Tuesday, August 25, 2009

Reflections on Today : LIVESTRONG

Today, though indescribable, could, as Ian commented on the last post (who has been through this and Is our inspiration) be best described as a roller coaster; a roller coaster which climbs powerfully and methodically to the top of its peak, postured in its supreme elation, with hair-on-end fear, and a view of auspicious hopes, and then comes to a screeching halt without plummeting over the precipice into sublime adrenaline gluttony. It buries its hopes and visions, of easier breath, breathing with ease, and consequently good health, and goes back to wait for the next chance. A next chance, which will hopefully carry it to meet and conquer its hopes, dreams, and future which were deemed impossible.

Not surprisingly, in a lot of ways the lung transplant feels like that, a rebirth or second chance. There is a feeling of gratitude, of awe, of hope for something better. What a gift is being offered from the family/life of the donor! When the call came today, surprisingly to us, Mitch and I thought so much about the donor, and felt so sad for his life, for his family, for his/their loss. And, in turn, were so grateful, so awestruck, so incredibly optimistic about Mitch's possibility to keep on living. It is a strange philosophical and existential quagmire.

It was just an ordinary turned extraordinary day. Mitch and I were frazzled, stressed! We were shopping with Simon and Matias for a few long hours. Arguing with them, arguing with each other about silly things- which shoes they should get for school, which shirts, etc. We had spent 2 sleepless nights in a hotel room with the kids, after relocating to Chapel Hill on Sunday. We are not moving into the condo we are staying at while we are here until Monday and the boys start kindergarten tomorrow. We were having one of those bouts of hopelessness and anxious hours and then the call came, and everything changed into crystal-clear clarity.

Our perspectives altered immediately.

Our faithful loved ones who had been waiting for these moments, responded. Lyzka, Lois, Billy, and Gayle began to make their ways here as fastly and as furiously as they possibly could. We felt a ripple of love and support from texting and phoning that immediately began. It was an exciting few hours.

And..I/We cannot wait to feel that way, again, Very Soon.

False Alarm!!!

FALSE ALARM... This sucks but the team just came in and the last bit of blood work on the donor was no good. Apparently the donor had a blood infection. Everything happens for a reason, but no lungs for me today. I am in the hospital room all ready to go. But now, I will go back to waiting in Chapel Hill....

THE CALL CAME!!!

Timing is everything... We moved down here Sunday and the call just Came! I AM Getting new Lungs Tonight! Reba or me will post more soon. We don't know much.

Sunday, August 16, 2009

At Least I got a grilled cheese and a veggie burritto...

Well, we made it to the show. I have been so looking forward to this show as sort of a last hoorah before the transplant, that I was counting down the days. The collapsed lung put it in jeopardy, but things worked out and we made it. We had incredible seats and it was great to relive alot of the memories Rebecca and I have from so many shows over the years. The only problem was, the song choices for the evening was a surprising disappointment. It was one of the most bizarre setlists ever, and none of the really emotional meaningful songs that I was longing to hear were played. The playing was done well and we danced and enjoyed ourselves, but any pre-transplant motivational epic shows was just not meant to be.

Well, perhaps a lesson was learned. A good dose of reality. Things are not always what you hope for or expect. Perhaps if I take away anything it was that I now have to get to more shows because that can certainly not be my last one and I will go on record now and say it will definitely not be my last...Bring On The Tranpsplant!! Lets get it over with so Rebecca and I can groove again at another show!

Friday, August 14, 2009

Mitch Home

Mitch is home and resting in his bed. The pain is much better now that the tube is gone. We plan to go to the show tomorrow; the Phish show, of course. Thanks to all the well wishes and positive energy from all of you we made it through this bump in the road.
We hope the phone rings soon so Mitch can beat me in that future mini-triathlon he is bragging about.

Thursday, August 13, 2009

Here is an update from the hospital. I am doing ok. They got my lung reinflated but the chest tube has to stay in. Hopefully they can pull it tomorrow am. It is excruciatingly painful, and that is with morphine! Not looking forward to the transplant when I will have four of these. Speaking of which, UNC called me today. It seems last night they had the first ab blood type offer for lungs and I popped up 2nd on the list. They assume the number one person took them. So, unless someone with a higher score gets listed I am next on the list for AB lungs. And this was for this whole side of the country, not just the UNC region. So, Becky wanted an update on my condition in case the call comes. Of course who knows how long that still could be...

Wednesday, August 12, 2009

Pneumothorax (collapsed lung) Procedure Update

Mitch is back in his room. He is in a lot of pain. The procedure went well.
The tube in his lung is attached to this chest drainage box called a pleurovac (or something like that) and has a low suction to help his lung to stay inflated by sucking air out of the pleural space outside the lung, creating a vacuum. There is leakage, a hole, which must repair itself. It repairs itself only when inflated by resting on the upper pleural wall.
They will take x-rays tonight and often and see how it looks, if its staying inflated, etc. then they can stop suction, clamp tube, remove tube. baby steps...
Mitch reports being in excruciating pain as there is a tube sticking out of his chest; though naturally, he is breathing better. I hope he can sleep tonight.
Mitch is having the procedure now. 310pm.

