Update

Well, I hope this post finds everyone happy and getting ready for the holidays!

We've been a bit quiet lately, mostly because we have been a bit busy moving out of our place in North Carolina and driving down here to Florida! It took a few extra days for us to leave, but we left on Friday, the 18th, after my clinic appointment. We left just as the giant north east storm was rolling in. All we encountered was flurries that turned to rain on the drive down to Vero Beach, FL. Nothing like the 2 feet of snow everyone up north got. My docs cleared me to go, but on a close watch.

So, the situation is basically one of continued wait and see. This is partly driven by the holidays, but also giving my body a small rest. The narrowing/stenosis continues and at times is very problematic. I sound very funny when I breathe, ie. whistling sounds, vibrations, tightness, a bit of discomfort. It does vary a bit, but is fairly consistent. On friday, the chest x-ray showed the infection was improving, but with the narrowing which is not only at the anastomes, but seems to have spread distally to lower parts of the lungs, prevents me from taking in deep breaths and expelling them. Unfortunately, my Pulmonary Function Tests (test used to measure breathing capacity), were incredibly low. Almost to a pre-transplant level, however, if the stenosis gets controlled, there is no reason to believe these should not improve rapidly. My oxygen level remains ok, though, and although I continue to work out and exercise it is very hard to take in deep breathes, so I get very short of breath.

So, what is the plan. Hopefully, things stay status quo through the holidays. I will return to Chapel Hill the first of the year and Becky has assured me that some more aggressive steps will be taken to try and resolve this. Perhaps the more permanent stent? Not quite sure, but something needs to be attempted. This complication is a bit rare. Not so much the stenosis at the anastomes, but combined with the distal stenosis. About 6-8%. So, again I guess it could be much worse, but the fact that it is not the most common complication really presents a slight unknown factor.

It is nice to be relaxing down in Florida though, and we all will drive back to Maryland around the 30th. Rebec and the boys will stay there, as I spend a few weeks getting things straightened out in Chapel Hill. I might be able to go home for weekends and things, and the hope is by the middle of Jan. I will be there permanently.

In a full circle scenario if you refer back to my post on 8/16/09, where Rebecca and I barely made it to the Phish show and I vowed to make it through transplant to see another show.... Well, timing is everything and the New Years run is down here in S. Florida. So, guess what? Thats right, I have my tickets for the show on the 28th!! Hopefully, that will be a great night before our return trip to Maryland!

Hope those that celebrate Christmas have a Merry one.

-Mitch

No Walk in the Park

Wow, what a 48hrs. I am lucky to be home, let alone to have gotten home yesterday afternoon. As Reba wrote, I had a complication during the bronch. Basically, when they snipped a piece of the lung for a biopsy the lungs started to bleed. They apparently did not realize right away and when they were pulling out the breathing tube and scope I started coughing up a lot of blood. So, they re-intubated me. Went back down there and somehow made sure the bleeding stopped. But they had to keep the breathing tube in overnight and keep me in the ICU.

When I awoke saturday morning, I had 2 ivs going, tubes in most orifices, but luckily had no idea what was going on. They kept me very heavily sedated. I vaugely remember Reba getting there in the am. and talking to me trying to tell me what happened. I was told that all night I was asking to write down things and slightly combative everytime they let the sedation up. When the sedation let up enough in the am, I basically demanded they remove all the tubes. I believe, but Rebec would have to verify, Dr. Haithcock came in and gave the ok. They took out the breathing tube, and iv in my arm. Dr. Haithcock came back about an hour later to check on me and explained what happened again. I hardly remember, but he said he wanted to keep me a day or so to watch me and I immediately refused. I actually at this time felt great. The narcotics had not worn off yet, and the breathing tube was gone, so I told him how great I felt. He agreed to watch me for a few hours and let me go Saturday afternoon. They pulled the catheter (note to CIA-good torture technique, forget waterboarding), and I finally got out of there around 4pm.

By then though the toll of the trauma I went through was just starting to effect my body. I was not feeling good, but put on the game face to get home. Thankfully, my parents were down here to help with everything. Good timing for a visit. A little weak and wobbly, but I was just not going to stay in the hospital overnight again. I rested saturday and slept decent last night. Today, my body is expressing the toll of the stress it went through. For some reason, all my muscles in my body seem sore. Neck, chest, legs (probably from the leg workout i did thursday in pt though). My breathing is not great, still have leftover congestion from the procedure and it is hard to take deep breathes because of the soreness. I was under sedation for over 12 hours with a breathing tube just 30 hours ago, so to be home tonight writing this to me seems like an accomplishment.

I don't want this post to seem negative, I want it to be accurate though for when we look back on my experiences. After a double-lung transplant and the recovery associated with it, something like this seems like a walk in the park, but it certainly was not. It was hard...

-mitch

Update 12.13.09

Mitch had OR bronch on Friday. Scheduled for 12pm, started at 7pm.
The bronch showed the lungs looked better , infection better, stenosis/narrowing better.
Dr Haithcock also did a biopsy to check for rejection which caused bleeding, which is a rare complication. He had to re-intubate Mitch and go back in and take a look to make sure the bleeding stopped, etc. They kept the breathing tube in and Mitch in the ICU overnight, Friday night.
Breathing tube came out Saturday morning. Luckily, Mitch was sedated and thought when he woke up that he was just getting out of the procedure the night before. He was back where he started, next door to his room right after the transplant in the CICU! I am glad he did not suffer, I worried that all night he would wake up and not know what happened, and why he was in the ICU on a vent.
Luckily, he is home and recovering. All of these incidents take a toll. He is weaker, but at least the infection is better. The next OR bronchoscopy will take place in a few weeks. Same procedure, but no biopsies.

Although, next time- we are only taking an early morning appointment for these non-emergent surgeries.

