It's Official! 2 months!

Thats right, today is the 2 month mark. November 8th, 2009. I decided to use the 8th as the day even though the surgery was not finished until the 9th. So, just a quick update for now.

I had the bronchoscopy procedure done on Thursday November 5th. It showed that I have narrowing in the airways on both sides. What this basically means is that for whatever reason around where they made the airway connections (anastomes) there is what they call Stenosis or narrowing of the airways. I actually still have a somewhat minor understanding of it, as I have not directly spoken with any doctors since the bronchoscopy. However, I have spoken with Becky, my coordinator and what the team wants to do is another bronchoscopy in the OR, called a rigid bronch. This way they are prepared to correct the problem using a rigid scope that provides for more options and a better look. There are a few different methods they can use and it should be very effective. The methods range from washing/cleaning, using a balloon, or a stent. Sort of like opening up blocked arteries in heart patients. I should get immediate relief from this wheezing and asthma like breathing I have been dealing with lately. The last 4-5 days especially the wheezing and shortness of breath with minor activities has become worse, so I am eager to get this procedure done. It is just a small bump in the road and hopefully they will check everything out and this will be it. It could be a much worse complication.

Overall though, I have to say I am doing quite well. Despite this unfortunate breathing issue, my strength continues to improve. I can still tolerate exercise, just a bit tougher, my body continues to heal very well. I just have some bruising like pain still around my incision, ribs and sternum right where the cuts were made. But this is very manageable and I can tolerate it.

So, hopefully when we do this procedure it will be full steam ahead again. I will post everyone when I find out when the procedure is scheduled for...I'm hoping for ASAP...

-Mitch

Weekly Update..8 weeks-Bronch scheduled for 11/5

Hello all,

That's right, it was 8 weeks on Tuesday the 3rd, on Sunday will be two months! A lot has happened this past week, with Halloween and all. The boys had a great time trick or treating in this neighborhood. We stocked up on plenty of candy to help my weight gain process.

This has actually been a frustrating week, but a fun one with halloween to provide the fun. As I briefly talked about last post, my left lung continues to be a source of concern for me. The sounds continue, but more importantly the constriction and almost asthma like symptoms have been getting worse. I can tolerate my rehab and exercise. This actually helps and provides temporary relief, but throughout the day and night the wheezing, sounds, tightness continue and have increased. It can best be described as mental and physical frustration because of the constant nature. However, my strengthening and overall well-being continue.

On my clinic appointment on Friday, the 30th, the Team got a good listen to these symptoms and they agreed that another Bronchoscopy is warranted. This is were they insert a camera into my airways and check everything out. They look for rejection, biopsy the tissue, and the flexible tubing allows them to even clean out mucous or clean the anastome connections. The major theory is that the anastome connections could be inflammed or granulated or constricting. I am paraphrasing and simplyfying a bit, but basically where they connect the new lung to the old lungs is called the Anastome. This area takes alot of time to heal and you are basically joining a healthy non-cf airway to an old diseased CF airway. The healing process takes time here and sometimes the old airway can make it difficult. There are a few treaments for this depending on what they find. So, they are going to do this today, the 5th. I will keep everyone posted.

I am posting a link below and on the sidebar to our photo album for our trip the other weekend to Blowing Rock, NC. The above pictures are all from our trip. We decided to buy the VW bus and travel across the country celebrating my new lungs!! JK, but the thought did cross our minds!! I will post more soon..

http://picasaweb.google.com/rebabowne/TripToBlowingRockWithNewLungs#



-Mitch

Seven Weeks Out-Regime Info/pics

Well, today is the official seven week mark. I guess at two months, so next week or so, I have to switch to saying I am 2 months out, instead of the weeks.. It is kind of like having a new born, you know those parents that simply have to say how many months their babies are instead of switching to the year because it must make them feel emotional, or like they want to remain a new mom or dad. Example, 'How old is your baby?', "Oh, he is 28 months"..haha..
hope I don't sound like that.

However, I can't believe it is almost 2 months! Well, I still have a week and half left before that, see I am just not ready to believe it yet.

I was a little worn out yesteday, which was monday the 26th. It must have been from going away for the weekend and doing rehab in the morning. It really wiped me out, and it caught up to me a bit. However, I slept good last night from 1-7am (straight), that is an improvement for me. My nightime meds jack me up a bit and it is hard to fall asleep. Today, I really took it easy. Took a nap, did some light walking, but really used it as a day to recover and it feels like it worked. As, I write this I really have just one underlying issue that is preventing me from really feeling like nothing will hold me back. I continue to have a rattling, wheezing, rumbling sounds from my left lung area. This, if you look back through the posts, has been prominent since the first week. I have gotten many answers about what it could be. They range from a small infection right after transplant, ie. some left over congestion and old CF bugs to either a donor mismatch in size, to a minor repurfusion injury. The treatment, since this injury is minor, and they know this because the bronchs, my progress, blood-work, and most importantly X-rays have all been good; is just to have wait and see approach. But it simply is not resolving. Some days are worse then others, and for a few hours it is even gone. But at times throughout the day you can feel these rumblings with your hand and even hear me wheeze. It sounds like I am darth vadar. And it causes me to sound like I am short of breath (even though I am not), and also have an annoying huffing cough. Now, this is nothing compared to pre-transplant. But it is something that now that I am healing I am eager for it to resolve because it is the only thing left that is really holding me back. My new right lung feels like it fits like a glove and breathes freely and beautifully. I am confident my docs will iron it out before I go home...But I need to press this issue, and get it ironed out, literally. When you get a taste of feeling good, you or I just don't want to settle now for anything but perfection, if it is possible.

I thought you all might want to take a peak at what my new medication regime entails. Overwhelming at first, I am slowly getting use to it. The best thing is it is all pills (except for the diabetic shots), but I have been a pill swallower expert since 3 years old! The preparation of sorting all the pills, which I do once a week, takes a bit of time. So below is a few pics of my meds. Hopefully, a few of these will be cut out over time, but I don't mind trading these pills for what I was feeling like before. If this is what it takes to keep these new lungs healthy, so be it...

So, going left to right with the bottles, we have my Tacrolimus-Prograf(anti-rejection/immunosupressent), Cellcept(anti-reject/suppressent), Valcyte (which prevents me from getting virus' and such), Vfend(anti-fungal to get rid of aspergillus), High dose Magnisium (keep minerals and bones healthy), Bactrim antibiotic (this is just a preventitive measure), Prednisone (my favorite-anti-rejection/steriod), High dose Calcium (again for bone health), the box is just Prevacid/Nexium (prevent acid reflux which can damage new airway), and then the little pens on the bottom right are the Insulin pens for shots to manage the diabetes.

Here is just a close-up of my daily pill box. It comes to about 30/day, plus I do have some of my other maintenance CF drugs as well, but that is not too bad. Well, there is a glimpse into my medication regime.

Take it easy everyone!

-Mitch

Hitting the Gym With Kristen and Rich!

Hello All,

I meant to post this last week. The good news is the delay was caused because we have been out of town and I had no decent internet access. Last week, things were going well and they medically cleared me to travel for the weekend. So, Reba and I jumped on the chance and went to the Boone/Blowing Rock area of NC, for a quick getaway with the boys. It felt so good to get away and the boys really needed a treat from putting up with such a huge transition, living in such a strange place, giving up their friends, school, etc. We had a great time, but that is the next post.

