In Memoriam

Today the world lost another fine young man to Cystic Fibrosis. This disease is cruel and still takes great people from our presence. This particular young man was special to me and many people down here in Chapel Hill and the Richmond area where he was from. I'm sure his story touched many people far away as well. We need to take the time to remember Joseph Roberts.

Joseph was a true fighter. He was in the medical ICU with me here at UNC before my transplant in early July. We both were barely holding onto life then, and his parents became aware of my blog and existence down the hall from him. Despite being a hallway away, we never met each other, mostly because of our conditions and infection precautions. But the Roberts family was very supportive of my journey and fight and have even left a few comments here. Despite both having CF we had different pre-tx issues. I was happy to hear he received a transplant not long after me. I followed his progress through his blog maintained by his Mom, Donna, and Girlfriend, Amanda. He had a difficult recovery.

What I drew from him, I never commented here on my blog. But I will now. For me, to get through this second transplant I needed something motivating to grasp on to. Yes, I had my family and friends. But Joseph became a silent force for me. I would envision how hard he was struggling and hear how he was never giving up. Always positive, always fighting for a normal breath, or the day when he would go home. It made my recovery easier to deal with. When times seemed dark and the days turned into weeks, I thought about how there were younger, stronger willed people with CF, like Joseph right here at UNC, going through much worse. There was no way I could give up and get negative.

I can't imagine what he had to deal with the last few weeks. It is something that not many could have done or dealt with. I know he helped save me and today I feel a huge loss and grieve for his family, but deep down I hope and know it will make me even stronger and enjoy life even more, so I can carry on his memory for as long as I live.

Please go learn about this incredible person..

Joseph Roberts 05/03/1990-09/27/2010

http://www.facebook.com/pages/Friends-of-Joseph-Roberts/315785500969

http://www.cotaforjosephr.com/

-Mitch

2 months!!

Me with the boys a few weeks ago on Duke's Campus

Hello all,

September 21, 2010. What an amazing day today was to breathe and live! Hard to believe but today is the 2 month mark of my Second-Double lung transplant. Although I am marking this occasion, I have to admit that time has seemed so inconsequential. It is hard to describe. Sometimes I feel like more then 2 months have passed, sometimes it feels brand new like I got the lungs yesterday. To be honest I feel a bit enlightened in the sense that time has at times(irony intended) lost its construction in my thought process. I remember after my first transplant the days being long and counting each one. With these lungs I go to bed and wake up breathing perfectly, perhaps that is the difference. So, on this monumental occasion and to celebrate my continued life and presence I will take the time to honor my donor and his family and talk about that day.

Again, I don't know much if anything about this donor. I will first preface by saying I am grateful to my original donor, however it was not meant to be for whatever reason. He/She did give me close to a year though of continued life and happiness. thank you. I never did hear back from the letter I sent to my first donor family.

My nurse, Dave, an Irishman now living in the US, was my nurse that morning July 21, 2010. He had been my nurse for a few days in a row and watched me slowly descend over those few days. He came bolting in the room at like 8:30 or so, maybe earlier, saying they had lungs for me and it could happen soon!! I expected my transplant coordinator (wait, I didn't have one), or one of the transplant docs to come in bearing the news, so at first I did not really believe him. But that was short-lived. He assured me it was no joke. My Mom and Dad were there, I think my Dad had just arrived, the prior day?? memory is poor. I think Rebecca was there too, or on her way. The news gave me a jolt of adrenalin that lasted the morning. They told me to perhaps be ready for the surgery around noon. Not much time. I told Rebecca to go get the boys, so I could talk to them and see them before surgery. They got there around 10 or so, and I was able to kind of summon enough energy to not look to sick and make them think I was strong and everything was "normal" just like last time. It was a quick visit, but worked out perfect. We have photos somewhere and I will round a bunch up of the last two months and put a little slide show together.

Anyway, my adrenaline wore out around noon. By 3pm or so, I am wondering if it will happen or not. Finally, around 4-5 or so, they came and got me. It happened so quick. I don't remember the goodbyes. I do remember getting into the operating room and helped onto the table. Dr. Haithcock came in kind of hurriedly and I had enough time to joke with him one more time about how sore my right rib still was and if this time he could put me back together right. I think he was not in the joking mood, because like a third-base coach or something I saw him grab his earlobe, which must have been the "sign" to the anesthesiologist to knock my ass out, because after our little jibe it was lights out....That was a Wednesday evening, the next thing I remember was Rebecca and my parents and the respiratory therapist waking me up Friday morning..

