Stand Still

The days are dragging by as slowly as possible now that everything is up in the air. Today should have been my day three with no kidney. I should be in a lot of pain today and on a lot of drugs, feasting on hospital food and being forced to walk even though I would rather not. Instead I am still packing the kids' lunches and going to the bank all day. I'm still coming home and letting the puppies out and making dinner and running kids around. I still have this extra kidney. And Nathanial still has none.

Monday, Nat and mom came to town for a bunch of hospital tests to see what all was wrong with him and what all the doctors think they can do. Nathanial described one test as the most painful thing, next to kidney stones, that he has ever lived through. He was in so much pain when he came to our house it made me angry. He kept taking his oxycodone (sp?) and wincing everytime he tried to re-arrange his legs. He didn't sleep at all Monday night. (Although, Mace, our little black puppy, slept quite comfortably next to Nathanial in the guest room!) The next morning Nathanial was scheduled for another test, a cat scan, at a seperate hospital here in town. Conclusively, the doctors think Nathanial has pneumonia....even though he says he feels fine. They also determined his liver is enlarged and they want to find out why. While I am frustrated to not be done with the transplant right now, I am thankful that the doctors are giving Nat the attention he deserves now. Next Monday, the 23rd, the physicians have scheduled another meeting with Nathanial. They said, provided all the tests look okay, they may set a new date for a transplant at that time.

I'm not holding my breath.

In fact, I'm doing the opposite. I painted my nails again (I had all my polish removed for weeks in preparation for surgery). I started taking my Advil Sinus again for my headaches....the nephrologist told me that was hard on my kidneys. I am doing whatever I can to temp Murphy. Murphey's Law and I do this dance often. You see, when I plan and I have things ready to go.....guaranteed something will go wrong. So, when I don't plan, sure enough things happen that should have been planned for. There really is a method to my madness!

The Latest Setback

I'm getting more and more impatient by the day. In fact, for a couple of days, I almost forgot entirely about the transplant. Things are moving so slowly now. The hold up seems to be my possible gestational diabetes back in 2000. My doctor wanted to review my pregnancy records. However, my doctors from back then no longer practice (thank goodness) and their records disappeared. My doctor literally couldn't track my medical health any further back than 2004. Finally, this Thursday, my doctor was able to talk to a lady at Newman hospital in Emporia who thought they had my records on microfish. Remember microfish?? She spent most of her Thursday going thru film and printing off page by page anything she could find about me for the transplant center doctors to look at! What a gal!!

Then here is the email I received yesterday regarding what they found in my old records:

Hi Hilary. We discussed your history & lab results this am in our meeting. I explained the story - - Dr. Matt Reed , Dr. John Smith, and Dr. Charles Shield were comfortable with proceeding forward. The group voted that you could be a donor. After the meeting Dr. Mandayam expressed concerns to my manager with this decision. (He was not in the meeting to hear our discussion) He thought we should send you to a diabetes specialist for their opinion. I spoke with him this afternoon and explained the results I was able to find. He asked if we were sending you to a diabetes specialist. I asked why you should go if you never had an elevated glucose. He thinks we should discuss this with the diabetes specialist. I have not received a call back from the KU Med school regarding my message I left yesterday about an appointment. I will page the doctor to discuss your history with him. No appointment with him yet- -hopefully he will give an opinion which agrees with the other physicians to proceed. Mark

Mark Blackmore R.N., B.S.N., C.C.T.C.
Renal Transplant Coordinator
Transplant Institute Via Christi Health

I can't believe the possible gestational diabetes is causing this much havoc! Especially since I passed all the glucose tests with beautiful results that amazed everyone. I fully understand why the doctor is concerned, but everyone else is ready to proceed. Its just this one guy throwing a kink into everything....

So that is where we are. There hasn't been anything exciting to blog about. There hasn't even been anything boring to blog about. There just hasn't been ANYthing to blog about :(
~Hilary