Friday, December 24, 2010

Happy Holidays and a Healthy New Year!

Here is Luke giving everyone a high Five she is so happy


Hello All,

I want to thank so many people who have privately emailed me, messaged me on facebook, and sent me text messages regarding my last post. I am glad it moved so many people. If inclined, please also post a short little comment in the comments section below. Whether positive or negative, I really don't mind. You all know me by now. It is just this is the only historical record and "journal" I am keeping. It is nice to have people's reactions and comments on here to provide feedback for me, my family, and others just glancing by. In ten years, I want everyone to go back and read this and be able to read everything.

I hope everyone is having a great holiday season and everyone has an incredible year next year. I am signing off for now, as we travel once again on a trip we have had planned now for two years but was obviously postponed due to health. I started to decline very quickly shortly after reserving this eco-family adventure to Costa Rica almost 2 years ago. The company has been so patient with us until my health improved. The doctors gave us the final OK a few weeks ago and re-confirmed this on this past Wednesday. We are off tomorrow!!

Thanks Everyone,

Mitch

Thursday, December 23, 2010

Response received

Hello All,

Well this should be an interesting post. While in Chapel Hill on Wednesday, I was presented with a response to my letter I sent to my donor family after my second transplant. This was forwarded to me through Carolina Donor Services as this process is anonymous until both parties agree to eliminate the third party. I had many mixed emotions. I was eager to read it, nervous, apprehensive, scared. You name it and I probably felt that emotion. I did wait till I left the hospital to find a nice quiet area at one of my favorite places in Chapel Hill to open it up. The parking lot behind Franklin Street near Pepper's pizza. I'm kidding about this place being my favorite, quiet, and nice. But It is where I opened it. I was just to anxious and hungry. I love Peppers pizza.

It was a beautiful thoughtful letter and you could tell throughout how thankful and happy the mother was that she received word from me. Her emotion and sadness for the loss of her son was conveyed throughout and my letter helped her cope. I will not give any details beyond this of the letter however, I decided to share the letter I wrote to the donor family, it is below. I have always tried to be as open and honest about this whole process. I never posted my first letter to the family because I never received a response. I felt not knowing them I would maintain all privacy. So I upheld the same decision for this second transplant. After receiving this response, I felt OK about posting my original letter. If over time I have the chance or desire to communicate with this donor family further and they approve posting their original response, I will.

One thing I want to confess to. I made the decision to withhold the fact that this was my second transplant. I did this for a few reasons. One, I felt opening up the fact I needed a second transplant would have left them with numerous questions, such as, what happened to the first? Why did I need a second one? Will their loved ones lungs work on me? etc. It was important that the specialness and importance of their decision was not compromised by questions at this time. Two, I wanted the letter to not be distracted with all the medical details I would have felt necessary to disclose on why the second set was needed. I wanted the letter to focus on my thankfulness, extreme gratitude, and how it changed my life. So, I took elements of my life leading up to my first transplant 10 months earlier, and the short 1 month before the second transplant when my health became so incredibly critical and combined the two. I do plan on my follow-up letter to explain to the family that this was my second transplant and just how critical it was and how incredibly different and positive it has been compared to the first. With that said, here is the letter I wrote to the family of Clayton who was 19 years old and died way before his time....


11/21/2010
Dear Donor Family,

Thank You. On July 21, 2010 our lives changed forever. I am the recipient of your family member’s lungs. Without this remarkable gift and complete selfless act of generosity I would not be alive today. There are no words possible that I will be able to convey to you that would quell your grief or make the pain of losing someone special subside. I cannot fathom what your family has and is enduring. However, I can tell you that your loved one is a true hero. One of indescribable proportions. He/She saved the life of a father, devout husband, son, grandson, brother, friend, and human being from dying from Cystic Fibrosis.

My name is Mitch, and I was diagnosed with Cystic Fibrosis at birth. CF is a genetic disease that mainly affects the lungs and digestive system. Despite a relatively healthy childhood, my lungs started to deteriorate in my teens. I am now 37. I was able to live a fairly normal life though while battling this disease. The last 5-10 years my health significantly deteriorated. It was a slow progression though with steady trips to the hospital however, I was able to progress in life somewhat normally, ie. I married my wife Rebecca, who I met in college over 15 years ago now and we have two beautiful twin seven year old boys, who are my inspiration, I have a career, etc. Although a struggle, I always maintained the mentality that I could conquer this disease. Well, last spring and specifically into the summer my health took a quick and sudden downturn. Transplant had been discussed years ago, but I remained too healthy. Over the continued years, I was on oxygen, I had suffered numerous infections, collapsed lungs, and bleeding into my lungs. I never would give up. Finally, knowing without a transplant I was going to die, I was listed on July 13th. Transplant was my only option. I continued to decline extremely rapidly, and on the night of July 20th, on numerous breathing machines and the maximum amount of oxygen, hardly able to move anymore I turned to my wife and told her, “I don't think I can go on too much longer”. Just uttering those words was extremely hard for someone that had fought this disease my whole life. My wife had a simple answer. 'It will be ok.' I made it through the night, with that comfort of knowing everything was ok. At 8am, my nurse came running into my room and told me and my family that they believed a donor was available. My life was saved.