Today's post is about my Rehab process. The below picture is of my two Therapists who are in charge of returning me to my world-class athletic condition! Come on, you all don't remember the day? Well, I don't either. Perhaps my expectations are too high. But, I do hope and intend to return or get into incredible shape with these new lungs. I would like to introduce you all to Kristen Bergenty, PT, DPT and Rich Crooke, PTA. They are two therapists at the UNC Chapel Hill hospital who have been and will continue to work with me until I go home. Kristen's focus and expertise has been in pulmonary rehab and she works with all the pre and post transplant patients. Rich has a background in track and field coaching and can add that additional focus on training and body awareness.

I don't think I have to point out who is who.

Without them, I would not be where I am even today. They have the expertise and have seen just about every type of outcome to know just what I need. They have been easing me into a more aggressive routine to make sure I progress, but don't get hurt or have any set backs. So far, so good. I look forward to going there and getting stronger and building my endurance.

In just 6 weeks, I went from this: My first walk

To This: Leg Pressing 300lbs!!! Just kidding, but lifting weights nonetheless!!
(doctors and clinicians please note: when picture not being taken, I do have my mask on!)

We wear the mask and gloves to protect us from catching any infections as we are immunosuppressed and this is a hospital. My strength and endurance is getting better everyday. My muscles and body still take a lot of time to recover, which means soreness and fatigue, but it lets me know I am improving. I have gained over 10 pounds since the transplant and there is no end in sight to that. I have been eating everything! It is actually kind of annoying, as I am always thinking about what to eat next and what time it is. Mostly because I have to monitor my blood sugar and take insulin, so it is not as easy as just eating all the time. I have to show some discipline and make sure I take the insulin. This diabetic conditon should improve as my medication decreases, but it might not. If it doesn't it is not the end of the world. The insulin shots don't hurt, they are just annoying. So, that is the update for now. Very postive, as I continue to move forward.

Talk to you all soon,

-Mitch

Six Weeks Today!-But whose counting?

That's right today is the official six week mark since transplant. Things have been going exceptionally well the last week. I continue to improve my stamina everyday. Today, I started driving again and although I drove some short distances last week (doctors and transplant coordinators ignore the last statement), it felt really good to regain independence. I had a full day today when I got going around 8 and went to breakfast. Then I went to some special off-site building and tried to get a copy of my hospital bill, so I could file some insurance claims. Apparently, it is 170 pages long and they could not print it out from this particular building?? And this was the "special" building, mind you! The person working there also said it was not quite ready yet, to be summarized?? Not sure why, it has been almost a month. Either way, it gave me something to do.

When the boys got home from school, I took Matias to the mall to try and buy him some clothes. He is very particular about clothing and is down to basically one pair of ripped pants as the only thing he will wear. So, it was my turn to try my luck at finding something. He did agree on 3 pairs of pants, lets see if he will wear them.

The point of all this is I did this basically very easily. I was not coughing, not tired, not agitated, and breathing very well. It is amazing how much has changed the last week or so. I go to Rehab again tomorrow and plan on taking some photos and introducing you to my therapists on another post. They are the ones taking charge now and getting me to where I want to be. So, hopefully a more medical and informative post in the next day or so.

-Mitch

3rd scheduled clinic visit- 5 1/2 weeks after transplant!

Wow!! A lot has happened in the last week! So, not sure what exactly it was but right around the 5 week mark, on Tuesday of this past week, I started to turn the proverbial corner... I hope and knock on wood I don't jinx it here. As you all who have been reading know that my body had been aching, tremendously..My back, my muscles, especially my lower body, I was fatigued and not sleeping great, the medications were wreaking havoc on my mood, my breathing (although much better) was frustrating and at times painful. I was always trending upward, but just not 100% confident yet physically and mentally that I was going to be OK. Hard to explain.

Well, on Tuesday afternoon my body just started to feel better. My legs stopped aching. They still are sore and weak, but it is more like I just did a monster leg press workout and they are recuperating. It is not like they don't want to move and can't support me. My back stopped hurting all the time. I still have the nerve stretch injury, but I can see some progress. My mood improved and most importantly I could tolerate things and concentrate better. This has allowed me to spend more quality time with the boys and start to really interact with them again, which I have missed so much. I'm sure Reba appreciates these changes. One of the biggest things is I started to sleep much better! I can relax at night (without medication!). So, the question is why did all of this happen at once?? What changes were made??

Answer- Well, not quite sure, they cut my prednisone a bit a few days before, I have been eating good, I also started to really crack down on my diabetes management (the meds cause me to require insulin and watch my sugar), I started to really focus on this. I have been exercising regularly, I did cut out all pain medication(even though I was taking very little only at night), but there is no concrete answer. Perhaps my body is just adjusting.

Now to remain focused, I still have a long way to go. I have a lot of bruising and sternum pain still along the middle of my chest. But this is bearable. My breathing at times still has a slight wheeze, tightness, and small congestion to it, but this has improved. In fact, it really makes me so excited to see what it will be like once this is gone. So, this brings me to clinic and rehab today..

Again, the doctors say I look great. No signs of any rejection, or infection in the new lungs. Chest x-ray looked great. Dr. Haithcock, my surgeon, checked me over and said it must have been my haircut that caused all these changes! I don't know if he learned that in med-school or not, but I accepted it. One concrete change though was my red blood cell workup was much much better then last week. Hemoglobin, hematocrit levels etc. They were very low last week and were going to give me a boost this week if still low, but they were much higher. So, the docs lowered my prednisone dose again (yeah), and cleared me to drive next week and start some light lifting with my upper body next week. After clinic, it was off to Rehab. Today I walked on a treadmill at a steady pace (2.6-2.8) for 35 minutes straight no breaks! Even threw in some incline in the middle. No problem. I did leg presses with more weight, I did some much more difficult hamstring and core stretching exercises. It was a great session.

I know there might be setbacks, but what I am doing is amazing me! I hope it continues. The photos below were taken tonight when we were walking to dinner and just goofing off. Everyone should take some time to just goof off..... take care and I'll update you all again soon.

-Mitch

Two posts in one day-Must be a good one

Well today I had my second official clinic visit. Lab work, xray, breathing tests, doctors, followed by a rehab session after all that.

It was a successful day. Everything continues to look great. The doctors are all very pleased. The discomfort and secondary issues should continue to improve. Medically, which is the most important, all looks great. They were able to cut down my prednisone dose just a bit, but hopefully it will make a difference.

Rehab went well. Did more cardio then last time and started some strength training on the legs. It was a long day but a good one.

