5 Year Post Transplant

5 years ago today, right about now, 3:20pm, I received a very special phone call from the University of Utah Lung Transplant Clinic stating that they have a possible lung which might be available for me and could I get there as soon as possible. Are you kidding? I said YES and the rest is history. 5 years have gone by with no rejection of the lung I received and so many precious memories and fun experiences I have been given.
One of the drawbacks of a lung transplant is the medications required to keep the lung from rejecting a new body. They also lower the bodies normal ability to fight diseases. I have been very fortunate until this summer, a skin cancer invaded a gland below my left ear (parodit gland) necessitating surgery and some resultant nerve damage.
The cancerous tumor was removed and I am now undergoing radiation therapy for 6 weeks. The good news is a transplanted nerve may "come alive" during the year which will restore much of the numbness on the left side of the face and they also can do some plastic surgery - just have to be patient.  All in all, I am enjoying life with no pain and look forward to a wonderful 2017.
I have the most amazing kids, grand kids, extended family, friends and Doctors anyone could possibly ask for. Thank you all - Thank you, Thank you, Thank you!!! 

Decenber 2015 update

Isn't it interesting that, when things seem to be stable and smooth, you don't feel the need to post things as much.  I guess it is human nature.  Someone mentioned the other day, why I hadn't given anything new on this blog and I had no answer.  I'm not even certain anyone reads it anymore but if so, just a quick update.
I am feeling pretty darn good and this lung I received has been fantastic; we get along just fine.  I have just returned from the University of Utah Hospital a few weeks ago and past the tests in good shape. Even increasing my lung capacity by 5% from a year ago. May not seem like much but the trend is what's important. My weight is up to 145lbs. My life before the Fibrosis was 155lbs so I feel much stronger now than last year.  The average life span for post lung transplants is about 5 years and I am now, this Christmas, finishing my 4th year.  At the "U" there is a transplant patient who is in his 11th year post transplant so, there's my goal,... and beyond!  I will take and enjoy whatever I am given though.
Families all good.  Chris is doing much better and pretty much recovered from her aneurysm. She is one strong person. My oldest son (Bryan and Janalyn) moved the family back to Draper and my youngest son (Carter and Amy) moved from Phoenix back to SLC (Daybreak Community).  Fortunately I still have Jani and Brock here in St. George.
Mom is 96 years old and up to just recently was defying age but then time began to catch up and she was diagnosed with cancer.  She now is in hospice care in her home and as such, we are all spending as much time as possible with her in South Jordan. I'm having a difficult time realizing this was the last Thanksgiving with her and will be fortunate to experience Christmas together.  Her attitude is amazing and upbeat and anxious to move on and reunite with loved ones on the other side.
I am so thankful to have family and friends, like you, who make everything so meaningful and complete.

Dwight

I'm still here!

Moved

It seems I always have to begin these posts with an excuse for not posting often.  My bad.
Chris and I have moved to St. George, Utah to take advantage of the warmer weather and the lower elevation which apparently is supposed to be better for my lung.  Feels good to me so far.  We have been here about 3 weeks and things are getting better every day. We've moved into the Sun River community which has a clubhouse, pool, golf course,  and activities which I can't keep up with.  I also am grateful I won't have to tolerate another temperature inversion this winter.

We have gone from over 3000 square feet to 1400 square feet in living space, and so far, I haven't missed the extra space.  It's actually easier to deal with and comfortable enough for our needs now.
Just a few years ago, all my children lived in Draper. Now Carter and Amy live in Phoenix, Bryan and Janalyn moved back to Draper.  Jani and Brock are in St. George in their new home so that's been nice.  Now I'm equal distance from my boys.

Just went to my 50th high Olympus/Skyline High School reunion.  What a fun experience to see so many good friends again.  They all looked great and the memories came flooding back. The class of  63 was a very good year.  (sounds like a good wine). I am so fortunate to be able to attend and still be around.