I don't remember much immediately after the transplant, but I wanted to share one story with you. The procedure, according to my incredible surgeon, went smoothly and he told my wife he put a beautifully perfect set of new lungs into my body after spending hours removing my current scarred lungs. The operation finished at 1am on the 22nd, I did have some small complications requiring some more surgery that day to stop bleeding, but by 8am on the 23rd, I was fairly coherent and strong enough for them to pull my breathing tube. This was an incredibly fast time; some people remain on the vent for days. When they pulled the breathing tube I remember taking a huge deep breath in with my own power. Something I had not done for close to 10 years! It was as if these new lungs had awakened and my whole body relaxed. It was indescribable. I felt free, alive, thankful, and was ready for the process of recovery. This perhaps is one of the hardest things because lung transplant is one of the most difficult types of transplant to perform and really hard on one’s body. However, the powerful essence of that first breath, on my own, made me feel like recovery would be easy. I was motivated. I spent the next 3 weeks in the hospital slowly healing, walking, and improving. Each day walking more, the lungs wanting to breathe deeper and deeper. Everyday though, I think about my donor and his/her spirit. It is impossible not to as it is my breath. It continually motivates me to succeed and continue to recover. I have had zero bouts of rejection, which is rare and a good scenario. I have had other complications, however my doctors are confident that things will continue to improve. I continue with Rehabilitation trying to get stronger every day. I will never give up.

I wanted to write to you all ever since I first received my transplant, but at the same time felt like I needed time to recover and regroup. The recovery process is difficult and I battle with setbacks every few weeks, but I am very inspired and motivated to succeed. The lungs in my body feel strong and I can already do so many things that I could not do years ago. I want to personally thank you all from the deepest parts of my being for the gift of life that was provided to me. Just as I won't be able to understand the grief of the loss you experienced, I cannot begin to describe the amount of love, happiness, and gratitude my family and friends feel for my life continuing. I hope you all can share in some of this joy that your loved one saved a life and is a hero to so many people.

If you all are comfortable sharing, I would like to know a little about the type of person your loved one was who donated their lungs to me. What they enjoyed to do, or their hobbies, interests etc. I don't want any of my life to be wasted given this second chance and if I can honor their memory in any way by knowing them, or contributing to their passions or interests, it will help me in a way say thank you and carry on their spirit not only with my breath but also in my actions.

With deepest regards and love,
Mitch
Double-lung Transplant 07/21/2010 due to end-stage Cystic Fibrosis and OB


Friday, December 10, 2010

Officially released


Here is a photo taken while Visiting "Pops" and Nancy, Rebecca's Dad and friend

Hello All,

December 1st, was our last day in Chapel Hill. We moved just about all of our things back to Maryland over thanksgiving. We went back to Maryland for the holiday and enjoyed another incredible Thanksgiving dinner at my Aunt Harriet's home. It was great to see everyone. We went back to Chapel Hill for a few days and for me to have another clinic appointment.

Everything went well. My breathing tests continue to slowly improve. Which is the best way for them to go. Not to go too much into the numbers, as it would cause for more detailed explanation, but before tranpslant one of the main numbers they look at is your FEV1. This is how forcefully one can blow out air in one second after breathing in their deepest breath. It is a good measure of how strong the lungs are, how diseased they may be due to narrowing or blockage, and also capacity. Well before transplant my FEV1 had dipped to 18% on December 1st, they were 63%. Hopefully they will continue to go up to the 80s or 90s. Who knows. Lung size plays a small part. Because the number is based on someone my height etc. If donor was shorter or smaller then the percentage is skewed down a bit.
I also continue to feel very good from a breathing standpoint. I raced Matias about 200 yards today and when we stopped I barely felt like I was winded. I do have some soreness still along my ribcage area mid chest. Also my feet continue to bother me. But these are issues that don't slow me down at all.

We are taking the next few weeks to do a lot of travelling! We are currently in Florida visiting many friends and family. We spent a week in Key West as well. We rode our bikes all through the old city and it was a breeze. I have another follow up in Chapel Hill on the 22nd.
The plan is to be back to work the first of the year. I hope everyone who is following this blog had a great thanksgiving and is ready for the new year. I know I am.
-Mitch

Sunday, November 21, 2010

4 Months! No need to hold my breath


Kitty Hawk Nov. 2010. The pictured hill and memorial behind us is discussed in post. Cold this day..50's with a 35mph wind.



It has been awhile since my last post. In the lung transplant blog world, that means one of two things. Either A) something bad has happened and no one has thought about posting, or B) Things have been so good, blogging seems tedious and takes up time for living. Well for me the answer has been B!

Today marks my 4 month anniversary of these stellar new lungs! My breathing improves everyday. My body is still adjusting to the new lungs, in a way. As I am sure they were not the same size as my old lungs and my new old lungs (I never know how to refer to my first transplants lungs). So, when I do some exercise and do some seriously heavy breathing I get sore in my lower frontal rib cage area. Like a muscle soreness akin to working out your arms or legs. This is a good thing I believe. I have no terrible gaping hole feelings or rattling ghostly sounds at all when I breath(like my first transplant). It has been this way from day one. However, I do feel that perhaps the lungs, when I breathe deep, put pressure on my lower airway diaphragm and intercostal muscles and they get sore. Mostly because I haven't used these muscles in ten plus years. I habitually still breathe from my upper chest muscles and accessory breathing muscles. I have to relax and reteach my body that it is OK to use my stomach and diagphram to work, that I won't launch into a major coughing fit when I do this.

