SIX MONTHS and counting!

WHEW!

It's been a busy and fulfilling summer and I write this as the school year gets underway!
Yes - it's back to the classroom and the countdown to potential retirement begins!

Three more school year openings and only 2 more closings - 01 April 2009 is the potential date.
I'm starting NOW to plant the seeds for what is to come following :-D Any ideas or openings in an area that is more metropolitan than Southern WV? LOL

Medical things... I've been to Duke, to my local GP, my local Urologist and my local Dentist and everything is checking out pretty much "ok" One spot that looks like a mole is causing some minor concern but it should be gone soon - and I'm not due back at Duke until MONTH EIGHT!

Summer has been full of music! I started the season with the UMC at Lake Junlauska in NC doing the advanced bells and then flew (literally) to Area X and their festival in Nampa ID. Shortly following a brief home return I went to teach at the National Seminar in Milwaukee.

An interruption in the travelogue here to say "BELL PEOPLE ARE THE BEST!" I've not ever felt so warmly welcomed at any event than the bell events! Thanks to ALL the people who have been so supportive thru this change in life!

Later in the summer the Presbyterian sponsored Massanetta Springs Music Conference had a vacancy for the adult CHORUS! I got to be a choral guy for a whole week! Following that, I was the bellguy for the Area II READ AND RING in perparation for conducting their area festival next summer in NY. I closed the summer season with a one-day workshop inmy hometown of Charleston WV with the Area V AGEHR workshops.

All in all it's been great! Looking forward to posting again soon (back to "normal?!?")

Tim and healthy kid

HAPPY FATHER'S DAY.... and....

Happy ONE YEAR Kidney Kronikles!

Interesting that it's been only a year with so many things happening in just about 365 days! It's of double interest that it's Father's Day!

If you read back over all these posts through the year, one thing you might recall is the fact that PKD is a genetic disease, and it came to me through my paternal side of the family.

Grandpa was about 34, as I recall, and Dad was 36 when PKD took them. I was six years old and my dad was 12 when we both became what some called "the man of the family" I remember being told this at 6 "Now YOU are the man of the family!"

It's certainly a good opportunity for me to step way outside my privacy curtain and comfort zone and give you readers a snapshot of dad.

I'm told that it's pretty much impossible that I have any recollections from 6 years or before, but impossible things happen - don't I know that! I actually DO have clear memories that are etched indelibly on my mind's eye, along with emotion that is as fresh and raw as it was almost 50 years ago.

Dad, in contrast to me, was a quiet, contemplative man who I remember exiting the back door when neighbor ladies came into the front door. He would say very little unless pressed to talk and was well respected among his friends and workers. I have memories of all of them simply saying that he was a "good man".

He and my mother had been married almost 11 years before I was born. He was 30 and relatives recalled that he was so proud to hold me and was the one who carried me from the hospital, with mother's blessing. Recently, someone who remembered my birth asked about my strong memories when I was young. "Who do you remember more from the beginning of your memories to when you were six?" Instantly, I said "DAD"! "I'm not surprised" came the response "because he was the one who took care of you the most when you were small"

I was intrigued but not surprised. There's the key that explains my memories!

I remember warm summer nights after my bath, when, dressed in pajamas and with bare feet, dad would drive me in his blue and white '56 Chevy into Spring Hill to the Esso gas station right across the railroad tracks for ice cream.

I remember being his right-hand kid and "helping" him wash and wax the car. I got the bright (for a child) idea that the silver polish under the kitchen sink would make a great polish for the "silver" bumper of the car, pulled close to the garage doors at the front of the house. GREAT idea! It worked! At least it appeared to work to my 4-year-old eyes. Hey, if that worked so well to make the bumper look great, then it probably will do the same to the garage doors!

I liberally applied the silver polish from the heavy can to the garage doors as high as I could reach. I remember being euphoric as I was helping dad!

It took him about 4 hours to clean the polish off the doors and then repaint them to their original white. It seems that the silver polish worked well as a paint remover!

Recollections flood in like welcome guests as a party; putting up the new picket fence to surround the front yard, driving to the airport in Charleston to watch the planes land and take off (interestingly the very same airport that I now do the majority of my flights from), nights in a rowboat going to the hunting lodge in Pocahontas County where dad was born, excursions and short jaunts in the '56 chevy, including a nice trip to Myrtle Beach.

Dad wanted me to see the ocean, which he loved. He was a Navy man from WWII and, in that one trip, he passed that love of the ocean on to me! There is a calm and peace that never fails to permeate every fiber of my being when I'm near an ocean, and I know that is a gift that he gave me.

He decided that we had to go to the ocean in the summer of 1959. He wanted to be there to see me experience the ocean for the first time. By 1959 he knew.

He knew that he had PKD. The first diagnosis was Bright's Disease, an early name for PKD. The doctors went through all kinds of tests and diagnosis in the mid-'50's when technology and transplant were theoretical dreams. Finally the conclusion was confirmed with PKD.

I still find it hard to imagine what it would be like to be 33 years old with a wife and three-year-old son and to be told that you have a disease for which there is no cure. He experienced pain so severe that he could not stand. Fingernails turned blue and headaches beyond belief with the accompanying stomach distress precluded any activities for 2-3 days. When they would let up, at least a day or two of total exhaustion followed - and absolutely *nothing* could be done to reduce the blood pressure. Pain medications only dulled the brain so it would not register the extreme pain which was still hitting the back and lower waist with a vengeance.

He never complained. Not once. Not ever.

Unbelievable. Most people can only imagine what that must feel like. I know, beyond a shadow of a doubt.

On a sunny August Friday, with the Kennedy-Nixon debate anticipated in just over a month, he lost his battle with PKD. It happened quickly. The failing kidneys had flooded the system with kenin, which controls blood pressure. The mega-release of kenin drove the blood pressure to astronomical heights of 200/280. Veins and arteries just aren't made to withstand that kind of pressure and one, in the very center of his brain, burst. It was over fast.

Battles and struggles come and go, with wins and losses. Some continue for generations.

HEY DAD! WE WON!! HAPPY FATHER'S DAY!

TESTS & TRAVELOGUE - 4 months!

HEY!

Are you all still reading this? If so, drop me a note or comment!
I appreciate all of you keeping up with this progression of surgery and life that I'm in the midst of! It's been a really joyous progression of late as I rediscover how it is NOT to have kidney pain and the complications that diseased kidneys make in daily life!

Duke's MONTH FOUR reports are in (actually 4th month was a few weeks ago - but they count a little differently - starting from the first return visit) and ....

KIDNEY FUNCTION NUMBERS ARE EVEN BETTER! I dropped .1 lower in the creatinine count which is WONDERFUL! All the other tests and levels are "perfect" to quote the team!

Now for the travelogue!

I went to New York City with 22 students and parents to perform in Carnegie Hall! What a blast! We did Mozart's REQUIEM with orchestra and combined choruses from Hawai'i, West Virginia, Texas and New York! Got a standing ovation! Amazing for the NY crowd!

One of the little triumphs occured early in the trip, when we had unpacked at the Grand Hyatt next to Grand Central and finished a quick lunch downstairs in Grand Central Station. We headed out for Times Square and about 3-4 blocks down I got stopped by a crosswalk light that was not in my favor. Close behind me were several of my students, including 2 football players, one cross-country runner and two girls basketball players, covering ages 15-17.

"Mr. Waugh -" they panted " PuhLEEZE SLOW DOWN (pant) WE CAN'T KEEP UP!"

Hmmm - here's a 50-something ;-) guy just four months out of 2 surgeries and he's outwalking teenagers who are in shape?!?!?! YES!!!! I'm BACK!

Visits included the Today Show and a dinner-boat cruise to the Statue of Liberty at midnight. NICE TRAVELS!

