Thursday, February 10, 2011

Radio active eggs, again.

Trying to make t is a short one. I don't like typing on this iPad. :/
Today consisted of a gastric emptying study and an MRI.
He had to eat radio-active eggs for the gastric study and pictures were taken of his stomach periodically to see how fast the food moved through. The test showed that he is having an episode of gastroparesis. With that diagnosis the doc's recommended at he try a med called Domperidone. Domperidone was pulled from US shelves so we have to purchase it from Canada. Apparently this med is safer than taking the Reglan that I mentioned in yesterdays blog post. He had an MRI this evening and hopefully we will have the results of that early tomorrow.
His diet has been advanced and he does have a bit of pain after eating. They took him off of the Dilaudid (IV pain med) because the last dose he received put a large welt on his arm where the site of his IV is. They are giving him Oxycodone orally in place of it.
Almost forgot. The doc told us today that when we came in Tues. the doc was concerned that it may have been "catastrophic". Thanks for not sharing that info until today doc...i appreciate it but if it happens again I may not believe that the "rapid response" is "procedural".
Hopefully we will get out of here tomorrow!!

Tuesday, September 28, 2010

Big day at Penn...Meeting Goals..

Today was my four month checkup at Penn and it went awesome.

It started with my Pulmonary Function Test (PFT) and I must say we kicked ass. My FVC was 4.15l (80% of Predicted) and FEV1 was 3.44l (83% of Pred)! All in all an unbelievable gain, so much so that after the first attempt they re-calibrated the machine to ensure something was not amiss. Note: last time I was tested 8/17/2010 my FVC was 3.62l (70% pred) and FEV1 was 2.98l (72% pred). So in short I added 10% to my capacity in just over a month.

My weight was 153 on their scales which was also a huge gain from the 140 I was last time .

We then went to see Dr H who was impressed with my improvements also. He flinched at my new numbers and questioned the accuracy. He stated that they usually don't see large gains after the initial pop post recovery. I assured him that they checked the machine and they are accurate, also they closely match what I have been getting here at home on my spirometer.

So things are not only feeling good, I now have some quantification from the experts that they are in fact very good. We are sticking to the same level on all my meds and getting bloodwork done this week on my rejection meds and vitamin levels.

One thing this visit reinforced with me is the need to set goals and work towards them. When I was at my lowest weight of 123 I set what I thought was a stretch goal to be back to 150 by my 41st birthday (Oct 1) and when I had my last PFT I said I wanted to be at 80% of predicted.

Well Goals Achieved my friends!

Quotes (by Denise):

"We're getting our life back...little detour." Jim after telling me he got us tickets to see Dave Matthews Band tickets for November.

"What's so important that you have to put your life and others in danger?" Denise regarding some idiot dodging in and out of traffic.
"Maybe he got his transplant call." Jim :)

Wednesday, September 8, 2010

No Rejection Bronch 3....

Yes that's right, got the results back earlier today and there is no signs of rejection in the tissue pathology. They decided that they will not treat the Pseudomonas since I am feeling so well(probably just migrated down from my sinuses). They are however going to treat the Aspergillus. I'm to start an anti-fungal on Friday. They want me to wait till Friday because the drug will interact with my Tac (anti-rejection) level. I'm to go from my current 4mg twice daily to 1mg twice daily of Tac starting Friday and then get my blood levels checked on Monday. They said it would take a few days before the levels stabilize.

So great news!

Tuesday, September 7, 2010

No Pathology yet....

Got a call from Belinda and they do not have any pathology results back yet from my bronchoscopy on Friday. They did however get results back from the fluid lavage procedure (fluid they sucked out after rinsing lungs). It is growing pseudomonas, MRSA and Mold (aspergillus). Since I am feeling and doing so well they will probably not treat the pseudo or MRSA since it is probably just migrating down from my sinuses (I was growing it before transplant). As far as the aspergillus goes they are waiting to hear back from the infectious disease Dr on weather to treat it or not. Short of it is we wait until tomorrow to see what is what.....

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 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.

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 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.