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.