Finally, not for the faint of heart. I am posting a link below to our public Picassa google albums. The photo above is about an hour before they wheeled me back. I posted my complete transplant photos! That's right, Dr. Haithcock my surgeon, let me bring in a disposable camera and he did not hold back when telling whoever the photographer was to snap away. I am giving everyone fair warning to not look, but I want this blog to be educational as well. That is why the photos are on a link below. It is a chronological progression of before, during, and after the procedure. Click the album that says Mitch's Transplant (Warning-Graphic) And enjoy! HAHA

Transplant photos link: http://picasaweb.google.com/rebabowne?feat=email

everyone,
Mitch

Special Thanks

I wanted to write a short blog post to a very few special people that have helped me and the family out tremendously the last month. It goes with out saying that everyone has been so encouraging, optimistic, supportive, and motivating. I sincerely thank everyone. There are just a few people who I really want to recognize personally, if I have not already.

1) Rebecca- Not to many words can describe what she is doing and accomplishing. I am being nursed back to health in a very healthy, determined and motivating manner. She is the one bearing the brunt of my mood swings, complaining, and generalized unpredictable nature. I love her so much.

2) My parents Bill and Gayle- They have and would drop whatever to do whatever we need. Enough said. Without them this would be much more difficult.

3) Rebecca's Mom Lois- She was here the first day. She was genuinely concerned about me and spent time with me alone in the hospital, especially the second week when she did not have to, making sure I was ok.

4) Rebecca's Aunt Lynn- She also came for a visit the second week when I was out of ICU. I was still very uncomfortable and when Rebec, my Mom, or Lois was needed a break from just coming and checking on me she willingly volunteered and helped nurse me back to health for a few days. It was nice to have someone close, but not as related to talk to and get motivational talks from. She did not have to do this but willingly did. thanks.
'
5) Rebecca's best friend Lyzka- She not only started to drive down during the first "dry-run", but when the second call came, she immediately dropped everything and drove down again to be with Rebecca and my parents in the Surgery waiting room. True Friendship. I know Rebecca appreciatted it so much, and so do I.

6) Rebecca's Dad Larry- He has been continuously checking on me and wishing Rebecca and me well. I thank him so much for his support and his generosity. It is helping so much.

7) My brother Terry- He has the tough job of keeping our business running and is doing awesome. I know how stressful and sometimes frustrating it can be, but for me to not worry about work is probably the biggest gift someone can give. Soon, I will be back and we will not look back. Thanks. I love you.

Finally, all the notes, comments, cards, etc. from everyone. A new perspective on life and compassion I have gained.

-Mitch

1 Month Out Today!

Today marks the one month date after the transplant. I know the blog has gotten a bit slow and mundane as of late.

However, today is a nice accomplishment. I wish I had posts for you all everyday telling you about how incredible I am doing and how I am running, jumping, driving, and just plain skipping along. But the truth is it is a slow moving process from here on out. Alot of people have been mis-informed with my posts when I say I am home! Well, we are home, but it is our second home here in North Carolina. We need to stay here for at least 3 months, and that is if everything goes perfectly.

I continue to improve at a steady level, but those landmarks are just not daily like they were. However, this past week, I continue to do more and more. I go to rehab 3 times a week, and have been able to ride a stationary bike and pseudo stairmaster for up to 20 minutes with resistance and 1-3 short breaks in between. I could not do this before transplant. The weird thing is my muscles are what really keeps me from getting stronger. My legs are so deconditioned as is my upper exteremities (which I can not do any resistive exercise with for another couple weeks, because they broke my sternum). So, there I just stretch. All of these meds prevent muscles from re-building properly so they stay sore and ache consistently.

But I realize I have made huge progress!! I did my rehab the other day and had alot of energy! I took the Chapel Hill free bus service (amazing) from the hospital back to where we live. There Reba is assistant coach of the boys soccer team and practice was still going on, so I walked to the fields and watched the end of practice. It was nice for the other parents to see me moving around and the boys were happy.

So, things are going well. I continue to adjust to the meds. A few more were stopped, a few started, but their was a net loss of meds. In about 2 more weeks they may start to reduce some of the dosages, that would be nice.

Reba and the boys are enjoying it here. We can walk to so much, there is alot to do, and most of it is free. It is such a nice college town. Thanks for all the well-wishes and if anything interesting occurs, I will put it down...


-Mitch

Just What The Doctor Ordered

It just so happened that Ian Ferguson, my longtime CF friend who is 13 years post transplant, had his annual appointment today. So, he came in last night and we went out to dinner. That was just what the Dr. Ordered. I needed to hear from someone how tough it really is the first few months, and really needed that motivational push and encouragement from someone who has been through this.


Ian and I comparing transplant incision scars.

Hello all,

This is Mitch here 3 1/2 weeks after successful lung transplant surgery. I just returned home about an hour ago from my first official clinic visit. Here they drew blood work, did another chest xray, I saw my surgeon Dr. Haithcock, and the Transplant team. It took the whole morning.

The great news is everything with the new lungs appear to be perfect. They are happy with how the chest xray looks, the results of the biopsy from the other day were completely negative for any acute rejection. This is a great sign that my body is slowly starting to accept the transplanted organ, as it is very common for the majority of people to experience some form of acute rejection within the first 3 months, but especially during the first month. They said my lungs looked clearer and the infection and congestion left over from surgery was resolving. So, they took me off of 2 iv antibiotics, and substituted an oral antibiotic instead. I have just 4 more days of some iv meds left and then on tuesday can get that final IV line pulled out of my arm. That will be a relief to not have any foreign tubes or lines in me!

Dr. Haithcock, the surgeon, came in and was very optimistic with me. He assured me all my aches and pains were justified and part of the healing process. Everyone has different complications or experiences and mine are not out of the ordinary. I have what they call a thoracic nerve stretch injury to my right side and arm. This makes my arm weak, ache, tingle, and the major problem is it causes my scapula to be unstable and wing out when I move. However, as much as it bothers me it is something that they say will get better with alot of time and exercise. He explained all my other ailments as part of my healing process which will take months. He removed all of my stitches from the chest tubes as well.

So, Although I am not feeling that great yet, I am very optimistic that everything is going as well as it possibly could. The medications wreak havoc on my mood and mental status throughout the day, sleep is virtually impossible, I still have some wheezing and fluid in my new lungs (but it is getting better), and of course alot of pain from where they broke my sternum. But I get stronger everyday and just need to push on through.

I look forward to progressing further and although each day is a challenge I look forward to it because I hope I will continue to improve.

-Mitch

3 Weeks Post- Transplant

Three weeks have passed already!
Mitch had a second bronchoscopy this afternoon. Dr. Yankaskis performed the procedure. "Yank" has been closely involved in all of Mitch's progress and we are thrilled to have him on our team. He is a renowned, highly respected, pulmonologist: clinician, UNC professor, researcher, consults for NIH, pharmaceutical boards, gazillion lengthy and medically-enlightening publications, and on and on..Not to mention the fact that he likes to tell his patients meaningless trivia to distract them before a procedure, and well, whenever. Mitch was all groggy after the bronch but was full of these trivial facts Yank had told him, like, the history behind the word 'shindig' and random stuff like that- Other than spouting off random facts, Yank did gather a biopsy (tissue sample) and did a little cleaning while he was in there. They will test the biopsy for any signs of rejection that are not showing up clinically.