I'm hoping to be back in full ( think I'm close already) and doing some handbell and choral events over the summer. I'll post updates and travelogues as I can - if yo're still interested in reading the porgress of the musical pilgrim!

Duke says that we might be going from 6 to 8 weeks until January, when I'm cut back to seeing all the "normal" physicians again! WOW!

All the best for a fun and relaxing summer!

Tim & Kid (both plugging away!)

....ON LOSS

This morning, 23 June 2006, my aunt "Jo" passed away quietly in a nursing facility. She has been, throughout life, a vibrant person without much illness. She was the last of the living bothers and sisters of my maternal grandparents who raised their family for many years in the very same town that I now live.

For those of you who are trying to track the unusual network of family, Jo is also related to Ann and lived for the past many years with Ann's mother.

Any time a loss of this nature occurs, it gives family members and others a time to pause and reflect on mortality as it relates directly to us. Youth have the hardest time with this because we, as humans, aren't "wired" to feel mortal. As we grow and age, we see the reality of becoming mortal and fragile. For some, it arrives earlier. Others arrive there a little later.

People closer to me often react to my "different" take on death. Of course, one is sad for the simple fact that we don't have the opportunity for a hug or a phone call or the unfailing cards at holidays, but I'm honestly excited and heartened that each of us will be in a place that will be much better with more understanding of the life that we've just completed.

One of the transitions that I saw with my upcoming surgery - about a year or two prior to the surgery - was my reference to "the body" which became very separate from "me" through that time. I'd frequently, without really thinking about it, say things like "...The body isn't having a good day today" not realizing that I was genuinely separating, and separated, the body physical from the energy or life-force that was me.

Read back over some of the earlier posts- it's there - and I'm sure some of you remember hearing me say things just like that.

Interesting that, now, it simply has stopped. It doesn't happen. Life-energy and body physical have become one again. But, with great assurance, I know that life-energy at some point will separate from the physical and will become at-one with the creator and all of creation.

"... as we wait in joyful hope....."

Tim & kid

THREE MONTHS! WOW!

...and it seems like just a few weeks - and then again - it seems such a long time ago - strange!

Things with Duke and with the local doctors are boiling down to the adjusting and tweaking of minor things that need attention. Most all of the major events are [hopefully] over for a while. Indeed MONTH THREE is a milestone and I'm seeing "back to normal" (if it ever WAS normal) at school and church. Someone asked one of the people at school how I was and got the response "why are you asking?" They have become adjusted to my return! The person asking was totally SHOCKED to see me walk in - so we're celebrating the dichotomy of a group that has returned to treating me normally (with all the accompanying return of responsibilities and frustrations) and a group that thinks I'm at home in bed and treats me as if I'm fragile.

The BEST thing recently, which might be a repeat of previous comments that you've heard, was the Duke physician that said...

We didn't put the kidney in for you to become fragile and disabled, we put it in so that you might live!

So let it be!

In that line, I'm sharing a modern "psalm" that I keep with me in my briefcase as a reminder. Interestingly, it's been in the briefcase for over 14 years. It's from the March April 1992 issue of ALIVE NOW! Growing Toward Wholeness. Some I've accomplished as live goes on. Some I strive hard to accomplish. Those who know me well will probably find me within these thoughts.

SURVIVAL PSALM

Therefore be vulnerable first to others' kindness.

Let such affection wash over you and fall deep within.

Cleave to those who are steadfast. The best love is

stubborn. Cleave to those who are steadfast

Love as you are allowed, not as you desire.

Distill the quivering into compassion for the needy

Listen for birdsong. Learn from the birds to defy

silence and become one with the Song inside you.

Seek to be honest with yourself. Let all feelings

just be. Denial grants them the power of terror.

Find someone whose job it is to hold you while you

sob. Thereby discover the strength beneath weakness.

Practice humility before the order of Music and the

xtravagant fragility of flowers. For beauty heals pride.

Eat good food with good friends. Let the world's weight

fall from your shoulders into teasing and laughter

Each day the earth rotates toward Eastered light.

Lean on the earth. Surrender control, fall into the

infinite grace of God's YES!

*Mary Zimmer

Pax Vobiscum

Tim & kid

Support Tim With A Generous Gift - May Update

As Tim's life continues to return to a sense of normalcy -- a return to full-time teaching, continuing on the organ bench, traveling to workshops and festivals -- we would like to keep in front of you the ongoing financial needs that are now a part of Tim's life.

His anti-rejection medications are currently costing him over $1000 per month. For now, insurance is picking up the cost -- but in just over three years, Medicare stops paying for these medications. There are co-pays, deductibles, non-covered expenses, and other incidentals that eat into Tim's budget on a more current basis, and he has mentioned this issue in a previous post.

As Tim was preparing for the nephrectomy and transplant, Duke University's transplant counselors suggested that he establish a 501(c)(3) to help defray the long-term expenses that he will face. Having known Tim since 1990 from serving almost eight years with him on the AGEHR Area V board, and now pastoring a church that was willing to "donate" its 501(c)(3) status for this purpose, I established a tax-deductible fund in the church's name to meet this need.

Tax-deductible donations can be sent to:

Waugh Fund of First Church

PO Box 232

Wellington, OH 44090

Unless you specifically request a mailed or e-mailed receipt, please use your cancelled check and bank records as proof of your contribution. All funds go directly into this account and will be disbursed according to policies adapted from another 501(c)(3) entity.

Gifts have come from community/professional ensembles, from individuals, from love offerings taken at events, and from AGEHR areas. There are even those who have contributed more than once.

If you are having a meeting, festival-conference, or workshop, I can provide a flyer in Word format that explains the fund, explains Tim, and advises how a tax-deductible donation can be made. Or, feel free to link to this page from your web site. Please continue to remind your constituencies, especially those who have worked with Tim but may not have heard the story of his transplant, that there is a way to honor Tim through this ongoing need for financial support.

If you have any questions, need more information about giving to this fund, or would like the flyer file, please contact me at bdburke52@aol.com and I will gladly respond to your request.

Thanks for the continued outpouring of prayers, support and love for Tim (and Ann!) as he returns to his pre-transplant level of activity.

Regards,
Brian Burke

DEBUT [with the kid] FESTIVAL

Greetings from Hendersonville NC! I've just finished my first festival back in the saddle - the Blue Ridge Festival with Connie Engle! What a grand time we had, and I'm in a lovely B&B nearby!

One special thing was having Ann and her mom here for their first festival experience. I got to introduce Ann to the gathered group and dedicated our performance of Sherman's Grazioso (which is a wonderful celebration of life renewed) to her. When I introduced her she received an extended standing ovation - a deeply moving way to help me express the unexpressable thanks and deep appreciation I have for her - thank you bell friends for helping me say something that I can't ever repay and have trouble even expressing...

When words fail......music speaks.....

A very special day of renewed "firsts" with bell people - some of the very best people in the world!

All the best from a content and tired.....
Tim & kid

A POST ON THE FLY.......

....hmmm - well - that might hurt the fly and could be hard to write that small.......:-D

YUP! you can tell that I'm back to it - the end of day 2 - fully back in the classroom.

Things are going pretty well - especially considering that I found out on Monday that we had TWO performances today! ONE was for the WV Secretary of State - NO PRESSURE of course!

GEEZ! is THIS welcome back?

T&K

OF MONTHS AND MIRACLES

[Apologies to those who check regularly - I had a thought that interest here was starting to fade, but I see it might not be! Don't be quiet - you're welcome to comment below!

ALSO this is a post that actually started more than a week ago - and kept growing I'll have to just post things in segments? Thanks again for keeping up! ]

OF MONTHS.....

