Tuesday, August 31, 2010

Keep on moving up...

It has been a very good week for me health wise, weight continues to rise (now at 143) and I blew an all time high on my home peak flow yesterday (FEV1 3.12 FVC 3.57). I have been able to get back into the campaign office several times and am starting to get back into the groove some. I also started to lift weights again this week. It felt great, my only concern is still my sternum. When I was doing bar presses and had the bar lowered with my arms all the way down I couldn't help but wonder if my chest was going to split open...lol.. Luckily I was able to push the 45 pound bar without issue. I am noticing that my strength is steadily increasing, so I will have to keep in mind the doctors limitations.

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

Mmmmmm ...spaghetti

Yep, I'm back. No worries, Jim is fine (so am I)!

This evening we went to a spaghetti dinner for Luke, who I mentioned in my last blog. Jim and I met Lukes's dad, grandparents and children. We spoke with them about our experiences along the pre and post-transplant craziness. Seriously...it is CRAZY!!

Man, I can understand all too much how Luke's family is feeling. It is so hard to sit and just watch all of this happen to someone you love and not be able to do a thing to help them (other than be with them). Every time I read a new blog post from his mom or dad I can't help but think of the days of sitting by Jim all day, then going back to the hotel, blogging and then going to sleep only to get up in the morning and hope and pray that that day will be a good day... Some days my hopes and prayers helped, other days...not so much.

On a happy note, Jim has been making great strides lately! Whew, lets keep it that way please!

Here are a few pictures from last weekend. Jim was strong enough to squat down and clean "M" but the next day his legs were feeling it, buy hey, at least the car was clean! Ha ha!
Note: OBX t-shirt

Ok, I just have to say that Jim has not pumped gas in ummmmmm....not quite sure how long but it's been awhile!

Ahhh, the open road!
Me, all smiles!
He was smiling, really!.

So, we are beginning to enjoy life post-transplant!

This coming Wednesday we are going to Atlantic City, NJ. I am so excited! An old (young really) high school friend, that I haven't seen since then, won a hot dog eating contest. She won a 7 night stay at the Taj Mahal. She can only stay 5 nights and was so gracious to offer the other 2 nights to us!

"I can't wait to go for a run on the beach!" Denise
"I can't wait to walk on the boardwalk." Jim
"Yep, you can do that now!" Denise

Much love to Jim's donor and his family.

Thursday, August 26, 2010

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.

Tuesday, August 24, 2010

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.


Wednesday, August 18, 2010

Climbing Hills and Showing Off

We enjoyed a few more nights at Musikfest last weekend and Jim did fine. On Sunday, the last night of the 'fest, there was a huge firework display. We stood on the hill (yes, that's right...the hill) to watch them; Jim has been doing well with hills lately. We started walking up one of them and I stopped to look for him; I didn't see him anywhere until I looked up. He was already standing at the top of the hill looking down at me with the look of "Come on, lets go" on his face. Jeez...what a show off! So Musikfest ended with a bang of fireworks and Jim being a show off.

Last Sunday we also enjoyed a nice cup of Starbucks with Barb, a member of "Team Sheldon".

Yesterday we went to HUP to visit with the transplant team. Jim went through his routine. CXR first, PFT's and then meet with the transplant coordinator and Dr. H. It looks like things are headed in the right direction.
His CXR was much better than the last. The lower right lobe is expanding, his stomach looks much better and his PFT's are climbing. He's FEV1 is currently at 70% of predicted and should go up from there! Prior to transplant he was at his all time low of 24%.

His weight is continuing to increase and is currently 140. The transplant coordinator told him he looks a little more "meatier".
Last week Jim's Prograf level was "undetected" which had both of us baffled. Yesterday his level came back as 6.2 so they increased it to 3.5 mgs. His next bronch is scheduled for 9/3, the day before our 17 year wedding anniversary. The bronch will tell us if there is any sign of rejection.

If you have a chance please stop at Luke Maeding's blog and send him an e-card. He is at Children's Hospital of Pittsburgh and is from Nazareth, PA. Luke has children's intersistal lung disease and had a double lung transplant this past Saturday. Here is an article that was in our local paper about him.

