|Mitch and Randy McGowan-Claytons's Dad|
Thursday, November 22, 2012
Sunday, May 22, 2011
|“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”|
At this 10 month mark I can not express enough my gratitude to my donor and his family for that spark I needed to light my fire again. I spoke at the CF walk yesterday, which coincided with my 10 month anniversary of new lungs. It was a perfect day and we had a good turnout. I encouraged everyone that with the current research going on today with CF, that children born with the disease today or even those young still will have a treatment that prevents them from needing a lung transplant and more importantly allows them to breathe normally. I actually think that this is possible in the future. Whether it be 2 years, 5, or 20. It will happen. There are just too many advancements being made and too many amazing people working on it. So, thanks to everyone for your continued support.
Here is a photo from the walk yesterday of my good friend Jess Gordon who I met in Nursery School!-
photo by Matias Greenberg
Saturday, April 9, 2011
I hate using my blog for eulogies, but this one is necessary and also the hardest for me. I had not met Deb yet. Although we had plans to sync up at a set break during a Phish show, this summer. Sharing in the anitcipation of that 'Second Set'. I am broken to tell you all that Deb's Second Set has ended. I am sure she is dancing away and using her energy celebrating the encore of her life.
Deb, an incredibly beautiful woman both inside and outside, passed away from Cystic Fibrosis and post 3 plus years from a double-lung transplant. She was a vibrant friendly soul. Just from a few emails and facebook messages we were like long lost brother and sister. That may sound foolish, but we shared many characteristics about our lives, interests, hopes, fears, and struggles. CF people have an unspoken bond. Only we know how we struggle, how we stay positive, how we go about life sucking every drop of meaning from the marrow of this existence. However our bond went a step further.
Both Deb and myself were Phish heads. Not just casual observers of the band, but truly into the music. The vibration of life that the band put forth each and every time they take the stage, we understood. We commented to eachother that the likliehood of finding another person with Cystic Fibrosis who had undergone a double-lung transplant, but also was hooked (so to say), by Phish is probably unlikely.
When I was going through my second transplant I would find emails from her with links to downloads of the Fall tour. We talked about how important the music was to us. How it represented freedom and made us happy. If only for a few hours.
Just a month ago we were talking about diabetic pumps. She was excited to get hers. She was posting messages on my wall encouraging me to look into them. We were also talking music and how Phish just announced their summer tour, figuring out which shows we were going to. She also had plans to go to the Furthur shows in Atlanta this weekend and some Panic shows. She was really excited to hook up with her friends and celebrate her 30th birthday with some legendary music! Our last correspondence was just a little over a week ago and I knew she was struggling but tried to remain positive. I want to share her message from a month ago.
'I'm excited to be on this side of the country, bc I can get in several shows if I go for it. I'm planning on going to Furthur at the Fox in Atlanta the weekend of my 30th birthday and I'm SO excited to see this line up. I hear they are amazing.' DC-March 2011.
On tuesday, while I was skiing in her homestate of Colorado, she passed away. I'm glad I was out in the mountains that day enjoying life and the beauty of nature. I don't understand anything except how to enjoy this life with family and friends. Something I know Deb did to her fullest.
Thursday, March 10, 2011
On March 4th, 2011, I celebrated my 38th birthday! For the first time in my lifetime I officially surpassed the median Age of survival for a person with Cystic Fibrosis, which currently stands at 37.4 in the US. I obviously would not have done this without the support of multitudes of people. Family, friends, doctors, researchers, nurses, therapists, strangers, Surgeons, and of course 2 Donors and their families! It is overwhelming to think about the web of life that is weaved into my existence. Like a snowflake, an infinite number of possibilities created. But to me, I have always lived my life beating to a drum that has kept me on a clear path. A higher power, beyond what I can comprehend, beating at the right frequency.
There are still plenty of children who never live to be adolescents or adults. Many Adults who perish right when their life is at its cusp! But real progress is being made. The median age is also skewed a bit because of the multitudes of benign or less severe mutations being discovered on the defective chromosome. Some of these people are not even diagnosed until their 40's or 50's. So, it is important that we don't get too excited by the number of 37, or when it jumps to 38 or 39, which it probably will shortly do. We need to focus on the children and the medications and research being developed to prolong their lives.
I am going to keep this post short for now, so everyone can relish in the beauty of the number 38!
Monday, February 7, 2011
Tuesday, January 25, 2011
Well it has been far to long since I last posted. I first wish everyone a happy and of course healthy New Year.
Last Friday was my 6 month mark post transplant!! Things are remarkably different this time around. The new lungs continue to feel incredibly strong. Breathing never being an issue or even really crossing my mind. I battle with some annoying secondary problems still, such as the numbness and pain in my feet, adjusting still to the medications, and some lingering soreness and discomfort still in my chest area. I assume that is somewhat to be expected as I was ripped apart twice
and re-wired shut again. My ribs are a bit mis-aligned
it feels and those chest wall muscles were practically destroyed. They are healing though.
We were able to take that long awaited trip to Costa Rica that Rebecca had reserved nearly two years ago now and the owner of the company was nice enough to postpone until I was ready. We had an amazing time. The country is absolutely gorgeous. Stunning lush mountains, rain and cloud forests, waterfalls, beautiful yet rugged beaches, surfers paradise with a perfect 4-6 foot break every 20 seconds. Multitudes of exotic animals in the wild. We travelled with 3 other families we met there. They all had kids ranging from 5-10 and soon the kids were inseparable. They did everything with us, I was so proud of them. Zip-lining through the cloud forest canopy 100 ft above the ground. White water rafting. Hiking, swimming, tracking animals, etc. An amazing time. I appreciated every second of the trip and was thankful and lucky to be in such an amazing country with my family.