It's been just past two months [ed. note - this is almost the 10th week! WOW] since the big surgery. I'm figuring that most of you don't live life in the days and weeks much unless you've recently had a child. The experience has been both exciting and frightening!

For those checking in for updates - the white blood cell count at last check was up to about 4.4 which is just past the range of 4-10 that Duke likes. I'm moving up slowly and they've chosen to keep med levels at the same spot as before to allow them to climb. They've removed all the antibiotics and antivirals which is both good and bad. As time goes by the system will become a bit more resilient to invading germs but I still have to be cautious in what gets in (food things) and who I'm around (lest someone sneeze on me!) The HUGE news is that, following spring break (the week after Easter) I'll be trying "back to work full time"!

I'm looking forward to getting to try my hand again at conducting a bell fest as well - very soon! It's always a "test" to see if one still 'has it" and it will be a good time for me!


......AND MIRACLES

In the season of Lent just past and Easter that comes quickly, I'm happy to reflect on miracles. Certainly and without a doubt all of your support through prayer and good thoughts have been one of the miracles for me, along with the certain miracle of the nephrectomy and transplant.

I would never minimalize this truly miraculous event that has rejuvenated and renewed life as I know it. I still sit in awe and some panic to know how far I had slipped before this surgery and medical miracle that wasn't available to my dad just 45 years ago. PKD was a certain death sentence, and I had entered that cycle in the last months of 2005.....but...

..I've had my attention drawn to things that some might consider some of the mini-events of life and look again and again at the miracles that happen BECAUSE I've had the transplant. I'm sure you're confused with this, so I'll give you some examples that have surfaced....

* a former student - very talented but going through a rough spot in life that separated him from me - came up to me to ask how things were. The opportunity to talk patched many of the rough spots we had prior to his graduation. BOY did I ever celebrate that evening.

* two friends separately mentioned to me that they had experienced a death in their current life experience. I said a few words, in a feeble attempt to console and not knowing if it would help (know you've been in those shoes). I was warmed by hearing from them that they had shared my words with the families (in two separate instances) and that both the families and they had been consoled and given heart by my attempt to console. We never know how we impact another!

Just two of the many examples that I've noticed recently! I continue to be blessed with these random occurrences!

Remember how important you are to me and to those around you!

Don't forget to post a comment (even just a HI) if you're still reading all this! I'll try to do better at keeping up with the writing!

Tim & Kid!

A GOOD SITE

A handbell friend gave me a heads-up on this site! Check out the sponsor of the day for today! [3/28]

http://www.goodsearch.com/

I'd like to recommend it and ask that you put the PKDFOUNDATION in as your charity. We ALL do searches daily, and this is a wonderful way to raise money for PKD

There are more than 600,000 diagnosed cases of PKD across the US with more than twelve and a half million cases in the world. PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined. ALL of these horrible diseases need all the publicity they can get! Join me in supporting PKD through this site! Hopefully a cure isn't too far in the future!

Updates after the bloodtest tomorrow - hopefully the cells will be more numerous! THINK WHITECELL!

Tim & kid
Almost TWO months!

WEEK 7 - Duke update &etc

First!

I'm fine and the kidney is in good shape! YAY

All the reports from Duke were good except one that is a little concerning..... the white blood cell count is 3 points below acceptable.

It's probable that it's a direct effect of the Campath that I was given just before transplant...but we've changed or dropped three other daily meds that could contribute. I'll still have standard blood tests weekly and hope that next test will show a rise in numbers!

INTERESTING sidelight - I had lunch with Ann today and - out of curiosity - asked a question of her. You should remember that, post-transplant, I found out that I really didn't care for coffee and since that point I haven't made a single pot in the house. BEFORE the transplant I certainly enjoyed the coffee!

Turns out Ann HATES coffee........hmmmmm.......go figure!

Think WHITE cells WHITE cells!!!!!

Tim and kid - doing great!

WEEK SEVEN with random thoughts

WOW It's been seven weeks with the new addition!

I'm anticipating routine things like blood tests and exams on Wednesday at Duke without anything major going on - and hope that's exactly what happens!

Take a moment with me and include a friend in your daily thoughts and prayers... from my PKD group (one of many support and chat groups on the web) a friend who is known to me as Karl in Maryland has - TODAY - received a kidney from his wife! We had exchanged e-mails on the group as well as off about the things I've been through in the past months and I know that his transplant will be just as smooth as mine! I feel honored that I can share my experiences which might benefit others that are right behind me on the path!

All the best to Karl and his donor-wife!

I was able to return to school for a half day this Monday and Tuesday and was greeted with the news that the local television station would be arriving the period right after my "half day" would be done. They were coming to interview students and me about our June trip to New York to sing in Carnegie Hall! It was a fun scramble to put together some choral selections for a television interview as well as prep for the interview! I was very pleased with the final product and the editing of the story!

On a note of concern, one of the distinctive classes that I teach ( and feel qualified to teach) was removed from the schedule next year without my knowing about it.

The school decided to eliminate my handbell class for next year - for reasons that I'm not entirely sure about. One bit of information says that classes next year must have 16 students to form. I usually have 10-11 students in bells with the 5 octave set we have. That keeps the students busy and involved. I heard about it in time to have it announced that we would offer the class next year, but the announcement was made on day 4 of the five day process when many of the students have completed the process.

I certainly can't predict how this will turn out - certainly I'm quite concerned and disappointed that this valuable class that needs to be encouraged in the school might be eliminated through a series of errors and slip-ups.

In the stream-of-random-thoughts line, it's interesting to note that I'm three short years from turning 55 and being eligible to retire from the school system. Certainly with the trends of class and educational changes in the offing, I'll be looking more seriously for a community and environ that might be more conducive to supporting my abilities, talents and gifts in music.......but that's for planning down the road!

Any ideas?

Guess these things go with the "welcome back" things - hunh?

Tim & kid

WEEK 6

Greetings to all!

Today just passed week 6 since the transplant of the "kid" and things are going well - I got to do blood tests locally this morning instead of a drive to Duke - yet another step toward what might be thought of as "normal" for me!

The last check-up and removal at Duke made me totally "appliance-free" meaning that there are no parts of me that are staples, shunts, tubes, stints, catheters or any other objects! This is the first time I can make that statement since 11 Jan - over two months!

This might allow me a thought of going back to the school job at least part time on Monday 20th! That means I'll be about 2-3 weeks (plus) ahead of the predicted! I did make it through All-State auditions that I and my school hosted last Friday without becoming too tired.

I've been slow in posting here, mainly because life has been a little less eventful than before. It's been basically sleep-eat-drink (water water everywhere) and then celebrate each time the water passes through normally!

I continue to go between living "commonly" and assuming that this is how it should be, and then being struck by the truly miraculous nature of the past two months of my life! Even with malfunctioning kidneys on their last nephrons, I was accustomed to life as "what should happen" I don't think I'll ever get used to life as "common" again - I know that we take so much for granted......


I was genuinely moved when I read this article shared with a PKD group that I'm a member of...Take a few moments and read this one....

http://www.news-press.com/apps/pbcs.dll/article?AID=/20051023/NEWS01/510230396/1002


Continued thanks for all your prayers and support - they mean a lot to me moment by moment! I'll post at least every week when I'm doing the weekly bloodtests!

Know of my deep appreciation for you!
Tim & Kid

Apocalypse Now

I just finished an early-morning IM with Tim ... and I was surprised that he IM'ed at 7:30 a.m.

Turns out -- with Duke's blessing, he is on his way to school today. This is his first day of teaching since January 9, coming just five weeks and four days after the transplant. This is a one-shot deal for now, but a milestone none the less. He assured his "father hen" that he is taking adequate precautions and will recognize his limits.