My overall health is good and getting stronger.  I am now a massive 135lbs surpassing my junior high school weight.  What is strange is I've gotten shorter by almost an inch!  What's that all about?  My mental age still remains at junior high school level as always, so I have that going for me.

My cell phone is still the same at 801-541-1673, (no home phone anymore), so if you're  in the Area, please give Chris and I a call. We would enjoy visiting with you.

Dwight

Feeling fat!

Still trying to pound down the calories.  I'm eating everything I can along with nutrition drinks.  You know things are strange when Ensure drinks are beginning to taste good and I can do without Cokes. It is working as I have been able to increase my weight from 117 lbs to 128 lbs.  I'm going in the right direction with 140 lbs as my goal.  I feel as good now as I have before the operation.

Life is tough but I'm going to be tougher!  Life is also good and I appreciate everything I have.

Just a side note...The Doctors and Nurses at the Univ. Of  Utah are fantastic and Dr. Barbara Cahill and staff at the Pulmonary Clinic #3 are so professional and caring. Dr. Raman, Kelly Peterson Short, Tauna Maughan;  they're all exceptional people and treat you like family.  I also owe so much to Dr. Beth Scholand for helping me get this transplant!  I owe my life to these people.

I wrote a heartfelt letter to the donor family following the protocol the hospital requires to protect privacy.  I do not know who the donor was and it is up to the donor relatives if they wish to contact me.  It is such a sensitive thing given the fact that my life was extended at the cost of another life being lost.  I just want them to know how much I treasure this extension of my life.

Maybe some day...

See you all soon.

Dancin' The Night Away

Just one of the many nights since Christmas Eve 2011 that Dad has been able to enjoy with his granddaughters because of this generous lung transplant.  Events like this don't pass without all of us thinking the same thing:  that despite all of the financial and health challenges, all of the struggles to recover, all of the frustration with accepting new norms, that each and every day is a miracle ..... and each and EVERY picture with Grandpa now is priceless!

Good News!

I haven't posted very often and that's probably good news as things are moving along without any major problems.  Also, most of the good posts come from my family, especially my beautiful daughter, Jani and she has been more than busy moving into a new home in St. George.

Just a quick update.  Wait a minute! First I need to thank all of you, my friends, who have stayed in touch and helped in so many ways through this health challenge of mine.  It means everything and I am really blessed to have such great friends and family.....worth fighting for.  Every day is a gift.

I met with Dr. McKeller a few weeks ago and the news was good.  The lung is working fine and also the heart is able to function more freely.  The pericardial sac around the heart apparently has eased or something, allowing the heart to function better.  Music to my ears.  It did beg the question however as to why I am so fatigued and unable to sustain any effort without gasping for air.  Looking at my weight which has been dropping (117lbs) he said that's easy; you have very little muscle to perform the functions you're asking your body to do.  I had to admit, I haven't been eating enough.  I can see how someone can become anorexic as I have had little appetite.  They threatened to put me back in the hospital unless I start eating better and Thar's all I needed to hear!  I am know on a 2000 calories per day  with protein drinks and such.  This past week I have gained 5 lbs.  Not much, but at least it's going in the right direction and even feeling stronger.

Well, enough about me.  Hope all is well with you and I am always looking forward to seeing any of you whenever and often.  Until the next post.

Still Pushing Himself

Carter snapped this picture of Dad doing his morning push ups while they were in St. George last weekend. What a stud!

Breath Of Heaven

As I was out running some last minute errands today, the Christmas song "Breath of Heaven" by Amy Grant came on the radio, and it brought back a flood of memories of last Christmas Eve and my Dad's lung transplant.  I remember hearing this song on Christmas Day, driving home from the hospital and how the words to the chorus had taken on a new meaning to me as I thought of my sweet dad lying in a hospital bed, trying to breathe with his new lung.  I'm overwhelmed with emotion and gratitude that he is still here with us one year later.   I'm so grateful for the donor, their family, the doctors and so many of you who have helped him and our family in your own special way.  But mostly I'm grateful to God, for his son, for their mercy and for the "breath of heaven" that our family has constantly felt surrounding us this past year.