I don't know much about my donor. I hope to find out more though this time. I will probably send off a letter very soon. These lungs feel so strong. They fit like a glove, or at least seem to. That was one of the major issues I had after my first transplant. I would breathe in and have a feeling of a giant gap in my lower left side.

I have a feeling this was a tragic case of someone very young and healthy dying early. I heard at least 8 organs were donated from this person!! That was the reason for the delay, lungs are the last ones out. I know the blood type was O+. I found out someone on my recovery floor received his heart and was out of the hospital in like 10 days. I know from Dr. Haithcock that these lungs seemed pristine and he was very happy that he was able to match them to me. Truly, saving my life. That is all I really know at this time and maybe that is all I need to know. Time will tell...

To the family of this person, there are no words to say. It is the most self-less act one can do for their loved one. An anonymous gift during such a tragic time. But at the same time, saving so many lives and altering the future for so many families, friends, acquaintances, and people yet to meet. So, perhaps that is why i don't pay as much attention to time because the gift I was given is beyond that it is infinite and not measurable. It is an energy a Force that emanates out and ensures that their spirit continues on forever.

Thanks Donor(Friend)

-Mitch

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

go skins

I am watching the Redskins hold on to a 3 point lead, while the cowboys march up and down the field, so this lead might not last long. Uh Oh, I should not have brought my football loyalty into my blog, could lose a lot of readers.

My post two posts ago, which mentioned a few of my personal beliefs on current events attracted a few emails and a comment suggesting that the blog was now unreadable because I injected my political thoughts. Is Glenn Beck and Sarah Palin Political figures?? I thought they were cartoon caricatures!! I did not think it was a political post at all. I have been to Alaska and a Reindeer could be governor. For like a few weeks or maybe a month if it was the dead of winter. I was calling out inconsistencies in statements. It will not bother me if the dems lose the house and the senate. It is what it is. I have voted all ways, for the record. Democratic(which yes, I lean), republican(which as I get older some conservatism follows), and when I am real crazy on medication Independent. See now this blog has become political. I am sorry if I offended anyone but please if that post bothered you, please un-subscribe. Or in your comments make some humor at anyone or any thing you want and if it is funny I will probably laugh and I wont be offended. Unless of course it is offensive.

Now back to the lung transplant. Or second one for that matter. Had a fun weekend with my mom visiting. Things seem well. The lungs still feel very strong, however I still have some swelling in my chest area that just continues to prevent deep breaths and the lungs to fill all the way up. Some swelling has returned to my legs a bit with some pitting edema, but I have been told that this will fluctuate. I gained 13 pounds though in like a week, so how can that be from eating. Although I have been eating a lot. Even with not being able to take those huge breaths what I do have is great. I don't feel short of breath ever. We played some soccer and basketball with the boys, who won their first real soccer game 6-4 in their under-8 league. Both played fairly well for their first real league game.

I promise to post a transplant medical recap soon, as I wanted to document some of the procedures and protocols we did.

go skins,
Mitch
(go ahead cowboy fans and send me the hate mail)

Deja-Vu-09/08/09

I meant to possibly post yesterday, for those that remember September 8, 2009 was when I received my first transplant. Today would be when I woke up. Things are not what they always seem. From the time I awoke until the time I was discharged, everyone told me things were going perfectly. No set backs at all. Despite having my sternum broken and a small infection I was out in 17 days. More then one resident or fellow told me I was the best transplant recipient they had ever seen. I did not always feel this way. I had always had some intuition that something did not quite feel right. I had issues in my lower left side, and they told me that was due to a mis-match in size and should fill in, it did after 3 months. Throughout the 9 months I had some really good times and felt fairly well. I was never able to get my pulmonary function tests past 50% and that was always frustrating. I had serious narrowing issues, but they resolved. Bottom line is I was thankful for my donor and still am, but the match was just not meant to be. I have to move on and I have....

07/21/10-This is my new date. It has been 7 weeks. I am making incredible progress this time, despite how sick I was before and a few complications I had during the hospitalization and surgery. Out in 17 days last time, I was in for a total of 48 days this time. 2 weeks before the word came for a donor. The deja-vu part is being back in chapel hill for another fall. The boys already know so many friends since we are at the same school, our schedules are slowing becoming what they were last fall. Overall,we are settling in.