I only wish Mitch was experiencing the optimistic and positive reports his labs and x-rays are showing as well as the nods and "it doesn't get better than this" comments from the pulmonologists.
He is still not feeling any better, physically than before the transplant, he reports. This is because of all the pain, and numerous uncomfortable list-of-items which are torturing him at every moment as well as the inability to sleep. The massive amounts of prednisone and anti-rejection (immune-suppressant) meds make him shake and sometimes irritable- (sometimes downright nuts!- and there is this phenomenon called steroid-induced psychosis) - no really, he has been fine, nothing I can not handle...;)

On the home-front, Matias has a stomach bug-(scream!) the sanitizing measures in our home went up about 100 notches today, I am lysol-ing everything and washing every body's hands about 15,000 times a day. If I get this stomach bug, we are all doomed. I don't even want to think about Mitch getting it.
Should I quarantine?- i recently read Albert Camus's The plague- it feels eerily similar...

What does one do when they are not a nurse, a janitor, a housekeeper , a cook- well make that food preparer, masseuse, a dog walker, a mother, a chauffeur, a respiratory therapist , a personal trainer, a coach, and a mental health practitioner? Well, they read novels and stream foreign films- preferably french- from Netflix onto their laptops; at least that is the escape I have been employing to get me through the very stressful and ultra-serious goings-on in the life in Chapel Hill.

Oh, and we had a food fairy come and visit us on Tuesday... someone donated her services- she will be cooking us 2-3 meals a week- yeah!! Thank you food fairy and whomever sent you our way via the Sweet Melissa fund.

The pics above are from our drop-in clinic visit yesterday, on account of Mitch not feeling well, and the docs and patient care coordinator-Ken (in the pic next to Mitch), reassuring him he is doing great!

I'm Home!!

Hello all,

I was discharged from the hospital today, 17 days after my transplant. That is a very good sign and on the slightly below average amount of time that most people take. I still have quite a long way to go, but things seem to be progressing as well as they could. I am proud to say I walked out of the hospital on my own power all the way from my room to the parking lot. Quite an accomplishment given that up until a few days ago I was really only walking about 1000ft. a few times a day. My lungs are probably the strongest part of my body right now, oh the irony!!

I have had what the doctors would consider only very minor setbacks and obstacles to overcome. My new lungs seem to continue to be a bit congested. No one is quite sure why, but it is common for some. The surgery builds up fluid, old congestion from my upper airway could trickle down and I just am not strong enough yet to cough it out. This should all improve over time with some antibiotics. My only other 2 major issues are 1) I seem to have an area in my lower left side of my chest that rattles and makes weird noises when I breath in. The chest xray looks great though, so the docs are split as to what it is. CF and Pulmonary docs think it is fluid or congestion, surgeons think it could be more from a slight mismatch in size of the new lungs and the lung has not fully adhered to my chest wall yet. They all think this will resolve no matter what it is, and no one is concerned to order any invasive testing, so green light ahead. I side with the surgeons because it just feels like a hollow space.

And finally the 2) issue is just a lot of pain and discomfort from the incision and the breaking of my sternum. This makes things difficult.

I have a complete new regimen of medications to learn and it is very overwhelming right now for me, Rebec, and my Mom. But without having them here this would be impossible. They have been amazing. Complete saviors and taking care of everything. My mind is still not the clearest and I fatigue real quickly, so this is the start of a whole new journey. That is why it takes 3 months, I realize now. My mom picked up literally 20 prescriptions today at CVS!! These will slowly taper down over the course of the next few weeks, but for now this is what I need.

Thanks again to everyone, it is great hearing and reading the comments. I have not really been able to talk on my phone or email that much yet, it is slowly coming back to me, but it is just not a priority yet for me and all of these meds really throw me for a loop. I do read all the comments and feel free to send texts, which I will read. Maybe this will slowly "wake" me back up.

I will start posting more though now as I have gotten alot of emails from even strangers and others waiting tx who want to follow.

Hope to see everyone soon..

-Mitch

2 Weeks Post- Transplant

Mitch made it two weeks! He has all 4 chest tubes out, and is taking 4 good walks per day. He has a bit of infection in his new lungs from his old connections and old bugs seeping into the new lungs. So, his routine is very familiar to him now- its like a regular old CF tune-up: chest PT, IV antibiotics and nebulizers 4 times/day. We hope this is the last time he needs a tune-up. He will go home on IV antibiotics. But hopefully, he will be off of them soon enough.

There is definitely discussion of going home. Its been brought up many times. Mitch has to be comfortable with going home, and ready. We start the education tomorrow. A lot to learn about caring for himself and his new life with new lungs. There are certain foods he may no longer enjoy- sushi- (sorry Julie and Roy no more Raku, NOT! we can still go- he will just have to eat the cooked stuff!) , raw fruits and vegi's (mostly because of bacteria and the immunosuppressants). Also, he cannot do any gardening!
Darn! He will be reaallly dissapointed about this.

12 Days Post- Transplant

Mitch doing well. Good weekend, good spirits. He watched some football. The Tarheels played East Carolina and the whole town was painted baby blue. Of course, it was nothing compared to Gainesville madness.

He had his third chest tube removed on Saturday. One more to go! Today they will take his pain pump. He is having different pain now. More spasms in his chest and upper back as his sternum starts to heal.

Simon and Matias visited their daddy in the hospital on Saturday evening. It was a relief for them to finally see that he was ok, just healing. Mitch nicknames all the IV poles and monitors his "robots" so that makes it seem like fun.

The "troops", my mom, Lois and my aunt Lynn, went home this am. Thank you for all your help~ You made the roughest time survive-able for Simon, Matias, Luke, Mitch, and I!

Update: 10 days Post- Transplant

L'SHANA TOVA!!! HAPPY NEW YEAR! What an amazing beginning!!!

Fall is approaching, which is the corresponding season for the LUNGS according to Chinese Medicine- coincidence or fate??

Mitch is doing great.

He had a chest tube pulled yesterday and another pulled this morning.
2 out, 2 to go!
The surgeon said they will pull another tomorrow, and the last on Sunday, maybe.

Mitch is walking really fast and strong.

He is completely off the oxygen canula.
This is amazing...Mitch's oxygen saturation is 100% on his own!!! He said it doesn't even feel like he is breathing deep or trying to breathe and its 100%. Yea, pretty soon he will be taking breathing for granted like the rest of us without CF. No, I don't think that will ever happen, he just won't have to struggle to breathe.

He is talking about being the co-assistant soccer coach for Simon and Matias's soccer team with me, joining gyms, biking, hiking, playing basketball, ecetera.

Thank you for your support, updates will keep coming.

Happy Weekend!

I'm Back- Post from MITCH

Day eight is coming to an end and in a few hours it will be exactly the end of my eighth day post- transplant. Yes, this is ME, Mitch, I am writing my first post. What a tremendously harrowing, but remarkable experience it has been so far. I will try to recap a bit of the first week as best I can, but bear with me and my thoughts, as not much is still clear and I am still in a some very real pain.

I don't remember the first few days well. I do remember bits and pieces though, and I definitely remember waking up around 6am that first morning, in complete panic with the breathing tube in, another tube shoved down my throat (i guess into my stomach), and just complete pain and misery. Sometime around 10am or so, they did pull my breathing tube and that other tube and replaced them with a ng stomach tube. Still horrible, but better.