Merry Christmas everyone!

Chorus:
Help me be strong, help me be, help me
Breath of Heaven, hold me togetherBe forever near me, breath of HeavenBreath of Heaven, lighten my darknessPour over me Your holiness for You are holy

Read more: AMY GRANT - BREATH OF HEAVEN LYRICS 

Goodbye Coach Majerus

Like any good, red-blooded Ute fan, Carter made sure he and Dad made it to the Huntsman Center tonight to honor the memory of Coach Rick Majerus. If Bryan and I weren't living 300 miles away we'd be right there with them enjoying our beloved Cracker Jacks and Red Vines with Dad in the familiar comfort of the Huntsman Center. We've all enjoyed countless basketball games with Dad over the years and feel so blessed that he's still here with us today almost one year after his transplant surgery.

He's been slowly improving over the past few months from his heart surgery and we'll hopefully continue to see the swelling go down in his lower body. He still tires easily, but is as determined as ever to building up his strength to be able to do some of the things he loves to do.

Pictures like this one are priceless to our family now. Lets hope we'll see many more "Ute" family pictures in the years to come. Thanks for the memories and may you rest in peace Coach Majerus. GO UTES!!

He's Home!

Dad was finally released from the hospital yesterday! They have pulled the two drains and will monitor how he's doing over the next couple of weeks to see if this latest surgery did the trick. We're watching for swelling in his lower body, rapid breathing and the extreme fatigue he was feeling before the window pericardial surgery and hoping that those symptoms don't come back. If they do, then we'll discuss options with his doctors at that time.

Dad has loved hearing from so many of you and for the many hospital visits he received over the past few weeks. Jan and Anne Bagley, Jim and Beau Carlson, Lynette Randall, Jay and Tammy Minick, Keith Wallace, Gail and TC Conlin ..... the list goes on! Thank you for your encouraging words and prayers. Thank you to the sweet neighbors and members of my parents ward who have brought in meals and checked in daily with our Mom. Thank you to the wonderful nurses and doctors at the U who are always so compassionate and patient with all of us. And thanks to Dads lung donor and their family for making all of this service and compassion possible, and for giving my Dad a second chance at a beautiful life.

Out Of Surgery Now

Dad made it through the surgery just fine and is recovering now.  We'll be able to see him in about an hour or so.  Dr. McKeller came out and explained that he was able to create a small window in his pericardial sac to help drain any fluid build up in the future.  He said that the outer pericardial sac - the shell that holds the heart) actually wasn't as hard as he thought it would be, but that the inner sac, which is actually attached to the heart, almost like an outer skin layer that has blood vessels attached, was actually thicker than he was hoping to find.  This could be a problem because if, in a couple of weeks, Dad starts feeling the same symptoms again (compressed chest, lower body swelling, fatigue) it means that his heart is still constricted, and Dr. McKeller said that trying to surgically remove the inner sac is a much riskier surgery because of the high potential for blood loss.  They have taken samples of the sac which will be evaluated for any signs of disease, TB or fungus (which he said he thinks is highly unlikely) and they said we won't have the results for a month or so.

So, the good news is that Dad made it through the surgery with flying colors, that his new lung is actually doing awesome, and that this new window should help with fluid drainage.  Hopefully that will be enough and he'll be feeling much better within a couple of weeks after recovering from this surgery.  We will all be praying that he continues to feel better and not worse over the coming weeks so he can finally have a chance to enjoy his new lung.  If all goes well, he should be able to go home on Sunday.

Here we go ...

Dads the one in the blue. I'll feel a whole lot better when he's in the red. Coincidence that the color "red" represents the finish line of the surgery? I think not. :)

Twas The Night Before Surgery ...