Tuesday, August 11, 2009

Bump in the Road

The past 5 days Mitch has had this sensation when he leans back while sitting or if he lies on his back- pain and a pulsating feeling- his chest was literally jumping under your hand, on his left side, a little lower than where his heart is located.

He requested a chest CT at Johns Hopkins Hospital (JHH) and unfortunately it's not "nothing" as we blindly hoped, but he has a partial collapsed lung. He has to have a surgery tomorrow (hopefully tomorrow- Hopkins is always running behind) where they insert a small tube into the lung and inflate it, then leave the tube in for 24 hours to monitor and make sure it does not collapse again.

Becky, the patient care coordinator at UNC-Chapel Hill (UNC-CH), ok' ed the plan and procedure on the phone to Mitch and she made sure to get the hospital's number in case the call comes tonight- She said there has been an eerie lull in calls for lung donors...not in 3 weeks.

So needless to say, Mitch is in the hospital again, at JHH- where he did NOT expect to be again after his release last month- Plus, we have 3rd row center seats to the Phish show on Saturday which he has been obsessively thinking about for months- our first show since they got back together in March. He really hopes to be able to go, but the doctors are not sure if it will work out by Saturday.

I will update as things progress or change...

Friday, August 7, 2009

The Waiting..

'You take it on faith, you take it to the heart, the waiting is the hardest part'-Tom Petty

Well, week 2 is coming to a close. I had a few nervous phone calls. But for the most part, am not overly anxious or paranoid that the phone is going to ring. I try and go about my day with a mixture of some work issues, spending more time with the boys, and trying to get all the things finalized with our relocation. It has been very hard to concentrate on things though. At least I have a great excuse now when I forget to do something for Reba. Don't know how many more times I can go to that well though.

I want to thank everyone who has reached out and given Rebecca and I warm wishes. It really feels good to know everyone cares.

I spent a bit of time trying to research the Angel Flight pilots who volunteered to fly me down the instant the call comes. 11 Pilots donated their time, aircraft, and piloting skills for my transplant journey. That says a lot and makes me feel really good knowing there are a lot of decent people left in this world. That is no small contribution. The pilots have to fund the trip on their own dime!! They can write it off, but still. With 11 pilots lined up the chances of one of them being available, regardless of the time, is practically guaranteed.

However, we finally finalized the details on the place we will be living at in Chapel Hill. We can't move in until August 31st, but the new plan as of now, is to relocate down there if they have not called me before the end of the month. School starts down there August 27th for Kindergarten with orientation on the 25th or 26th, so we would go down then and stay somewhere until the 31st. If I am still not called going into September the time away will be like a sabbatical I guess. It might be really good for Rebec and I to get away. We can use the time to really concentrate on staying healthy and getting mentally prepared for the transplant. More to follow...

Sunday, August 2, 2009

Why UNC-Chapel Hill?

You may wonder why we are travelling down to Chapel Hill, North Carolina for the lung transplant. And if you don't..then stop reading!

As most of you know Mitch has been followed by Dr. Mike Boyle of the adult Cystic Fibrosis (CF) clinic at Johns Hopkins Hospital for the past 10 years, approximately. Dr Mike Boyle and the CF team have been amazing both clinically and in their "bedside manner." I have the utmost respect for Mike Boyle, as he has always been professional, accountable, and approachable; sharing his personal cell phone number and email, with Mitch and I, and always providing the highest quality care to deal with the complications of CF, in all its complexity, over the years. So, because of our relationship with Hopkins and Dr. Boyle and the CF team at Hopkins, it made the decision very difficult- not only WHEN (because you can't wait until you are on death's door and hope to have success) but WHERE to have the transplant?

Mitch's dear friend, Ian, who also has CF and is from the area- (Rockville, MD), had a lung transplant at UNC- Chapel Hill 15 years ago. He has been the inspiration and hope for the procedure from the first words in my recollected consciousness Mitch spoke about the transplant to me because of his great success. I know sometimes it is hard to fathom the seriousness of the transplant but back than, the success rate for a lung transplant was much lower than it is now. It was like 50% chance of one year survival (it is now 90%), which is why it was so scary to consider and Ian's success that much more important to be aware of. Because Mitch had another friend, Charlie, who was not lucky with his transplant.

When Mitch and I first moved up here in 1998, we saw Ian at Cameron Seafood's on Rockville Pike and he cornered Mitch and with grave seriousness told him to "go down the Chapel Hill right away and get listed" and "that it was the best decision he had ever made", etc. Mitch, at the time, in retrospect, was much healthier than he is now but had begun to have bouts of hemoptysis (bleeding lungs) -which, by the way, is a very scary thing! - I remember how weak I was back then, in respect to dealing with Mitch's illness and the future-...and when Ian was talking about Mitch getting lung a transplant- I suddenly felt very dizzy and ill and had to go sit down in the car. I used to get physically panicky and faint when thinking about the transplant and his illness. I have become much stronger- but it did not come naturally, that's for sure.