I guess less then 12 hours for the breathing tube is a great sign. I do remember though when they pulled the breathing tube, my body took this huge deep breath with its NEW Lungs! It was both incredible and overwhelming at the same time. For a split second I thought it was going to be complete piece of cake sailing from here on out, but almost instantaneously my body felt like it awakened as well, and I suddenly felt the weight of the surgery, the discomfort of a tube in every hole, 4 iv lines, and 4 huge chest tubes ripping through my body. The battle had just started.....

And here is how it has progressed the last week. About as good as everyone can expect. Sure there are some setbacks, but mostly steps forward. Pain slowly gets more manageable, I have bad hours now, instead of total bad days, I can walk better, with less help. I still have 4 huge chest tubes in which they want to leave a few more days to be on the safe side, so it is not expected that I will be able to get deep breaths or feel better until they are out. I have to trust their opinion, I don't want to rush something so fragile. However, 4 weeks ago I had one tiny chest tube and this one is 4 times the size and 4 as many. So, I can not believe I can move with them in there. I hope to continue the next few days getting my strength back and getting my body feeling somewhat normal.

Thank you to all my friends and family, keep the messages coming it helps with motivation, even if you don't hear directly from me. It is such an ordeal to try and get situated to write a message.

Finally, a message to my donor. Someone who gave the ultimate most selfless gift. Not only them but their family as well. Thank You, I say those words, Thank You with my breath every night..

-Mitch
09/16/09

Back from Bronch Procedure: 8 Days Post Transplant

Ok, well, Mitch is back here, in the room. They actually did not do a biopsy as planned. They spent the time clearing out all the airway secretions which had a lot of mucus. They will culture those samples and get the results anywhere from 24-72 hours. This will give information on what type of infection is present in the new lungs so they know which antibiotics or meds he needs. The reason he has secretions is because they connected his new lungs to the old connections of his upper airways which had the old CF bugs present which have traveled down to the new lungs. The difference is, his new lungs do NOT have CF and with antibiotics, the secretions will go away and not come back. Sometimes, the mucus can also travel from the sinuses too. Like I said though, that is treatable/curable with antibiotics.

They cannot do a biopsy while they clear out secretions because the infection could then get into the blood stream, which would not be good. So they will do another bronchoscopy to get the biopsy before Mitch leaves the hospital.

Becky, Mitch's patient care coordinator, was just in here and she said that from a clinical perspective, Mitch does NOT have any indicators of rejection; based on his oxygen saturation, his vitals, and his xrays. The only way to tell for sure is by the biopsy. There may be some indicators in the cultures of clear fluid they took from the bronchoscopy. If it contains a lot of lymphocytes this is an indicator of rejection. So..we shall see...
Becky said Mitch MIGHT, might- go home next weekend: as in the end of the month. Which seems, well, really soon and hard to imagine at this point for both of us. They start the education part of the process next week!

Mitch getting Bronch Now: 8 Days Post- Transplant

Hi! The docs took Mitch to have the bronchoscopy procedure(pic)

Mitch is doing great this morning!
He moves so much easier as far as getting in and out of bed and to and from the bathroom or chair. He still needs assistance, but less assistance. This is really challenging and I hope my posts are not making it seem like a breeze. He is in a tremendous amount of pain and every day has been a huge struggle but it gets a tiny bit easier every day or two. He pushes himself hard on the walks and walks farther than he thinks he is able to.
He is only using his oxygen today when he feels like he needs it.. so I haven't seen him wearing it today which is a good sign as far as his confidence in his breathing. They took him to the bronchoscopy this am at 9:15am. They will go into his lungs and use a high volume wash of saline to clear out any cells or congestion in there and also take samples and biopsies to check for rejection and/or infection.

Day 7 Post- Transplant

Today's Highs: Mitch walked 1200 meters today! Lungs felt stronger and Mitch is now down to 1 liter of O2 (they are weaning him off). He also kept it off a lot today and his O2 saturation stayed consistently above 92, for the most part. He is eating solids!

Emotionally, Mitch was more alert and in a better mood today. He was more himself today.

Lows: Still in a lot of pain from the chest tubes. The left lung is still having trouble affixing itself to the pleural wall , but this is normal and just takes time, the docs said, so they have him on suction still- the four chest tubes, draining fluids.

Upcoming:
Mitch will have his bronchoscopy tomorrow am which will determine if his body is accepting or rejecting the new lungs. 50% of the time, for transplants, the one week bronch shows rejection, so they said they almost expect it. If his body is rejecting the new lungs, they do 3 days of massive amounts of steroids to convince the body to change its mind. They said this works.
Despite this warning, I am hoping for good news... we wont have the results until either tomorrow night or Thursday am, so I will post a quick update when it comes in.

Behind the Scenes: Aunt Lynn and Grammy are helping me out a lot!!! Gayle went back to MD this am for a little break and to ring in the new year later this week. And, Simon and Matias miss their daddy and are so upset they haven't seen him yet but they have a bit of a runny nose so I am scared to bring them in, just in case.

Better Day than Yesterday:6 Days Post-Transplant

Daily Highs:

Mitch moved OUT of ICU into the step-down unit to recuperate!!!!

He also had his bladder catheter out and is now sporting boxer briefs, therefore feeling more human!!!

Lungs functioning well...O2 Saturation higher and heart rate and blood pressure lower today. Body adjusting!!!!

2 good walks!

Much better day, respectively.

Daily Lows:

Still uncomfortable with the chest tubes, yet headache better. Eating clears, digestion working.

Upcoming Plans: Docs doing a lung bronchoscopy, probably Wednesday. (going into new lungs and taking culture and samples to check out the body's response to new lungs, check for rejection, etc.)
Maybe getting 1-2 out of 4 of the chest tubes out soon?

Don't Want to Relive Day 5 Post- Transplant

Yummy Lemonade!





Let's be honest. Today sucked for Mitch!!!

It started out good. He had his Nose (stomach) tube pulled so he could drink lemonade (see pic above.)

But then, a few hours later; Mitch developed this monster migraine. He was miserable with all the tubes and the headache and the pain. The nurses, Carla and Mark, did not know how to help him...(third photo)

He is still in the ICU and everything is still going good with his new lungs but it was just a horrible terrible no good day as far as being in intense pain all day. The docs are still reporting good status though, so that's good.

Mitch did, however, still manage to take 2 good walks and sit up for a lot of the day.
We hope tomorrow is a better day!

Behind the Scenes: I also wanted to thank my mom, Lois, for helping out tremendously by taking such great care of Simon and Matias, and our dog, Luke. She has been amazing! She had a double hip replacement at the end of June so it takes a lot of effort and stamina. We are calling in the second string tomorrow- my Aunt Lynn arrives to help out for the week. It takes a village!

4 Days Post- Transplant: A GOOD DAY

Mitch's brother, Terry, visited Mitch from MD and spent the day with him. Mitch said he really liked that.

Here is Mitch walking today without assistance . He walked 2 sets of 3 laps. As you can see in the photo here, he is pushing the cart himself and only has one nurse (our favorite-Nick) in tow pushing his IV pole.