Since the fluid build up has increased in the last 24 hours, they're just going ahead with the surgery to put a window in his pericardial sac. Surgery should be around 7:30-8am and will last about an hour. If all goes well he should be home by Sunday. The girls and I made it up from St. George just in time to come see him and get some much-needed hugs from Grandpa. We had a little family prayer with him from Annie and we all agreed that we feel really good about tomorrow.

On our way into the all-to-familiar lobby of the hospital tonight we ran into Keith Wallace, one of Dads best friends, as he was just leaving from visiting Dad. And my cute niece from my previous marriage, Lynette - a freshman at the U- had come to visit Dad earlier today which was great - he loves an excuse to hear all about campus life and her plans at the U.

Thanks to all of you for everything - we love you!

Here's the latest ....

Well, unfortunately the fluid around Dad's heart didn't drain completely and as quickly as his doctors would have liked, so the plan as of tonight is that they will remove the chest tube tomorrow morning, then wait 24 hours before they can do another echocardiogram to get a good look at his heart.  From what Dad told me tonight, the doctors will then go ahead and do the more minor of the two surgeries where they will cut a small window in his pericardial sac and insert a small drain that will remain there permanently to allow the fluid build up to drain into his body.  Because of his recent blood clots, his doctors would rather wait to do the more invasive heart surgery to remove the pericardial sac completely when his body has had more time to recover from the blood thinners and such.

So, it looks like he'll be having surgery sometime on Thursday and from there, who knows?  He thinks he'll be going home right away, but I think we need a bit more information from the doctors before we can plan on that.  If I know my dad, he'll do and say anything to get out of there in time to go to the Utah/BYU football game on September 15th.  To be honest, I'm fairly confident there are a couple hundred of his family and friends who love him enough to ban together, bust him out of there and wheel him down to the stadium ourselves!

As I was saying goodbye to him on the phone tonight, he said "I just don't want this to be how my grandkids remember me .... all hooked up to machines lyin' around in a hospital bed.  I've got stuff I need to do with them!"  He's got places to go and people to see, dang-it!  Don't worry Dad - I'm pretty sure when they think of you, years from now, the pictures in their head look a little something more like this ....

Better News Today

Bryan just emailed this update Sunday morning:

Just met with Dr McKellar up at the U who is the Cardiothorasic Surgeon. He looks very hopeful and likes the progress that he sees with Dad at this point. The swelling in legs and abdomen is continuing to go down and is breathing a little easier now. The plan looks like they will pull the drain from his pericardium tomorrow, keep him overnight and repeat the echo. If all goes well then he will go home.

IF, when Dad gets home and he feels like he is "stalling-out" again and not feeling better then they will do the Pericardectomy within the week. All of this depends on HIS symptoms and how he feels. He should be able to walk on treadmill for 20+ minutes without a problem. I really like this guy, he is definitely looking to "NOT" do the procedure unless it will make him feel a ton better. He also mentioned that the risk of this procedure is not very high with Dads condition.

Jake, Josh and Grandpa O :)

Home Is Where The Heart Is

For those of you who haven't heard yet, Dad's been back at University Hospital since Tuesday 8/28/12 because of the increased swelling in his legs that has spread into his abdomen.  It's the reason why he wasn't at the Utes season opener last Thursday - literally being in the hospital is THE ONLY thing that would keep that guy away from a game at Rice Eccles :)   (Warning:  I know I'm going to mess up the medical jargon here when I try to explain what's going on with Dad - especially since I'm here in St. George and haven't heard it first hand from the docs like Mom and Bry and Carter, but  we wanted to get something posted anyway.)

