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