Day 62

Wow, I have passed the 2 month mark. The doctors say that at 3 months I will feel a dramatic improvement. I can't wait. A few days ago I overdid it and walked 7 to 10 miles and really struggled to get back home. It took me 3 or 4 days to recover. I'm better, but not as good as I was. I will stick to smaller bites each time. Food taste bland, but starting to taste again. My stroke stricken right side is still weak.Getting better, just not quick enough for me. We had an offer from a friend, who just relocated to Louisville, Kentucky, and bought a big house, to come live with them. What a wonderful offer. I can't leave my doctors for a while yet, as I have to go for follow-up visits and tests bi-weekly. I am trying to stay busy at home, but it's tough and boring. Good news, still gaining a little weight. I'm up to about 164lbs. My great neighbors have been cutting my grass because the doctors don't want me to do any gardening or be outside while people are doing yard work. Eventually, I will be able to do these mundane chores. With the immune system being shut down to prevent my body rejecting the new lungs I am more susceptible to diseases, spores and bacteria. A small price to pay, believe me. Anyone have any ideas how to keep the mind busy, please leave some comments. Actually all comments would be welcome.  I would just like to know that someone is actually reading this blog. Don't be afraid to tell someone that you Love them. You never know when they may not be around anymore.

History VI

So, I put my 1/2 banana away, threw out my cereal and coffee, and waited.  You can imagine the thoughts going through my mind at this point.  Will the lungs work? Will I be able to finally get off of this nasty oxygen? Will I finally stop coughing? And how about, will I survive the operation? Does the surgeon know what he's doing? And I wait.  Susan calls about 2 1/2 hours later to say they are still running tests but everything looks good.  She will call back. About 3p.m. Susan calls again. She says," OK, are you ready?"  I ask her ready for what?  She says everything looks good, come to the hospital.  WOW! I am now scared to death, but remain calm. I called Linda, whom I've been updating via text messaging, e-mail and phone calls.  I told her they want me to come to the hospital, and ask her if she is ready. She is now out of her mind with nervousness, she says yes and asks me what she is supposed to do. We had a plan in place, that we had discussed previously. She was so nervous, she couldn't remember what to do. I told her to take a deep breath and calm down. Then, I told her to meet me at her mother's house and the three of us would drive to the hospital together. I too, was nervous. It seemed like I was running around the house in circles trying to figure out what to do. I met Linda at her mother's house and the three of us drove to the hospital, which is about 45 minutes away from our home. After being admitted they take us to a hospital room to prepare me for surgery.  We met Kim and Susan, nurses on the Transplant Team, in the room and they told us that it is still a waiting game up until the surgeon comes back with lungs in hand and is satisfied everything is a go. At this point, they are asking me questions and having me dress in hospital gowns and laying in the bed. I am having , what I consider, an out of body experience. I am there, but I am watching from a far, at them asking questions of my body.  Weird, really weird. I'm not sure of all the details from this point on. I do know that they said the surgeon had arrived and he was pleased with everything and gave the go ahead about 8p.m. Linda tells me, they didn't wheel me in until after midnight. The surgery was supposed to be 10 to 12 hours long. I was done in 8 hours, I guess that's a good thing.....................

History V

I was put on the National Registry for Lungs.  16 days later I was called at 8 a.m.  Susan, with the Tampa Transplant Team, asked me if I had eaten yet.  I responded that I had a full bowl of cereal and milk, a cup of coffee, and a half of a banana sitting in front of me.  I had already eaten half of the banana.  She said good, stop, don't eat anything else.  They had a pair of lungs that looked good and were a good match for me.  The way that they match is though blood type, size of the body, and quality of the organs.  They don't want a smoker, nor anyone who has or has had cancer.  There are other disqualifying ingredients, but these are the major ones.  I asked her if I had time to think about it.  She said no, if I want them I had to tell her right then.  Wow, what a decision to make.  I was deciding whether to have someone fillet open my chest and have someone else's lungs put in my chest and hope they will work without being rejected by my own body.  Take a minute and think about that...................  In the end I said yes.  What was the alternative?  Death.  Susan said okay and that she would call me back in two hours.  What had I just agreed to?..................................................................