Since Tim hasn't checked in for a few days, I thought it important to share this bit of extremely encouraging news about his progress. We'll look for Tim's report soon.

And by the way -- if you haven't contributed to Tim's fund as yet, please do so. Tim mentioned financial challenges in a recent post, and it sounds like he may need some short-term support. On behalf of Tim, thank you for your generous gifts.


Brian Burke

HI HO...HI HO

...it's back to Duke we go...

Officially the "one month" checkup is early this week, although it's officially 5 weeks tomorrow that Kid and I have been literally joined at the hip.

The "month" hasn't been without a few concerns - last Wednesday evening I noticed that hands and feet were swelling and the weight was going up - indicating that I might not be having the best function. I spent most of that night not sleeping much and checking the temp and bp to make sure nothing was going on - it made for a tired day over the next few....

I'll be posting the results of the latest tests here when I get back!

All the best!
Tim & Kid

Lent and Life - One month and counting

Mea Culpa!

I haven't posted in over a week - I haven't ignored you intentionally, it's more a combination of life-events at a status quo and an attempt to reintegrate myself into a life-schedule that could be termed "normal"

Normal is an interesting word in this case. I'm coming to a realization that just about nothing will be "normal" ever again after a January 2006 that I've spent. It's almost as if the "old" me ceased to exist on 30 January and a totally "new" me took over. Many have questioned me about this, asking "Do you feel different? Do you feel better?" To both, the answer is a resounding YES!

I'm having insights into why some transplant patients seem to change parts of their lives that had been "normal" before, and pass the "blame" on the new organ - as if there is some mystical power that a new kidney or heart wields over the "old" body.

I even read one hysterical but frustrating story about a lumberjack who received a new kidney from a woman and was frustrated to find that he no longer enjoyed drinking with his friends, but preferred to clean house and iron and cook after the kidney was introduced into his body. He was planning to sue *someone* because his workmates teased him so severely.

He missed the point.

I had the point come to great clarity to me this Ash Wednesday.

"Remember that thou art dust and unto dust thou shalt return."

I've received ashes on Ash Wednesday for many years, and have heard these words many times over the years (now 40) of church work and service. On THIS particular Ash Wednesday, the impact was staggering.

Although I'm certainly not fearful of what happens after life here among you [ You can not scare me with Heaven ] and I know with certainty of the celebration of death into new life-energy, I was impacted with a deeper understanding that, truly, I was very near experiencing my return to dust.

The unbelievable gift of life that I was blessed to receive on 30 January still overwhelms me and will continue to impact me moment by moment and hour by hour for the remainder of my life.

There is truth in the fact that there are changes that I cannot understand or explain. For those of you who know me well, you will be astounded to know that I have not made the first pot of coffee in my home since right before 11 Jan 2006. The coffee pot stands in the kitchen - clean and empty. This isn't to say that I can't have coffee (I can) or that I'm protecting myself from that (I'm not consciously) but I simply don't want it. I've had maybe three cups of coffee since 30 January. It's simply not appealing. I don't' know why.

Simply, I DO know that something changed inside of me. It's not changed my abilities to make music or to function - simply - it's made me aware of life in a new way that I wasn't prepared to see. I'm thankful to feel so wonderfully different and alive!


I'm back to Duke for a final removal of appliances - this time the stint - early in the coming week. I'm carefully checking and monitoring pain levels and blood pressure, temperature and weight daily and know that I'm only a phone call away from receiving advice and medical attention 24 hours a day. I'm napping a good amount and also find that sitting at the computer isn't comfortable.

I can see already that there will be challenges ahead - financial challenges and health challenges on the horizon. Life will not be "normal" again.

I'm excited that it will not be!

Grace and Peace in this Lenten Season
Tim and Kid

REPORT III

Two more things have been removed bringing me even closer to returning to "normal"

The Duke check-up was good! The only thing remains a higher than acceptable level of Prograf, so we've decreased that med again. It *may* help the hot/cold sensation in the hands and keep things at good levels.

The perm-cath is gone and bandages come off tomorrow! I'll get to have an unguarded shower! Since 11 Jan the cath site had to be protected from water and infection, so all bathing has been adapted to avoid the cath area.

The staples from Incision II are gone and the site is taped for the time being. I'll be working on healing in that area in the next few weeks.

I was curious to learn that the "half-life" of a transplanted kidney is about seven years - with half of transplanted patients losing their kidney in the first seven years. I'm certainly hoping that I'll not be in that group and hoping to work to maintain everything to keep the kid as long as possible. This statistic only serves to focus on how strong the need for healthy donors as well as continued research into PKD and other kidney diseases to prevent the need for transplant.

I still remain in awe of the entire process. I was re-reading all the posts from the past nine months (a lot has happened in a very short time!) and continue to be amazed that things have happened so fast. I see and know that I've been blessed each day with continued life - a gift that we all receive!

Live in joy!
Tim & Kid

DUKE III TOMORROW

Check up three is tomorrow - so a short post to let you know that the process is going well! The numbers that I monitor daily are all within acceptable limits and the pain is only occasional. I'm working on my list of questions for the team tomorrow.

Genuinely looking forward to bidding GOODBYE to the perm-cath and the staples!

I hope to have lunch with Ann on the way back home! I'll be sure to deliver your best wishes and prayers for her as she continues her recouperation process!

One more step toward "normal" - however that can be defined for me LOL!

Tim & kid

A VERY SPECIAL DAY

I am one of the luckiest people in God's creation! So many people in the communities that I'm honored to serve are so kind to me in ways that I never imagined!

I made my first attempt to return to somewhat regular "real life" by returning to the musical life of Beckley Presbyterian Church. I was VERY warmly received this morning at the worship services, as well as choir rehearsal on the previous Thursday. I'm not sure how consitant I'll be able to be, but I'm truly in awe of the warmth and love that this congregation provides a part-time employee! I feel loved and supported by so many, who also express surprise at my recovery.

Additionally, I was to conduct a handbell festival in Puerto Rico this week-end, before I knew that the surgery was so near. Certainly my Puerto Rican friends are some of the most loving and supportive that I have. Each of the two times that I've been honored to go to the beautiful island and conduct, I've been treated beyond well by everyone I come into contact with. I was commissioned by them to write an original composition for the festival that happened in Ponce PR today.

I was honored to be called just before the premiere by Nancy on Carlos' phone to "virtually" be a part of the premiere of Rondo Borincano as it was happening! It was such a thoughtful and kind thing to include me as a part of the festival and premiere!

I'm truly blessed by these people - and by each of you! I've known that all these communities that intersect my life were a valuable part of the fabric that supports me, but I'm acutely aware that, without them (without you!) it would have been a harder road toward health and recovery.

You are deeply appreciated!

Tim & Kid

OK .....SO YOU ASKED FOR IT

I received an e-mail from my surgeon from Duke with the photos. After taking a look, I decided to post them at a different blogspot so you can choose to look or not.

They're NOT for the weak of stomach or squeemish. I'd not click to go there right before dinner or if you're not feeling particularly well.......that said.

You'll see Boris and Natasha and Mr Liver and a full shot before they took out the organs at the front of the body to find the twins underneath.

Take a moment and a breath and decide to click below - or not! Pretty unreal - at least to me!!

http://kidneykronikles2.blogspot.com

Tim & kid

TRANSITIONS

Good Friday Morning!

I'm still basking in two weeks of good reports and remain cautiously optimistic - cautious because the first two months with a new kidney can be a roller-coaster experience. Most rejection episodes happen in that time period with a 50% rate of re-hospitalization. I'm keeping all my hopes toward a smooth transition. Of course, episodes are possible *anytime* with a kidney, but the first month to two are the "wait and watch time".