Billy and Gayle were here during this happening, thankfully. They took our dog and one car back to Maryland. Hopefully, we will all get back there soon.

3 Months Today!

Well, this last month did not go exactly as planned or as hoped for. But, it did go by. I continue to have lost lung function due to the stenosis issue and infection. As Rebec posted, I had the OR Bronch done last weds. It really wiped me out for the remainder of the week, however by friday i was starting to feel better. Dr. Haithcock, immediately said after this bronch he wants to do it again on the 11th. So, that is this friday. The idea being, to stay ahead of the narrowing a bit. Open it up some, wait a week and a half while taking heavy antibiotics and then repeat the procedure. Hopefully, achieving even more dilation the next time. He is very confident that my body will slowly start to finish the healing process around these airway connections and the narrowing will no longer occur.

Right now it is very similar to a chicken and egg scenario. My anastomic connections have not fully healed, so they are probably like an infected wound. This infected wound, like all, loves bacteria. Well guess what, even with the transplant I have plenty of my old CF bugs in my throat area, and sinuses. So, the bacteria trickles down and makes the anastomes it's home. It creates infection which trickle even further down my airways. Since I have the narrowing, I can not clear out those infections, instead my body compensates and takes smaller breathes, without alot of air movement in my lower airways, little mucous plugs and infection stick around. More infection lower down then also leads to further narrowing. So, this is the cycle we need to break. The good news is it should be breakable, and my new lungs continue to show no signs of rejection. It could be much worse.

Not helping this process is the fact that my immune system is a little too suppressed. My white blood cell count was very low. So, low it can not help the infection. When they immunosuppress people they shoot for a low number to avoid rejection, but not totally deprive you of WBC. So, they took me off two of my meds for a few days to see if these levels come back up.

I went to Rehab yesterday and the difference from the prior monday before the OR Bronch and balloon procedure was clearly evident. I did much better and tolerated much more exercise. I still am not back to my week 6-7 level, but I do feel like I can get there. The goal is to really try and keep the airways open this week, let Dr. Haithcock go in there Friday and open them even further. Hopefully, the antibiotics are keeping the infection in check and by next week should feel even better.

Our/my timeline seems a bit in jeopardy now in regards to all of us being back in maryland by Jan 1. But it seems like I may just have to stay an extra week or two. It is still up in the air. The boys and Rebec will go back though and start the school semester up there. We need to start to go on with our regular lives and look at this as just complications that are par for the tx. I really think I should be there by mid-january.

This 3 months as been hard, no question. But it has been filled with happiness, excitement, and hope all at the same time. Something, that pre-CF life right before transplant, did not have.

Again, thanks for reading and following along.

-Mitch

Bronch Procedure 12/2/09

Here is the deal...Mitch's new lungs are showing major narrowing & major infection on both sides. Dr. Haithcock said the CT scan they took yesterday showed parts of his lung that were collapsing from the narrowing and infection. He is concerned because the infection has gotten a lot worse since the last bronch. Let me rephrase that- he is concerned about the infection, he said he is not overall concerned with Mitch's prognosis or the new lungs. He said that this happens between 15-30% of the time and with treatment- the ballooning and if necessary the stenting, it gets better. He will perform another OR bronch in 9 days.

I talked to Ken, the patient care coordinator, and will later page the attending pulmonologist, Dr. Coakley. The infection is having a hard time getting better because of the immuno-suppressants, and also the narrowing does not allow him to clear the secretions through coughing.

They keep saying that this will get better without any long term compromising effects.


Here is our mantra: Four short, sip-like breaths in to O-pen O-pen, two long breaths out, Heal! Heal! We have been receiving private kundalini yoga sessions, did Mitch tell you? Its been fabulous, a lot of breathing exercises, as the instructor has done a lot of pulmonary rehab work. Our yoga instructor is the lovely and poised:
HarDarshan Khalsa www.sacredlistener.com
Its been a great practice and sacred time to spend together!

Bronch Day

So, it is around 1am Wednesday am. I can't sleep in this hospital, although the room is quite nice. Hopkins should take note! The rooms here are quite clean and not incredibly hospital looking. Although, this soap box is better for another post, I am just so glad to be here then Hopkins. There, the rooms they put the CF patients in are dirty, the service staff never cleans your room, you have a small tv, but get this you have to pay $15 bucks a day to use it and to use the phone! Meanwhile they are building a billion dollar cancer and childrens center! Go figure. I can't fathom that this much smaller, but in my opinion, finer instituition has more money to devote to patient ancillary services. I guess they find it a priority though, and that helps. Small things like these, ie. good food, flat screen tv, clean room, nice volunteers, help people get better quicker! Newsweek needs to take this into account when they always rate Hopkins number 1 in everything, it just simply is not the case!

Anyway, back to my health. So, today or yesterday(tuesday), I saw everyone, including Dr. H. (Haithcock). That was nice of him to stop by at the end of the day. He even said he was going to re-arrange and few things and do my procedure first thing this am. So, that should be in a few hours. I know how things go though, and I know they have all kinds of rounds and transplant meetings weds. mornings, but the idea is to do me before this! He is so re-assuring. He told me simply not to worry. This is a complication that 15% or so develop and it takes time to treat, but he is fully confident it is treatable and the new lungs are fine. They switched my antibiotics a bit, so hopefully that might help as well. So, the plan is open up the narrowed airways (evident on CT scan), take cultures and biopsies, and also clean/wash/lavage as much junk as possible.

I'll have Reba update everyone later today or tomorrow. At least I got to hear Obama's speech and hear how hopeless and confusing Afghanistan is. I'd rather have my bronch tomorrow then get deployed there. Here's hoping it works.....The bronch and the new strategy (if you can call it that)..

-Mitch

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