Out of Surgery at 145am

Dr Haithcock came in at 1:45am and told us Mitch was stable after the surgery. He said the removal of the old lungs was difficult because of adhesions and scar tissue. Mitch had some bleeding which, is a concern, and will hopefully stop. He required 4 units of blood.

Mitch had been getting 3 shots a day of heparin (blood thinner) to prevent clotting since he has been immobile for the past 9-10 days.

Lyzka, Gayle and I are waiting to see him in the CT-ICU when we can.

Second Chance

Hi. These were taken before they took Mitch back for his SECOND double lung transplant surgery .

The opportunity could not have come later, as each day was becoming more and more tragic and terrifying.

What started less than 3 weeks ago, after a clarifying and conclusive wedge biopsy, that diagnosed Mitch's transplanted lungs with aggressive Bronchiolitis Obliterans Syndrome (BOS), the downward spiral began. BOS, a form of chronic rejection, is unusual in the first year post-tranplant and had completely destroyed Mitch's smaller airways and rapidly progressed, beyond treatment. It could have involved, theoretically, yet inconclusively, all the narrowing and airway issues he had from six weeks post-transplant and over the past 10 months. BOS ultimately presented as a drop in oxygen saturation during activity, and then overall- which developed in early to mid-June to a rapid and complete/conclusive decline with cell diagnosed BOS in early July/late June. However, Mitch has had a steady decline in Pulmonary function over the past 5 months.

Mitch has been in the Intensive Care Unit for 8 days, after a steady and horrifyingly rapid decline over the past 2 weeks since he was admitted to the hospital (UNC-CH)- For example, today, i.e., even on 100% oxygen, any effort or movement required him to gasp and struggle to recover for about 5-10 minutes. We wondered what lie ahead the past few days, with great despair, yet still hopeful, waiting for a donor but in moments imagining the torturious and painful future so many endure who succomb to illness--

Yesterday, Mitch hit a wall of sorts; which for him is HUGE, as you know. He is so brave and never complains or frets but is always optimistic--... Which was why it was so striking when he said he felt he was near death. I don't mean to scare you, my friends, - I just wanted you to know how fortunate and timely this organ donor is- whatever the outcome--- There really, was not much more time for success to be had, if it may.

This morning came, and a possible donor was found. We waited for hours for the final call- until 4pm this afternoon when they took him back into surgery.

I will let you know more details when they come but we are hoping that the second set is the right set and the last time was practice..

Oh, and they are doing a special "different" protocal which may really be great for his success and to avoid similar issues in the future.

% take over from then. Thank you to all the followers and welcome to all the new followers. It's inspiring.

% Got word this am donor lungs were available. Docs inspecting now. Should have final word any minute. If a go OR by 1-2pm. I hope this is it....reba will

Update from ICU: 7/19/2010

Mitch is sitting up and eating cocoa puffs right now in the ICU. He has gotten used to using the bipap machine which helps him breathe by pushing the air into his lungs. He uses it for a few hours at night and periodically throughout the day. It helps him when his breathing becomes too labored to only wear the oxygen mask/canula. He is very tired. They are thinking of giving him a blood transfusion.

He has had a few bad days the past few days, with a sprinkling of a few easier hours. He is waiting, very patiently, for the lungs to come.

A very wonderful person, Ruth Newnam, of Carrboro Massage Therapy, visited him on Friday and Saturday and gave him a massage in the ICU. She was his massage therapist last year after transplant. (Pictured above)

Update-ICU equals new hair-do

Hello all,

Thanks for the coninued support. I have continued declining to the point where they switched me to the ICU thursdday night, however this has turned out to be a good thing. The main reason for moving me was related mostly to my oxygen requirements. The regular floors don't feel comfortable and are not set up to handle that. Wednesday and Thursday were very rough days, if I did any sort of exertion my blood oxygen levels would drop. I also had a lot of pain breathing in and my lungs and chest just felt very weak. It is a catch-22 type of thing right now, they want me to sit up and walk, even if it is just a few feet, but at the same time they want my oxygen levels to stay high. So, we are balancing the two as best we can.

The good news is I am being monitored much more closely here and getting extra help makes me feel less worried. Friday, I actually was starting to feel much better in the sense of much less chest pain and able to breathe much easier. That has continued into today. So, who knows what was going on earlier. I hope this feeling will continue until the call comes. It should be soon, I know your score goes up even higher if you are in the ICU, so my already high score is bumped even higher. Could be any minute.

Logistically wise, we were able to find a great place to rent again. Which Rebecca and my Mom were able to get set up and have already slept there last night. It is in the same neighborhood we were before, which is great for when the boys start school. That was a huge stress reliever, just not knowing how to coordinate all this again. It is not as exciting as it was the first time, when the whole experience seemed like it would be an adventourous journey. This time it is out of critical need. But once the boys saw the neighborhood they got excited and started asking about their many friends. So, It makes me happy knowing that they will adjust just fine, they have already established friends, the school is great and we can walk there from our new place.