I'm still having a few minor reactions to the meds - which are predictable. If they become pronounced or if *anything* rises, I have a 24/7 number back to Duke with strict instructions to call the "hotline" so I feel pretty comfortable. One of the meds can cause a sensitivity to hot and cold in the hands and feet [check] and one can cause a slight tremor [check] so I'll report these if they progress and put them on "the list"

I amuse the transplant team with my notebook and papers that I hand in at each check-up. I take a page and hand it to anyone that comes into contact with me. It has a list of all the meds, another column with contact info for most of the leading physicians, and a third column with a report from the week that includes any concerns that I have. They call it "my agenda" and threaten to hire me to train all their patients!! HA! Guess it's the teacher in me?

This weekend I'll be trying "life on my own" for the first time since Surgery One on Jan 11th - making it over a month that I've had someone on-call for me 24/7. I have some of the BEST people in my life that anyone could imagine! This will be a transition that certainly is mixed, but a needed push to readjust to taking responsibility for this new chapter in life!

This whole process remains an amazing progression of events punctuated with so many caring and loving people who have taken time out of their lives to show me that they care. Through prayers and good thoughts, positive energy, cards and letters to volunteers who are willing to babysit a 51+ guy with an independent streak!

I was able to play a rehearsal at church last evening at church and *may* be able to play for church on Sunday - one more transition back to "real life"!

Thanksgiving for each and every one of you!
Tim&kid

DUKE chapter two

Just back from Duke with continued good news!

The labs - although not "perfect" as last week, are fine. The Prograf levels ( meds for keeping rejection down) are too high, so I skip the med totally tonight and then go back to 3 pills in the am and 4 pills in the pm. That's down from FIVE pills morning and evening!

A few of the staples have been removed, but some are still there, letting me know of their presence ( most sit at waistband level and below) They ALL come out next week along with the perm-cath ( a surgical procedure).

The more eventful news is I'M CLEARED TO DRIVE THIS WEEK END!

Just one more step toward becoming "normal"!! [hey - it's a wish - can't say I could be considered normal in many years!] I can begin to slowly reintegrate into activities that are limited in crowds - as long as I keep hand disinfectant at the ready.

The strange pains in the back and cramps are still under consideration...could be potassium levels ...could be nerves coming back to say HI! (oy) ....could be low calcium. Still being studied.
Not too bad or frustrating.

I have a few more weekly visits and if nothing is considered strange, then I *might* get to cut back to every 2 weeks - then maybe monthy! WHEE!!!

Thanks for your continued prayers - especailly for pain-free evenings! I *KNOW* beyond a shadow of doubt that they're working!

T&K sending you continued love!

HAPPY VALENTINE'S DAY

Wishing you the happiest of Valentine's Days! My celebrations today certainly reflect my thanksgiving for each of you! I feel so supported by your positive energies, good thoughts and prayers each day that I know my recovery has been greatly accelerated.

Yesterday marked 2 weeks with the new (to me) kid! From what I can tell, things are going well and most everything seems to be settling to a "normal" experience. Only minor discomfort and cramping seems to indicate that the nerves that went to the old kidneys might be waking up a little - strange feelings. The cramping in the legs and hands are still a mystery - but not too bad.

Tomorrow we have check-up week 2! More news then

TnK

TWO weeks and counting....

Today marks week two with "kid and I"! Things are going really well, it seems.

The meds are settling in - although there are quite a number of pills that have to be in the body at 10 am and 10 pm without erring. They keep the body from figuring out that the kid isn't original equipment and most of what I'm taking will be a lifetime thing.

Tomorrow I travel to Duke for the second of the series of check-ups. The tests are mostly done with bloodwork and then I get to see a member of the team to check up the staples and perm cath and the other attachments that I'm genuinely ready to be rid of.

The only minor thing that's been happening is what I term "internal pains". I have some cramping and pains that were common when Boris and Natasha were residents...which makes me think that perhaps some of the severed nerves might be waking up. Usually it makes me want to be horizontal for a while.

I'm so thankful that this is literally a second chance on life. The more we explore the pre-surgery numbers and statistics the more I'm coming to understand that I was genuinely into End Stage Renal Failure. Things were going at a rate faster than I had realized or chose to recognize. It's truly a blessing and a miracle of modern science that my latest numbers ( we'll have more tomorrow) are so much closer to normal. I honestly don't recognize my feet due to the reduced swelling that was normally a part of each day.

May God richly bless each of you as He has bestowed amazing blessings on me. I continue to live in awe and joy for each new day that He has given me through your faithful prayers.

Tim & Kid

Nearing two weeks with the kid

I woke early this morning feeling pretty darn good! I'm noticing that there still are times that the body just gives out for a while and I nap often, but I'm building up the strength to continue to grow toward normal each day! It's an exciting thing for sure - and to add to that excitement, I have times that I'm feeling better than I have in years! This was predicted by some of my transplant friends who have been through this whole process, but you really don't realize it until you see it in action. My weight is down to an official 163 - a shadow of my pre-transplant high of 199! Still having to deliberately push fluids, which wasn't the "norm" for the time of dialysis.

Had a pleasant evening with outgoing caregiver Jeanne and incoming caregiver Laurie! My mail is being checked for me, and I got a delivery with a great handfull of cards and notes! Had a wonderful time reading each card and being warmed by all the good wishes and wonderful thoughts. This has been quite a learning time for me to see, through the comments on the blog here and the cards and phone calls, all of the people who are so generous in their prayers and good wishes. I know that the continued recovery that I'm experiencing is due in good part to these great energies sent my way!

Snowing here - but not nearly as much as we anticipated - at least not yet!

God's blessing on each of you!
Tim & kid

..and for today.....

....slow but steady improvements! Evenings are a little better and I feel pretty well, but a mid-afternoon nap is still very much in order!

We got home Wednesday evening after a GREAT ( but long) check-up day. These are happening now every week for a few months. The lab from Duke called and the med report was that my "labs were perfect!" WOW!! It's been probably since I was about 24 that the labs for renal function were any where NEAR perfect. The creatinine levels were a 1.9 - to compare - pre transplant I hit a VERY HIGH 13!!

I was glad to see Ann as well at the check-up. She had her post-op and said that the nausea was gone! (I'm very glad! Thanks for your prayers)

I've been out minimally to run a few errands with Jeanne driving. The plan is to go at times that crowds are minimal and people contact can be controlled. I got masks as well ( strange looking but keeps the germ/virus somewhat at bay) and hand disinfectant is my friend.

I'm practicing conservative optimism in identifying how I'm doing. I think I'm WAY ahead of the game in many arenas and really hope that there are no set-backs. Statistically, a re-hospitalization occurs in 50% of the transplants, and probably is a little higher since I'm NOT doing the prednizone route. I was given a drug in transplant that is used in treating leukemia. It greatly reduces white blood cells which would attack the kidney. It means that I will NOT be on lifetime prednizone but WILL have it as needed. It's VERY beneficial but has many side-effects as I found out!

I'm looking forward to excursions and hopefully having visitors. Duke would encourage visitors to be healthy ( no sniffles or viruses) and to be ready to do the hand sanitization at the front door.

I know it might be redundant to say repeatedly, but I'm deeply grateful and humbled by each of you and your expressions of love, concern and prayers. There is no doubt that this great energy that you are projecting to and through me is making an astounding difference in my recuperation and the great lack of reactions and problems. Thanks

Tim & kid

Winding up a good day

First day out for a few hours! We went to a local mall early afternoon and walked, had a bit of lunch and walked some more.

I'm strongly moving toward the "better" category but tire easily. I got to practice things like picking out times when the mall isn't crowded so the people contact is minimal, selecting a restaurant based on its health rating and fresh prep rather than steam table or warming lights, locating the bathroom first and planning excursions so I don't get caught too far (the kid IS active after all!)