When I was getting ready for my first transplant I had this idealistic and ambitious vision of how it would go. Most people do. After the transplant, I thought my setbacks would subside and I still carried these hopes of being able to accomplish Extraordinary things. For instance, being somewhat of an athlete as a child and young adult, I felt like I wanted to return to form and even excel further. I felt as though the only way to validate my new lease on life was to prove to the world and myself that I could accomplish some amazing feet. Like running a marathon, or doing a mini-triathlon. Well we all know what happened with the first transplant. Staring death in the face and being lucky enough for the conditions to allow a second transplant my outlook has somewhat changed.
I don't need to accomplish anything measurable. Sure it would be nice, and might very well occur, but what I learned is that the greatest accomplishment of all is living and breathing without suffering anymore. It allows me to appreciate the smallest of things this world and universe offer. A smile on a kids face in Costa Rica when we gave him a new soccer ball. Matias sitting next to me on the couch and probably without any thought on his part, putting his arm around me. The smoky breath coming out of my mouth when it was 10 degrees yesterday. Me not wanting the vapors to dissipate as each one made me think about my donor. It was like he was there......
The world is crazy right now, I know of 4 CF friends who have lost their battle in the last month. Nothing is guaranteed. As cliche as it is, all that matters is now. And now is perhaps the smallest yet heaviest thing in this universe.
PS: I have attached another link on the tool bar to right with some of the Costa Rica highlight photos. Maybe a video or two as well Zip-lining. Below is our whole group and awesome guide (Onik) all geared up.
Friday, December 24, 2010
I want to thank so many people who have privately emailed me, messaged me on facebook, and sent me text messages regarding my last post. I am glad it moved so many people. If inclined, please also post a short little comment in the comments section below. Whether positive or negative, I really don't mind. You all know me by now. It is just this is the only historical record and "journal" I am keeping. It is nice to have people's reactions and comments on here to provide feedback for me, my family, and others just glancing by. In ten years, I want everyone to go back and read this and be able to read everything.
I hope everyone is having a great holiday season and everyone has an incredible year next year. I am signing off for now, as we travel once again on a trip we have had planned now for two years but was obviously postponed due to health. I started to decline very quickly shortly after reserving this eco-family adventure to Costa Rica almost 2 years ago. The company has been so patient with us until my health improved. The doctors gave us the final OK a few weeks ago and re-confirmed this on this past Wednesday. We are off tomorrow!!
Thursday, December 23, 2010
It was a beautiful thoughtful letter and you could tell throughout how thankful and happy the mother was that she received word from me. Her emotion and sadness for the loss of her son was conveyed throughout and my letter helped her cope. I will not give any details beyond this of the letter however, I decided to share the letter I wrote to the donor family, it is below. I have always tried to be as open and honest about this whole process. I never posted my first letter to the family because I never received a response. I felt not knowing them I would maintain all privacy. So I upheld the same decision for this second transplant. After receiving this response, I felt OK about posting my original letter. If over time I have the chance or desire to communicate with this donor family further and they approve posting their original response, I will.
One thing I want to confess to. I made the decision to withhold the fact that this was my second transplant. I did this for a few reasons. One, I felt opening up the fact I needed a second transplant would have left them with numerous questions, such as, what happened to the first? Why did I need a second one? Will their loved ones lungs work on me? etc. It was important that the specialness and importance of their decision was not compromised by questions at this time. Two, I wanted the letter to not be distracted with all the medical details I would have felt necessary to disclose on why the second set was needed. I wanted the letter to focus on my thankfulness, extreme gratitude, and how it changed my life. So, I took elements of my life leading up to my first transplant 10 months earlier, and the short 1 month before the second transplant when my health became so incredibly critical and combined the two. I do plan on my follow-up letter to explain to the family that this was my second transplant and just how critical it was and how incredibly different and positive it has been compared to the first. With that said, here is the letter I wrote to the family of Clayton who was 19 years old and died way before his time....
Thank You. On July 21, 2010 our lives changed forever. I am the recipient of your family member’s lungs. Without this remarkable gift and complete selfless act of generosity I would not be alive today. There are no words possible that I will be able to convey to you that would quell your grief or make the pain of losing someone special subside. I cannot fathom what your family has and is enduring. However, I can tell you that your loved one is a true hero. One of indescribable proportions. He/She saved the life of a father, devout husband, son, grandson, brother, friend, and human being from dying from Cystic Fibrosis.
My name is Mitch, and I was diagnosed with Cystic Fibrosis at birth. CF is a genetic disease that mainly affects the lungs and digestive system. Despite a relatively healthy childhood, my lungs started to deteriorate in my teens. I am now 37. I was able to live a fairly normal life though while battling this disease. The last 5-10 years my health significantly deteriorated. It was a slow progression though with steady trips to the hospital however, I was able to progress in life somewhat normally, ie. I married my wife Rebecca, who I met in college over 15 years ago now and we have two beautiful twin seven year old boys, who are my inspiration, I have a career, etc. Although a struggle, I always maintained the mentality that I could conquer this disease. Well, last spring and specifically into the summer my health took a quick and sudden downturn. Transplant had been discussed years ago, but I remained too healthy. Over the continued years, I was on oxygen, I had suffered numerous infections, collapsed lungs, and bleeding into my lungs. I never would give up. Finally, knowing without a transplant I was going to die, I was listed on July 13th. Transplant was my only option. I continued to decline extremely rapidly, and on the night of July 20th, on numerous breathing machines and the maximum amount of oxygen, hardly able to move anymore I turned to my wife and told her, “I don't think I can go on too much longer”. Just uttering those words was extremely hard for someone that had fought this disease my whole life. My wife had a simple answer. 'It will be ok.' I made it through the night, with that comfort of knowing everything was ok. At 8am, my nurse came running into my room and told me and my family that they believed a donor was available. My life was saved.