So, in a nut shell, my breathing has been perfect. In fact, I have coughed maybe 10 times in 3 months. And that may be an over estimate. I have had no congestion except maybe one time when I had a sinus infection. I have to take the time and remind myself how bad the coughing was before my first transplant. The waking up and coughing constantly for 3 hours. Finally, the chronic consistent cough would subside at the desk in my office at around 10am. At this time, I would feel brave enough to go see customers or make phone calls without people thinking I had the plague when they heard me cough. Although, with the smallest amount of exertion or movement I would trigger a coughing fit at all times of the day. So, explaining to people I was not dying was always the norm. That has been the most amazing thing about both transplants. The lack of coughing. What a relief.

I have had some musculoskelatal problems and a few issues with blood levels related to potassium and my tacrolimus level (This is the major drug for immunosuppression). But nothing that has really slowed me down. The cortisone injections in my hips worked. No more hip pain. However, my feet which have always bothered my but took a back seat to the hips for awhile, flared up with great intensity. They are numb, tingle, are atrophying, look frail, and sometimes hurt intensely. Why?? No one seems to know. There are 3 theories. 1) an MRI showed I actually have 2 herniated discs in my lower lumbar5 area. This is putting pressure on the nerve roots. How I have this now is beyond me. I am seeing a spinal surgeon tomorrow and he can better review the MRI and my symptoms and see what might be related. 2) Diabetes. The last year I have been a diabetic with poor glucose control. I tend to run high. And also spike up and down rapidly. I admit I am not the best at controlling glucose. I take the insulin, but there are times when I need a coke and snickers and just cant find that insulin needle. So, perhaps I have developed a diabetic neuropathy. This makes the most sense with the symptoms I have, however it is unusual to develop this in about a year. It usually takes 15 years of poor control. However, no one really understand CF related diabetes to know for sure. and finally 3) it could be the Prograf (major anti-rejection med), it lists peripheral neuropathies as a side effect, and many people complain about heat in their feet when walking and on prograf. But the doctors never want to acknowledge this theory and think it is virtually impossible. I think they are right, however it bugs me that they lend it no credence whatsoever. I think it is because they want me to stay on this med at all costs. And I do too. They believe it is superior to Cyclosporin, the other drug for immunospression that was used before prograf.

So, I am left in limbo. The pain and discomfort I can get by with. However, my feet are wasting away and have such poor sensation. Sometimes I can't tell what position my toes are in, they get stuck in my pants and I can't move them when dressing. The pain will act up at night and force me to stay up to 3am watching pathetic shows. This week I see the spinal surgeon and the Endocrine specialists.

So, focusing on the positive. My breathing and what I have been doing. Here is a sampling of what I have done since my last post.
-trick or treated with the boys and friends, walking around for miles with not so much of a hint of tiredness
-Playing basketball every Tuesday afternoon with Matias. He looks like a natural, like his Dad. Come on, all my real friends out there know I had crazy skills. For a kid with CF, I made you all look stupid on the court.
-Wrestling Simon and throwing his 52 lb. body into bed. That's right, you heard it, I can lift 52lbs of giggling, struggling, and delightful child now!
-kayaking in Kitty Hawk, NC.
-Hiking up the huge hill at Kitty Hawk to see the Wright Brothers memorial. Serious incline. Not one problem with breathing. Running with the boys down the exact path the Wright Brothers did their first flight.
-Riding my bike all through the neighborhood, and keeping up with anyone (except Lance Armstrong). Riding back from school with the boys.
-And subtle things that are taken for granted. Getting right out of bed, going to the store, walking the dog, cleaning the house (ok, I'm bullshitting, my lungs can not handle this yet. So, I tell Rebecca). And just being! Being a Dad, husband, friend, partner, and member of the community without feeling like I had a giant SICK sticker stuck to my forehead.

I saw my surgeon, Dr. Haithcock on Friday. I didn't get a chance to talk to him, but I felt such gratitude, finally. I was thankful when I last saw him before discharge, but I was still so apprehensive and scared from what happened. I was going home, but holding my breath. But seeing him made me realize how this man stood up for me a second time and gave me a chance to live again. The second set is always better. No matter what happens, these last 3 months out of the hospital have been incredible and I have appreciated life like never before! I've finally let that symbolic breath out. No more holding it any longer.....

Thursday, October 28, 2010

The New Me

Simon on cloud nine with his "bestest girl friend Abby"




What a great week it has been. I was able to make it home to Maryland for the first time since I left in a breathless rush on 07/07/2010 and was admitted right to the hospital. A few days after that I was in ICU and the rest is kind of a blur. I survived thanks to the incredible staff at Chapel Hill, my caretakers Rebecca and my Mom, Gayle. Mentally, I had to draw support from the thought of somehow making out of a second transplant and being able to just hug and experience life with the boys, Simon and Matias. To do this, I relied on all of my family and friends that were pulling for me. It was like I was sending out an SOS, a message in a bottle, while I was waiting for another donor and I could feel a huge support network pulling for me. The same thing with recovery. There were plenty of times where I complained and thought I just couldn't do it or things were going wrong again and without people pushing me and sending me messages of support, I wouldn't have been able to have stayed sane. One time was enough, but a second time??

So, to be home and see my house and yard with the beautiful fall foliage was symbolic. We were lucky enough to visit with so many people even though we were there such a short time. We devoured incredible food and even were told to keep it down at one restaurant, we were having so much fun. (or at least one of us was told to keep it done ;-)) So, thanks everyone for a great weekend.

