Too Much Turkey-Back in Hospital

Yes, I am back in the hospital, but no it is not from the turkey. In fact, this was perhaps the best thanksgiving I/we have ever had. The food was amazing, thanks to my Aunt Harriet. The table was spectacular, and everyone seemed happy. We all ate, drank, and talked the evening away. The kids were great as well, and loved the turkey. It felt so good to be home!

I worked out that thursday morning, and did not feel that bad, but had a slight feeling like the narrowing was returning as I was sucking air instead of breathing it, if that makes sense. As the days continued, the "sucking" of the air got worse, and it started to feel just difficult to breathe. Finally, by sunday morning I was wheezing very bad again. Although, the sound is a bit different then last time. And this time I also get very short of breathe just doing very simple things. That is a bit different. So, This morning (monday), I called my coordinator. I was suppose to anyway to check in after the trip home. I left her a message. I had Rehab at 11, so I told her we could touch base then. Well, Kristin, my physical therapist immediately picked up on my breathing changes and called right up to Becky. She was expecting the call. Anyway, the team came down and listened to me and agreed it needed to be addressed ASAP. So, they brought me in. They scheduled another OR Bronch for Weds. AM. Dr. Haithcock will do this one again.

Although it really is a downer to be in again, I am glad. Because they are monitoring me real close right now. They already have done a CT scan, xray, blood work, and changed my antibiotics. So, if something else other then this stenosis is going on, then they will find it while I am here. Plus if I get any worse, I am here. It makes sense. If I get any results, I will post them.

So, here I am and now everyone is up to date. It was a great trip home though, despite my breathing difficulties. That was the toughest part, because I do look rather healthy and everyone commented on this, but my breathing was a bit labored. More so toward the end. I really wanted to be home showing off my new lungs, but not yet. 4 weeks ago I was practically jogging, but there is no reason to believe I can not get back there.

I hope everyone had a great thanksgiving as well,

-Mitch

Keeping things in PERSPECTIVE

Ok,

So here is the deal. I realized I need to really keep things in perspective and stay positive. Before transplant I was headed and was only going to head in one direction. Downhill, and I was heading there quickly. The old saying is you trade one disease for another one. Ie. Cystic Fibrosis, for post-transplant CF. The good news is this new condition has the potential for upward direction. Alot of upward direction, but you are going to have to manage the condition and it's bumps.

That is what is going on with me. Yes, I was doing better 3 weeks ago, but still am doing very well. This infection is treatable and I can still breathe better then I have in perhaps 10 years. I sleep well at night, take walks, exercise, etc. And the potential for that upward progression is visible.

We have the green light to go home for thanksgiving and still am on pace to be done with Chapel Hill in mid-December and return home. I was also told I can eat basically all foods now... That means, Yes Aunt-Harriet, I can have the fruit salad!

Hope Everyone has a great Thanksgiving.

-Mitch

Mitch Home Again

A few things happened today which were pleasing and positive:

1. Mitch had his procedure (the power picc) placed early this am.

2. Dr Yankaskis took time out from his busy schedule this am to speak with us and put everything in perspective. Yet, it was a more general clinical comparative perspective and perhaps made us feel at ease, but was not completely specific to Mitch's case,- specifically, because he had not seen the notes from the latest bronch, per se. We took from our conversation that these are the hurdles we must face but we will be ok/alive-
Although the causal relationship is still unknown-
the stenosis from the infection? the infection from the stenosis? (opinions contradict or compliment, anatomical vs. medical depending on who you speak with and when)
Perhaps its all the same; the healing process, the inflammation causes infecton, causes stenosis; A cyclical relationship rather than lineal, or causal.

3. The transplant team came and spoke with us in depth about our concerns. This was enlightening because we learned some things: diagnostic instruments such as xray, stethoscope, and blood test are not always good indicators for infection. i.e, Mitch has this CRUDD in his airways that needs to move out, and since he cannot cough well yet or have the coughing reflex since the transplant yet , but his white blood cell count is normal, his xrays are normal, yet he sounds noisy, wheezy, etc. So they said the bronch is the only tool they have to "see" the infection/congestion. Who knew? Oh, and most pleasing- these infections from his CF bugs- they are saying the infection is from his old bacterial strains dripping down and colonizing the airways from the connection and also his sinuses- these bacterial infections have NOT been shown to create acute rejection. The infections that can cause rejection by awakening his sleeping immune system are viral.

4. The first results came back from the biopsy and there is still no sign of rejection!

5. Mitch came home this afternoon.

6. We can still go home to Maryland next week to eat Turkey, but NO FRUIT SALAD!!!!

CRUDD

Well, the rest of the day is a blurr since I wrote to you this am, dear readers.