So everything is shaping up for the actual procdure. I hope I can continue feeling the way I am now before the call comes as the beginning of the weak was tough. Rebecca helped arrange someone to come to my room and give me a haircut. It was quite the spectacle yesterday as all the doctor teams decided to show up right during my haircut. Thats the way things go. I told her just to cut it all off basically, so I wont have to worry about it the next month or so. Who knows, maybe the beard will come off before transplant.......(cliff-hanger ending)

Thanks for everyones comments as we prepare to do this again. It has been amazing.

Mitch

The Wait Begins: Again

Hello All,

Well it is official, last night I was put back onto the transplant list here at UNC. Things have proceeded so rapidly, and the team here really stepped up the pace and got all the testings and approvals ok'ed ASAP. My LAS (lung allocation score), is vey high this time. Some 30 points higher then when I was listed for my first transplant. That is just an indication into how critical my health has become. The wait should hopefully be very short. It could be tonight, tomorrow, next week. We really don't know, but hopefully it won't be long. It is hard being in this situation again. Totally different thoughts occupy my mind. I hate that I have to go through this again, as a recipient. Am I taking lungs from someone else who has been waiting much longer? Yes, probably. Is that fair? I don't know. Whats fair? I know that if I am lucky enough to get another donor in time, I will fulfill my obligation and do everything in my power to recover and honor that person. I've shoved my chips all-in.

Now the wait begins. Even harder this time to keep my mind off of things, as I am trapped here in the hospital. My breathing is very labored and I am on a high level of continuous oxygen. It is difficult for me to do even the smallest of tasks. However, I try and keep stretching, standing, and walking in small amounts. Just 3 weeks ago, although not feeling great, I was able to get around. The progression has just been so rapid.

Rebecca has been a huge help the last few days making sure I have what I need and keeping me on the doctors radar. Everyone is doing there best and it feels good to know so many people are doing all they can to make sure this happens and I get one more chance.

The next post could be the call. Thanks for everyones support this time around as we go into waters that very few have adventured.

-Mitch

Mitch at UNC Hospital : Update

I wanted to write a little update; Mitch is not up to it lately. Mitch was admitted down here at UNC last Wednesday after shortness of breath which was not controlled on home oxygen.

Mitch's respiration is severely declining; oxygen use is up every day, and ability to tolerate activity is way down. We are puzzled at the rapid decline. There are no answers.

Although Mitch spoke about having a while to make this decision of re-transplantation, the decision seems to have been made for him- there is no time to think- we need him back on the list ASAP and are hoping for the best.

The transplant team came in this morning and talked with him briefly about the testing that had to be completed to resubmit the paperwork to the insurance company, and sign the final informed consent, to a treatment which we now know much more about when we were in this position last year- it's result unknown and the process abundantly harsh and torturous for the patient and compassionate bystanders and loved ones. However, the alternative is not an option, it never was.

I hope you can support our choice and cheer Mitch on to do what he does best: survive and inspire. I am eternally witnessing a graceful spirit who never gives up, always finds beauty and love in the presence of hardship, and never thinks about himself before others. It is an honor to write on his behalf and be by his side on this very challenging and nearly impossible quest. My best friend of 16 years and husband of 10 years is the most amazing, beautiful, and inspiring person on the planet, I say.

Slave to the Traffic Light

Yes, I will admit the Phish references are probably overboard by now, but honestly they just make sense.

Slave starts our journey into attempting to grasp the quickly approaching reality that I, in order to have even a small chance to live, need to have a second double-lung transplant.

"Seen the City, Seen the Zoo, Traffic Light won't let me through", those are the only lyrics to an instrumental song that lasts about 10 minutes. It sums up perfectly what I am about to experience. Frustration, out of ones control, and confusion come to mind when you read those words. That is the journey we are embarking on. Yet, that song, on occasion, is capable of being one of the most uplifting, miraculous, awe-inspiring, pieces of music ones ears can hear. There have been many tears shed during this song, by myself and Reba just the other night, and by thousands of others I am sure. Because in the music everything becomes completely clear. All the questions are answered, and everything is perfect. From complete frustration and not knowing to peace, harmony, and acceptance.

That is the theme of this second half of the blog. Embarking on a journey where the start is out of our control and we have such a sense of helplessness, but the end will be clear and perfect no matter what happens.....

So, it begins.

