Offer of Lungs

It's Denise.
We are on our way to Univ.of Penn.
Don't know for sure if this is the "real deal" but hoping it is! Trying not to get excited but it's hard. Both of us are feeling like this is it...
We have an app't tomorrow at Columbia and Jim has his iPad so we're think g this is a good thing. We are almost in Lansdale. Positive vibes and prayers please!

Wait and wait some more....

Well they did present my case today but were unable to list me yet. Everything went well, but they realized that I had not yet met with the surgeon and that is a requirement from the program for listing. So we now have an appointment for next Thursday at Columbia Presbyterian to meet with a surgeon. I was informed that immediately after the meeting we would be officially listed. So I'm a little pissed off at the last minute hold up, but happy that we are moving forward.

Yesterday I received the vaccinations that were needed and man did I feel it last night and today. I could not sleep all night and kept alternating between burning up and cold teeth chattering chills. Today I'm sore, but feeling much better than I was. I'm making sure to take Advil every four hours just in case.

For fun here is a picture I just got today from the campaign from when Vice President Biden was in town for us...



I don't think VP Biden ever takes a bad picture. Yes I know he flubs a line here and there, but he is a really nice guy.

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.

Another long day of testing done

Well we made it through another day of pre-transplant testing. I'm worn out today from all the walking around (columbia Presbyterian is a huge complex), and the exercise stress test was really tough.

Everything went well, the meeting with the psychologist was fine, but the joker in me kept wanting to ask him why any of it was his business.....and when he asked if I have ever done coke I wanted to say....why you got any?...LOL, but I kept my jokes in control and made it through. The only question that shocked me was he asked if I ever used anabolic steroids which I thought was a very odd question to ask. I guess because they knew I was a bodybuilder he was checking to see if I was being truthful.

The social worker was cool and yet again pointed out the cost and lifetime commitment needed for transplant. When going through transplant it seems everyone always points out the costs. It makes me wonder who in the hell says to themselves, I'm dying but maybe I better not choose life saving surgery because it costs money now and in the future.

I'm almost done with my second week of a three week course of IVs (Merrem and Tobra) and am feeling better. No way could I have gotten through yesterday if my health was like it was a few weeks ago.

Things are looking up, I'm going to send a message to Columbia to see when I could expect to be listed.

Another round of testing...

Of to Columbia Presbyterian in NY in a little while for a full day of testing. They require an exercise cardio test, EKG, Psych eval to complete their requirements. Today should take care of all the testing required to be listed there, we will see.