Thursday, May 13, 2010

Check a few more items off the list....

Well it has been a busy week again.....

I was informed on Tuesday morning that although my case was supposed to be presented to the Columbia transplant team this Friday, it may not happen because they did not have a completed Lung Transplant Evaluation Form for me. Well I initially lit into the coordinator and explain my displeasure at the last minute issue on something that I couldn't have really completed since they saw me last. See I have been on IVs for three weeks now and not in any shape for getting around for minor appointments (Dentist and Opthamologist) and from what I had learned in the past when an active infection is going on is not the best time for Vaccinations (Influenza, Pneumovax, Tetanus, 3 Heptavax/twinrix shots). The coordinator quickly got flustered at my angst and transferred me to my new pulminologist who proceeded to explain the requirements of the program and how they are very inflexible on some things for my safety. After my logical argument (ok I begged a little too...) She did relent and said that if I at a minimum could get the Eye Dr and Dentist to send proof I had been there they would proceed with the listing process as long as I had a plan for the vaccinations.

So Denise and I had to call in some favors with our local doctors in order to take care of the open issues on the quick. Luckily we have some excellent people who provide our care locally and all fit me into their already busy schedules. We even had to make use of the local city health borough for the vaccinations since my primary could not get them at all.

So short of it is I have now met all the health care maintenance requirements for the lung transplant program at Columbia Presbyterian Hospital. I am awaiting return verification that the coordinator received the completed form that I just sent her. My case should be presented on Friday as planned and I will know the outcome by Friday afternoon. I was told the actual listing may take until Monday since there are some things that need to be done when putting the information into UNOS and they need insurance approval from Blue Cross. I did talk with my transplant case worker at Blue Cross yesterday though, and she has already completed the approval process since Columbia called her with a heads up.

On my CF health front, last night was the completion of 3 weeks of IV therapy. I really didn't get the bump up I had hoped for since I had a slight setback last week after my cardiopulmonary stress test (some hemoptysis) and my allergies are really acting up. I am however starting to feel better now, so we decided that we would go ahead and stop the IVs as planned but keep the line in just in case I don't continue to improve.

Today was a really nice day out and it feels great not to have over 6 hours of IVs to run. I took advantage of my new found freedom and ran to Air Products Credit Union and while I was in the area it gave me the opportunity to see some of my former colleagues. It was great seeing everyone and thank you for the well wishes.

1 comment:

  1. So frustrating! Glad you were able to pull some favors though :)