First post-op of many will be tomorrow and we'll know numbers and function for sure, but I'm thinking that things are going pretty well. Planning to start for home right after that.

As you think of people tonight or tomorrow, add my donor Ann to your list. She's still experiencing nausea as of a day ago and has been mostly at home in bed. I know you will join me in praying for her complete and fast recovery.

Thanks for remembering me as well, as I give thanks for each of you daily!

Tim & kid

...one week ago....

.....my new addition was installed! Although there have been some bumps with all the treatment post-op, I can hardly believe that it's only been a week!

I'm still awed by the depth of generosity of Ann, Brian Burke, Jeanne Christopherson and all the team of caregivers and all of you supporting me through good wishes and prayers. Simply, this could not have happened successfully without each of you (especially Ann!)

I've been graced with a profound responsibilty of taking care of this new "kid" and making sure that I keep [her?him] healthy. It's an awesome responsibility that I think most would not consider if you have not had a transplant. What a blessing we have in our bodies and a deep responsibility to care for them so they work well for us!

Just updating so you can have an idea of what day to day life after hospital has been. The kidney is functioning well from what I can tell. About every 45-90 minutes when given the "signal" from my re-awakening bladder ( remember it was asleep for 19 days) I measure output and record it along with the time. Occasional checks include temp and bp so all "functions" are recorded for the weekly review at Duke.

Today I was able to "shower/bath" and wash my hair on my own. The hair is the feat, because the perm-cath is still in my upper right chest and will remain there for about 3 more weeks. They'll also remove a stent that's keeping the "ductwork" between the new kid and my old bladder open for business [won't THAT be pleasant?] and check on the remaining drainage site at the top of the incision. By looking closer I found that the incision for the hernia repair AND new kidney are actually one - an extension of one another and moving from upper left abdomen into the body midline on a 45* angle. MORE staples to remove! WHEE!

Completing my day of becoming more human, I'm back into contacts and pulled the ponytail back. Pain is decreasing and the need for a pill to keep those sensations at bay are going away as well.

I have REAL shoes on the feet that *I* tied! Little triumphs of returning to being genuinely human! A mini-excursion and some laundry will complete the day's progression. The pan is NOTABLY less when I move around frequently, but only for short bursts.

Thanks for keeping up with me here! I'm planning to continue to blog so you can have a "photo" of this recovery.....OH..... speaking of photos.... would you like to see the photos from Surgery ONE when they are sent to me? My surgeon photo'd Boris and Natasha as well as Mr Liver!!

Is that in the "too much info - don't post those here" category? Let me know!

Tim & the week old kid

Quick post - yes it *is* me!

A very special thank you all yet again for your support through prayers and special thoughts. I'm very pleased to report that I'm out of the hospital and into a slightly altered plan for the next few days. In considering the unbelievable gift Ann has made, I decided to stay a little closer to Duke until my first check up on Wednesday morning, so I'm in a comfortable hotel for the next few days. This places me only 10 minutes away rather than 4 hours away from immediate attention should anything surface.

I'm doing extremely well, but in discussing things with the doctors ( and I've met so many in this fabulous teaching hospital) I had commented on how slowly things are progressing in comparison to the last one. I have whom I consider the VERY best surgeon possible in Dr Dev Desai who has been chief in each of the surgeries. He is a calm and gentle man with a bedside manner that is above any you can imagine. With a distant and genuine smile he said "Mr Waugh let's think about this. One - you just had TWO not one surgery on the 30th, both of which went very well! These incisions (one for the kidney and one to do repair work) are about 1.5 inches apart on your left. Two - we're bombarding your body with a collection of new drug therapies to keep your body from rejecting the new kidney as well as steroids and your special program of induction therapy. Three - it's been only *nineteen* days since your first surgery!"

He makes good points!

I continue to be totally overwhelmed by the generosity coming to me from Ann and the support and prayers and kindness that each of you have and continue to show to me in this travel. Thanks as well to all of you who are taking special care of me directly.

Would that I could only repay in a small way all this kindness that each of you have shown. I'm extremely humbled and grateful

Tim and the new occupant

Today's the day!

Docs are planning for a mid-afternoon discharge, and Tim will be on his way home! He didn't get much sleep last night because he was given a diuretic before bed...in retrospect, that probably isn't an ideal time for such things. :-\ But we'll have lots of pillows and blankets in the car, and he'll have as comfortable a ride as I can possibly make for him.

More tonight....

Jeanne

One day more

Well, the anticipated release didn't happen today. Tim had a reaction to one of his meds in the middle of the night...extreme restlessness, high anxiety...sort of jumping out of his skin. So the docs kept him in for another day to make sure there were no more problems. When I got to his room late this morning, he slept for a while, but then he improved throughout the rest of the day. He ate a good lunch and dinner -- he even requested an evening snack and was delighted to get a banana and some vanilla pudding. He did six laps around the triangle, two at a time. He's completely disconnected now from catheters and IVs...no more equipment to lug around on his walks...wahoo! Newly unencumbered, he was able to take his first shower in ages and don some of his own clothes, which was great for his spirits!

The kidney is doing very well, and his numbers are all good (bp, blood sugar, creatinin, temp), so as long as tonight goes well, there's good reason to believe he'll be discharged tomorrow. Stay tuned...we'll update you as soon as we can!

Oh...and remember to submit your most creative name for the new kid through the comments! They're providing some fun for Tim! :-)

Jeanne

Tim and the foster kid

When someone asked Tim today how the foster kid was doing, that elicited a pretty good chuckle from him, according to Jeanne. We wonder if his students, who gave the natives the monikers "Boris" and "Natasha", have worked on a name for the new kidney. Any business owners out there that would like to bid for the naming rights? "Hi, I would like to introduce you to Tim Waugh and his foster kidney, American Airlines Arthur," or "Arthur, presented by Merck Laboratories." Make your non-refundable bid check payable to the Waugh Fund...

Hey, let's amuse Tim. Post your best, most creative naming ideas in the comment section!

Tim has continued to have some peaks and valleys after the transplant, but they have been more marginal than major swings.

The peaks -- 10 laps (over a half mile) around the triangle; IV pain meds removed with normal pain now at a 0-1 level; he ate a good portion of his chicken and potatoes for supper, his first major attempt at solid food; and his attitude and voice have both improved.

The valleys -- the steroid therapy tends to cause some crabbiness, keeping Tim's sense of humor and generally upbeat attitude somewhat in check; he is still wary of nausea but isn't keeping the bucket as close as he had been; and he still has the catheter.

There are still a few things that need to happen if he is to be released tomorrow ... time (and the parade of doctors and techs tomorrow) will tell.

Despite the valleys, the line on the graph has continued in an upward direction -- considering the two major surgeries (nephrectomy and transplant, with an appendectomy and hernia repair thrown in for good measure) occurred in less than three weeks.

Oh, that we would hear how Ann is doing...

-- Brian

A better day, indeed

I was a bit delayed this morning in heading to the hospital, so I called Tim's nurse to find out how his night had been. She told me that it had been a bit rough, that he'd had some nausea, and they were trying some things to help curb it. Imagine my surprise and delight when I arrived an hour later to find him sitting in a chair! He told me that he'd deliberately stopped dispensing his pain meds at around 2am, and lo and behold, the nausea subsided! When his doctor stopped in on his rounds and Tim reported his discovery, the doc made changes in both pain and nausea meds. Tim had already made circuit of the unit's "triangle" area before I arrived, and he did two more in a row a while later.

The changes to his meds obviously made a huge difference. Queasiness did flare up from time to time, but Tim has found that eating ice in small amounts helps with that problem. While he's still not feeling as great as he'd hoped he would by this point, he certainly felt and looked much better today than he did yesterday. Kudos to Tim for following his instincts and for being an active participant in his own medical care!

