stents Deployed

Well, it looks like everything went well yesterday. Dr. H, came into the pre-op area about 3pm and went over all the details on what he intended to do. After hearing how I felt the week immediately after the last balloon bronch, he was fairly confident this should help.

Procedure really only took about an hour. I was waking up from sedation around 6pm and out the door by 7pm. My recollection of last night is a bit groggy, but apparently it went perfectly. Dr. H, is happy with the placement and said there were no issues placing the stents, and that all things considere, the airways and new lungs looked good. No signs of any lingering infection either.

I demanded Chipotle, and my Dad took me there. I got a loaded Burrito with chips to go. Back at the hotel I got a few different drinks, as my throat was now starting to really feel sore. I don't remember devouring the burrito in my room, or drinking a bottle of water, a bottle of coke, and a bottle of apple juice. Or making tea, but when I woke up in the morning someone must have done those things!! I wonder if that counts as a "light meal" that the discharge nurse suggested for the evening.

Anyway, I woke up with a continued sore throat and body aches. This has been typical from these procedures and the full sedation. We were not sure what really to do, as Becky briefly mentioned coming to clinic either today(friday), or next friday. I was still in a bit of a daze, although I felt more open and my breathing was much easier. So, my Dad and I decided to just leave and I would go to clinic next week. Well, 20 minutes out, I get a call from the doctor and they want me back to do PFT's.(Pulmonary Function Tests), I guess they really wanted to get a baseline of where I am at after the stents. Probably would have been best to wait 24 hours or so, but since it was friday and we wanted to get back to Maryland we really had no choice.

So, we headed back to the hospital and did the test. Surprisingly, it was quite good. My best numbers since the transplant, and this was in this groggy painful condition. So, that is very comforting news, by tomorrow or sunday, I should feel back to "normal" and resume some exercise. If these stents keep my airways open, hopefully my numbers will increase even more! The plan is to return to clinic next friday and get an xray, bloodwork, and another set of pfts. See how things look and make a long-term plan from there.

Overall, it appears to be a successful trip. Glad I did not wait until the 20th to have this done.

Talk to you all soon,
Mitch

Bronch with Stents Today

Short update. So, after feeling great last week, I think I mentioned I could slowly start to feel the narrowing returning. I was scheduled for the stent placement on Jan. 20th, but on monday, I was starting to wheeze much worse and get more short of breath. So, I called Chapel Hill and Becky and Dr. Haithcock agreed to get me on the schedule this week. So, today is the day. 3pm, to be specific.

My Dad and I drove down last night, I took him to the lung transplant support group which meets every other Wednesday so that worked out. It is a interesting group made up of people waiting for a transplant and who have had a transplant. We are now getting ready to head over to the hospital shortly.

Hopefully, this stent system will do the trick. Dr. Haithcock, generally leaves the stents in for up to 3 months and then removes them. Hopefully, by that time your body has healed and can keep the airway open without any further help.

I will get an update to everyone as soon as we can. If anyone is interested here is a link to the type of stent he uses. http://www.alveolus.com/tracheobronchial.php

-Mitch

Back in Maryland- A Few Afterthoughts

Well, I made it back to maryland this morning. There were just a few things I forgot to mention in my last long post, that I wanted to mention. Yesterday happened to also be the exact 4 month mark after my transplant. 09/08/09-01/08/10. One can tell that life has resumed to a more normal level when that was not the focus of my post. I remember feeling such a sense of accomplishment and success reaching the 1 month mark, 8 week mark, etc. I definitely did not forget the day, but it is not the focus any longer. I feel as though, despite the recent setbacks, that the mere length of time is not what is most important to me in this process. Although it does feel nice...

I finally feel ready to reach out to my donor family and let them know how I feel about their gift of organ donation and how I am doing. I will start to craft a letter to them. Not exactly sure what approach to take, but it will come to me. I wanted my health, medications, and outcome to stabilize a bit and I also wanted to physically feel strong or stronger before writing such an important letter. This will help me say things the way I want to say them without rushing out some steroid induced emotional letter that does not symbolize what I want to say.

The way the process works is as follows: Either the donor or recipient can write a letter at any time. It is handed over to a third-party (I forget the name, but it might have something to do with UNOS) through your coordinator, they read the letter and ensure total anonymity before forwarding it on to the other party. This protects peoples privacy etc. However, if a level of correspondence and trust develops the donor family and recipient can mutually agree to end the privacy and communicate directly and even meet. In case anyone was interested..