The difference is in how I feel. These lungs feel like a perfect fit. If not for the weakness of lying in bed for 48 days and having swelling issues, I feel like I could climb a mountain. Which I sort of tried, but my legs turned to rubber after a few steps. I am going to rehab and slowly picking up the pace. I have been having some issues with my feet hurting and burning when walking or on a treadmill for a period of time. When I say burning I mean like in an oven. It is very painful. Sometimes it extends to the night and my feet are just painful and aching all night. The only other issue right now is the continued to damage to my right arm. I saw a Neurologist for a follow-up yesterday, and he basically said nothing. He said it could be permanent damage to my bicep and muskulocutaneous nerve, but it could regenerate over a long period of time. So, although very annoying and at times painful, these side effects I will take for some great lungs that like my body. The next few weeks will really be important as the Campath,the induction therapy protocol we had UNC do, begins to wear off and my t ells come back a bit. More on that in the next post....

-Mitch

ps. Happy new year to those of you.

I BECKon you to Read

Hello everyone,

I know it has been awhile. As you all have gathered from my ramblings and my life, the delay was from my attendance at the Glen Beck rally to reclaim America. I bought some gold coins while I was there too, instead of just regular gold which is so over-rated. lol, I digress. Being in the hospital for 48 days the chalkboard hypnotized me. But luckily, the code blue snapped me out of it. Sorry, if you are a Glenn Beck fan. I just don't understand people who swear by the constitution, yet want to ignore freedom of religion, and want to change or even better get rid of another (14th)amendment. But other then that the constitution is perfect and needs to be restored. haha. love it. But I digress, this blog is about my health.. Could you imagine a rewritten constitution by Beck and Pallin? Amending Jefferson's and Adams beliefs about freedom of religion: " All religions are tolerated, as long as no Mosques are built within 5 miles of any "sensitive sites" because all terrorists are Muslims, but people who shoot up post-offices are just misguided or troubled. Although they could be witches, but we tolerate that in basements only."

So, if I have time to write that and probably upset some of my audience then I must be feeling a bit better. I am so sick of "news" though. It is so obvious that our country wants the same things, yet we are so divided. I see so much more hidden racism now, then ever before. It is hidden though and that is the scary thing. Wonder what our parents thought about the 60's.

My health has been steadily improving. I lost all the edema weight and am back to my scrawny self. Now I need to gain it back. My breathing seems to improve everyday though and I can tolerate so much more activity. This past weekend with Lois (my mother in law), we did many things. Went to another UNC women's soccer game. We walked all around Duke's campus and their famous garden area. I never get short of breath or even out of breath. Unless using my muscles. They are what is still holding me back and they can be worked on. My legs are weak, so if I go up 10-20 stairs they feel like rubber, but my lungs are like, "come on lets take these steps two at a time". Of course, I need to build up my stamina as well. It will come I am going to Rehab now 3 times a week.

My last chest xray looked good and improved. I still have some pulmonary edema but it is resolving. The right side looked so clear. Black like the night sky. Very promising. I have some pain around my incision area, ribs etc. but not that bad. My main complaints now are secondary issues. My feet are a bit numb and burn at times. Weird. My right arm still is very compromised because of the brachial plexus injury. It is very painful at times. I can use my hand though and can use the arm as long as I don't try and lift anything over 3-5 pounds then boom the arm drops. It has atrophied quite a bit and looks like a dead-arm, but again I can lift it use it, throw with it, use all my fingers, so I can't complain too much, just no bicep innervation at all so it is very weak. There are other muscles that are gone too, but I don't know what they are called.

My next post, which will be shortly, I want to recap medically what really transpired during the transplant and the days in the hospital. We used a very new, unproven to an extent, yet experimentally positive protocol called Campath. It had never been used with lung transplant patients at UNC. Also, my surgeon the great Dr. H, had never actually done a second transplant since he took over as head of surgery. He had assisted on many with the legendary Dr. Egan. So, the team had a lot invested in me and really looked out for me. I had a bumpy recovery and have not officially recognized my donor yet. I will do that shortly as well, but here with Rebecca and my family we recognize him daily. These lungs feel so alive and strong and I thank the gift I received. To really have my life saved, when I was practically on my death bed is very profound and it has taken a few weeks to realize what has transpired.

-Mitch