He had several staff visitors today and got tons of instructions regarding his return home as well as information about what life will be like with a non-native internal organ. He'll practically be a walking pharmacy for a while, and while some of his medications will be taken for the rest of his life, many will be discontinued after a while.

We still anticipate a Friday release at this point, though that can change if the surgeon think he needs another day or two at Duke. Basically, they'd like to send him home sooner rather than later because it's better for him to be in his own home with his own germs than in the hospital environment with everyone else's germs.

As always, continued prayers are appreciated for speedy recoveries for both Tim and Ann. Believe me, they do make a difference!

Jeanne

Marked improvement

A special mid-afternoon report via Jeanne:

During the night, Tim put his M.D./R.N. training to work and decided that the pain meds were causing his nausea. His complaint was that the nurses were not taking his issue seriously enough, saying, "Oh, gee, that shouldn't be happening." Using his unusually high threshold of pain, he cut back on the pain meds during the night and, after his surgeon was in this morning, was given a change in pain and nausea meds. You will remember from Jeanne's post that motion was the issue -- something as simple as rolling to be on his side was nauseating.

Well...

Since this morning's conversation with the surgeon, Tim has been sitting up and has begun his laps around the unit's corridors. He has energy back and is leaning toward being his "effervescent" self. Motion and nausea are no longer issues. Tim has himself back on the fast track to recovery.

The educator is teaching us all something about being knowledgable, proactive, and, when needed, insistent when it comes to our medical care.

-- Brian

A tough day for Tim

Direct from your reporter on site....

Today was a pretty rough day for Tim due to the nausea that plagued him throughout the day. It began very early -- around 4:00am -- and persisted through the day. When he managed to take in a little broth or jello, it just wouldn't stay with him. He was given some medication to ease the nausea, and the first dose worked for a little while and made him tired enough to nap. But it didn't last nearly until his second dose, and that dose didn't seem to have any effect at all. He had a couple of good hours in the evening but, alas, the nausea returned. When I left at 10pm, things were still "iffy." Overall, and in Tim's own words, he "lacked the effervescence of yesterday."

There is good news to report, however. The new kidney is functioning very well, and Tim's pain remained at a very manageable level all day. Once Tim's nausea is brought under control, he will be up and walking, and I have no doubt he'll recover as rapidly this time as he did from Surgery #1. If all goes as expected, we anticipate he'll be released on Friday.

The surprise of the day came when I learned upon my arrival this morning that donor Ann had been released already!! Even the transplant coordinator was shocked at hearing that, so Ann must be made of the same stern stuff that Tim is!

That's it for today from the roving reporter. Either Brian or I (or maybe even Tim himself!) will give you more news tomorrow. Your thoughts and prayers make all the difference, so please keep them going.

Jeanne

Quoteable quotes

Day one has ended for reporter Jeanne. She is sequestered in her hotel room looking forward to a good night's sleep. But her final call to me this evening included some quotes that Tim wanted to share with you.

The first: "I never knew ICU could be so fun." It seems that the night shift nurse booted Jeanne out of ICU when the suppertime visiting hours were over -- the nerve of her! Of course, that was license for Tim to give nurse a bad time while Jeanne was gone, especially when it took 50 minutes for her to get back to him so he could turn the TV on. Tim sweetly asked, and you can all picture this, "Do you have a heavy patient load tonight?" She said, "No, just two." By time Jeanne came back for the 8:30 visiting time, the nurse was being very sweet, having learned that Tim was syrupy sweet when his needs were cared for but, if not cared for, then... Tim was definitely having some fun training his nurse!

On a more serious and reflective note, this is a quote that should hearten each one of us who has followed the course of Tim's PKD:

"I can't believe how good I feel," he bubbled. "I haven't felt this good in years." Over the past years as the disease progressed, he never thought he felt bad. But with a properly functioning kidney, he already knows the difference. Other transplant patients had told him how quickly he would feel well, but Tim didn't comprehend the immediate, marked difference until this evening. Jeanne reported that Tim's demeanor as they were talking about this was that of being thrilled .. nearly euphoric ... about how good he feels. And it wasn't drugs talking. "It's literally a whole new lease on life," Tim said. I'm sure when he is able, he will offer his personal reflection on this.

I do have to report that the now infamous "Bite me" comment has not left us. Before Jeanne saw him in ICU for the first time after surgery, I asked her to express my good wishes and to tell him, "Bite me." Um ... suffice it to say that Tim's response will not be posted here in order that we may retain our PG rating.

"It was an honor and privilege to have been there tonight." This was not a quote from Tim; it came from caregiver Jeanne. Jeanne, as you may remember, coordinated the donor inquiry process for Tim and has been by his side (if Princeton, WV and Dallas, TX are side-by-side) from the beginning of the Duke proceedings. Tim has asked her to be sure and visit Ann's room tomorrow. She will be our voice in expressing the gratitude of each one of us for the gift of renewed life. In our selfishness of wanting Tim's transplant to occur and his health to improve, it is Ann's unselfish act that is making this possible. Again, you can send a card or note to Ann c/o Tim Waugh, PO Box 1700, Bluefield, WV 24701 and it will be forwarded.

We are grateful that Jeanne is with him and expect that she will post a first-person account tomorrow night. Visiting hours last until 10 p.m. EST, so it may be later in the evening.

-- Brian

All is calm, all is bright

On-site reporter Jeanne advises that everything continues to go well in ICU for Tim.

There are two primary issues that the ICU team is monitoring: output and pain. The output seems to be more than adequate. As far as pain -- the ICU folk are learning that when Tim reaches the upper limit of his high tolerance for pain, he wants his medication NOW, not an hour and a half later. Jeanne reports that teacher Tim offered a quick course on "Waugh Pain Management 101" to his head nurse!

The very pleasant surprise this evening was when angel Ann and her husband came to visit Tim. They stayed for about 15 minutes. Ann walked to Tim's room -- there's something to be said about that family's stamina and determination!

Unless there is some breaking news, we'll update tomorrow evening, when we hope Tim have been transferred from ICU to a regular room.

-- Brian

Another successful surgery

2:30 p.m. EST news: Jeanne just called after speaking to Tim's surgeon. As with the nephrectomy, all went well with the transplant. Tim has been taken to ICU where Jeanne and Chef Mike should be able to see him in about 30 minutes.

Of course, continued thoughts and prayers are needed as the kidney gets used to its new home. There is the issue of rejection that should keep us from becoming too overconfident right now, but everything has gone well up to this time.

According to the only information the surgeon could give her, Ann is in the Recovery Room after her surgery. Tim would, without question, ask us to extend thoughts and prayers to Ann and her family, also.

The best guess is that there won't be much news to report until later this evening. Check in sometime this evening for an update. And, as always, breaking news will be brought to you as it happens.

--Brian

T-Day has arrived!

On-the-scene reporter Jeanne just checked in. Tim, Jeanne, and Chef Mike arrived at the Duke Medical Center about 6 a.m., as did Ann. As of about 8:20, Jeanne thought Tim should probably be in surgery. (UPDATE: Surgical desk notified Jeanne and Mike that the surgery actually began about 10:00.) Tim's estimate was 2-5 hours ... probably 2, he said. Well, that's what he said for the nephrectomy, and it ended up being closer to 5 hours, so we won't anticipate another update until noon or 1 p.m. EST. As soon as we have news, we'll post it here.

I wonder if Tim has rehearsed a post-op line to try to top "Bite me"? (If you are wondering about this, scroll down to the posts of Jan. 11 and 12 for details.)

