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