Monday, November 30, 2009

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

Friday, November 20, 2009

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

Tuesday, November 17, 2009

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!!!!

Monday, November 16, 2009

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, November 13, 2009

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

Monday, November 9, 2009

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

Sunday, November 8, 2009

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

Tuesday, November 3, 2009

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