Thanks,
Mitch

Official end of the first Blog

No, I won't make everyone sign up for a new account or subscribe for a new listing etc. However, the process of my double-lung transplant has ended, at least for this set of lungs. It is only appropriate that we move forward. Part two is and will be much different. No more excitment and sense of adventure. We are in full survival mode now. It is fitting we start fresh documenting what this second process is like. The new working title is Slave to the Traffic Light. Which you will learn about quickly in my next post. However I wanted to just do a copy and paste of what the original blog title description was, so we have it memorialized. Thanks for carrying me and my family through this long 10 months. The support from this blog was mind-blowing and more helpful then anyone can imagine.

Begin old description that Rebecca wrote last year:

Down With Disease: A Double Lung Transplant Blog

"Waiting for the time when I can finally say, this has all been wonderful and now I'm on my way" (Down with Disease, Phish)-DWD is a way for our families and friends to be in THE KNOW during Mitch's double lung transplant process,(which occurred on 9/8/09) He required the transplant after reaching end-stage lung disease from Cystic Fibrosis.

SNAFU

I struggled with how to make this post, what the title should be, what the attitude should be. I simply have nothing except to be straightforward as my doctors were with me.

The transplant did not work. That's it. I went down on monday for the follow up biopsy I last talked about. I had the procedure that afternoon. It was called an open lung wedge biopsy. They sugar-coated this a bit. I was and still am in some serious pain. They went in the chest wall and took actual tissue samples of the lungs. I woke up with a few more ivs in place, an arterial line, and 3 holes in my right chest, one was a huge chest tube. Not like transplant, but close.

Finally Dr. Haithcock (my surgeon), Dr. Pedar Noone (the head of the transplant program), and Becky Cicale (my transplant coordinator), came into my room thursday around noon and sat me down.

They were very shocked and disheartened to report that the results were very conclusive and I was in advanced stages of chronic rejection better known as BOS or Brochilitis Obliterans Syndrome. Basically, my smaller airways are completely obliterated, scarred, fibrous, and tearing themselves apart. Thus the rapid need for oxygen and the ability to never feel as though I could breathe, or my breathing was getting better.

Given how rapidly it onset, how progressive it was, the unknown of how it happened, there is no viable treatment option at all. The only possible scenario would be for a second transplant. The pathology was that bad.

It was sad to hear this, but in a way I knew.

We are exploring our options now and thinking things through. I want to keep that thought process for another post. It is almost impossible to grasp the idea of doing this again, although re-transplant is not taken lightly and the fact that they would even say I am a candidate is a good thing. It is a bit more difficult, but they feel my age, newness out of surgery, and case history among other things make me a good candidate. But there are simply no answers to why this happened, when it started, and why it happened so rapidly.

Which brings me to my title. I remember one story when I first started working in OT, I was working in some nursing home and this old man was rambling about how he just had another diagnosis of cancer and was going to die soon. He was a WWII Vet. And he looked at me and said, "this is just a SNAFU". "You know what that means, kid" And I begin to describe to him the actual definition of what I thought it meant, ie. it means you hit a little road block.blah blah blah, and he cuts me off and goes, "NO God Damnit. It means Situation Normal: All Fucked Up!" I had no clue..You learn something everyday.

Thats what this news is one giant SNAFU.....

-Mitch

quick update

So, a more clear definitive plan was ironed out yesterday. The results of the regular OR bronch biopsies again were inconclusive, just showing some sort of inflammatory response. Having high plasma levels. So, since everything else has been ruled out, they need to get a sample from the airways much lower down where a scope can not reach. This is also the area that looks worst on xrays, ct scans, etc. I didn't mention this last post, but it was discussed last week as well.

It is more of a surgical procedure, where they remove a very small piece of the lung tissue so they can completely analyze it. They do it though, through the chest wall. It is called a Thoracic Wedge Biopsy, I think. Not to dangerous or risky, however Dr Haithcock, did point out sometimes after trasnsplant the lung wall has scarring and such and it can be a bit tricky requiring a larger cut. It takes a few days to recover as they do put in a chest tube.

This test will allow them to rule-out every possible thing, and hopefully give a definitive picture on what is happening. If it is a form of rejection, what kind? And this will help guide the treatment plan. A bit invasive, that is why they don't do it often. However, they decided that until then to try another round of the high dose steroids IV. Like I did about 6 weeks ago. Perhaps it might work. I did the first dose today, do one tomorrow, and one friday. If I get a miraculous bounce from this they will hold on the surgical procedure, but it is tentatively scheduled for Monday.

I will be able to get out of here tomorrow for the weekend and spend time with Rebecca and the Boys! We did not see eachother yet, since her trip to Italy, as I left the night she came home.

So, this is what is going on. So, who noticed the new pic at the top?? Taken same trip, just decided to switch it up a bit. That was almost a year ago, before transplant! Crazy to think about.

-Mitch

Reality-The alphabet doesn't go ADC, does it? Somethings not right.