Another big accomplishment today.....
Mitch passed gas! Which was a big deal as you remember because now he can probably have the nose tube pulled in the am and drink water tomorrow! (not sure about lemonade)

Mitch is also ready to see his twin sons, Simon and Matias, tomorrow for the first time since he was wheeled back into the Operating Room. The slideshow pics to the right with the boys are from before the transplant.

Meet Dr. Haithcock

Meet Dr. Benjamin Haithcock (my private pet-name for him is GOD), the Humble and Brilliant surgeon who held Mitch's heart in his hands, found him a new set of lungs, and created new life in him. He is also persistant and demanding of Mitch these past few days, making sure Mitch is doing what he needs to do to utilize the incredible gift he bestowed.

Thank you, Dr. Haithcock. You are the awesomest of the awesomest!

58 hours Post-Transplant Update

Mitch continues to to stay ahead of the curve with his healing. Yesterday afternoon he walked a full lap out of the Cardiothoracic ICU doors down the hall a bit and back in with the help of 3 nurses to help carry his luggage, consisting of IV pole, and cart to hold drainage boxes and tubing.

This am, he did 2 laps with 2 nurses!!! He stood up taller and walked faster then before.

He is reporting more specific points of pain, such as the site of the incision, and the chest tubes, the catheter. The epidural is helping more with the pain of the sternum so he is taking fuller deeper breaths.

Mitch said last night that while he was walking yesterday afternoon, he became emotional, because it really hit him that he had gotten the transplant- that part was over, and now he had a long road of rehab which he is both determined and inspired to complete with great gusto. Of course, he did not use the word 'gusto', exactly, but you get the point.

Every early am, they take an xray, and it has looked good everyday. The new right lung has affixed itself to the pleural wall and next the left one will, hopefully soon.

He is still dying to drink and talks a lot about drinking ice water, lemonade, and cokes as soon as he can. They say, the more he walks, the sooner his bowels will start working and then the sooner he can drink.

36 Hours Post- Transplant

They redid the epidural and it seems to be more effective at dealing with the pain.
Mitch's surgeon, Dr. Haithcock (praise be!), is encouraging him to use his pain button more often so that he can breathe deeply, helping to employ the new lungs and reduce fluid build-up.

The pulmonologists and transplant team report great progress thus far. They think he may move to a step-down room either tomorrow or Saturday.


Mitch is very, very thirsty. He thinks about pain and his sense of thirst constantly as he will not be able to have a drink until they take out his nasal tube which is sucking all the contents of his stomach. This can only be removed when Mitch passes gas, as indication of his bowels waking up.

He is practicing breathing and working very hard to conquer his pain. He went for another walk at noon today and then sat in a chair again. He walked farther and with less assistance today. The nurses on the floor were very proud and some even commented to me how well he was doing.

The staff, nurses, docs, are very professional, caring, and top-notch.

We know this is the beginning of rehab but we just think its a miracle. We love reading the positive comments and the emails. You are all, literally, by reading this blog and witnessing this miracle, standing behind and cheering on Mitch- giving him momentum and strength to tackle this feat. Your compassion and kindness are a gift. So, thank you, from all of us.

Sitting Up? Too Easy! They Have him Walking already!

11 hours after transplant surgery







15 hours Post Transplant: First Walk

3:10pm This just in..he walked to the nurses station AND BACK and is now sitting in a chair! Superman!

Mitch Doing Great! 12 hours post- transplant

Mitch's xray looked good so Mitch had the breathing tube removed (much to his pleasure) at 1030am, which according to the docs was very soon. He is in a lot of pain because they did have to break his sternum and put him on the heart/lung bypass machine for 2 hours during his surgery.
He is doing well though, the surgeon and docs agree.
They want to get him up in a chair later.
It is amazing to see him take deep full breaths on his own!!! Remarkable.

9/9/09 Am after surgery, Mitch doing well

Everything is going well. Mitch had a good night. When we saw him last night, he was just coming off the anesthesia yet pretty awake and aware, trying to communicate with us, which good news. Of course, with a ginormous breathing tube in his mouth (which is very painful to his throat and very uncomfortable) this is impossible except for hand squeezes and nodding/shaking head movements.

Since we saw him he is off the blood pressure medication which was just being administered to regulate his blood pressure after the surgery.

Plans for this morning include a chest x-ray, to make sure everything looks OK in there and to try and wean him off the ventilator hopefully and pull the giant breathing tube later today or tonight which will make him much happier.

Dr Haithcock Just Came in!

Dr Benjamin Haithcock just came in. He told us that Mitch was doing very well and got a gorgeous set of healthy new lungs! He is in recovery and we can see him in about an hour in the ICU.

ICU Waiting Room

We are waiting in the ICU waiting room. Lyzka, Billy, Gayle and I sit and wait for news. They ended up taking Mitch back for prep at around 4pm. Lyzka and I think we spotted the surgical team bringing in the organs in a cooler at around 7pm. We expect to hear more news at around 1-2am. "So far, so good", we were told from the OR at 9pm when we had them call down. We are feeling really positive. Thank you for all the love and support in so many forms you have been reaching out to us. It is both strengthening and healing.

Update. It was a go. Mitch is in the Operating Room. He went in at 4pm and the surgery should last between 8 and 10 hours. Expect updates periodically.

Round 2: This is IT!! We hope!!

Well, we just got the call again.. Becky said this one looks real good, like the last but perhaps even better because they already did alot of the blood work. I am very excited this time and nervous. But this is why we are here. I am ready!! Surgery is suppose to start around 3-4pm today 09/08/09..

Thank you to everyone for following and supporting me, Reba, and the boys during this adventure and challenge!! Here we go again...

-Mitch

Greetings From Chapel Hill

Wow, what a first week. We survived. We had the "dry-run", we lived in a hotel for a week, we started the first day of Kindergarten, and we moved into our more permanent townhouse all within the first week and a half.

I will post some photos of our place and the little community we are living in soon. But it is called The Southern Village and it is in S. Chapel Hill. It is a quaint little planned urban community. So, it is very convenient. In fact the boys school is just a short 5 minute walk out our back door down a little trail. So living here, when the real call does come, should be much easier for the family.

Special thanks to my parents, Bill and Gayle, who schlept Rebecca's car down here which was loaded with all of our bikes, miscellaneous furnishings, and of course our dog, Luke! I'm glad to have her, it really feels like we are all together as a family.

The boys seem to be enjoying school and adjusting to the schedule. Down here school starts early 7:40am, this way the youngins can be in the tobacco fields by 2:30. Just kidding, not much tobacco left in NC. I am posting a few snapshots of their first day. It was a bit scary being greeted by an alien looking Frog in tights at the front door, but they survived. On the right hand side-bar is a link to a short photo gallery.

So, now the wait continues. Reba and I have some plans on how to spend the time, but with the boys out of school at 2:30, the days are really fairly short. It gives us alot of time to spend together and grow as a family and that is what we are taking advantage of. I do start a pulmonary rehab program next week, before the transplant. This is just a good way to keep me in the best possible shape before the big event.

Thanks to everyone for following along and I will have another update shortly.