I don't remember much immediately after the transplant, but I wanted to share one story with you. The procedure, according to my incredible surgeon, went smoothly and he told my wife he put a beautifully perfect set of new lungs into my body after spending hours removing my current scarred lungs. The operation finished at 1am on the 22nd, I did have some small complications requiring some more surgery that day to stop bleeding, but by 8am on the 23rd, I was fairly coherent and strong enough for them to pull my breathing tube. This was an incredibly fast time; some people remain on the vent for days. When they pulled the breathing tube I remember taking a huge deep breath in with my own power. Something I had not done for close to 10 years! It was as if these new lungs had awakened and my whole body relaxed. It was indescribable. I felt free, alive, thankful, and was ready for the process of recovery. This perhaps is one of the hardest things because lung transplant is one of the most difficult types of transplant to perform and really hard on one’s body. However, the powerful essence of that first breath, on my own, made me feel like recovery would be easy. I was motivated. I spent the next 3 weeks in the hospital slowly healing, walking, and improving. Each day walking more, the lungs wanting to breathe deeper and deeper. Everyday though, I think about my donor and his/her spirit. It is impossible not to as it is my breath. It continually motivates me to succeed and continue to recover. I have had zero bouts of rejection, which is rare and a good scenario. I have had other complications, however my doctors are confident that things will continue to improve. I continue with Rehabilitation trying to get stronger every day. I will never give up.
I wanted to write to you all ever since I first received my transplant, but at the same time felt like I needed time to recover and regroup. The recovery process is difficult and I battle with setbacks every few weeks, but I am very inspired and motivated to succeed. The lungs in my body feel strong and I can already do so many things that I could not do years ago. I want to personally thank you all from the deepest parts of my being for the gift of life that was provided to me. Just as I won't be able to understand the grief of the loss you experienced, I cannot begin to describe the amount of love, happiness, and gratitude my family and friends feel for my life continuing. I hope you all can share in some of this joy that your loved one saved a life and is a hero to so many people.
If you all are comfortable sharing, I would like to know a little about the type of person your loved one was who donated their lungs to me. What they enjoyed to do, or their hobbies, interests etc. I don't want any of my life to be wasted given this second chance and if I can honor their memory in any way by knowing them, or contributing to their passions or interests, it will help me in a way say thank you and carry on their spirit not only with my breath but also in my actions.
With deepest regards and love,
Double-lung Transplant 07/21/2010 due to end-stage Cystic Fibrosis and OB
Friday, December 10, 2010
Everything went well. My breathing tests continue to slowly improve. Which is the best way for them to go. Not to go too much into the numbers, as it would cause for more detailed explanation, but before tranpslant one of the main numbers they look at is your FEV1. This is how forcefully one can blow out air in one second after breathing in their deepest breath. It is a good measure of how strong the lungs are, how diseased they may be due to narrowing or blockage, and also capacity. Well before transplant my FEV1 had dipped to 18% on December 1st, they were 63%. Hopefully they will continue to go up to the 80s or 90s. Who knows. Lung size plays a small part. Because the number is based on someone my height etc. If donor was shorter or smaller then the percentage is skewed down a bit.
We are taking the next few weeks to do a lot of travelling! We are currently in Florida visiting many friends and family. We spent a week in Key West as well. We rode our bikes all through the old city and it was a breeze. I have another follow up in Chapel Hill on the 22nd.
Sunday, November 21, 2010
Kitty Hawk Nov. 2010. The pictured hill and memorial behind us is discussed in post. Cold this day..50's with a 35mph wind.
It has been awhile since my last post. In the lung transplant blog world, that means one of two things. Either A) something bad has happened and no one has thought about posting, or B) Things have been so good, blogging seems tedious and takes up time for living. Well for me the answer has been B!
Today marks my 4 month anniversary of these stellar new lungs! My breathing improves everyday. My body is still adjusting to the new lungs, in a way. As I am sure they were not the same size as my old lungs and my new old lungs (I never know how to refer to my first transplants lungs). So, when I do some exercise and do some seriously heavy breathing I get sore in my lower frontal rib cage area. Like a muscle soreness akin to working out your arms or legs. This is a good thing I believe. I have no terrible gaping hole feelings or rattling ghostly sounds at all when I breath(like my first transplant). It has been this way from day one. However, I do feel that perhaps the lungs, when I breathe deep, put pressure on my lower airway diaphragm and intercostal muscles and they get sore. Mostly because I haven't used these muscles in ten plus years. I habitually still breathe from my upper chest muscles and accessory breathing muscles. I have to relax and reteach my body that it is OK to use my stomach and diagphram to work, that I won't launch into a major coughing fit when I do this.
So, in a nut shell, my breathing has been perfect. In fact, I have coughed maybe 10 times in 3 months. And that may be an over estimate. I have had no congestion except maybe one time when I had a sinus infection. I have to take the time and remind myself how bad the coughing was before my first transplant. The waking up and coughing constantly for 3 hours. Finally, the chronic consistent cough would subside at the desk in my office at around 10am. At this time, I would feel brave enough to go see customers or make phone calls without people thinking I had the plague when they heard me cough. Although, with the smallest amount of exertion or movement I would trigger a coughing fit at all times of the day. So, explaining to people I was not dying was always the norm. That has been the most amazing thing about both transplants. The lack of coughing. What a relief.
I have had some musculoskelatal problems and a few issues with blood levels related to potassium and my tacrolimus level (This is the major drug for immunosuppression). But nothing that has really slowed me down. The cortisone injections in my hips worked. No more hip pain. However, my feet which have always bothered my but took a back seat to the hips for awhile, flared up with great intensity. They are numb, tingle, are atrophying, look frail, and sometimes hurt intensely. Why?? No one seems to know. There are 3 theories. 1) an MRI showed I actually have 2 herniated discs in my lower lumbar5 area. This is putting pressure on the nerve roots. How I have this now is beyond me. I am seeing a spinal surgeon tomorrow and he can better review the MRI and my symptoms and see what might be related. 2) Diabetes. The last year I have been a diabetic with poor glucose control. I tend to run high. And also spike up and down rapidly. I admit I am not the best at controlling glucose. I take the insulin, but there are times when I need a coke and snickers and just cant find that insulin needle. So, perhaps I have developed a diabetic neuropathy. This makes the most sense with the symptoms I have, however it is unusual to develop this in about a year. It usually takes 15 years of poor control. However, no one really understand CF related diabetes to know for sure. and finally 3) it could be the Prograf (major anti-rejection med), it lists peripheral neuropathies as a side effect, and many people complain about heat in their feet when walking and on prograf. But the doctors never want to acknowledge this theory and think it is virtually impossible. I think they are right, however it bugs me that they lend it no credence whatsoever. I think it is because they want me to stay on this med at all costs. And I do too. They believe it is superior to Cyclosporin, the other drug for immunospression that was used before prograf.