So, it has been 3 weeks. Trust me when I tell everyone I have been wanting to post more frequent updates. But, they would have sounded like everything was going perfect. I would have written about how I think my lungs are continuing to be better. How it was so good to be back at work, how Rebecca was able to go on her biking trip through Italy! And how I survived watching the boys for those 10 days, key word is survived. And how they finished kindergarten with great reviews and have made it to the first grade! How business was good, life seemed to be getting back to normal, and how Matias lost 2 teeth in two days. Telling me that the tooth fairy told him last time that for a big front tooth he gets ten bucks!! Who is this tooth fairy? Does she give your father a massage or something as well, I thought, but didn't ask!

Anyway, all of that was true, but the lungs have been getting worse. I have been ignoring a lot of it, trying to justify that the slight aches and pains while breathing were ok, and that my slightly less deep breaths were normal. Until, I started to not tolerate exercise nearly as well, and doing simple tasks were becoming very difficult. I am not coughing at all, so much different then pre-tx, with just CF. I started checking my SATS about a week or so ago regularly, and they are very poor and progressively got worse. For those that don't know from previous posts SATS are a little device I have that can measure the blood oxygen level in your body. It is just a finger sensor. By the end of last week, while at rest doing absolutely nothing they would read 88-90 maybe. Normal is basically 97 or above. After transplant I was 100 for sometime. With very light exertion they would go down to 83 or so. This is a sign that in the lower airways where the majority of oxygen exchange takes place, something is amiss. So, back down to Chapel Hill. Now, I know enough to know by now that your SAT levels are important. Also, I know that the forms of rejection Acute and Chronic are very different presentations. The weird thing being, acute rejection is very easy to diagnosis, mostly. The Bronchs I have would show certain characteristics. As do the biopsies, whereas with chronic rejection the diagnostic criteria is much different there is just so many theories and ways it can present, that the doctors are left to go on Pulmonary function test decline, and Oxygen levels. They can combine this with things, like eliminating every other treatable possiblity. Which is what they have done for me the last few months. I had some treatable complications, ie. the narrowing, some infection, some healing issues etc. The hope was treat these and the lungs should work perfectly. Well these things were succesffully treated and the lungs functions continue to decline, even quicker. WHY? No one really knows for sure. There are higher levels of lymphocytes? I think in my washes and biopsies, but no granulation formation, I think? To be honest with everyone, my doctors really don't know so they sometimes throw out these hypothesis, but the hypothesis get more and more refined as the testing comes back and prior history is taken into account.

Here is a digital photo of an xray I had the other day, not incredibly terrible,but basically all the white shadows, streaking, and spots in the middle two lower sections distant from the midline should not be there, it should be ribs and black. The scapula bones at the top and then heart in middle on both sides are normal.

But I want to level with everyone and myself, that finally the mention of Chronic Rejection and OB(Obliterans Bronchiolitis) has been brought up. They are the same thing, just different names. Different cellular and microscopic changes that occur. Some do respond to some changes in immunosuppression treatments. Which I think we will discuss tomorrow. Also, sadly, the remote possibility of Re-Transplanting me has been mentioned under the breath. Nothing anyone is considering yet, but something that has been discussed. If I don't catch a viral bug, or bad infection or anyting, I could have a lot of time in this chronic rejection realm. Perhaps a year or so, but I would not have the best quality of life in the sense of exercising and moving around. Physically and mentally, I do feel very well. My body has adjusted to the meds and my body feels relativley strong, although with the breathing issues I have lost some weight recently. I had to start back on oxygen when I need it.

So, that is the news where it stands. Yes, it totally sucks. Maybe I will have some spontaneous recovery, maybe a medication might work, but the more I read, and given my circumstances it does not look this way and Rebecca and I have to slowly come to the grips with the idea that we might have to do this again, and how do we go about doing this? The thought is exhausting for me, and although I would do it for my family, friends, and perhaps the followers of this blog (haha, love having followers very prophetic like), it is not the easiest decision to make. I should no more in the next few days. Enjoy some missing teeth photos below.

Until then,
Mitch

Although he lost this tooth a few months ago, did not want to leave Simon out!


Taken just the other day, me and Matias at the pool, missing a few teeth!

Back on the Train

Well, I hope everyone is having a great Memorial Day weekend! Cheers to all the Veterans and troops.

When I last left you all I was down in Chapel Hill recovering from the OR bronch and waiting on some test results. I was discharged late on Weds. night. Around 6pm, and I drove home eager to get back to maryland. I was actually feeling better and on the mend. The results turned out to be good. There was no current sign of any rejection! That was good news. All the cultures and tests were negative except for a positive culuture for the Rhinovirus. Basically, a common cold! Apparently, I caught a common cold a few weeks back. Makes sense, I had a runny nose, congestion etc. This was on the high dose of prednisone. However, it migrated to my lower airways. This is failry unusual and aside from new research available 5 years or so ago, they though it was impossible for the common cold to migrate to the lower airways. But new research has shown that indeed it can and cause serious problems if not addressed. However, with a virus there is not much you can really do except let it take its course, but you can make sure all other areas of the body are being treated appropriately.