He's been feeling progressivley worse and more fatigued since his blood clots last month.  His transplant team turned him over to the cardio thorasic team at the U to try to figure out what was going on, and after coming in for a CT scan and numerous other tests, the docs found that he had a lot of fluid building up around his heart - inside the pericardial sac that holds the heart.  They were all stumped as to what was causing the fluid build up, but they said that that pressure on the heart is what's been causing his swelling, fatigue, shortness of breath and slow recovery.  He had a right/left heart cath done on Thursday morning where they were able to insert a tube to drain the fluid and also were able to get a picture of what's going on in his heart.

They found that the pericardial sac has hardened up into a shell and either needs to be removed all together, or will have to have a small window cut out of it to prevent future fluid build up. Basically, he has to have heart surgery sometime here in the next week or so. The doctors told us that this is most likely a result of the surgical complications he endured during his lung transplant almost nine months ago.  What was supposed to be a 3-4 hour surgery back on Christmas Eve ended up taking almost 11 hours because his aorta was accidentally knicked and he almost bled out on the table.  Basically, he has to have heart surgery sometime here in the next week or so :(

They're watching him now and are running tests on the fluid that's still draining which will determine how urgent the need for surgery is.  Hopefully it will stop draining altogether and he'll be able to go home for a couple of days before being readmitted for open heart surgery.  His attitude, is of course, awesome and although we're all extremely nervous about how well his frail body can endure a surgery like this, we're also relieved that finally there's an explanation as to why his recovery has been so difficult - especially when his new lung has been doing so well.  I still have questions that will hopefully be answered soon about the effects of having your pericardial sac removed, the effects of heart surgery on his new lung, etc.

We'll keep you posted as soon as we hear anymore news.  A day doesn't go by that we aren't humbled and grateful that he's still here with us and fighting for the life he loves so much.  We love all of you more that words can say and are continuously grateful for your prayers and concern!

Home Sweet Hospital

So just when we started bragging about how great Dad is doing (goes to the gym daily) and how awesome it was that he hasn't had to be re-admitted to the hospital since coming home in early Feb., here we are. Dad came in yesterday for a regularly scheduled broncoscopy and biopsy but his docs weren't able to finish when they noticed his o2 sats kept dipping during the procedure. Long story short, some ultrasounds revealed a blood clot in his calf - part of which had traveled up to his new lung. The good news is that they caught it in time and now have him on meds that will dissolve them and hopefully prevent anymore from appearing. The bad news is that he'll be in the hospital probably til Sunday morning, along with now having to add some injectible meds to his daily pile of meds as well as more frequent visits to the clinic for blood draws.

Needless to say, it's reminded all of us of how fragile his condition still is, despite his positive attitude along with the "oh, I'm fine's" and contagious smile. We'll keep you all posted and continue to be humbled and grateful for your many prayers and financial contributions that have kept him here with us a little longer.

Six Months Out

It has been a little over six months from the Christmas Eve lung transplant.  I definitely consider myself a very lucky man as I am still alive and able to enjoy, among other things, a wonderful 4th of July family reunion with our extended family this week at Draper Park.  They are simply amazing!  What a treat to get together with them all and see their families growing so beautifully.  Not only that, my daughter Jani married Brock Belliston on memorial day weekend in St. George which I was able to attend and participate in the wedding. Priceless!!!  Grand kids are the best.  Without the transplant, I would not have been here.  Yes, I am a lucky man.

I wasn't able to golf with them at Wasatch State Park on the 4th, which is our tradition, or hike, or a few other things, but I am a patient son of gun and know it will come soon.

As to my condition at this point, I tire easily and my breathing is somewhat irregular.  My weight is still possible to pass as a prisoner of war model, BUT - I am breathing on my own and every month I see progress.  I asked my Dr. last week to tell me straight of I was on target at this post operative stage and she said definitely and that she was pleased.  I'll take that.  I undergo another bronkoscopy end of the month to check for any rejection from the lung, but I think it likes me.

Life is good and it all comes down to faith, family, and friends.  Thank you all for being there.  You are all the best!!!

Dwight Osborn (Ozzie)