So, I am left in limbo. The pain and discomfort I can get by with. However, my feet are wasting away and have such poor sensation. Sometimes I can't tell what position my toes are in, they get stuck in my pants and I can't move them when dressing. The pain will act up at night and force me to stay up to 3am watching pathetic shows. This week I see the spinal surgeon and the Endocrine specialists.
So, focusing on the positive. My breathing and what I have been doing. Here is a sampling of what I have done since my last post.
-trick or treated with the boys and friends, walking around for miles with not so much of a hint of tiredness
-Playing basketball every Tuesday afternoon with Matias. He looks like a natural, like his Dad. Come on, all my real friends out there know I had crazy skills. For a kid with CF, I made you all look stupid on the court.
-Wrestling Simon and throwing his 52 lb. body into bed. That's right, you heard it, I can lift 52lbs of giggling, struggling, and delightful child now!
-kayaking in Kitty Hawk, NC.
-Hiking up the huge hill at Kitty Hawk to see the Wright Brothers memorial. Serious incline. Not one problem with breathing. Running with the boys down the exact path the Wright Brothers did their first flight.
-Riding my bike all through the neighborhood, and keeping up with anyone (except Lance Armstrong). Riding back from school with the boys.
-And subtle things that are taken for granted. Getting right out of bed, going to the store, walking the dog, cleaning the house (ok, I'm bullshitting, my lungs can not handle this yet. So, I tell Rebecca). And just being! Being a Dad, husband, friend, partner, and member of the community without feeling like I had a giant SICK sticker stuck to my forehead.
I saw my surgeon, Dr. Haithcock on Friday. I didn't get a chance to talk to him, but I felt such gratitude, finally. I was thankful when I last saw him before discharge, but I was still so apprehensive and scared from what happened. I was going home, but holding my breath. But seeing him made me realize how this man stood up for me a second time and gave me a chance to live again. The second set is always better. No matter what happens, these last 3 months out of the hospital have been incredible and I have appreciated life like never before! I've finally let that symbolic breath out. No more holding it any longer.....
Thursday, October 28, 2010
Simon on cloud nine with his "bestest girl friend Abby"
What a great week it has been. I was able to make it home to Maryland for the first time since I left in a breathless rush on 07/07/2010 and was admitted right to the hospital. A few days after that I was in ICU and the rest is kind of a blur. I survived thanks to the incredible staff at Chapel Hill, my caretakers Rebecca and my Mom, Gayle. Mentally, I had to draw support from the thought of somehow making out of a second transplant and being able to just hug and experience life with the boys, Simon and Matias. To do this, I relied on all of my family and friends that were pulling for me. It was like I was sending out an SOS, a message in a bottle, while I was waiting for another donor and I could feel a huge support network pulling for me. The same thing with recovery. There were plenty of times where I complained and thought I just couldn't do it or things were going wrong again and without people pushing me and sending me messages of support, I wouldn't have been able to have stayed sane. One time was enough, but a second time??
So, to be home and see my house and yard with the beautiful fall foliage was symbolic. We were lucky enough to visit with so many people even though we were there such a short time. We devoured incredible food and even were told to keep it down at one restaurant, we were having so much fun. (or at least one of us was told to keep it done ;-)) So, thanks everyone for a great weekend.
I don't know why I deserved yet a second miracle chance, all I know is that I am still alive and doing incredibly well, in the big picture. The lungs feel exceptional and I am gradually starting to retrain my breathing muscles to use the full capacity of these lungs. For over 10 years, I had been taking very shallow breaths and using my accessory and neck muscles to breathe. It is easy to fall into that habit. But now I need to strengthen my diaphragm and intercostal muscles to take full deep breaths unconsciously. There are trade-offs with the New Me. My next post I hope to provide a list of all of the side effects, and little subtleties that are different in my body. It will take some time to get use to. But to give you an idea, diabetes, neuropathies, shaking, sensitive skin,aching bones.. And the list goes on, but it makes you feel different. I will explore that in a future post, as I want to point out to people that are waiting for transplant or have just gone through one what might be possible to experience. However, with all of these bothersome issues, to be able to breathe and have fun again is more then worth it. They should call people with Cystic Fibrosis who undergo transplant something like CF 2.0 We have a new lease on life from some selfless hero and their family. Which between the two of us is a New Me.
Thursday, October 21, 2010
Today is my 3 month mark post second transplant. My lungs and breathing feel perfect. Well, as perfect as I know perfect to be. I received my biopsy results before the weekend actuall, Dr. Coakley was nice enough to call me and tell me before I left for the Phish show. Everything was completely negative. No signs of any acute rejection, no infection, not even a hint of congestion. Airways were wide open. So great news all around.
I then preceded to enjoy a beautiful phish show. Some highlights: guelah papyrus, mango song, pebbles and marbles, David Bowie, Crosseyed and Painless(talking heads, which is always rocking)!, 2001, sneakin sally through the alley, and an interesting YEM. So, no disappointments there. I left out many more....