I don't know why I deserved yet a second miracle chance, all I know is that I am still alive and doing incredibly well, in the big picture. The lungs feel exceptional and I am gradually starting to retrain my breathing muscles to use the full capacity of these lungs. For over 10 years, I had been taking very shallow breaths and using my accessory and neck muscles to breathe. It is easy to fall into that habit. But now I need to strengthen my diaphragm and intercostal muscles to take full deep breaths unconsciously. There are trade-offs with the New Me. My next post I hope to provide a list of all of the side effects, and little subtleties that are different in my body. It will take some time to get use to. But to give you an idea, diabetes, neuropathies, shaking, sensitive skin,aching bones.. And the list goes on, but it makes you feel different. I will explore that in a future post, as I want to point out to people that are waiting for transplant or have just gone through one what might be possible to experience. However, with all of these bothersome issues, to be able to breathe and have fun again is more then worth it. They should call people with Cystic Fibrosis who undergo transplant something like CF 2.0 We have a new lease on life from some selfless hero and their family. Which between the two of us is a New Me.

Happy Halloween

Thursday, October 21, 2010

3 Month Anniversary

Hello all,

Today is my 3 month mark post second transplant. My lungs and breathing feel perfect. Well, as perfect as I know perfect to be. I received my biopsy results before the weekend actuall, Dr. Coakley was nice enough to call me and tell me before I left for the Phish show. Everything was completely negative. No signs of any acute rejection, no infection, not even a hint of congestion. Airways were wide open. So great news all around.

I then preceded to enjoy a beautiful phish show. Some highlights: guelah papyrus, mango song, pebbles and marbles, David Bowie, Crosseyed and Painless(talking heads, which is always rocking)!, 2001, sneakin sally through the alley, and an interesting YEM. So, no disappointments there. I left out many more....

Despite the show, I had plenty of down time in my hotel room. And was actually able to relax in bed and ponder the last 3 months but also the last year. What a whirlwind. So quickly you forget about the sick days and start to take for granted breathing freely. I am not there yet, but isn't that the goal?? I've definitely almost forgotten just how sick and close to death I was. However, when your transplant surgeon admits he was very worried (but to his defense, not till after the tx) then you tend to never forget. But I don't want to take this gift for granted. So, it is a bizarre dilemma. I finished up a letter to my new donor family on this 3-month anniversary. I really hope the letter finds them and helps them. I do hope for a response. It was disconcerting last time to never get a response, however I can understand why a family or lack thereof might not need to write back. Thanks might just be enough.

Finally, what once would be a big deal but now seems small. I ended up having to receive cortisone injections into my hip joints this morning to treat the chronic hip and muscle pain I've been having. An orthopedist thinks I have an impingement syndrome in my hips. Well the buildup was worse then the procedure. It hurt, but after 2 double lung transplants it was a walk in the park. Good news is, it seems to be working! Pain is so much better. Let's see what the next week holds.

Looking forward to starting this 4th month out on the right foot, or left as long as I don't have any pain. ;-)

Thanks everyone,
Mitch

Thursday, October 14, 2010

Full Circle

Riding the Chopper bicycle!! You all know you want one!

Hello All,

I wanted to quickly touch base as my 3 month mark of my second transplant is quickly approaching! I can not believe all that has transpired the last 4 months. Like a previous post I made, the time seems hard to measure.

I continue to do very well this time. The lungs feel exceptional. I can breathe freely and deeply. In fact today, I had my 3 month bronchoscopy. This is where they go down into the lungs and take a look at everything and take a biopsy to check for rejection. They did my procedure in the OR, under general anesthesia just as a precaution given my bleeding episode last time. It went perfectly. IV insertion (no problem), sedation went perfect (love propofyl, not as much as MJ though), recovery and discharge were easy. Dr. Coakley said the lungs were wide open and looked great. No infection present at all. They took samples and they will take 3 days or so to come back. I feel great, so I have no reason to believe anything will show up. One never knows though.

My only remaining major issue is the pain I suffer from in my hip joints on both sides. I believe I mentioned this a few post back. It turns out I have an impingement syndrome that has developed. According to the Orthopedist, close to 10 years of practically no real intense physical exercise caused the joints to develop some tissue and tightness. I exercised real hard about a month ago for 3 days straight and tore the tissue away and now when the muscles and tendons glide across the joint they get impinged upon. It has made me slow my gait to a snails pace. I can still work out on a bike, and do certain exercise. I also have worked more on my upper body in Rehab. The treatment is a steroid injection into the joints. Not much fun, but I seem to have no choice. Ironic that now I can breathe freely, but cant walk fast or run to enjoy these lungs. I'll take the breathing freely though anyday. What a great feeling.

So, tomorrow I have clinic and expect a good report from that. I will post a nice synopsis once I get my biopsy results.

I am heading off to yet another Phish show Saturday in South Carolina. I need a little escape to gather my thoughts and put into perspective all that I have been through and all I have ahead of me. What better way to do it then enjoying my favorite band...

Until then, thank you all for the well wishes,

Mitch

Monday, September 27, 2010

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

Tuesday, September 21, 2010

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

Saturday, September 18, 2010

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

Sunday, September 12, 2010

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)

Thursday, September 9, 2010

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.