So, they kept me on the antibiotics, and lower prednisone dose. I have been slowly feeling better. My chest no longer hurts when breathing. My energy and endurance is improving. I still am not quite breathing as well as I would like, but tolerating activity much better. I worked out yesterday and did very well. Again, my sats do drop when I start to really exert myself cardiovascularly, but I recover fine. I hope I will continue to improve albeit slowly.

It is just a very careful balancing game right now. My body is trying to reach a happy middle-ground with these new lungs and the immunosupression. Too much suppression and I get a cold or infection. Too little and rejection is possible. Also, my body experiences more side effect with more of the medications.

I feel much better though these last few days and hopefully will continue.

Thanks for all the calls, texts, voicemails, and a few posts. They keep me motivated. I do need to focus on the big picture and it has been great. 'Everyone dies, but not every man lives life', or something like that. Just read that the other day in a book I am reading. I have definitely been living life and enjoying it.

-Mitch

Back at UNC

I really don't keep this blog as up to date as I would like. There are a few reasons for that. The main being I simply do not enjoy writing these blog posts anymore. That is the truth. It has become a bit repetitve, frustrating, difficult etc. I have been fairly disappointed the last few weeks and I guess the last few months actually. Althought, there have been times where I have felt very good, it has been short lived. I definitely function and do much better then before transplant, however, I have in no way stabalized yet and reached a functional level that is where I want it to be. Every few weeks I deal with some setbacks. I still have issues. Not what I expected almost 9 months out. I really expected it to go two ways. Either a catastrophe or a perfect easy outcome. I have the middle ground. I will take this, don't get me wrong, but it is not what I was prepared for.

We had an incredible time on our trip to Florida. The steroid treatment for the acute rejection was not that bad or hard to deal with. In fact, I felt pretty good the whole time. I was able to do whatever I wanted for the most part. We spent the first few days at Bonita Springs with Rebecca's Mom and Peter. It was perfect. The gulf was beautiful, the weather was perfect, the boys loved swimming and playing. We then went up to visit Rebecca's Dad (Larry), and his friend Nancy. They were so hospitable. We made it to Disney for the day and the boys loved it. It was a perfect age to take them. They were able to look at the map and plan out what they wanted to do. No strollers, no complaing, they waited in lines, etc. it was perfect. I had no problems walking around the whole park never once needing a rest. I was feeling good. Thanks to Larry for taking us.

After getting back to Maryland, I slowly started to not feel that great. Just not breathing as well, not able to exercise as much. They put me on antibiotics to kind of cover me from infection, because sometimes with the high doses of steroids it can make you more susceptible to infection. However, I continued to kind of slide. Not taking as deep of breaths, and also having some pain when I take deep breaths in. So, I came down here Sunday night for an appointment on Monday, yesterday.

They took an xray. This time the left side look ok, perhaps a bit better, but now there are some new spots on the right side. So, they ordered a chest CTscan and immediately agreed another bronch (OR this time) would be appropriate. They scheduled the Bronch for that evening. That was good, no waiting around. They admitted me and took the CT scan. It looked like I had serious narrowing on the right side. So, the bronch was a great idea. I had the bronch, but not until nearly 7pm. Anyway, it turns out the airways looked "very good" according to Dr. V. (he is the other lung transplant surgeon and I will botch his name so I need to use Dr. V and look it up for another post). He said there was some junk and puss on the right side that he cleaned up and he took samples etc.

So, the team is a bit baffled again. Not really sure what is causing these nodules, not really sure why my breathing is not better. They have their ideas and theories, but all of my cultures and tests come back negative for the most part except for some lingering old CF bugs that shouldn't be that hard to treat. I am still waiting on the biopsies again. They took some more to see if any rejection is still present. They hope that just some continued antibiotics will have me feeling better and just more time and healing is needed, since I had all those narrowing and stenosis issues early on.

I am hoping they are right, or something clear shows up with a direct treatment. It is getting a bit frustrating...

I will post more when I know more.

-Mitch

Reject This

Well, perhaps it is time for this blog to get exciting again. Not in the best way possible, I'm afraid. It seems as though I am having a bout of acute rejection. Yes, this sounds bad, but perhaps it will turn out to be a good thing....

The last few weeks I have actually been feeling fairly good. My exercise tolerance was up, my energy level was fairly good, I was working hard and getting a lot accomplished and of course really thought life was about as normal as it had been in a long time. I did have this type of glass ceiling though that was bothering me. Where it seemed like exercise was not getting easier, and I could just not breakthrough and make larger gains.