"You have hair??!!" this is what the transplant coordinator said while Jim was in the middle of telling her how he was doing.
"Sorry, back to the important stuff." coordinator after realizing she got off track.

"I'm so happy! Are you happy?" transplant coord after hearing how Jim is doing.

Saturday, August 14, 2010

Where are YOU?

Ever since Jim and I have been out many people have mentioned how much they love reading the blog - thanks for that!

Because we have both been amazed by the number of people following us, I'm curious where everyone is from.
So...where are YOU from? How does CF affect you? What's your story????

You can comment without signing into an account and there is no need to provide your name or personal information. I know some people have had some problems posting, so here are instructions on how to comment:
  • 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";
Walla...your comment should be posted!

We are from Bethlehem, PA! I don't know if Jim indicated where we are from in his status.

I'm really hoping to hear from many of you!

Jim is continuing to eat with no pain (a bit of cramping, that's it). He is getting stronger and gaining weight (up to 136 lbs) every day. Kicking butt and takin' names, baby!!!!!


"Do we have any waffles?" Jim
"Yes, in the basement. I'll go get them." Denise
"No, that's alright, I can do it" Jim
"Oh yeah, I guess you can!" Denise
(I've been doing all of the steps around the house for the last year or so because Jim's lungs were not cooperating. He did the step to go to bed and that was pretty much it.)

"I know, I'm stretching the 'in sickness and health thing'." Jim after I told him he better be careful or he won't make our 17th yr anniversary in September. ;)

"We need to go back to Cancun so we can climb that pyramid that we wanted to!" Denise

Finally, things are looking up (knock on wood, plastic, metal or anything else in reach)!

Thursday, August 12, 2010

The Germ Cloak

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 STOMACH PAIN 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 Outer Banks in North Carolina. 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

Fighting and 'Festing

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!


This weekend was our first official night out on the town. We went to see the Counting Crows on Friday and Norah Jones on Saturday at Musikfest.

Counting Crows

Jim was quite anxious on the first night out but everything went fine. The walk back from the concert this year was much different than last. Last year Jim had his oxygen and we had to stop several times for Jim to catch his breath and let people pass us by. THIS YEAR? No oxygen and he kept up with the crowd! He also walked up a huge hill that he was never able to walk for several years! One other thing that we both noticed Friday night when we got home was that he could go to bed right away...no treatment!! I thought to myself that it stinks that he can't just go right to bed because he has to do a treatment, then realized....no treatment necessary! The little things...

"Who would have thought last year at this time we'd be sitting here like this?" Denise while waiting for the concert to start.
"Yep." Jim, after taking a nice deep breath and smiling.

"You already got lungs, don't you think that's enough for now?" Me after he told me he never gets anything while grocery shopping.
"Yea, I guess..." Jim

Please keep Cystic Gal in your thoughts. She had her transplant on July 27th and is having some complications.

Thank you donor and donor family for allowing us to enjoy our weekend the way we should!

Tuesday, August 3, 2010

Out and About and Ready to FIGHT!

Today Jim picked me up in "M" for a nice lunch at a diner downtown. He ate some french toast and an egg with no pain afterward! That is a HUGE deal since he has been having a lot of pain after eating. His weight is really dropping from this stomach issue. He is down to 126 lbs.

Jim's attitude today is different compared to what it has been since his transplant. He is pissed that things aren't going his way and told me that he is ready to start getting angry and get back into fight mode; this is a good thing! I think it helped that he got out of the house today since he hasn't been doing much of anything lately, although, he did go with me to the vet and the drug store yesterday. Baby steps...

"I'm torturing myself by watching cooking shows." Jim
"Why would you do that?" Denise
"Hope for the future..." Jim

On a side note:
I thought it took me over an hour to finish my 5k but click here to see how I did ( scroll to bottom :) ). I and other runners were interviewed for a clip at the race. They asked what I thought about the course and what made me come to the race. There will be a little clip of interviews and maybe I'll get in it. "The miracle isn't that I finished. The miracle is that I had the courage to start." ~ John Bingham

Much love to our donor and donor family @>--------
Be someone's hero and become an organ donor!