Quick Update: 10 Days Post- Transplant #2

The past two days have been plentiful in the sense that Mitch has had three procedures.
Yesterday morning, he had an MRI of his brain and spinal column, to look for causes of the neurological symptoms he has been having. No definitive word on that test yet. But hypotheses are that the symptoms are just an injury to the brachial plexus during surgery and symptoms associated with the meds he is taking.

Then, he had a procedure in radiology, based on the results from Friday's CT scan of his abdomen where they went in and took out a clump of old blood and inserted a new chest tube on the left side to lead that area to drain. The CT scan showed that he had pockets of fluid and blood on the left back area, that was preventing the left lung from having room to inspire.
The right lung looks groovy and is doing its thing.

The third procedure was this morning (Sunday) and was another operating room bronchoscopy. They went in and did lavage cleaning suctioning on the left, again hoping to help it open- it looked a little collapsed on the scan and xray.

They say this all normal routine maintenance stuff and not to be worried- so don't worry, people! Mitch is going to be good, hopefully soon.

Mitch's only brother, Terry, came to see him this weekend for a few shorts visits with his wife, Tracy.

8 days Post- Transplant (2)

Sorry for the break! Reba here, I went to the NJ shore for a few days where our sons were staying with my (almost) entire maternal family t0 help celebrate their 7th birthday on Tuesday. We got lots of hugs and love from my aunts, uncles, cousins, brother, and mom.
It was very replenishing for my spirit to see everybody in a place I spent many summers growing up- LBI, and to see Simon and Matias having fun and being loved by my family. But, I was anxious being far from Mitch and not seeing him for a few days. So, I am glad to be back with him now.
Gayle held up the fort at the hospital with Mitch. He did well this week, walking more, got a chest tube out, had a bronch done.
Today, though, he is not so good. He is feeling overall bad- not breathing as well- the cultures they took showed growth of infection growing and some junk in the lungs. His xray looked different and his white blood cell count is up, so they did a CT scan of the thoracic region/abdomen to see if there is anything to pay attention to, learn about, and treat.
He is tired, has bad pain in lower abdomen, more pain in incision/sternum area because epidural is out, and has different pains and abnormalities that do not permit much sleeping/rest.
He had a visit from the neurologists who did a full exam in response to possible nerve damage of brachial plexus during surgery causing numbness and weakness in his right bicep, arm, and hand. They will do a more thorough testing in about a week.
More information when available... Mitch says he will try and blog tomorrow or Sunday.
Thank you for your caring, kind emails, and messages.

0 Out of ICU. Amazing considering what happened. This is Mitch. First thanks for all the comments. Amazing. I'm bruised and battered but made it! Happy 7t

0 h bday to the boys tomorrow. Full update soon. Love, Mitch

Day 3 Post- Transplant (2)

First Walk: One lap Around CTICU

Mitch said the walk felt easier than his first walk after the first transplant. His legs felt weak though. He had not been able to walk in about 10-11 days, so weakness was expected. The doctors are pleased with everything so far. Mitch got an epidural for the pain.

Day 2 Post-Transplant (2)

Refreshing Day Two (2)

Mitch's exploratory surgery last night went well and they found the "leak", as I said.

He was not bleeding when we went in this am, and was finally more awake. He actually, and thankfully, did not realize he had even had the transplant yet--- he seemed confused and asked for, or I intuited, the "big picture" explanation and when I said, " You know you had the second transplant"- he shook his head no, and seemed relieved.

The whole day was working towards getting off the ventilator- which he finally did at about 3pm, or 230pm. Interestingly, towards the end, a huge psychological dependence on oxygen surfaced- which was definitely understood because of the incredible dependence that developed the last two-three weeks that Mitch lived prior to second transplant. That dependence on oxygen was felt also by myself- I was always seeking another source, more powerful source, to keep him alive that last week- but today; Today, he just needed security- He got a mask and an hour later, the nasal cannula.

He was understandingly feeling very uncomfortable- already surfacing were the pains of double/back to back surgeries-

Gayle (his beloved mother and I) got to be fantastically gleeful in the circumstance of our new familiar position as massage therapist, scratcher, nurse, respiratory therapist, etc. - we high-fived and giggled in the memory and present fortunate circumstance and are ultimately and forever grateful at the opportunity at a second chance... thank you, UNC and Dr Haithcock!!! Beyond thank you...

7-22-2010- I Day Post- Transplant (2)

Update:

I did not see Mitch until about 330am this morning after his transplant surgery. He was unconscious-
He was being filled with bags and bags of transfused blood, as he had lost a lot of blood during the surgery and continued to lose blood.

He lost a lot of blood because of it being a second transplant surgery and of all the appendages and scar tissue.

The next morning, he was somewhat conscious, yet agitated and frustrated because he was trying to communicate with a giant breathing tube in his mouth.
He had been continuing to lose about 220cc's of blood per hour so they decided to open him up again and look and see if they could locate and seal off the "leak".

So Dr H did exploratory surgery to locate the source, found it, and sealed it up.

Dr H says everything is ok. His vital signs are OK. More tomorrow...

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!