The team at Chapel Hill wanted to see me last friday in clinic, since we were planning a mothers day trip this weekend (still going), and did not want to go off to chapel hill upon returning, so they requested I come down. Well, it turned out to be a good thing, diagnostic wise. It seems the chest xray on the left side looked much worse then previously. They had been watching a small white nodule area about a month or two back, which they cultured and it was basically negative, and did not change. However, this time it was much larger and diffuse on the left handside. Their first inclination was some sort of fungal or bacterial infection, since I really did not have any clinical symptoms. However, they needed another bronchoscopy to take samples and biopsies to figure out how to treat it and what it was. So, they scheduled me for a bronch on monday, the 3rd, and they also scheduled a line placement for the 4th, knowing it was a given i would need some sort of IV treatment.

I was a bit bummed out, and it was annoying to drive home friday night, and then return first thing monday morning for these procedures. My Dad came with me and did the driving. They did the Bronch, which was not an OR bronch, so you would think recover would be a bit easier, however I was really heavily sedated, and I don't remember a thing at all about monday. Some how I walked out of the hospital under my own power, went into Chiptole (becoming a tradition) ordered, took it back to my room, and ate it. The first thing I remember though is waking up at 7:30 at night on the couch in the hotel, with a 3/4 eaten burrito spread over the table. That no memory cocktail really works. I sure remember everything before, the 4 IV sticks it took to get the IV started, including a hit nerve in my hand. I hate my veins.

So, reluctantly I returned first thing tuesday morning for the line placement. Luckily, I had a Interventional Radioligist Doc, that really listened to me. I told him all about my aweful vein history. He listened!! I told him where I thought his best chance was, he listened!! I told him what the plan B option was, and get this, he listened!!! and prepped that area. Well, he was great and was able to thread the line no problem, something someone has not been able to do in 15 years! That is why I had a port for 10 and the last picc after transplant had to come out.

Anyway, finally today we got some results and news. Dr. Noone called personally and said the pathologist discovered acute rejection. They are a bit baffled why the left side is the only side that looks bad, and that a nodule is there. Mostly not due to rejection. But no two cases are really alike. The good news is most people, like I stated in previous posts do get an episode or two of acute rejection in the first year. I have avoided it so far or at least never had a positive biopsy. There is a concrete treatment for this, it is not long, about a week, of high doses of steroids. 3 days via iv, and the rest oral. It should work, and potentially I could get much better and break through that glass ceiling. So, it is a bit nice to have an actual answer with a definite solution and approach. I pick up the meds tomorrow on our way to the airport, and I hope to be in a steroid induced rage by tomorrow night. So, if you see some wild maniac running naked on the beaches of the west coast of florida looking for dead pelicans and dolphins from the BP oil spill and cursing Big Oil and all of Earth's "advances" in a hypocritical fashion, that would be me!!!

Until then, may the force be with you!

-Mitch

Down with the Skis!

Hello Everyone!!

It has been a long time since my last post. It has been something I have been meaning to do for quite some time. Obviously, with the long delay everything must be going great! For the most part they are.

On April 8th, was the 7 month mark. We made it out to Colorado in a whirlwind 6 day trip. We were so busy, but had so much fun. My lungs are improving and getting stronger, but still not quite where I want them to be. The good news is I have had no issues with infection, and the narrowing has subsided to an extent where it is barely noticeable. I do not feel like I am close to the capacity or level that I can get to, but that is perhaps a good thing, because the amount of activity I can do at this level is so much more then I could do 5-10 years ago.