Day 55

Hi!  I'm back.  After much discussion, it has been decided that once a week blog is better than everyday.  Sorry, most people get tired of hearing from me everyday, so we'll do once a week.  It's been an up and down week.  They changed some of my Meds around and I was walking around like a Zombie throughout the day.  I didn't have enough energy to do any exercising or just about anything else.  I went to TGH for clinic on Monday, told Dr. Haddad what was up and he had me stop one of the pills he had me start 2 weeks ago and moved another to the morning.  Now I'm not taking anything that will cause me to stay up at night and not be able to sleep.  So, I don't take anything as a sleep aid.  I am a terrible drug addict.  I have such a low tolerance that even the non-drowsy medications make me drowsy.  I am beginning to be able to taste food again.  Boy, it sucks when everything tastes so bland.  I have no desire for sweets, which used to be my downfall.  I used to want chocolate and Ice cream at night before bed.  I guess that's a good thing, not to want sweets.  But I don't know how I'm going to gain weight like this.  Remember, I went from 215 lbs. down to 159 lbs.  I am still at 159 lbs. Lungs are working well, breathing tests that I do every morning are good.  I don't cough when I eat nor when I talk on the phone.  My voice is okay, not great.  When I had the stroke, during the transplant procedure, it paralyzed my right side as well as my vocal cords.  I had a second operation to add filament to my vocal chord to allow it to vibrate better.  It has helped, but I still have to strain a little to talk.  Some think that's good because I won't talk so much.  After a year post transplant, they will decide if they need to do another operation for my vocal chords.    I can't complain, I'm in a much better place than I was before the transplant.  Remember every DAY is a gift, open it up and share it with others.

Day 48

Pretty tired today.  Not sleeping well.  Still went to see my girls at the Pulmonary Rehab Center at Morton Plant Hospital.  I just wanted to thank them for all their help.. There were 5 nurses that I dealt with on a regular basis before the transplant.  They were elated to see me and to hear that I had the transplant.  What a great group of caring individuals.  Went to the Post Office, then to the beach to run/walk my 2 1/2 miles.  Lovely Linda came home from work to have lunch with me and the dogs.  What a  treat.  Went to Sprint to get my phone fixed, not that it happened.  They don't repair anything anymore, they just upgrade you so it costs you money.  Feeling good overall, but I'm going to cut this one short.  See you tomorrow.

History IV

Later in the day I got a call from Dr. Haddad, the doctor I first met at Tampa General Hospital.  He wanted to make sure that I knew time was of the essence.  I had already spoken with Lovely Linda about the previous phone call from TGH and decided to go ahead and allow them to put me on the list for Lungs.  I was after all going downhill fast.  Bathing and dressing took my breath away.  So, when Dr. Haddad called and we spoke at length, I told him that I was ready to be put on the list.  February 10th, 2010 I was entered into the data base for lungs through the National Organ Donation Group, ( or something like that).  What a scary thought, someone else's lungs in my body.  What choice did I have?  An early death was eminent without the transplant.  And I mean within a year.  I truly believe that.  Everyone was happy that I decided to do this, but I was scared to death.  The National statistics show that with a transplant the average life expectancy is only 4.6 years.  Well, I believed I could last that long without it.  Remember, as I had to remind myself, that statistic includes everyone that has other things wrong with them.  Everything from cancer to cystic fibrosis.  I was fortunately healthy, except for those lungs.  I have found people 20 years post transplant still going strong.  I plan to be the longevity record holder with 2 transplanted lungs.  After all, I picked up 22 year younger lungs.