-Mitch

Reflections on Today : LIVESTRONG

Today, though indescribable, could, as Ian commented on the last post (who has been through this and Is our inspiration) be best described as a roller coaster; a roller coaster which climbs powerfully and methodically to the top of its peak, postured in its supreme elation, with hair-on-end fear, and a view of auspicious hopes, and then comes to a screeching halt without plummeting over the precipice into sublime adrenaline gluttony. It buries its hopes and visions, of easier breath, breathing with ease, and consequently good health, and goes back to wait for the next chance. A next chance, which will hopefully carry it to meet and conquer its hopes, dreams, and future which were deemed impossible.

Not surprisingly, in a lot of ways the lung transplant feels like that, a rebirth or second chance. There is a feeling of gratitude, of awe, of hope for something better. What a gift is being offered from the family/life of the donor! When the call came today, surprisingly to us, Mitch and I thought so much about the donor, and felt so sad for his life, for his family, for his/their loss. And, in turn, were so grateful, so awestruck, so incredibly optimistic about Mitch's possibility to keep on living. It is a strange philosophical and existential quagmire.

It was just an ordinary turned extraordinary day. Mitch and I were frazzled, stressed! We were shopping with Simon and Matias for a few long hours. Arguing with them, arguing with each other about silly things- which shoes they should get for school, which shirts, etc. We had spent 2 sleepless nights in a hotel room with the kids, after relocating to Chapel Hill on Sunday. We are not moving into the condo we are staying at while we are here until Monday and the boys start kindergarten tomorrow. We were having one of those bouts of hopelessness and anxious hours and then the call came, and everything changed into crystal-clear clarity.

Our perspectives altered immediately.

Our faithful loved ones who had been waiting for these moments, responded. Lyzka, Lois, Billy, and Gayle began to make their ways here as fastly and as furiously as they possibly could. We felt a ripple of love and support from texting and phoning that immediately began. It was an exciting few hours.

And..I/We cannot wait to feel that way, again, Very Soon.

False Alarm!!!

FALSE ALARM... This sucks but the team just came in and the last bit of blood work on the donor was no good. Apparently the donor had a blood infection. Everything happens for a reason, but no lungs for me today. I am in the hospital room all ready to go. But now, I will go back to waiting in Chapel Hill....

THE CALL CAME!!!

Timing is everything... We moved down here Sunday and the call just Came! I AM Getting new Lungs Tonight! Reba or me will post more soon. We don't know much.

At Least I got a grilled cheese and a veggie burritto...

Well, we made it to the show. I have been so looking forward to this show as sort of a last hoorah before the transplant, that I was counting down the days. The collapsed lung put it in jeopardy, but things worked out and we made it. We had incredible seats and it was great to relive alot of the memories Rebecca and I have from so many shows over the years. The only problem was, the song choices for the evening was a surprising disappointment. It was one of the most bizarre setlists ever, and none of the really emotional meaningful songs that I was longing to hear were played. The playing was done well and we danced and enjoyed ourselves, but any pre-transplant motivational epic shows was just not meant to be.

Well, perhaps a lesson was learned. A good dose of reality. Things are not always what you hope for or expect. Perhaps if I take away anything it was that I now have to get to more shows because that can certainly not be my last one and I will go on record now and say it will definitely not be my last...Bring On The Tranpsplant!! Lets get it over with so Rebecca and I can groove again at another show!

Mitch Home

Mitch is home and resting in his bed. The pain is much better now that the tube is gone. We plan to go to the show tomorrow; the Phish show, of course. Thanks to all the well wishes and positive energy from all of you we made it through this bump in the road.
We hope the phone rings soon so Mitch can beat me in that future mini-triathlon he is bragging about.

Here is an update from the hospital. I am doing ok. They got my lung reinflated but the chest tube has to stay in. Hopefully they can pull it tomorrow am. It is excruciatingly painful, and that is with morphine! Not looking forward to the transplant when I will have four of these. Speaking of which, UNC called me today. It seems last night they had the first ab blood type offer for lungs and I popped up 2nd on the list. They assume the number one person took them. So, unless someone with a higher score gets listed I am next on the list for AB lungs. And this was for this whole side of the country, not just the UNC region. So, Becky wanted an update on my condition in case the call comes. Of course who knows how long that still could be...

Pneumothorax (collapsed lung) Procedure Update

Mitch is back in his room. He is in a lot of pain. The procedure went well.
The tube in his lung is attached to this chest drainage box called a pleurovac (or something like that) and has a low suction to help his lung to stay inflated by sucking air out of the pleural space outside the lung, creating a vacuum. There is leakage, a hole, which must repair itself. It repairs itself only when inflated by resting on the upper pleural wall.
They will take x-rays tonight and often and see how it looks, if its staying inflated, etc. then they can stop suction, clamp tube, remove tube. baby steps...
Mitch reports being in excruciating pain as there is a tube sticking out of his chest; though naturally, he is breathing better. I hope he can sleep tonight.

Mitch is having the procedure now. 310pm.

Bump in the Road

The past 5 days Mitch has had this sensation when he leans back while sitting or if he lies on his back- pain and a pulsating feeling- his chest was literally jumping under your hand, on his left side, a little lower than where his heart is located.

He requested a chest CT at Johns Hopkins Hospital (JHH) and unfortunately it's not "nothing" as we blindly hoped, but he has a partial collapsed lung. He has to have a surgery tomorrow (hopefully tomorrow- Hopkins is always running behind) where they insert a small tube into the lung and inflate it, then leave the tube in for 24 hours to monitor and make sure it does not collapse again.

Becky, the patient care coordinator at UNC-Chapel Hill (UNC-CH), ok' ed the plan and procedure on the phone to Mitch and she made sure to get the hospital's number in case the call comes tonight- She said there has been an eerie lull in calls for lung donors...not in 3 weeks.

So needless to say, Mitch is in the hospital again, at JHH- where he did NOT expect to be again after his release last month- Plus, we have 3rd row center seats to the Phish show on Saturday which he has been obsessively thinking about for months- our first show since they got back together in March. He really hopes to be able to go, but the doctors are not sure if it will work out by Saturday.

I will update as things progress or change...

The Waiting..

'You take it on faith, you take it to the heart, the waiting is the hardest part'-Tom Petty

Well, week 2 is coming to a close. I had a few nervous phone calls. But for the most part, am not overly anxious or paranoid that the phone is going to ring. I try and go about my day with a mixture of some work issues, spending more time with the boys, and trying to get all the things finalized with our relocation. It has been very hard to concentrate on things though. At least I have a great excuse now when I forget to do something for Reba. Don't know how many more times I can go to that well though.

I want to thank everyone who has reached out and given Rebecca and I warm wishes. It really feels good to know everyone cares.

I spent a bit of time trying to research the Angel Flight pilots who volunteered to fly me down the instant the call comes. 11 Pilots donated their time, aircraft, and piloting skills for my transplant journey. That says a lot and makes me feel really good knowing there are a lot of decent people left in this world. That is no small contribution. The pilots have to fund the trip on their own dime!! They can write it off, but still. With 11 pilots lined up the chances of one of them being available, regardless of the time, is practically guaranteed.