Monday, September 6, 2010

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

Friday, August 27, 2010

Mitch is Home Sweet Chapel Hill, Home



We picked Mitch up from the hospital Tuesday night after "meet the teacher" evening at Mary Scroggs Elementary, and we brought him to our home in Chapel Hill. Simon and Matias started first grade on Wednesday. And get this! Mitch actually got on his bike and went with me to pick up the boys in the afternoon. He even pedalled a bit (its an electric bike- but even holding himself and bearing the heat was tough. He really wanted the boys to be happy he made it, and they were!

Mitch is losing fluid. He now weighs 137, which is coming down nicely. His potassium is UP again to the 6's so he is drinking a med to adjust that, hopefully promptly. His PFT's today at clinic were 35%%. Dr Lobo said that is because of the fluid and will get better. Docs are pleased with his progess. His kidneys are in a normal range now. He got a shot to raise white blood cell count- its too low now- because of the campath protocal he had to avoid rejection- which is basically like chemotherapy.

Really thinking about those who are still having a hard time in the hospital and fighting very hard,...really hoping it all works out for you, very soon...

Tuesday, August 24, 2010

Code Blue: Superman-Man of Heal


Taking a long walk yesterday with the boys. Giving them a free ride on the IV pole!

I'm going home today! Amazing since Friday, they called a code blue on me during my bronch procedure. I think I just needed a jump start. Because by saturday afternoon I was feeling much better.

This has been a long battle. I have a tendency to block things out including time, that is my coping mechanism. Before transplant especially, those two weeks were I basically was getting worse each day it simply does not seem like 2 weeks. I have been in the hospital now for 48 days. The good thing is it does not feel like that much, however as i get ready to go home the time will start to knock on my door. I will wonder how much the boys have changed, how it is almost September, the boys start first grade tomorrow!, football season is starting!, and I will think about those 48 days and ponder what is different. What is different is I now have two new lungs again. This sounds weird but these lungs just seem better and stronger, eventhough I am not breathing great yet.

Although I am able to go home, I have a long road. I still have major edema and need to shed at least 20-25 pounds of water weight. The doctors think with my kidney function being normal again I should shed it as I move around etc. which is more likely at home. I need to stay on blood thinners for awhile because of the blood clots I have. I need to watch my potassium level. The edema is mainly in my chest and upper legs. In the chest it creates pulmonary edema. So, my breathing is improved, but won't be great until I lose the edema from my chest. It is like I have a girdle on or something. when I try and take a deep breath in, a band of swelling just tightens and prevents my chest from expanding. Very annoying. Finally, I have some secondary issues like the nerve injury to my right arm. It is a mess, I have no bicep innervation yet. So, there is no bicep muscle, it is just flapped down. Some of my fingers are numb, and my forearm as well. so, it is very very weak.

But the bottom line is i am healing. I am breathing and feeling much better and moving around. I am going home on no IV's at all. however, I am nervous to take out my IV line in my chest as I have serious access issues and I know if it is pulled I will need IV meds in a week. The doctors agree it is safe to leave it in for a bit. So, we will see in two weeks or so.

Thanks for all the support. We have conquered the toughest hurdle and are ready for the next.

-Mitch

Saturday, August 21, 2010

SUPERMAN RETURNS

THIS IS MITCH IN ICU THIS AM, JUST AFTER EXTUBATION
THIS IS MITCH A FEW HOURS LATER....... HE IS BACK.

Extubated

With M now. Though he is sleeping, he is not on vent. He is breathing on his own with 3 liters. His potassium is coming down as well as creatinine is trending down too, today 2.3 approximately. Potassium is now like 5.6 I think he said. He is shedding about 75 mls Of fluid an hour, which is good, for swelling. He briefly woke up, and asked what happened but then immediately fell asleep again. I am so happy he is off the vent!

Friday, August 20, 2010

One Month Bronch Gone BAD- My Sweetie IN ICU

Dr Noone told me that Mitch had stopped breathing during the last bit of the bronchoscopy and so they intubated and put him in ICU. Dr Noone said he hoped Mitch would get off the ventilator in the am.
Now, I just got off the phone with ICU nurse, its 11pm,(I am stuck at home with Simon and Matias- no kids in ICU allowed)his potassium levels are skyrocketing to 6.9 now, and they are treating that; he is on 100% vent, and she said they are monitoring him very closely because of the potassium levels- which is harmful to the heart. I asked if she thought he would get off the ventilator in the am, and she said she wasn't sure because he "coded" during his bronch. I suppose I thought coded meant his heart stopped because I asked her about that and she said that it just slowed down a little so they want to monitor him very closely. Plus, with the high potassium levels it makes this even more a concern.
Could anything else go wrong, I ask? Can a human being endure any more prolonged hardship and suffering?
I imagine Mitch lying in that room by himself with all the monitors, IVs, beeps, the blood gas arterial sticking and poking, and it rips my heart out of my chest, wrings it out, stomps on it, tears it into shreds and
I am left with the giant void of dark unequivocal FEAR.