Despite the show, I had plenty of down time in my hotel room. And was actually able to relax in bed and ponder the last 3 months but also the last year. What a whirlwind. So quickly you forget about the sick days and start to take for granted breathing freely. I am not there yet, but isn't that the goal?? I've definitely almost forgotten just how sick and close to death I was. However, when your transplant surgeon admits he was very worried (but to his defense, not till after the tx) then you tend to never forget. But I don't want to take this gift for granted. So, it is a bizarre dilemma. I finished up a letter to my new donor family on this 3-month anniversary. I really hope the letter finds them and helps them. I do hope for a response. It was disconcerting last time to never get a response, however I can understand why a family or lack thereof might not need to write back. Thanks might just be enough.
Finally, what once would be a big deal but now seems small. I ended up having to receive cortisone injections into my hip joints this morning to treat the chronic hip and muscle pain I've been having. An orthopedist thinks I have an impingement syndrome in my hips. Well the buildup was worse then the procedure. It hurt, but after 2 double lung transplants it was a walk in the park. Good news is, it seems to be working! Pain is so much better. Let's see what the next week holds.
Looking forward to starting this 4th month out on the right foot, or left as long as I don't have any pain. ;-)
Thursday, October 14, 2010
I wanted to quickly touch base as my 3 month mark of my second transplant is quickly approaching! I can not believe all that has transpired the last 4 months. Like a previous post I made, the time seems hard to measure.
I continue to do very well this time. The lungs feel exceptional. I can breathe freely and deeply. In fact today, I had my 3 month bronchoscopy. This is where they go down into the lungs and take a look at everything and take a biopsy to check for rejection. They did my procedure in the OR, under general anesthesia just as a precaution given my bleeding episode last time. It went perfectly. IV insertion (no problem), sedation went perfect (love propofyl, not as much as MJ though), recovery and discharge were easy. Dr. Coakley said the lungs were wide open and looked great. No infection present at all. They took samples and they will take 3 days or so to come back. I feel great, so I have no reason to believe anything will show up. One never knows though.
My only remaining major issue is the pain I suffer from in my hip joints on both sides. I believe I mentioned this a few post back. It turns out I have an impingement syndrome that has developed. According to the Orthopedist, close to 10 years of practically no real intense physical exercise caused the joints to develop some tissue and tightness. I exercised real hard about a month ago for 3 days straight and tore the tissue away and now when the muscles and tendons glide across the joint they get impinged upon. It has made me slow my gait to a snails pace. I can still work out on a bike, and do certain exercise. I also have worked more on my upper body in Rehab. The treatment is a steroid injection into the joints. Not much fun, but I seem to have no choice. Ironic that now I can breathe freely, but cant walk fast or run to enjoy these lungs. I'll take the breathing freely though anyday. What a great feeling.
So, tomorrow I have clinic and expect a good report from that. I will post a nice synopsis once I get my biopsy results.
I am heading off to yet another Phish show Saturday in South Carolina. I need a little escape to gather my thoughts and put into perspective all that I have been through and all I have ahead of me. What better way to do it then enjoying my favorite band...
Until then, thank you all for the well wishes,
Monday, September 27, 2010
Joseph was a true fighter. He was in the medical ICU with me here at UNC before my transplant in early July. We both were barely holding onto life then, and his parents became aware of my blog and existence down the hall from him. Despite being a hallway away, we never met each other, mostly because of our conditions and infection precautions. But the Roberts family was very supportive of my journey and fight and have even left a few comments here. Despite both having CF we had different pre-tx issues. I was happy to hear he received a transplant not long after me. I followed his progress through his blog maintained by his Mom, Donna, and Girlfriend, Amanda. He had a difficult recovery.
What I drew from him, I never commented here on my blog. But I will now. For me, to get through this second transplant I needed something motivating to grasp on to. Yes, I had my family and friends. But Joseph became a silent force for me. I would envision how hard he was struggling and hear how he was never giving up. Always positive, always fighting for a normal breath, or the day when he would go home. It made my recovery easier to deal with. When times seemed dark and the days turned into weeks, I thought about how there were younger, stronger willed people with CF, like Joseph right here at UNC, going through much worse. There was no way I could give up and get negative.
I can't imagine what he had to deal with the last few weeks. It is something that not many could have done or dealt with. I know he helped save me and today I feel a huge loss and grieve for his family, but deep down I hope and know it will make me even stronger and enjoy life even more, so I can carry on his memory for as long as I live.
Please go learn about this incredible person..
Joseph Roberts 05/03/1990-09/27/2010
Tuesday, September 21, 2010
September 21, 2010. What an amazing day today was to breathe and live! Hard to believe but today is the 2 month mark of my Second-Double lung transplant. Although I am marking this occasion, I have to admit that time has seemed so inconsequential. It is hard to describe. Sometimes I feel like more then 2 months have passed, sometimes it feels brand new like I got the lungs yesterday. To be honest I feel a bit enlightened in the sense that time has at times(irony intended) lost its construction in my thought process. I remember after my first transplant the days being long and counting each one. With these lungs I go to bed and wake up breathing perfectly, perhaps that is the difference. So, on this monumental occasion and to celebrate my continued life and presence I will take the time to honor my donor and his family and talk about that day.
Again, I don't know much if anything about this donor. I will first preface by saying I am grateful to my original donor, however it was not meant to be for whatever reason. He/She did give me close to a year though of continued life and happiness. thank you. I never did hear back from the letter I sent to my first donor family.
My nurse, Dave, an Irishman now living in the US, was my nurse that morning July 21, 2010. He had been my nurse for a few days in a row and watched me slowly descend over those few days. He came bolting in the room at like 8:30 or so, maybe earlier, saying they had lungs for me and it could happen soon!! I expected my transplant coordinator (wait, I didn't have one), or one of the transplant docs to come in bearing the news, so at first I did not really believe him. But that was short-lived. He assured me it was no joke. My Mom and Dad were there, I think my Dad had just arrived, the prior day?? memory is poor. I think Rebecca was there too, or on her way. The news gave me a jolt of adrenalin that lasted the morning. They told me to perhaps be ready for the surgery around noon. Not much time. I told Rebecca to go get the boys, so I could talk to them and see them before surgery. They got there around 10 or so, and I was able to kind of summon enough energy to not look to sick and make them think I was strong and everything was "normal" just like last time. It was a quick visit, but worked out perfect. We have photos somewhere and I will round a bunch up of the last two months and put a little slide show together.
