Thanks to the neuropathy. There wasn’t a wreck. But, it wasn’t pleasant at all   .

Gosh, I feel like I am on a giant pendulum. When I’m up, I’m really, really up!! When I’m down it like the bungee cord is 10 feet too LONG!!

Hanging in there,

Kelly PS: A SPECIAL THANKS to Marytwo and Anniep for keeping in touch!!  I love you, guys!!

Wow Kelly -

You sure have been on a ride! I hope that things smooth out soon. I know it seems like it takes forever to get through the process.

Hang in there kiddo!

Barb