Day 47

What a day.  I took my next door neighbor, Frank, out for coffee and to the beach for his birthday.  He turns 50, Happy Birthday Frank.  He's really a good guy.  He and his wife Debbie fed our dogs, both morning and night while Lovely Linda stayed most of the time with me at the hospital.  10 days or so, and he hand fed our picky eater, Lucas.  What great neighbors and friends!
I also went to see my girls at the Pulmonary Rehab Center at Morton Plant Hospital.  They were closed.  I was going there before the transplant and they were very kind to me and a lot of fun.  I also tried to go by my friend Wendy's home.  Neither place was available, so I went to my mother-in-law Agnes' to have lunch with Agnes and Lovely Linda.  Then I went to the beach and actual ran, albeit short spurts, on the beach.  Probably 2 miles of running and walking.  Not bad for an old guy with 31 year old lungs.  Yes I know the age of the lungs.  I chose not to know where they came from or the gender.  Let your imagination run wild.  I have heard everything like, " a black lesbian's lungs."  Guess that's why I still love women.  Ok that's enough of that.  Today's mission, Give a dollar to a homeless person.  Go ahead  and try it.  It'll make you feel good.

History III

Went home with Lovely Linda, still not wanting to accept everyone's diagnosis I started doing more research via the Internet. A warning about researching on the Internet, some is very useful but a lot is just plain CRAP! Be careful what you read and believe. I decided to get a 3rd opinion, and decided The Cleveland Clinic in Ohio was the best of the best. So, I checked with my insurance company and found them to be in network, so I made an appointment. We went in December 2009. Met with Dr. Jeffrey Chapman, a great guy and very knowledgeable. After 2 days of testing, he concurred with the other diagnosis, IPF. He thought it was a bit early for a transplant, but indicated that things could change rapidly. Boy did they, as I found out later. He wanted me to come back in three months for a follow up, then he said that within the year I would need the transplant. Not the news I wanted, but he didn't feel I needed a transplant right away. So, I had some more time to research. In January Tampa's Transplant team called to see what my status was. At that time I had taken a turn for the worse. I couldn't walk a flight of stairs, and needed 8 liters of oxygen 24 hours a day. I told TGH, (Tampa General Hospital), that I had met with Cleveland Clinic and they wanted to see me in 3 months for a follow up. The nurse, Kim, reminded me that they try to do things before you get so bad that you don't qualify for a lung transplant. I told her I wanted to wait for Cleveland Clinic. She said she would notify my local Pulmonologist and take me off of their list at TGH. She seemed a little pissey.

History II

I continued to work, driving truck, hoping that the symptoms of IPF, (Idiopathic Pulmonary Fibrosis), would somehow go away. I have always been a very healthy person so this was not something I was going to accept. When I came home from driving truck cross country I would visit my local Pulmonolgist to discuss any treatments that may help. He finally said that the only chance I had for survival was a transplant. I pushed him for someone doing research as an alternative to transplants, so he sent me to USF medical school. Come to find out it is really Tampa General Transplant Team. At this point I am willing to talk to anybody that will give me better news than needing a transplant. I went, with Lovely Linda to the Tampa General Hospital Transplant Center in October of 2009. They ran some breathing tests and talked about an experimental drug and test study that I may qualify for. By the time I left the office, I was told by Dr. Haddad that I didn't qualify for the study group. I was already beyond hope of recovery without a transplant. He also said I needed to be on oxygen because I wasn't getting enough to survive and I was setting myself up for a major heart attack or worse if I kept depriving my body of oxygen. I knew that I was in trouble. So I went home and they delivered all the oxygen equipment to the house the same day. Oh boy, now we're livin'.

Day 46

Took prescription for sleep last night, worked so-so. Man is it frustrating not being able to do things. I'm used to getting up and out early and being able to do whatever I want, including physical work. My mind says go, my body says woo. Anyway, took the dog to the Vet, early. Went to the store and the bank and did some work around the house, so I guess I'm not as useless as I think. This Stroke thing really sucks. Having trouble, still with my right side. Even typing is a challenge. I used to be four finger fast Freddy, now I'm 2 1/2 finger slow Moe. All in all things are progressing well. Thank you for your support.