Status: Still in the Slammer; 30 days Post Second Transplant

44 days total. I hope he comes home soon, but it will not be today. We are waiting in his room for them to take him to have a bronchoscopy- the one month bronch already! They may take a biopsy so they stopped his IV heparin. Mitch still has major edema and pulmonary edema. The past week we had a real scare with his kidneys so they had to stop the lasix last weekend. His kidney (creatinine levels) were very high topping at 3.1 . They mentioned dialysis (yikes!) and lowered all necessary meds and took him off everything else, liquid restriction, etc.. All week we have been waiting for the kidneys to recover and they have very slowly been ebbing down, but still in the danger zone now at 2.4 , this am. Also, his electrolytes are imbalanced and they have been trying to cut his potassium level with a disgusting drink and IV insulin cocktail. He received more blood on Tuesday night.
Mitch has been down this week, emotionally. Totally exhausted, periods of semi-conscious wake-dreams, very uncomfortable with the 25-30 extra pounds of fluid he can't get rid of and feeling scared and defeated because he can not take a deep breath because of all this fluid. He is on 2 liters of oxygen and sometimes 3. He won't be able to breathe until the fluid comes off because there is just no space for his lungs to expand.
The doctors said that it is a waiting game, as far as the fluid is concerned. If everything goes ok with the bronch, then maybe he will be able to come home on Monday, on oxygen. I don't think staying in the hospital any longer will be wise from a mental health standpoint. This is long enough, he is starting to dub his iv pole, Rebecca, and other medical instruments after Simon and Matias.

Saturday, August 14, 2010

Still Swelling & now Clots too 8/14/2010

Hi.
Yes, I have been avoiding you.
It's because I want to write and tell you how great Mitch is doing and how he is home, but he is not. So I have to just come clean.
He is still having major swelling issues and also now, blood clots in neck and axillary areas.
The clots were just discovered so they may have been there the whole time, but still, now there is another IV bag hanging from the IV pole and it's name is Heparin, the evil blood thinner... He will have to be on blood thinners for a while and I am not sure how long he needs the IV blood thinner. The IVs are evil because they are preventing Mitch from coming home. I really really miss having him at home, and the boys ask every day when he is coming home. He needs the IV lasix too, to reduce the swelling so that is another culprit keeping him here. He is even using oxygen a little again because of the fluid causing him to be short of breath.
He has been feeling awful about half of the time and managing the other half. I cannot imagine- well yes, I can imagine because I have been witnessing Mitch live through this- But I can not actually experience or know what Mitch must feel like after living in the hospital for the past - almost 6 weeks. I know others have experienced this and some much longer, so in a way he is lucky, some might say- its all relative- but I do not consider this a lucky experience for someone to have.
Every time i walk into the hospital, I become aware that Mitch has been here in my absence, while I have been able to leave and experience life outide these walls; the walls of this insitution we call a hospital. Life with the boys- be outside, see nature, sleep in a real bed, be free, and he has still been here, in his hospital room of flourescent lights, blue chairs, and white walls.
We were conversing yesterday about how time in the hospital is similar to serving time in prison. There are pros and cons to both- in prison you are not sick, but then again, you don't get any drugs- well, without seeking them, that is... In the hospital you have a television in your room, and a more comfortable bed. Hospital room has a window but it can't open and it looks at a concrete wall. In jail, no window, or maybe a small one- some can even see the sky... so that is even, i think. Food is about the same but I can't attest to either. In prison, you get to go outside, exercise, and you feel better, I presume. In prison, you have friends. In the hospital, all your "friends" have to wear a contact gown and sterilize their hands and sometimes wear a mask to see you. In the hospital you can not leave the floor or go outside without a nurse or let's face it- prison guard, coming with you. In both places, you lose a lot of dignity, but you can gain it back.
In the hospital, you are subjected to many methods of torture and witness to your body manifesting in scary and horrific ways; needles, procedures, test after test, etc. In the hospital and prison, you idealize of when you will not be there anymore, but you are unsure of when that will be exactly.
Of course, there are obvious discernible differences, and mentioning them would be a waste of our time, but you see what I mean.
No freedom in illness... Yet, he is lucky to be alive, he is lucky to have gotten a second chance- that much is true. Mitch says the days and weeks blur together. He doesnt talk obsessively about leaving or what he wants to do; he doesn't feel good enough yet.
I hope I can write very soon telling you he is home, or at least that he is thinking about days outside of these walls.

Thursday, August 12, 2010

Quickie-thought I'd be out by now but having serious swelling complications. Very painful, but hopefully turning corner.

Monday, August 9, 2010

'Some rise, some fall, some climb, to get to Terrapin'

The dynamic duo who helped me all weekend make huge progress! My Mom and her dear cousin Gwen

It has been almost three weeks since they took me back for surgery, I guess officially that will be this wednesday the 11th. That could be the day I get out of here! Perhaps even tomorrow, but that is a long shot. Things have really progressed well.

I had my last chest tube, the pigtail one in my back, pulled saturday. This was the one they had to insert last week because they found a pocket of fluid. It feels so amazing to be tube free from all parts of my body. That is a huge accomplishment! My new lungs feel amazing! I don't want to get over-confident but I can definitely feel a difference from the first time. I can take deep full breaths, as much as I can with a broken sternum, broken rib, and a lot of swelling, but it just feels normal. No pains or gaps or noise like the first time. The lungs are clear and the chest x rays have continued to look better and better.

The last few days they switched me from iv lasix to oral lasix. I am on it because I am retaining fluid still and swelling. Well, the swelling has gotten incredibly bad, this is an annoyance but should resolve. I have gained about 30 pounds of water weight. I actually look pretty good at this weight lol, but it hurts. Last night you couldnt find my knee. If I elevate my legs it gets a bit better, but they and me want myself up and about. Not sure why I have the swelling this time and not last. The other secondary issue is just my nerve injuries and although a hinderance I am thankful for these lungs and will concentrate on them.