Anyway, my adrenaline wore out around noon. By 3pm or so, I am wondering if it will happen or not. Finally, around 4-5 or so, they came and got me. It happened so quick. I don't remember the goodbyes. I do remember getting into the operating room and helped onto the table. Dr. Haithcock came in kind of hurriedly and I had enough time to joke with him one more time about how sore my right rib still was and if this time he could put me back together right. I think he was not in the joking mood, because like a third-base coach or something I saw him grab his earlobe, which must have been the "sign" to the anesthesiologist to knock my ass out, because after our little jibe it was lights out....That was a Wednesday evening, the next thing I remember was Rebecca and my parents and the respiratory therapist waking me up Friday morning..
I don't know much about my donor. I hope to find out more though this time. I will probably send off a letter very soon. These lungs feel so strong. They fit like a glove, or at least seem to. That was one of the major issues I had after my first transplant. I would breathe in and have a feeling of a giant gap in my lower left side.
I have a feeling this was a tragic case of someone very young and healthy dying early. I heard at least 8 organs were donated from this person!! That was the reason for the delay, lungs are the last ones out. I know the blood type was O+. I found out someone on my recovery floor received his heart and was out of the hospital in like 10 days. I know from Dr. Haithcock that these lungs seemed pristine and he was very happy that he was able to match them to me. Truly, saving my life. That is all I really know at this time and maybe that is all I need to know. Time will tell...
To the family of this person, there are no words to say. It is the most self-less act one can do for their loved one. An anonymous gift during such a tragic time. But at the same time, saving so many lives and altering the future for so many families, friends, acquaintances, and people yet to meet. So, perhaps that is why i don't pay as much attention to time because the gift I was given is beyond that it is infinite and not measurable. It is an energy a Force that emanates out and ensures that their spirit continues on forever.
Saturday, September 18, 2010
Happy and healthy new year to all of my friends out there, regardless of you religion. With the sun setting I guess all of my sins for the past year are forgiven, and it is time to create some more! JK, of course. Although, I miss being at my Aunt Harriett and Uncle Steve's tonight to delight in her sinful kugel. Note to Aunt Harriet, my Mom came down here and tried to replicate it, but I did not have the heart to tell her yours was better. Saved it for the blog. First sin of the year accounted for.
Moving on, We/I continue to do well down here in Chapel Hill. I had another clinic appointment yesterday, Friday. I am approaching the 2 month mark of my second transplant. It really does not feel that long because I had to spend practically the first month after transplant in the hospital, with the side effects and problems we have blogged. That said, my check up was positive.
I was put back on lasix the middle of last week, because of the slight swelling returning to my legs and my mid-section. It seems to have worked, as my legs are not swollen. However, I still have a slight swelling right in the center of my chest. My chest x-ray below, shows you a Look Inside of Me! It is hard to know what to look for, but let me attempt to guide you. Aside from bones, your heart, and then lower down stomach, intestines etc. The chest xray should look clear or black. If you look to the left, that is my right chest. It is relatively very clear. If you look to the right, that is my left chest. Believe it or not it is relatively clear as well. What you see is my heart, and then a lot of the white is my Tunneled PICC line I still have in. PICC actually, stands for Peripherally Inserted Central Catheter. Peripheral meaning they usually start it in your arm. However because my arm veins have been exposed to over 30 plus picc lines they are scared and unusable. So, they start this in my upper chest and tunnel the line into a large vein. I still have my in, and what you see is the actual plastic lines and tubes. Those make up the spots. They are actually outside my body, the only thing inside my body is the small thin tube you see at the top right. There is some cloudiness, this is some of the pulmonary edema I still have. Basically, the swelling still leaves some fluid and this just takes time. There is also some spots or areas that I have no idea what they are, but am told the xray looks good. This is where you nod your head and agree because you feel good. I tried to label a few things, but did not want to take the time with a photo editor, but you get the idea.
My transplant was somewhat unique at UNC Chapel Hill, not for the sake that it was a second double-lung, which they and most centers shy away from now. Why do they shy away? A few reasons, outcomes tend to not be good, it is a more difficult surgery, and there is probably other various political type reasons that I don't want to go into. The good news is Dr. Haithcock, Becky Cicale (my transplant coordinator for my first one, and up until right before transplant), and Dr. Noone, agreed that I was a good candidate for re-transplant and they were willing to list me. If not for them agreeing to this, I would certainly not be writing right now. Even though it is always a team approach, Dr. Haithcock ultimately makes the call and he truly saved my life. Thanks Dr. H. Getting back to the uniqueness. I did an induction therapy called CAMPATH during the surgery. This has never been done before at Chapel Hill for lung transplants. It is a protocol that the surgeons at Pittsburgh have been using for a few years now almost all the time. However, there is limited multi-center research (actually none that I am aware of) on its effectiveness for better outcomes. Pitt published a study in 2005 touting its benefits at their center and they continue to study it. There is also limited research at other centers as well, using it in other ways. However, given the fact that I entered chronic rejection so early and when it presented it did so rapidly, we(my Mom and Rebecca), contacted Pitt and talked with Dr. Noone and the other transplant doctors here and put helped put all parties together and we agreed to try it on me. All these decisions happened so rapidly. Within a matter of 8 days. The head of the program at Pitt Dr. Pilewski sent the protocol to UNC and communicated with them on what was recommended. Here is a quick link to the published study in 2005, which begins to talk about its effectiveness. http://jtcs.ctsnetjournals.org/cgi/content/full/130/2/528
So, what is Campath? It is a chemotherapy drug. I will go into it a bit more later. It is not some new innovative drug. The doctors at UNC are very familiar with it, and have used it with Cancer patients many times. Dr. Haithcock uses it when he works with lung cancer patients. I think it is used in different ways for kidney transplants. What it basically does is completely wipe out your t-cells and thus your immune system.