Mitch and I visited Chapel Hill over the years. We went together in 1998, probably shortly after seeing Ian, and checked it out, talked to Dr Yankaskis who was a very respected Pulmonologist at UNC. Mitch was not ready at the time though. A few years later in May or June of 2000, he went again with his brother, Terry, right before I gave birth to Simon and Matias, and took all the tests in order to get listed. But they have since changed the way transplants are done- using a Lung Allocation Score (LAS) rather than waiting on a list for sometimes, years. Since Mitch was not ready for the transplant yet, he went inactive on the list. Over the past 6 years, he has gone down about once a year to check in and let them know he was still here- wanting them to know who he was for when the time came.

About 2 years ago, some of the docs at Hopkins began mentioning he should begin thinking about getting a transplant. Hopkins lung transplant program started to become much more competitive and successful with the addition of Ashish Shah, MD a badass cardio-thoracic surgeon from Duke. see resume: http://www.hopkinsmedicine.org/transplant/About/Shah.html
We started to change our mind and consider Hopkins as a serious candidate for the surgery. When Mitch and I started interviewing Hopkins and Chapel Hill to determine which place to have it done, we were really torn. The relationship with Hopkins and his docs and their concern over logistics- all the follow-ups and bouts of acute rejection started to really sway our choice. Hopkins is one hour away and Chapel Hill is 5 hours- big difference! Also when Ashish came into Mitch's hospital room and told him that he would find the most pristine lungs for Mitch and be at his beck and call after the procedure, well, this was promising and persuasive. ..he had such confidence in his skills.
However, the surgeon and the docs, are a large part but not all aspects of the transplant process. The other elements: the rehabilitation, the nursing staff, the function of the transplant wing, and the patient care coordinator are also very important. Chapel Hill won hands down in all these aspects. When we met with Becky, the patient care coordinator last spring at Chapel Hill, we were totally at ease. She is brilliant in her knowledge of CF and medicine at large, totally precise in her speaking and confident, optimistic, and also personable. She made us feel like she was totally going to take care of not only making sure Mitch was getting the best medical care, but that his needs would be met- and the needs of his family, and other aspects as well. She understood that this process required the backing of a network of support- that it was not just Mitch getting a procedure, but Mitch's whole family going through something HUGE.

Chapel Hill is selective and limited in how many transplants they do a year. They do about 15 a year, whereas hospitals such as Duke and Hopkins do as many as they can. Chapel Hill specializes in Cystic Fibrosis has specific experience in CF patients following the lung transplant. Chapel Hill has one of the oldest lung transplant programs in the country and their retired surgeon, Thomas Egan MD who worked at the flagship lung transplant hospital in North America- in Toronto-and is now a consultant for the surgical program and primarily an Academic at UNC med school (I believe), He trained the surgeon Ben Haithcock who will be the chief surgeon for Mitch's transplant surgery.

We met Dr Haithcock a few weeks ago when we went down to Chapel Hill a few weeks ago. He is not as impressive on paper as Dr Shah-see resume http://www.med.unc.edu/ct/files/Haithcock%20%20CV%2011-08.pdf see resume, but apparently his manual and technical skills as a surgeon are amazing. He performs the 6-10 hour surgery all by himself (he told us) and he has the fastest speed for putting the new lungs in- which is apparently very important because of ischemia, blood supply to the organ. The lungs only have 2-4 hours to be outside of the body so they must be connected quickly. Some organs can live outside the body much longer. It was cool meeting Ben, he was humble, for a surgeon, but obviously brilliant.

The lung transplant program has its own floor in the hospital. It is clean and quiet, the rehab, PT room is big and very impressive. The woman who heads the PT program is young, about our age, is funny, energetic, and strong. She is an example of the sample of health care providers that are drawn to and employed by the hospital. Because it is a college town, the town's vibe is youthful, enthusiastic, and optimistic.

So finally, from a holistic perspective, the setting of Chapel Hill also made it better choice over Hopkins. If you have ever been to Johns Hopkins Hospital, the last thing you would want to do, is step out of the hospital for a leisurely walk with your new lungs -it's in the slummy section of downtown Baltimore. Whereas Chapel Hill is a cute little hilly college town which reminded us of Gainesville, Fl. Chapel Hill is the perfect place to get a new lease on life, we decided.

Logistically, it is harder, but we hope this can and will all be worked out.

We will live there for at least 12 weeks post-surgery for rehab. Mitch will be in the hospital probably a minimum of 14 days after the procedure and than rehab is 3 times a week. Plus, there is a lot of acute rejection that occurs at the beginning so the anti-rejection drugs need to be closely monitored.

Here is a link to UNC- Chapel Hill explaining about Lung transplant and you can take a look at their program.
http://www.med.unc.edu/cystfib/trnsplnt.htm