First our trip. We arrived in Denver and is was a balmy 70 degrees. It was so beautiful. I will add a bunch of photos below. The mountains were all snow capped and they were calling for a big storm to hit on Thursday, the day we were heading to the mountains. We arrived Tuesday and immediately went and visited Rebecca's great friend from her youth, Jamie Brooks! Jamie and her husband Devo, and Daughter Chloe entertained us and showed us their beautiful home. Devo made us a home made meal of pasta and homemade meatballs, that were superb. Denver is a really cool city and we stayed downtown and walked around a lot. On Thursday morning we left for Vail. We left just in time, because when we got through the Eisenhower Tunnel and approached Vail pass the weather was just starting to turn. We made it to Vail around 1pm. However, my friends Nick and Missy and their young children got into a major traffic accident on I-70 at Vail Pass! You can google the headlines. It was a 40 car pile-up and they were one of the 40 cars. Luckily, they were ok. Their car almost flipped over and if not for Nick knowing the pass and being in the right spot when he topped the crest, they could have been terribly injured. They were stuck in the car for over 4 hours, while paramedics and fireman cleared the cars and helped people. Their car was damaged but drivable. By the time they arrived that night, they were in shock still but relieved. So, were we. To top off the night, we all got in the hot tub to relax, and apparently a broken beer bottle was left at the bottom of the tub. Simon was jumping up and down and sliced his foot open, right below his big toe! The day was not going well!! The weather was too bad to even drive to an emergency room, so we called a doctor on call and sent him digital picks of the foot. It probably could have used about 10 stitches, but we cleaned it out, flapped the skin over it and bandaged it up according to the Doc. He was the nicest man! We owe Dr. Gray a shout out! We did not think Simon was going to be able to ski, but if you know Simon then you know he is a tough boy and once the foot was bandaged insisted everything was ok. The next morning, I rewrapped it and he was limping, but I threw him in his ski boots and then you could not tell he was limping anymore!! So, what you can't see must be ok. Amazingly he skied both days and never complained. It snowed the whole 3 days we were there off and on. The snow was incredible. The boys got so much better at skiing. I held my own, however the new lungs were not quite ready for 11k plus feet. I had a lot of trouble keeping my SATS (blood oxygen level) up. In fact at the top, they were dropping to 78-80. I felt a little delirious, but just had to stop and regroup every 20 seconds or so. Needless to say, even my adventuresome self, did not drop back into the back bowls. I did not want to be somewhere where help was far away and Nick and Rebec seemed a bit nervous. So, Rebec and I stayed on the front of the mountain, which is still huge and skied the whole front mountain the two days. By the second day, I was acclimating a bit and my SATS were closer to 82-85 and 87-89 at the base. I think this is due to the fact that I do have some narrowing and that the airways are still healing. Also my endurance and lung capacity still needs to improve. It was worth it though, and we all had an incredible time.

We made it back to DC. and returned to school and work. Work is still very busy and it feels good to be back. I get more and more adjusted everyday. I actually just returned from Chapel Hill yesterday. I went down to have Dr. H. do a follow-up 7 month bronch. He did this on Monday and said everything looked "really good". He was pleased. He said their was a bit of narrowing which he dilated, but no need for stents, and that he thinks they will continue to heal over time and my body will keep getting stronger.

It is miraculous to think that 7 months have passed. It actually feels a lot shorter. Probably because the first 4-5 months were so focused on recovery and my complications were fairly troublesome. Although no major rejection issues or major infection issues, it still was a difficult battle, which I am still re-cooperating from. I still have soreness along the rib-line where the ribs were spread, and I still have issues with some of the medications. I am off of all antibiotics except Zithromax, which is a maintenance drug that I took pre-transplant anyway. My body continues to adjust to the immunosuppression meds and their weird side effects. I also am basically a diabetic again, which means watching my blood sugars and taking insulin. So, this I have to get under control.

Thanks for the continued support and I will try and post a bit more frequently because I know their are people who are interested and also people out there who are still waiting for a transplant or who have had one and follow the blog for information. I know I found reading other peoples stories and experiences interesting, and I still do follow other transplant blogs.

Happy Spring Everyone!!
-Mitch

Click on the photos to enlarge

Here is a view out of our Hotel window in downtown Denver. The picture does not do the mountains justice.

Jamie and Chloe

Me and Si. Having fun in Denver

Matias and Baby Tyler. They were becoming friends.

The whole Gang in Vail Village. Me, Si, Mati, Reba, Zoey, Nick, Tyler (hiding in backpack), and Missy!!

Nick and I at the top of of Vail! A personal Highlight and accomplishment!! Next year we tear up the mountain more!!

Update Time

Well, another week or so has past. The last I updated, I was doing fairly well, and continue to do so. I went down to Chapel Hill last thursday, with my Dad, for a clinic appt. and then another OR bronch on Friday. It is getting a little crazy, to keep doing these OR bronchs. I am surprised my body does not shut down more. They do take a lot out of me, though.

The clinic appt. went well. My pulmonary function tests were actually about the best they have been since transplant, so that was encouraging. When they did the OR Bronch, Dr. Haithcock was pleased with how everything looked for the most part. He did do the balloon dilation in a few spots, eventhough he said the narrowing was not nearly as obvious as before. He felt there was no need to insert any stents, so I remain stent free. I still am culturing some bugs though, and the plan is to put me back on a short course of antibiotics to keep any bad infection from developing. So, I should start that any day now.

I return again next week for a check up and hopefully that will go well. It was my nephew Cole's birthday party over the weekend and it was at one of those bounce house places. Actually, the same place we had Simon and Matias' six year old party. I felt good enough to jump and slide and climb, so that is a good sign. The lungs held up pretty well.

I still continue to be sore around my ribs and incision area. Also, when I take a deep breath in, it kind of hurts in this same area. But I am not really congested, just feel a bit weak at times. I started back up with physical therapy and with the weather getting better, hopefully I can continue this positive trend.

We still have the family trip planned to Denver in a few weeks, so that is what is on the horizon. We are really excited for that.