The brief protocol: I received three doses of the medication during my transplant surgery. I am not sure on the specifics times. After surgery I thus require much less immunosuppression with prednisone. Actually taking a much smaller amount. Which is easier on the body, mood, blood sugars, etc. There use to be a thought that the other two suppression drugs, cell-cept, and tacrolimus, could be reduced as well, but they have been kept the same. The hope is it prevents acute rejection and helps your body accept the new organ. After 4-6 months it starts to wear off, so to say, and in the long run it will help prevent chronic rejection, because it gave your body those first 6months of acclimating the new lungs. That is the theory as I understand it. Given my situation we thought it was a no brainer and rolled the dice.
So, briefly I wanted to fill you all in on what was medically different and in essence experimental with this transplant. So, far so good though. Like I have been posting, I have had no signs of acute rejection, no fevers, no cough, etc. My pulmonary function tests have been steadily improving, I reached approximately 50% yesterday. And again, I feel if the swelling and that annoying pressure or band like feeling in my lower airways subsides that number should sky-rocket.
We had a great week with the boys and are starting to fall into a nice routine. Soccer practices, play dates, Rehab, and other exercise activities. Rebecca took me to the place where she works out on Monday. It is basically a martial arts gym, and they have classes all week long and you can go to any class you whenever you like. So, monday morning they had yoga from 9-10 and then a strength and conditioning program from 10-10:30. I sat in. Let me just say I am still sore. I of course modified a lot of the yoga, the instructor was very cool and helped me, but it was a great workout. The strength and conditioning was a bit nuts. It is pretty hardcore, I did not feel uncomfortable though, you can modify everything, and it was small and the instructor knows us and our story. But it is geared to martial arts experts and here I am 6 weeks after a double lung transplant trying to do Japanese knee lunges and all kinds of intense but fun moves. I would like to go again, but unfortunately won't be joining, yet. It is just too hardcore even though I can modify whatever I need to, but I need so much time to recover etc. I might go to the cardio-kick boxing class this week, and then decide for sure. Needless to say, Rebecca goes to these classes all week and can kick the shit out of anyone. So, back off.
Well, that is about it from here. Tomorrow, we have a fun day planned. UF women's soccer is actually playing UNC! The game is at Duke though, because they are hosting the event. After the game is actually a lung transplant gathering at the duke gardens. It is called lungapalooza (don't know if Perry Farrell will make an appearance, but you never know). It is suppose to be a big deal. Food, games, music, etc. We will take a lot of photos.
Sunday, September 12, 2010
My post two posts ago, which mentioned a few of my personal beliefs on current events attracted a few emails and a comment suggesting that the blog was now unreadable because I injected my political thoughts. Is Glenn Beck and Sarah Palin Political figures?? I thought they were cartoon caricatures!! I did not think it was a political post at all. I have been to Alaska and a Reindeer could be governor. For like a few weeks or maybe a month if it was the dead of winter. I was calling out inconsistencies in statements. It will not bother me if the dems lose the house and the senate. It is what it is. I have voted all ways, for the record. Democratic(which yes, I lean), republican(which as I get older some conservatism follows), and when I am real crazy on medication Independent. See now this blog has become political. I am sorry if I offended anyone but please if that post bothered you, please un-subscribe. Or in your comments make some humor at anyone or any thing you want and if it is funny I will probably laugh and I wont be offended. Unless of course it is offensive.
Now back to the lung transplant. Or second one for that matter. Had a fun weekend with my mom visiting. Things seem well. The lungs still feel very strong, however I still have some swelling in my chest area that just continues to prevent deep breaths and the lungs to fill all the way up. Some swelling has returned to my legs a bit with some pitting edema, but I have been told that this will fluctuate. I gained 13 pounds though in like a week, so how can that be from eating. Although I have been eating a lot. Even with not being able to take those huge breaths what I do have is great. I don't feel short of breath ever. We played some soccer and basketball with the boys, who won their first real soccer game 6-4 in their under-8 league. Both played fairly well for their first real league game.
I promise to post a transplant medical recap soon, as I wanted to document some of the procedures and protocols we did.
(go ahead cowboy fans and send me the hate mail)
Thursday, September 9, 2010
07/21/10-This is my new date. It has been 7 weeks. I am making incredible progress this time, despite how sick I was before and a few complications I had during the hospitalization and surgery. Out in 17 days last time, I was in for a total of 48 days this time. 2 weeks before the word came for a donor. The deja-vu part is being back in chapel hill for another fall. The boys already know so many friends since we are at the same school, our schedules are slowing becoming what they were last fall. Overall,we are settling in.
The difference is in how I feel. These lungs feel like a perfect fit. If not for the weakness of lying in bed for 48 days and having swelling issues, I feel like I could climb a mountain. Which I sort of tried, but my legs turned to rubber after a few steps. I am going to rehab and slowly picking up the pace. I have been having some issues with my feet hurting and burning when walking or on a treadmill for a period of time. When I say burning I mean like in an oven. It is very painful. Sometimes it extends to the night and my feet are just painful and aching all night. The only other issue right now is the continued to damage to my right arm. I saw a Neurologist for a follow-up yesterday, and he basically said nothing. He said it could be permanent damage to my bicep and muskulocutaneous nerve, but it could regenerate over a long period of time. So, although very annoying and at times painful, these side effects I will take for some great lungs that like my body. The next few weeks will really be important as the Campath,the induction therapy protocol we had UNC do, begins to wear off and my t ells come back a bit. More on that in the next post....
ps. Happy new year to those of you.