Anyway, that is about it for now.

-Mitch

2010- A Breathing Odyssey

Good sequels are not rushed. Sorry for the long delay in posts. Happy New Year to all!! This year I will approach as a sequel to my life before new lungs. Like all good stories it will have its ups and downs (I'm sure), it will have conflict, resolution, trials and tribulations...you get the idea. It will probably be long (like Avatar), in fact it will be 365 days. If it is a success, part 3 will come out in 2011!! It might not gross a billion dollars, but lock it in for at least a million beautiful memories. So, lets get it started.

When we last left the story, the protagonist (yours truly), was in a difficult battle with a team of dark forces led by their leader 'Stenosis'. We fled with the family to Florida and spent time with Rebecca's mom, Lois, in Vero Beach. We enjoyed a wonderful Christmas , time on the beach, and relaxation. The boys absolutely love 'Grammies Beach House' and had a lot of fun playing wii and wrestling with Peter. I actually think I might have played more wii then them. Super Mario Smash bros. is addicting.

Unfortunately, Stenosis found us! My breathing deteriorated very rapidly. I was back to wheezing and unable to tolerate much exercise. I was determined to continue with the trip, which included the Phish show in Miami. I was in correspondence with the docs and Becky, and we started back on antibiotics just to prevent any further complications from infection, and I was told to really monitor my SATS (blood oxygen level) if they remained in the low to mid 90's at rest, I am ok.

On the 27th we headed down to my parents place in Palm Beach. By this time, I really could not do anything active beyond walking straight lines, but I tried. However, on the 28th we made it to the show, I would not be denied! It was fantastic! I am so glad we went. It was a bit surreal because on both Reba's and my mind was my health. We were not sure if my poor breathing was still just Mr. Stenosis, or some more vengeful unknown enemy. But the music prevailed this night. I was able to stand and bob my head and move my hands (the nerdy hippy dance), so all was good. The set list was perfect. From the opening notes of the first song (Sample in a jar), to the closing contact-character zero we were able to lose ourselves for a few precious minutes and not worry. I had a feeling all week we were in for a good night and was not disappointed, karma. We had great seats taboot, see photo below.

During this time, we were in contact with Chapel Hill and Dr. Haithcock wanted me back in there to do the balloon bronch again on the 30th. So, off we went driving all day on the 29th. Had the bronch on the 30th. The procedure went flawlessly and this time we got some good news. Dr. Haithcock said he really thinks the stenosis is confined to the anastomes and not distally. So, this happens more like 20% of the time. Unfortunately, mine is a bit persistent and won't go away with these balloon bronchs, so he said he would put in the stents in about 2 weeks. Immediately though, I felt 100% better, by the time we got to Maryland on the 31st I was breathing so much better. What a relief to know that this is still fixable. I went from not being able to walk up some stairs, to unloading the car, putting things away, playing with the boys, and ringing in the new year at my brother Terry and Tracy's house playing rockband and counting down the ball with the WHOLE family!! Kids included. Some how, all the kids were awake and into it and about 15-20 of us rang in the new year. It made me feel so alive!! Thank you Terry and Tracy!! The boys have never come close to staying up to midnight, perhaps they could feel how special this night was.

About 10 days have now passed since the last balloon bronch and the stent procedure is now scheduled for the 20th. I felt great up until about 24 hours ago and now the narrowing or Mr. Stenosis has located me again. I slowly start to feel the narrowing creep into my airway and the wheezing is slowly starting. I am actually in Chapel Hill now and just finished a clinic appointment and rehab. The plan is to still make it to the 20th, if it gets much more severe, like in Florida, I am to call them and see if it can be bumped up. I know they have to procure the stents, etc, but that should be done or being done.

Back to Maryland tomorrow and hopefully I can fool the enemy to stay away and not progress for another 10 days.....Again, this sequel will be long, sorry for the long post, but thanks for reading. BTW, the second photo below is the day we left Chapel Hill. The boys made some great friends and it was symbolic of our time here. We found the people nice and approachable and it was bitter sweet to leave...

-Mitch

Here are some of the boys friends on their left and right is another set of twins, Trevor and Logan. In the back is the legendary "bam-Bam"

Here is a view from our seats at the Phish show before it began. Great seats right on top of Page's Keys!

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