I wanted to give a special thanks to my Mom and her cousin Gwen Angster. Gwen came to visit and keep my mom company this weekend while Rebecca was back in DC with the boys having their party and getting more things. Gwen was so much fun to have as a visitor. It really kept me company. Plus she spent a lot of time at our place here cooking foods for when I get home. She cooked so many delicious sounding meals and muffins and who knows what else. I am so lucky to have such a great extended network of family and friends. Thanks so much Gwen it was so great to see you and I love you. It meant a lot for you to visit.



more posts to follow,

Mitch

Friday, August 6, 2010

Making progress

Hello everyone. It has been about 16 days since the transplant. Things seem to be steadily improving. I got my last of the original chest tubes pulled yesterday morning. I still have the smaller one in my back that they placed to drain the clot they found. They will probably keep this in for awhile just to make sure any fluid doesn't accumulate there.

I am up and walking much easier and breathing very well. My chest X-rays have greatly improved as well, so despite a still slightly elevated white blood cell count the team is very happy.

My neuropathys I am suffering from continue to be distressing. My right arm remains very weak, swollen, numb fingers etc. But the biggest thing is my bicep is somehow completely deinervated. I have no ability to use that muscle. My left arm also has similar sensations and weakness but all the muscles work. Neurology is following me closely and wants to do a few more tests. They did nerve conduction studies yesterday and it was horrible. It took 5 hours of needles and shocking etc. Good news was they did not detect any chronic nerve issues, however they did confirm the bicep is dead. Dr. Haithcock feels my brachial plexus got compressed during the surgery and in time the bicep will come back. Let's hope. My arm is almost useless at times.

So, the big picture looks good. These lungs feel so much better inside me. It is a weird feeling, but I can just tell, just like from early on the first transplant I had the sense on my left side that things were not right. I have none of this now. Just the pain of the surgery and my sternum being broken and rewired. The plan is for me to continue to improve over the weekend and possibly be discharged early next week! Then rehab will start. It is much needed as I have basically been bed ridden for close to 4 weeks now at least and my body has been through a lot of trauma.

Thanks for following and I hope to have some more positive posts soon.

Mitch

Thursday, August 5, 2010

08/05/2010-10 years post

10 years post the day rebecca and I were married! It was a beautiful day, some of you will remember. Despite the dead summer the weather shifted to a blue sky 84 degree day with no humidity.

Rebecca is a most unique and special person. For those that don't know. I am more then lucky to have been her partner for 10 years officially, but just about 16 total. We are best friends. Having known eachother your basic whole adult life allows you insights and knowledge that some might not ever witness. She is a true gift to this existence. She is so grounded in her emotions and understands human life and it's capacity. Strong when strong, but never holding emotion in and not bottling it up. Instead she empowers herself with it and finds a way to enjoy life and be the most amazing partner, spouse, friend, and the last year a miraculous caretaker who has saved my life.

I love you, happy anniversary

Monday, August 2, 2010

Finally time for a proper update!

Taken today 8/2/10 UNC Hospital Day 12 post Double-Double


Hello everyone!



Well, depending upon how you look at it, this is day 11 0r day 12 post transpant. As Reba, so eloquently writes I was taken for the second transplant early evening on the 21st of July, out of the operating room in the am hours of the 22nd, only to return again for a few hours that afternoon. I have no obvious recollection of any of this, my first recollection is really the breathing tube being pulled mid-day friday the 23rd. That we can agree was 10 days ago. I have had a successful 10 days so far and overall. Yes, there have been a few setbacks, namely the other day, where I started to have an overall weak feeling, my white blood cell count was elevated, and I was just not breathing as well. Dr. Veeramachaneni (one of the other main surgeons) was all over it and ordered a CT scan. It showed a pocket of fluid towards my back ribcage area on the left side. So, off to the Interventional Radiology where they had to put another chest-tube into that area to drain it. This 2 days after getting one tube pulled. So, back to 4 tubes, however this one is in my back and is quite uncomfortable, but luckily a bit smaller. The tube immediately drained like a cup of old blood etc. and continues to do so at a slow pace. Yesterday, sunday, I felt horrible, It was like a rebound day I hope. I could barely get out of bed and had very limited energy and swelling. But I was also still weaning off some meds, no more epidural, no more morphine pump. Last night was much better and today have seemed to have turned a corner with my breathing and it feels as though it is getting stronger. So, they pulled a chest tube today! Back down to 3.



Progress is being made. It is very different this time in a few areas. I have much more swelling in certain parts of my body, my feet, ankles, my stomach and sides, and lower back. Not sure why I have the edema this time, but it is uncomfortable. It fluctuates. However, the pain associated with my chest and the ability to walk and move is much easier this time around.



One complication that is becoming slightly serious is what appears to be another nerve compression injury. This time to my right brachial plexus. But basically, my right arm bicep will not work at all, progressively my forearm is becoming more swollen and painful, and my thumb, index, and middle finger are very numb and painful. This has been getting steadily worse. Neurology is looking into this, but it is always going to take a back seat to the lung options, that is understandable, however the rate it is worsening is alarming, so tomorrow, I will have to address it more. If this was the only issue for someone they would be freaking out.



Not sure what tomorrow might bring, hopefully breathing continues to get better, swelling subsides, and my arm and circulation gets addressed a bit. Thanks so much for people who reached out to Rebecca and helped her through this. She has been the perfect spouse, caretaker, and mother through this. No one has her strength, understanding or compassion. My mom too needs some thanks as well. She has made sure, with Rebecca that I made it through this not alone and that the docs are constantly watching me.