Monday, September 6, 2010
I know it has been awhile. As you all have gathered from my ramblings and my life, the delay was from my attendance at the Glen Beck rally to reclaim America. I bought some gold coins while I was there too, instead of just regular gold which is so over-rated. lol, I digress. Being in the hospital for 48 days the chalkboard hypnotized me. But luckily, the code blue snapped me out of it. Sorry, if you are a Glenn Beck fan. I just don't understand people who swear by the constitution, yet want to ignore freedom of religion, and want to change or even better get rid of another (14th)amendment. But other then that the constitution is perfect and needs to be restored. haha. love it. But I digress, this blog is about my health.. Could you imagine a rewritten constitution by Beck and Pallin? Amending Jefferson's and Adams beliefs about freedom of religion: " All religions are tolerated, as long as no Mosques are built within 5 miles of any "sensitive sites" because all terrorists are Muslims, but people who shoot up post-offices are just misguided or troubled. Although they could be witches, but we tolerate that in basements only."
So, if I have time to write that and probably upset some of my audience then I must be feeling a bit better. I am so sick of "news" though. It is so obvious that our country wants the same things, yet we are so divided. I see so much more hidden racism now, then ever before. It is hidden though and that is the scary thing. Wonder what our parents thought about the 60's.
My health has been steadily improving. I lost all the edema weight and am back to my scrawny self. Now I need to gain it back. My breathing seems to improve everyday though and I can tolerate so much more activity. This past weekend with Lois (my mother in law), we did many things. Went to another UNC women's soccer game. We walked all around Duke's campus and their famous garden area. I never get short of breath or even out of breath. Unless using my muscles. They are what is still holding me back and they can be worked on. My legs are weak, so if I go up 10-20 stairs they feel like rubber, but my lungs are like, "come on lets take these steps two at a time". Of course, I need to build up my stamina as well. It will come I am going to Rehab now 3 times a week.
My last chest xray looked good and improved. I still have some pulmonary edema but it is resolving. The right side looked so clear. Black like the night sky. Very promising. I have some pain around my incision area, ribs etc. but not that bad. My main complaints now are secondary issues. My feet are a bit numb and burn at times. Weird. My right arm still is very compromised because of the brachial plexus injury. It is very painful at times. I can use my hand though and can use the arm as long as I don't try and lift anything over 3-5 pounds then boom the arm drops. It has atrophied quite a bit and looks like a dead-arm, but again I can lift it use it, throw with it, use all my fingers, so I can't complain too much, just no bicep innervation at all so it is very weak. There are other muscles that are gone too, but I don't know what they are called.
My next post, which will be shortly, I want to recap medically what really transpired during the transplant and the days in the hospital. We used a very new, unproven to an extent, yet experimentally positive protocol called Campath. It had never been used with lung transplant patients at UNC. Also, my surgeon the great Dr. H, had never actually done a second transplant since he took over as head of surgery. He had assisted on many with the legendary Dr. Egan. So, the team had a lot invested in me and really looked out for me. I had a bumpy recovery and have not officially recognized my donor yet. I will do that shortly as well, but here with Rebecca and my family we recognize him daily. These lungs feel so alive and strong and I thank the gift I received. To really have my life saved, when I was practically on my death bed is very profound and it has taken a few weeks to realize what has transpired.
Friday, August 27, 2010
We picked Mitch up from the hospital Tuesday night after "meet the teacher" evening at Mary Scroggs Elementary, and we brought him to our home in Chapel Hill. Simon and Matias started first grade on Wednesday. And get this! Mitch actually got on his bike and went with me to pick up the boys in the afternoon. He even pedalled a bit (its an electric bike- but even holding himself and bearing the heat was tough. He really wanted the boys to be happy he made it, and they were!
Mitch is losing fluid. He now weighs 137, which is coming down nicely. His potassium is UP again to the 6's so he is drinking a med to adjust that, hopefully promptly. His PFT's today at clinic were 35%%. Dr Lobo said that is because of the fluid and will get better. Docs are pleased with his progess. His kidneys are in a normal range now. He got a shot to raise white blood cell count- its too low now- because of the campath protocal he had to avoid rejection- which is basically like chemotherapy.
Really thinking about those who are still having a hard time in the hospital and fighting very hard,...really hoping it all works out for you, very soon...
Tuesday, August 24, 2010
This has been a long battle. I have a tendency to block things out including time, that is my coping mechanism. Before transplant especially, those two weeks were I basically was getting worse each day it simply does not seem like 2 weeks. I have been in the hospital now for 48 days. The good thing is it does not feel like that much, however as i get ready to go home the time will start to knock on my door. I will wonder how much the boys have changed, how it is almost September, the boys start first grade tomorrow!, football season is starting!, and I will think about those 48 days and ponder what is different. What is different is I now have two new lungs again. This sounds weird but these lungs just seem better and stronger, eventhough I am not breathing great yet.
Although I am able to go home, I have a long road. I still have major edema and need to shed at least 20-25 pounds of water weight. The doctors think with my kidney function being normal again I should shed it as I move around etc. which is more likely at home. I need to stay on blood thinners for awhile because of the blood clots I have. I need to watch my potassium level. The edema is mainly in my chest and upper legs. In the chest it creates pulmonary edema. So, my breathing is improved, but won't be great until I lose the edema from my chest. It is like I have a girdle on or something. when I try and take a deep breath in, a band of swelling just tightens and prevents my chest from expanding. Very annoying. Finally, I have some secondary issues like the nerve injury to my right arm. It is a mess, I have no bicep innervation yet. So, there is no bicep muscle, it is just flapped down. Some of my fingers are numb, and my forearm as well. so, it is very very weak.
But the bottom line is i am healing. I am breathing and feeling much better and moving around. I am going home on no IV's at all. however, I am nervous to take out my IV line in my chest as I have serious access issues and I know if it is pulled I will need IV meds in a week. The doctors agree it is safe to leave it in for a bit. So, we will see in two weeks or so.
Thanks for all the support. We have conquered the toughest hurdle and are ready for the next.