History I

After discussions with the rest of my family, Chris, (my sister), James, (my brother), and of course Linda, (my wife), I went to Mayo Clinic in Jacksonville, Florida for a second opinion. I checked with my Insurance Company to make sure I was covered, and I was set to go. FYI. Be careful, and get names, dates, etc. from the insurance company. Come to find out Mayo Clinic is out of network, so I was stuck with a $6,000 bill.
Went to Mayo in January 2008. I was there for two days of evaluation and testing. In the end, same diagnosis, Idiopathic Pulmonary Fibrosis. This was even more devastating, because they said I needed a double lung transplant, like, NOW. That was quite a ride home with Lovely Linda.

Day 45

Well, I made a mistake it's day 46 today. Sorry about that. Not sleeping at all. These medications are really messing with me. Linda says at last count, I take 40 pills a day. Some are supplements, but most are prescriptions. Those of you that have been through a major surgery probably already know this, but for me this is uncharted territory. Some days you wonder was it all worth it. I know early on, after the surgery, I was still making funeral plans. Of course , the plans were just in my head. I couldn't let Linda know that I was thinking any such non sense.
I am so lucky to have Linda as my partner. More about her another day.
Went to the hospital again today, to have more blood drawn. How much blood do they think one person can give? I feel like a pin cushion. But, I feel great, today. Oh well, all part of the system, I guess. Oh, and I got some ambien to help sleep. I'll let you know how it works.
Tell someone you love them today.

History

This all started around June 2007, I was driving an 18 wheeled tractor-trailer cross country, when I met up with my wife Linda's brother Scott. We met up in Tennessee at a Love's truck stop. I had ants in my truck so Scott bought me some bug spray. He was always good about spending his dime to help people out. I sprayed the cab of my truck and we went into eat. We came out and went to our respective tucks for the night. I didn't think much of it at the time, but it probably wasn't the smartest thing to do. Sleep in a truck filled with bug spray. Anyway, I began a chronic, dry cough about this time. Every time I went home, which was about every 2 weeks Linda would tell me to go t0 the doctor to check out why I am coughing so much. Well, I finally went in December 2007. My Dr., Dr. Collette took an x-ray and referred me to a Pulmonologist. The Pulmonologist ran a battery of tests including a Pet scan, CT scan, and a Bronchoscopy which is a lung biopsy. He diagnosed me with Idiopathic Pulmonary Fibrosis. This is the same disease my mother died as a result of in 2005. Talk about scared!

Day 43

I forgot to mention that I got results from my 1st lung biopsy since leaving the hospital. They said there are no signs of rejection or infection. This will be an ongoing concern for the rest of my life. I will be having to undergo periodic checkups and biopsies. Oh what fun! Mitch took me to the hospital on Tuesday and waited for 8 hours for me to undergo the biopsy. Thanks Mitch. I think Mitch needs to find another friend who will allow him to have a life.

Friday was my first attempt at driving since the surgery. Fun for me, poor other drivers. I did okay, still weird on my right side with the weakness from the stroke.

Okay, enough for today. Do something kind for a stranger. Try a hello to someone you don't know.

Special Thanks

I would like to extend a special thanks to Mitch and Agie. Mitch has been staying with me, doing everything from mowing the grass to snaking the drain to cooking all the meals for the past 2 weeks. Thank you so much!!!!!!!!!!!!!! I don't know how I can repay you for your time and generosity. Agie has taken over for Mitch for the past few days. Thank You!!!!!

Welcome, one and all.

It's been 42 days since I received my bi-lateral lung transplant. I'm feeling GREAT!!! I can tell you, it's been a ride. Sometimes you are sure that you are dying, other times you think that you can do things the way you used to at 20 years old. I know, patience is what I need. However, I am a person who has trouble with patience. Thank you to everyone for the love, support and prayers you have given. It really means a lot to have so many wonderful people in my corner. In the coming Blogs, I will catch you up on the history of my ordeal. I will make it short, and hopefully, not boring. I would appreciate your comments along the way.

Have a great day, and remember to tell someone you Love them today!