Tuesday, August 31, 2010
Denise and I got out and about all weekend and it was so great to be able to walk through the stores and grab lunch with minimal concern for my health. I am of course still going nuts with purrell, but not wearing a mask unless its really close quarters.
I also picked up my new iPhone 4 yesterday (take that Chris and your droid)! I know most of you who really know me were surprised that it took me this long. The focus was on health and rehab and my iPad and old phone was sufficient tools, but I finally got over to pick up the new one. Denise and I are heading to Atlantic City tomorrow and I wanted the new camera features with the flash. I have to say the screen clarity is excellent but I have not noticed much else that is different yet. It was so easy to set up, Apple is great for user functionality.
Friday, August 27, 2010
Thursday, August 26, 2010
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.
Tuesday, August 24, 2010
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.
Wednesday, August 18, 2010
Saturday, August 14, 2010
- At the end of one of the post, click on "comment";
- Scroll down to the blank area that says "Post a Comment" and type your message;
- Where it says "Comment As:" click on the drop down arrow;
- Click on "Anonymous";
- Click on "Post Comment";
- At "word verification" area type in the word typed in blue;
- Click on "Post Comment";
Thursday, August 12, 2010
Yesterday I came home from work and couldn’t find Jim…what the??? I heard no coughing and there was no oxygen line in sight to trace his location. I then realized that I can no longer find him that way. It’s amazing how quiet our home has become; there are no nebulizer treatments or percussion vest running coupled with the TV that used to be blaring in order to hear over that entire racket.
Unfortunately, yesterday we had to go to Jim’s grandmothers viewing. She passed away leaving behind 9 children, 16 grandchildren and 19 great-grandchildren. Even though he was wearing a mask, I have to admit I was extremely anxious with Jim being around a tight crowd of people for the first time. Hand shakes and hugs made me quiver. I think of all we have been through: waiting for THE CALL, my nights of crying, helplessness and lack of sleep, his days and nights of treatments, gasping for air, body pain and overall fatigue…PICC lines, visiting nurses, hospitalizations, infection and loss of a true “normal” life through the years that he has been sick. And more than ever, the last 3 months of living in a hotel, many trips to and from HUP with thoughts of infection, rejection, vomiting, anxiety, more PICC lines and the thought of me possibly being alone…
The thought of anything happening to his new lungs actually terrifies me! Sometimes I just want to find a way to put him in a germ cloak…you know, sort of like Harry Potter’s invisibility cloak.
We are continuing to have more “firsts” which I will share with you until Jim takes his blog back.
Yesterday he had NO for the first time since surgery on 5/19 – Woo hoo! That’s a major accomplishment because it was the only thing that was really holding Jim back. Now he can work on eating more so he can gain weight, strength and really appreciate the fact that he was given such a precious gift of new lungs. Donor and donor family, as always, we are so grateful!
Recently a friend went to the in . If you haven’t read the entire blog, Jim’s donor was from North Carolina where we have been vacationing every year since 1996. I asked my friend to “Please tell NC I miss them and look out to the ocean and thank our donor.” Her reply to me when she returned was “Just wanted to let you know that our first day at the beach I said a huge prayer for you, Jim and the DF out towards the ocean. And then our last day I said another prayer that the 2 of you can get back there to the place you both love so much! You deserve it!” Thank you my friend for remembering. It meant more to me than you can imagine! It actually brought tears to my eyes then and does again now while typing this. :’) Both of us cannot wait to go back to NC next year! It will be an even more special place for us.
“So, how are you doing?”
“I can breathe!” Jim
Sunday, August 8, 2010
Things have been quiet lately health-wise. Jim's stomach is still bothering him when he eats and his weight is at 128 lbs. He is weak but working his way up to getting out and about more. Lungs?? They're doing great!