So, overall a slightly boring report, but that is better then an exciting report with bad news.

I'll report back soon,

-Mitch

Six Months!

Yesterday, March 8th, was the six month mark from transplant. I am happy to report that things seem to be stabilizing. When the doctors, coordinators, and others who have gone through this experience say it can take 6 months to a year for things to really stabilize, perhaps they know what they are talking about.

When I last posted about 10 days ago, I was fresh out of another OR bronch where Dr. Haithcock removed my stents, did a bit of ballooning, and basically said lets do it again in two weeks and see what it looks like.

So far so good. I have some pain and discomfort when taking deep breaths, but for the most part I have had no wheezing or narrowing feelings. I have been back to work and back to a somewhat normal routine. Work has been incredibly busy. Perhaps on sheer call volume wise, the busiest the company has ever been (thanks to Snowmageddon, or snowpacolypse, or whatever everyone is calling it). So, the timing for me being back is good. I feel as though I am contributing and almost feel back mentally. Prograf makes me a bit forgetful at times. I have heard others report this, but it is very short term stuff, like If I took my meds in the am, or what I did the day before etc. But maybe I have always been like this :).

I am heading down to Chapel Hill on thursday for a clinic appt., but also on friday Dr. Haithcock is going to do the repeat OR Bronch. Perhaps everything will look good, perhaps he will balloon dilation a bit, or maybe even use the stents again. But again symptoms wise I do not feel even close to as bad as previous bronchs. My Dad is coming with me, so hopefully we will drive back friday right after the procedure.

I can not believe it has been six months! I actually finally sat down and wrote a letter to my donor family. I wrote it the other day and sent it off to the social worker at Chapel Hill. I will eventually post it on this blog, but want to wait and see if the donor family responds. They may or may not. But for now It will remain a personal letter to them. It was not hard to write, it only took 10 minutes , which shocked Rebecca. But, I have been thinking about what to say for six months, so it just flowed out. I feel a bit of anticipation again, almost like waiting for the lung call. Like I wonder when they will receive the letter and what their reaction might be? It is a weird feeling.

I restarted physical therapy up here in Bethesda at Suburban Hospital, which is close to my office. I really need to start challenging myself again and get these lungs working the best they can. Rebecca, myself and the boys plan to go to Denver for Spring Break week here at the end of the month beginning of April. We both have close friends there (Nick and Jamie), whom we have not visited since they have had their children and we cant wait to see them. The plan is to visit Jamie and her family first and then meet Nick up at Vail!! That will be a big test for these new lungs and how I am doing. Breathing at 8,000 feet!! But if I can, I will find a way, and I will snap a picture of me launching off of the back bowls into some fresh powder! That would be a major accomplishment!

Lets see what happens the next few weeks.

I will keep you all posted. Thanks for all the birthday wishes as well!!

-Mitch

Special Shout-Out To Cristin Caine

Life is hectic and busy. Everyone knows that. It seems everyone is dealing with issues whether they are physical and/or mental. Yet, they still find the time to reach out and encourage me. I remember as a child being so care free about life and not having a worry in the world, thanks to my parents. Hopefully, my kids feel that way. This post though is to recognize all of you and especially one person. Everyone has been so encouraging and so hopeful for my positive outcome. They may not post messages, but I hear from people I run into how much they love reading my updates, or through my mom, if she has bumped into someone in her office everyone is genuinely concerned about me. This keeps me going.

I want to personally thank everyone for their support. There are so many charities and organizations that people can donate to, I understand that. It amazes me sometimes that people choose Cystic Fibrosis to support despite any direct link to the disease, ie. immediate family member, etc. CF is a unique disease in that real progress has and is being made and now with lung transplant life expectancy is even higher! No genetic disease has ever really been cured, but what the CF foundation and researchers are doing is very close to a cure. Allowing children born with what was once a death sentence, into now the possibility and the probability of a somewhat "normal" life. And perhaps they will actually find that "cure".

Cristin McIntyre Caine is a perfect example of this amazing testament to the beauty of the human spirit. I have known the Mcintyre family since I was a kid and through friendship they have always been involved with helping raising money for CF. Cristin even worked for the foundation as a fundraiser out of college. Last saturday night she hosted a "Girls Night Out" type of event, where through her and her friends hardwork had about 100 or so items donated for auction. She did this on her own accord with no outside help from the foundation. It was just an event that through her genuine kindness wanted to do! She raised over $6,000!!! for Cystic Fibrosis. She, her mom, sister, and friends, donated their time and hard-work to put this event together. I am sure they have things in their own life that they could have easily not have had time to do something like this. The event was such a success and so well run it just blows me away the kindness that people have.

Cristin is Amazing!! Thank you so much for your friendship and support over the years. People like you are what life is all about.

-Mitch