However, we finally finalized the details on the place we will be living at in Chapel Hill. We can't move in until August 31st, but the new plan as of now, is to relocate down there if they have not called me before the end of the month. School starts down there August 27th for Kindergarten with orientation on the 25th or 26th, so we would go down then and stay somewhere until the 31st. If I am still not called going into September the time away will be like a sabbatical I guess. It might be really good for Rebec and I to get away. We can use the time to really concentrate on staying healthy and getting mentally prepared for the transplant. More to follow...

Why UNC-Chapel Hill?

You may wonder why we are travelling down to Chapel Hill, North Carolina for the lung transplant. And if you don't..then stop reading!

As most of you know Mitch has been followed by Dr. Mike Boyle of the adult Cystic Fibrosis (CF) clinic at Johns Hopkins Hospital for the past 10 years, approximately. Dr Mike Boyle and the CF team have been amazing both clinically and in their "bedside manner." I have the utmost respect for Mike Boyle, as he has always been professional, accountable, and approachable; sharing his personal cell phone number and email, with Mitch and I, and always providing the highest quality care to deal with the complications of CF, in all its complexity, over the years. So, because of our relationship with Hopkins and Dr. Boyle and the CF team at Hopkins, it made the decision very difficult- not only WHEN (because you can't wait until you are on death's door and hope to have success) but WHERE to have the transplant?

Mitch's dear friend, Ian, who also has CF and is from the area- (Rockville, MD), had a lung transplant at UNC- Chapel Hill 15 years ago. He has been the inspiration and hope for the procedure from the first words in my recollected consciousness Mitch spoke about the transplant to me because of his great success. I know sometimes it is hard to fathom the seriousness of the transplant but back than, the success rate for a lung transplant was much lower than it is now. It was like 50% chance of one year survival (it is now 90%), which is why it was so scary to consider and Ian's success that much more important to be aware of. Because Mitch had another friend, Charlie, who was not lucky with his transplant.

When Mitch and I first moved up here in 1998, we saw Ian at Cameron Seafood's on Rockville Pike and he cornered Mitch and with grave seriousness told him to "go down the Chapel Hill right away and get listed" and "that it was the best decision he had ever made", etc. Mitch, at the time, in retrospect, was much healthier than he is now but had begun to have bouts of hemoptysis (bleeding lungs) -which, by the way, is a very scary thing! - I remember how weak I was back then, in respect to dealing with Mitch's illness and the future-...and when Ian was talking about Mitch getting lung a transplant- I suddenly felt very dizzy and ill and had to go sit down in the car. I used to get physically panicky and faint when thinking about the transplant and his illness. I have become much stronger- but it did not come naturally, that's for sure.

Mitch and I visited Chapel Hill over the years. We went together in 1998, probably shortly after seeing Ian, and checked it out, talked to Dr Yankaskis who was a very respected Pulmonologist at UNC. Mitch was not ready at the time though. A few years later in May or June of 2000, he went again with his brother, Terry, right before I gave birth to Simon and Matias, and took all the tests in order to get listed. But they have since changed the way transplants are done- using a Lung Allocation Score (LAS) rather than waiting on a list for sometimes, years. Since Mitch was not ready for the transplant yet, he went inactive on the list. Over the past 6 years, he has gone down about once a year to check in and let them know he was still here- wanting them to know who he was for when the time came.

About 2 years ago, some of the docs at Hopkins began mentioning he should begin thinking about getting a transplant. Hopkins lung transplant program started to become much more competitive and successful with the addition of Ashish Shah, MD a badass cardio-thoracic surgeon from Duke. see resume: http://www.hopkinsmedicine.org/transplant/About/Shah.html
We started to change our mind and consider Hopkins as a serious candidate for the surgery. When Mitch and I started interviewing Hopkins and Chapel Hill to determine which place to have it done, we were really torn. The relationship with Hopkins and his docs and their concern over logistics- all the follow-ups and bouts of acute rejection started to really sway our choice. Hopkins is one hour away and Chapel Hill is 5 hours- big difference! Also when Ashish came into Mitch's hospital room and told him that he would find the most pristine lungs for Mitch and be at his beck and call after the procedure, well, this was promising and persuasive. ..he had such confidence in his skills.
However, the surgeon and the docs, are a large part but not all aspects of the transplant process. The other elements: the rehabilitation, the nursing staff, the function of the transplant wing, and the patient care coordinator are also very important. Chapel Hill won hands down in all these aspects. When we met with Becky, the patient care coordinator last spring at Chapel Hill, we were totally at ease. She is brilliant in her knowledge of CF and medicine at large, totally precise in her speaking and confident, optimistic, and also personable. She made us feel like she was totally going to take care of not only making sure Mitch was getting the best medical care, but that his needs would be met- and the needs of his family, and other aspects as well. She understood that this process required the backing of a network of support- that it was not just Mitch getting a procedure, but Mitch's whole family going through something HUGE.

Chapel Hill is selective and limited in how many transplants they do a year. They do about 15 a year, whereas hospitals such as Duke and Hopkins do as many as they can. Chapel Hill specializes in Cystic Fibrosis has specific experience in CF patients following the lung transplant. Chapel Hill has one of the oldest lung transplant programs in the country and their retired surgeon, Thomas Egan MD who worked at the flagship lung transplant hospital in North America- in Toronto-and is now a consultant for the surgical program and primarily an Academic at UNC med school (I believe), He trained the surgeon Ben Haithcock who will be the chief surgeon for Mitch's transplant surgery.

We met Dr Haithcock a few weeks ago when we went down to Chapel Hill a few weeks ago. He is not as impressive on paper as Dr Shah-see resume http://www.med.unc.edu/ct/files/Haithcock%20%20CV%2011-08.pdf see resume, but apparently his manual and technical skills as a surgeon are amazing. He performs the 6-10 hour surgery all by himself (he told us) and he has the fastest speed for putting the new lungs in- which is apparently very important because of ischemia, blood supply to the organ. The lungs only have 2-4 hours to be outside of the body so they must be connected quickly. Some organs can live outside the body much longer. It was cool meeting Ben, he was humble, for a surgeon, but obviously brilliant.

The lung transplant program has its own floor in the hospital. It is clean and quiet, the rehab, PT room is big and very impressive. The woman who heads the PT program is young, about our age, is funny, energetic, and strong. She is an example of the sample of health care providers that are drawn to and employed by the hospital. Because it is a college town, the town's vibe is youthful, enthusiastic, and optimistic.

So finally, from a holistic perspective, the setting of Chapel Hill also made it better choice over Hopkins. If you have ever been to Johns Hopkins Hospital, the last thing you would want to do, is step out of the hospital for a leisurely walk with your new lungs -it's in the slummy section of downtown Baltimore. Whereas Chapel Hill is a cute little hilly college town which reminded us of Gainesville, Fl. Chapel Hill is the perfect place to get a new lease on life, we decided.

Logistically, it is harder, but we hope this can and will all be worked out.

We will live there for at least 12 weeks post-surgery for rehab. Mitch will be in the hospital probably a minimum of 14 days after the procedure and than rehab is 3 times a week. Plus, there is a lot of acute rejection that occurs at the beginning so the anti-rejection drugs need to be closely monitored.

Here is a link to UNC- Chapel Hill explaining about Lung transplant and you can take a look at their program.
http://www.med.unc.edu/cystfib/trnsplnt.htm