Mitch was admitted to the hospital after the bronch today. During the bronch procedure, they discovered many thick secretions of CRUDD-a very medical term used by Dr H.- which has colonized in Mitch's new lungs. The theory is that the infection is the source of the narrowing airways. The smaller airways are filled up with this thick mucus. During the bronch, Dr H. did open the lobes with the balloon and he said everything looked ok; the anastomoses looked healthy. He cleaned a little and took biopsies to check for rejection.

The results of the biopsies and cultures should trickle in starting tomorrow, hopefully.

Let me clarify: He was admitted because they needed to fit him in for the Power PICC so he could go home on IV's and there was no appointment slot for outpatient. Mitch is supposedly getting a POWER PICC tomorrow, which is a long term picc- line (central IV line) , so he can get all the IV antibiotic he will need to clear this infection, and any others down the road. He is supposed to come home tomorrow after he gets his IV started.

We hope this does not affect our chances of visiting Maryland next week for Thanksgiving but we were surprised with this news today; as we were told the narrowing was a result of stenosis as discovered from bronch 9 days ago supposedly and as Mitch has definitely been emailing/calling/daily! how he has not been feeling right...and the pcc/docs have been basically saying he is fine- "couldn't they tell he had an infection from their stethoscopes, xrays, blood tests, and his precise clinical reports- shortness of breath, chest pain, weight loss, wheezing, and noisy breathing?" I asked as i am sure you were wondering this too, readers. The response was that they needed to wait for the bronch to make sure before they blasted him with antibiotics because of the immuno-suppressants he is taking. i.e, Not wanting him to build up a resistance to the antibiotics.

I guess that makes sense? Although, he has been taking these same antibiotics his entire life for CF (not to make my own point) yet I am still a little unclear.
I guess my thinking is that when infection develops it makes sense to knock it out immediately before it takes over and could potentially cause rejection by activating the immune system. And obviously, being much harder to get under control after it becomes a mighty beast like apparently this CRUD sounds like.
Was waiting another 9-10 days after the last bronch a good idea- how much bigger did the infection get? Are there no other indicators of an infection- what about the items listed above- stethoscope, xrays, blood tests (what about white blood cell counts) ?

Alas, we have no other choice but to trust them and hope for the best.

Had a great visit this weekend with Mr & Mrs Pops, Bob, and Vanessa. A good distraction.

Mitch having flexible Bronch NOW (Monday AM)

Mitch is currently having the procedure done- We saw Dr Haithcock for a few minutes and he said he was doing a flexible bronch and opening the airways- using a balloon-like device. He said this may have to be repeated a few times after today, it all depends on the response. There may be a need for a temporary stint in the future if these interventions are not conclusive.
Mitch had to be put fully under for this bronch- breathing tube, the whole deal. Being in the hospital makes me very anxious now, but seeing Dr Haithcock made me feel better because he makes all surgeries seem like a breeze. Ok, i will update when he comes out.

Friday Mini-Update

Ok, so the ghost picture did not get as many comments as I would have thought. I guess I need to post some more open surgery photos!! Just kidding, it was just to lighten the mood.

So, here is the situation. Finally, by weeks end I have spoken and met with my docs and have a better understanding for what is going on. It is like my post from last week, but there was significant narrowing or constriction in both airways where they joined the old airway to the new airway. So, they call this stenosis. It should be nothing too major, but is the reason why the last week I have been wheezing fairly bad and have been short of breath. All of my other numbers still look good, ie. oxygen sats, etc. So, the lungs should be fine. I can tolerate exercise, just can't really make any gains because it is hard to suck in alot of air with the narrowing.

So, I am on the schedule for monday, where they will put me under and use a rigid bronchoscopy device which will allow them to open up both airways. I should get immediate relief from this and depending on what technique they use and what they find we should know alot more after the procedure. They will also be able to do another biopsy to make sure I have no acute rejection.

So until then,

-Mitch

Do you believe in Ghosts!

Ok, this has nothing to do with my transplant, but I thought I would lighten things up and post a Halloween photo. This photo clearly shows a ghoulish spirit or entity has possessed Matias' pillowcase filled with candy. This also clearly explains why he has been acting possessed lately!! Just kidding of course.

But seriously, examine the photo below and look at the face that appears at the top of Matias' pillowcase. I took a few photos and it was not until we got home and looked at them did we notice this.. This was taken at the most decorated and elaborate "haunted" house in our NC neighborhood too. Very Freaky! Nothing in pillowcase except candy.. He had no mask that we were hiding, he was dressed as a ninja. So, what is it?? If you can zoom in on it, the detail is quite realistic.. have fun

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.