Looking better...

I did some manscaping yesterday to get a good look at my scar and a mark that has appeared on my right peck. I showed the Dr the mark last time we were at Penn and Dr H said he didn't know what it is and that I should see a dermatologist. Great, just what I wanted to do...see another Doctor. Looking at the mark its glossy like the the scar is, so I'm wondering if they got some of the glue they used to close the incision on my chest by accident.




So here is the 3 month post transplant scars, not too bad at all really. I figured I can just say I was in a fight and was hit with an ax or a broadhead sword, then I got the best of the guy so his partner shot me several times in the gut. Sounds good no?....LOL

I'm now 142 pounds and as you can see have filled out much better than I was, and the scar is stretched slightly because of it. I'm nowhere near my final goal of around 160, but at least I don't look completely sickly anymore. As I mentioned before at my low of 123 pounds I really looked bad. Being an ex bodybuilder I know I have body dysmorphia issues, but trust me it was bad. In hindsight I should have taken a photo, but I was really disgusted with it all at that point. See if my weight did not start to improve my fear was that I would have had to get a feeding tube put in and I was vehemently against that. I still have to force myself to eat most of the time, but I'm making sure to get my calories in and it is working well. I really need to start to lifting more though, I have been getting out almost daily doing various things for cardio, but I'm not doing nearly enough resistance exercise since I'm still hesitant with my sternum and incision. The 5 pounds weights are just a joke, so I did get some 10 pounders now to push it some.

On another note, here is a picture I received yesterday from the Callahan fundraiser last week with Bill Clinton. You can see how thin I am in it (was in 120's). to me I look like I'm wearing someone else's suit, lol..




On a positive note I have now started to attend a few meetings over the last two weeks and am trying to get back in the flow of the campaign. Its so nice to be able to be a part of something again and not just focus on my health issues. I'm making sure to use Purell on my hands all the time and wear a mask when in close quarters.

Back in the saddle again.....

Well I believe this is my first post since transplant...so Hello everyone!

It has been an incredible few months (3 month transplant anniversary was last Thursday). I have had many ups and downs over the time post transplant and Denise has done a great job filling everyone in on the craziness that is the transplant process. Thank you so much for keeping the blog going Denise and everything you have done for me over these difficult months. And Thank you everyone who has followed me and given me strength through this process, I am amazed at how many comments I hear from people on how much they enjoyed following us through this journey.

Many have asked me why I had not been blogging myself over this time and the truth is that I was not able too. At first physically my eyes could not focus, then my mind would not let me. I was so addled from the medicines that I was unable to clearly state what was going on. It has only been over the last two weeks that I have actually gotten back to being myself. I now feel I can fairly reflect on what has happened in my life and not send people running and screaming for the exits.

My weight is up from a low of 123 to a respectable 141.5 and I am no longer weak as a kitten like I had been. I have made a point to get out of the house more and it is helping me allot both physically and mentally. See when you have a transplant and they have your immune system knocked down low enough to keep your body from fighting the new organ you have to be wary of everything. The clinic does a good job of scaring you away from all the potential things that can hurt you and cause infection and or rejection. The result of the fear was that I found myself knocked out of my normal rhythm. Those who know me know I made a point in life to live it fully, no excuses no fears. I set goals and accomplished them more than not and never let my health interfere. Well post transplant, be it from the medicines, stress, fear or whatever I found myself trying to isolate myself from everything. I was physically afraid to engage in life or anything. This is not me, I have to throw caution to the wind and run headlong into the storm, that is who I am and I have come to realize I can't be anything different and have a decent quality of life. Two weeks ago I got angry and took control of my life again....

So as Aerosmith says I'm back in the saddle again!!!

I know many people had specific questions, feel free to email them to me or post them as comments and I will be glad to post about them.

Cheers!
Jim

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.