A look Inside

Hello All,

Happy and healthy new year to all of my friends out there, regardless of you religion. With the sun setting I guess all of my sins for the past year are forgiven, and it is time to create some more! JK, of course. Although, I miss being at my Aunt Harriett and Uncle Steve's tonight to delight in her sinful kugel. Note to Aunt Harriet, my Mom came down here and tried to replicate it, but I did not have the heart to tell her yours was better. Saved it for the blog. First sin of the year accounted for.

Moving on, We/I continue to do well down here in Chapel Hill. I had another clinic appointment yesterday, Friday. I am approaching the 2 month mark of my second transplant. It really does not feel that long because I had to spend practically the first month after transplant in the hospital, with the side effects and problems we have blogged. That said, my check up was positive.

I was put back on lasix the middle of last week, because of the slight swelling returning to my legs and my mid-section. It seems to have worked, as my legs are not swollen. However, I still have a slight swelling right in the center of my chest. My chest x-ray below, shows you a Look Inside of Me! It is hard to know what to look for, but let me attempt to guide you. Aside from bones, your heart, and then lower down stomach, intestines etc. The chest xray should look clear or black. If you look to the left, that is my right chest. It is relatively very clear. If you look to the right, that is my left chest. Believe it or not it is relatively clear as well. What you see is my heart, and then a lot of the white is my Tunneled PICC line I still have in. PICC actually, stands for Peripherally Inserted Central Catheter. Peripheral meaning they usually start it in your arm. However because my arm veins have been exposed to over 30 plus picc lines they are scared and unusable. So, they start this in my upper chest and tunnel the line into a large vein. I still have my in, and what you see is the actual plastic lines and tubes. Those make up the spots. They are actually outside my body, the only thing inside my body is the small thin tube you see at the top right. There is some cloudiness, this is some of the pulmonary edema I still have. Basically, the swelling still leaves some fluid and this just takes time. There is also some spots or areas that I have no idea what they are, but am told the xray looks good. This is where you nod your head and agree because you feel good. I tried to label a few things, but did not want to take the time with a photo editor, but you get the idea.



My transplant was somewhat unique at UNC Chapel Hill, not for the sake that it was a second double-lung, which they and most centers shy away from now. Why do they shy away? A few reasons, outcomes tend to not be good, it is a more difficult surgery, and there is probably other various political type reasons that I don't want to go into. The good news is Dr. Haithcock, Becky Cicale (my transplant coordinator for my first one, and up until right before transplant), and Dr. Noone, agreed that I was a good candidate for re-transplant and they were willing to list me. If not for them agreeing to this, I would certainly not be writing right now. Even though it is always a team approach, Dr. Haithcock ultimately makes the call and he truly saved my life. Thanks Dr. H. Getting back to the uniqueness. I did an induction therapy called CAMPATH during the surgery. This has never been done before at Chapel Hill for lung transplants. It is a protocol that the surgeons at Pittsburgh have been using for a few years now almost all the time. However, there is limited multi-center research (actually none that I am aware of) on its effectiveness for better outcomes. Pitt published a study in 2005 touting its benefits at their center and they continue to study it. There is also limited research at other centers as well, using it in other ways. However, given the fact that I entered chronic rejection so early and when it presented it did so rapidly, we(my Mom and Rebecca), contacted Pitt and talked with Dr. Noone and the other transplant doctors here and put helped put all parties together and we agreed to try it on me. All these decisions happened so rapidly. Within a matter of 8 days. The head of the program at Pitt Dr. Pilewski sent the protocol to UNC and communicated with them on what was recommended. Here is a quick link to the published study in 2005, which begins to talk about its effectiveness. http://jtcs.ctsnetjournals.org/cgi/content/full/130/2/528

So, what is Campath? It is a chemotherapy drug. I will go into it a bit more later. It is not some new innovative drug. The doctors at UNC are very familiar with it, and have used it with Cancer patients many times. Dr. Haithcock uses it when he works with lung cancer patients. I think it is used in different ways for kidney transplants. What it basically does is completely wipe out your t-cells and thus your immune system.

The brief protocol: I received three doses of the medication during my transplant surgery. I am not sure on the specifics times. After surgery I thus require much less immunosuppression with prednisone. Actually taking a much smaller amount. Which is easier on the body, mood, blood sugars, etc. There use to be a thought that the other two suppression drugs, cell-cept, and tacrolimus, could be reduced as well, but they have been kept the same. The hope is it prevents acute rejection and helps your body accept the new organ. After 4-6 months it starts to wear off, so to say, and in the long run it will help prevent chronic rejection, because it gave your body those first 6months of acclimating the new lungs. That is the theory as I understand it. Given my situation we thought it was a no brainer and rolled the dice.

So, briefly I wanted to fill you all in on what was medically different and in essence experimental with this transplant. So, far so good though. Like I have been posting, I have had no signs of acute rejection, no fevers, no cough, etc. My pulmonary function tests have been steadily improving, I reached approximately 50% yesterday. And again, I feel if the swelling and that annoying pressure or band like feeling in my lower airways subsides that number should sky-rocket.

We had a great week with the boys and are starting to fall into a nice routine. Soccer practices, play dates, Rehab, and other exercise activities. Rebecca took me to the place where she works out on Monday. It is basically a martial arts gym, and they have classes all week long and you can go to any class you whenever you like. So, monday morning they had yoga from 9-10 and then a strength and conditioning program from 10-10:30. I sat in. Let me just say I am still sore. I of course modified a lot of the yoga, the instructor was very cool and helped me, but it was a great workout. The strength and conditioning was a bit nuts. It is pretty hardcore, I did not feel uncomfortable though, you can modify everything, and it was small and the instructor knows us and our story. But it is geared to martial arts experts and here I am 6 weeks after a double lung transplant trying to do Japanese knee lunges and all kinds of intense but fun moves. I would like to go again, but unfortunately won't be joining, yet. It is just too hardcore even though I can modify whatever I need to, but I need so much time to recover etc. I might go to the cardio-kick boxing class this week, and then decide for sure. Needless to say, Rebecca goes to these classes all week and can kick the shit out of anyone. So, back off.

Well, that is about it from here. Tomorrow, we have a fun day planned. UF women's soccer is actually playing UNC! The game is at Duke though, because they are hosting the event. After the game is actually a lung transplant gathering at the duke gardens. It is called lungapalooza (don't know if Perry Farrell will make an appearance, but you never know). It is suppose to be a big deal. Food, games, music, etc. We will take a lot of photos.

-Mitch