I hope to post more frequently. It is great to be able to breathe again! I feel these lungs are stronger and fit better and should find this out in the next few weeks.



-Mitch

Sunday, August 1, 2010

Quick Update: 10 Days Post- Transplant #2

The past two days have been plentiful in the sense that Mitch has had three procedures.
Yesterday morning, he had an MRI of his brain and spinal column, to look for causes of the neurological symptoms he has been having. No definitive word on that test yet. But hypotheses are that the symptoms are just an injury to the brachial plexus during surgery and symptoms associated with the meds he is taking.

Then, he had a procedure in radiology, based on the results from Friday's CT scan of his abdomen where they went in and took out a clump of old blood and inserted a new chest tube on the left side to lead that area to drain. The CT scan showed that he had pockets of fluid and blood on the left back area, that was preventing the left lung from having room to inspire.
The right lung looks groovy and is doing its thing.

The third procedure was this morning (Sunday) and was another operating room bronchoscopy. They went in and did lavage cleaning suctioning on the left, again hoping to help it open- it looked a little collapsed on the scan and xray.

They say this all normal routine maintenance stuff and not to be worried- so don't worry, people! Mitch is going to be good, hopefully soon.

Mitch's only brother, Terry, came to see him this weekend for a few shorts visits with his wife, Tracy.

Friday, July 30, 2010

8 days Post- Transplant (2)



Sorry for the break! Reba here, I went to the NJ shore for a few days where our sons were staying with my (almost) entire maternal family t0 help celebrate their 7th birthday on Tuesday. We got lots of hugs and love from my aunts, uncles, cousins, brother, and mom.
It was very replenishing for my spirit to see everybody in a place I spent many summers growing up- LBI, and to see Simon and Matias having fun and being loved by my family. But, I was anxious being far from Mitch and not seeing him for a few days. So, I am glad to be back with him now.
Gayle held up the fort at the hospital with Mitch. He did well this week, walking more, got a chest tube out, had a bronch done.
Today, though, he is not so good. He is feeling overall bad- not breathing as well- the cultures they took showed growth of infection growing and some junk in the lungs. His xray looked different and his white blood cell count is up, so they did a CT scan of the thoracic region/abdomen to see if there is anything to pay attention to, learn about, and treat.
He is tired, has bad pain in lower abdomen, more pain in incision/sternum area because epidural is out, and has different pains and abnormalities that do not permit much sleeping/rest.
He had a visit from the neurologists who did a full exam in response to possible nerve damage of brachial plexus during surgery causing numbness and weakness in his right bicep, arm, and hand. They will do a more thorough testing in about a week.
More information when available... Mitch says he will try and blog tomorrow or Sunday.
Thank you for your caring, kind emails, and messages.

Monday, July 26, 2010

0 Out of ICU. Amazing considering what happened. This is Mitch. First thanks for all the comments. Amazing. I'm bruised and battered but made it! Happy 7t
0 h bday to the boys tomorrow. Full update soon. Love, Mitch

Saturday, July 24, 2010

Day 3 Post- Transplant (2)




First Walk: One lap Around CTICU




Mitch said the walk felt easier than his first walk after the first transplant. His legs felt weak though. He had not been able to walk in about 10-11 days, so weakness was expected. The doctors are pleased with everything so far. Mitch got an epidural for the pain.

Friday, July 23, 2010

Day 2 Post-Transplant (2)


Refreshing Day Two (2)


Mitch's exploratory surgery last night went well and they found the "leak", as I said.

He was not bleeding when we went in this am, and was finally more awake. He actually, and thankfully, did not realize he had even had the transplant yet--- he seemed confused and asked for, or I intuited, the "big picture" explanation and when I said, " You know you had the second transplant"- he shook his head no, and seemed relieved.

The whole day was working towards getting off the ventilator- which he finally did at about 3pm, or 230pm. Interestingly, towards the end, a huge psychological dependence on oxygen surfaced- which was definitely understood because of the incredible dependence that developed the last two-three weeks that Mitch lived prior to second transplant. That dependence on oxygen was felt also by myself- I was always seeking another source, more powerful source, to keep him alive that last week- but today; Today, he just needed security- He got a mask and an hour later, the nasal cannula.

He was understandingly feeling very uncomfortable- already surfacing were the pains of double/back to back surgeries-

Gayle (his beloved mother and I) got to be fantastically gleeful in the circumstance of our new familiar position as massage therapist, scratcher, nurse, respiratory therapist, etc. - we high-fived and giggled in the memory and present fortunate circumstance and are ultimately and forever grateful at the opportunity at a second chance... thank you, UNC and Dr Haithcock!!! Beyond thank you...




Thursday, July 22, 2010

7-22-2010- I Day Post- Transplant (2)

Update:

I did not see Mitch until about 330am this morning after his transplant surgery. He was unconscious-
He was being filled with bags and bags of transfused blood, as he had lost a lot of blood during the surgery and continued to lose blood.

He lost a lot of blood because of it being a second transplant surgery and of all the appendages and scar tissue.

The next morning, he was somewhat conscious, yet agitated and frustrated because he was trying to communicate with a giant breathing tube in his mouth.
He had been continuing to lose about 220cc's of blood per hour so they decided to open him up again and look and see if they could locate and seal off the "leak".

So Dr H did exploratory surgery to locate the source, found it, and sealed it up.

Dr H says everything is ok. His vital signs are OK. More tomorrow...