Friday, December 7, 2012

The waiting is killing me!!!!!!

Before I begin, I apologize to those with a commanding knowledge of the English language, grammar & punctuation. I'm an RN, BSN by trade so, I'm afraid, I'm going to make many mistakes. Please bear with me!! I'm learning as I go along & it is my pre-New Year's resolution to gain a better understanding of my spoken and written language. Until then, please forgive me!! Oh, & I can't spell (even with spell check some wrong wrords get thru!!). That's a subtopic resolution to get better at as well!

Next Friday, December 15, 2012, it will be 3 months since my transplant surgeon, Jim Markmann, MD, Mass General Hospital, sent in the paper work to the Transplant Oversight Committee for approval of the reimplantation of my islet cells into my renal (kidney) capsule, but who's counting!!
I'm going CRAZY!!!!! Dr. Markmann is confident that the outcome will be favorable because we don't have a choice & it's not morally wrong nor will it hurt me other than the usual risk. But there's always a chance it could come back with a no which would devastate me, although I've been repeatedly assured that that won't happen. I'm still apprehensive waiting for the definitive answer!!

I've decided if the committee comes back with a no & there's no where else viable to put my islets, I'm going to go ahead with the total pancreatectomy. Diabetes dependant on insulin doesn't scare me as much as this unrelenting, severe pain with frequent acute flares of said pain does! Diabetes can be managed & I can take steps to better management with an insulin pump which I've already checked, is covered by my insurance!! And, the world renowned, Joslin, is in Boston and they're taking new patients! So, that's why it's not as scary! Will it be a pain & frustrating at times? Absolutely!! But I'm up for the challenge.

To deal with some of the anxiety of waiting, I've decided to control the only variable that I can...my attire during admission, with exception of the ICU!! As an avid sewer, I'm making PJ's that are similar to hospital garb, yet are colorful to help brighten my mood & improve my comfort during my hospital stay. I've finished the bottoms, a simple PJ bottom with an elastic waist & pockets. Now I'm working on the tops that include snaps at the shoulder seams to accommodate any IVs and they snap in the front to allow the nurses & doctors easy access to my incision and tubes while allowing to put them on by myself, as well as full coverage in the back. I feel a little in control of an event in my life which will be totally out of my control. Of course my attitude & willingness to cooperate post op with all of the instructions I receive is within my control but I mean the general medical events: pain, any complications, restrictions, any side effects. etc.

I'm excited yet terrified at the same time anticipating this life changing medical event in my life!!!! I tend to be on the anxious side in general, especially when I don't know what to expect. Plus, I've been treated poorly by many health care professionals in the course of my disease, so I'm still a little nervous about the treatment I'll receive. Of course, I've been assured I'll be treated well but I've heard that before!! My doctors, Dr Lillemoe & Dr Markmann have been nothing but gentleman and extremely supportive & respectful. It's mostly the nurses & residents/medical students that I'm fearful of but my care will be overseen by Lillemoe & Markmann, and I'm not above reporting anyone who treats me with disrespect to them. So, I'm hoping I don't have any problems. I'll keep you updated on that front!

I'm already putting in place the chain of people who will communicate the events of my surgery & ICU stay while I am unable to access the phone or Internet. Again, to gain some element of control of an uncontrollable situation. So, there will be someone posting for me during that time to keep you all informed.

Thanks you for reading my blog &, hopefully following me!! I appreciate your time with me!!I hope you all have a pain free a day as possible!!

Until next time!!
Sandy

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