-- Brian

..Music..Energy...Connectedness

Time is passing very quickly although I feel very clear and calm. As you read in the previous post, time became compressed on this past Thursday and I'm cleared for transplant on THIS MONDAY January 30th!

My past few days have been times of thought and reflection, of things that end and things that begin. In all of these things I've found opportunities to genuinely celebrate! I'm hoping that you will join me in my celebrations just before phase two - transplant begins early Monday morning.

My first celebration revolves around the simple joys of spending time with my donor, Ann. We're both curiously private persons and this was a low-key opportunity to share thoughts and information about our upcoming surgeries. In these discussions we've decided to have me participate in a study that will give me alternative drugs to prevent rejection which will avoid the lifetime use of steroids to help prevent rejection. I hope that the studies with me, which have similar risks with other traditional therapies might help pave the way to have most all transplants done without extensive and lifetime steroid use.

I covet your prayers for me, as I covet your prayers for Ann. As I mentioned, she is a private person as I am but I'd appreciate your joining me in making an attempt, albeit feeble, to thank her for her gift of life to me. You're welcome to send cards to my home address [Attn. Ann C/O Tim Waugh PO Box 1700 Bluefield WV 24701] which will be forwarded to Ann. I've tried to add my deep appreciation to her for her unbelievable generosity.

Second, I hope you will celebrate with me those who are on dialysis and those who work in the centers which provide a direction connection with machines which maintain life. In my short time at the Princeton Dialysis Unit I developed a deep appreciation and connectedness with those who are simply life-givers to all of us on dialysis. I joined a procession each Monday, Wednesday and Friday of people from all walks of life, mostly older, some in wheelchairs and on oxygen, each with a pillow and blanket to comfort the three hour plus experience of having ones lifeblood gently pumped out, cleaned and returned in one-cup portions. Dialysis is not a horrible experience. Little to no pain is attached. It's clear to everyone involved; technicians, nurses and patients that it's a necessary part of continuing life for three events a week, each about three to four hours. The staff often arrives before 5 am and cannot leave until the last patient is completed, as late as 8 pm. Only a few ever get the opportunity to celebrate the end of dialysis. I was one of those few this past Friday and was deeply moved by the joy that the staff shared with me in celebrating what could be my last dialysis experience! Pray and celebrate those involved in this lifegiving process.

Last, I was deeply moved and humbled to be strong enough to surprise my four All State WV-ACDA girls in Charleston WV for their final concert today at 2 pm. I kept my secret well and was there just before the concert to let them know I was there to hear them! The return surprise that *I* received was the joy and excitement that my vocal association colleagues expressed to me in celebrating my ability to be with them after a short 17 days after the departure of the kids. In the midst of the concert I became acutely aware of how connected we all are, and how important it is to express that connectedness through sharing of the energy created by prayer and by music, and by simply expressing these feelings with a hug or a pat on the back. When you add me to your prayers over the coming days, please find one person to share your music-energy with by letting them know just how much they mean to you.

Music and prayer create an energy that is overwhelming. When it's shared with another, unbelievable things happen! Each of you have made genuinely unbelievable things happen in the last 17 days of my life!! Thanks for continuing to share your energies with me!

grace and peace to each of you!

Tim

TRANSPLANT NEWS FLASH!!!!

Our current roving reporter with Tim, Stephanie Wiltse, just called from Duke to advise that the transplant has been moved from Feb. 6 to this coming Monday, Jan. 30 -- "signed, sealed, and delivered," as Stephanie said. This is a positive move -- not a critical or emergency issue. All is well -- just moving faster!

Tim was at Duke today for his nephrectomy post-op and transplant pre-op. Ann was there for her pre-op, also. Stephanie took a picture of them together; hopefully Ann will allow us to post it here so we can see Tim's angel of life.

More details will be coming forth.

--Brian Burke

A good day - YAY!!

Today is Tuesday and that's a good day! There is no dialysis on Tuesday :-)
Thursdays are good days too! {we'll not discuss Mondays or Wednesdays or Fridays - ok?}

OH and a discovery! One of the caregivers [Mike] discovered that refrigerator word magnets don't stick to suture staples - too bad - we could plan a lengthy message for the surgeon
at the next visit!

I went to my GP this morning and I seem to be doing well - according to him (and we have to trust him - he reads this blog too!) [A BIG thanks to Dr Hopper for seeing me thru all these years!] On the flip side, it does appear that I'm anemic in addition to needing some additional repair work. Apparently the pressures of the kidneys and all the organs in that now small area masked a hernia on the right. It'll have to be repaired either before, during or after the transplant. We've contacted Duke and I'll see my surgeon on Thursday so we will have more info on repairs after the visit!

Today my Mail Delivery person brought a stack of mail which had a LARGE collection of get well wishes! Things have been forwarded from Duke as well as arriving in my PO Box!

What a delight to see cards and good wishes from you guys all across the US !!! Bell groups and ringers from churches and festivals, members of several churches where I have served, people that are recent acquaintances and old friends whom I had no idea knew about all the renovation! I've been through them all several times and I'll be reading them again and again! Your thoughts and prayers and good wishes are so very much appreciated!

Today is just at the halfway point between Boris and Natasha's debut and the anticipated "new kid" arrival! About 12 more days until Surgery Phase II and only five or possibly 6 more dialysis treatments - but who's counting.

I'll close today's post with one of the quips penned on one of the get well cards that I'm enjoying....

Moose and Squirrel have eradicated Boris and Natasha!!!

Tim & and about 80 Staples

A wonderful Sunday

It's been a good day!

Each day a little of my strength returns and I'm feeling more and more "normal" athough I tire easily. I look toward a warm bed several times a day as a timely refuge from the cold feet and hands that do still occasionally plague.

Today I made myself available to play for church! YUP! I played the whole service without needing any rest! There *were* a few strange notes, instigated mostly from playing in a different pair of shoes. When I went to get my organ briefcase I discovered that I had only one shoe, so I played in a "new" pair. Those who are organists know how that would confuse LOL!

All in all, I figure no one noticed - much ;-)

I was honored after church to be invited by Mrs. Phoebe Herring, one of the church members, to lunch at Black Knight Country Club ( a favorite place to be invited to eat) with her son David and another friend. The food was wonderful as usual, and I ate small amounts of what was legal and what I could manage.

This week brings a visit to my GP and back to Duke for checkups. I'm really pleased that I'm keeping things together as much as I can!

Perhaps endlessly, but I still reiterate how much I appreciate each of you. Your help with prayers and support as well as those of you who are quite hands-on with my care and ongoing recuperation is so much appreciated!

Thanks to all!
Tim sans B&N

After a slight pause....

HEY - TWO GREAT MINDS :-D Thanks Brian (his posting follows)

I'm delighted to be back writing directly to all of you!

Things have been right next to unbelievable! The surgery went much smoother than *I* anticipated and I think was anticipated by friends and doctors.

I know that a huge thank you goes to each of you, for your prayers and white light and good energy that you send each minute and hour of the day. My progress has been exciting!

I got home on Monday and spent a restful night. After a bit of a speedbump to start Tuesday I got out later that day to go by to see the school administration and check up on my kids. Several of you have observed honestly that my biggest worries of all of this process center around my kids at school. I'm hoping for good and consistent things to continue there.

I did have a fast "dinner" of rice at Applebee's with two caregivers and then went about reconsructing life at home. I do tire easily and have to take care to make sure that I don't lift or move anything that I shouldn't. Keeping ME clean is a minor challenge. The catheter for dialysis is just below my right shoulder and cannot get wet. Bathing/showering and hair washing both present challenges and take up more time than I would have anticipated.

Dialysis on Wednesday ( my 4th session) in Princeton proved to be a challenge. The 3rd session went for 4+ hours at Duke because the machine developed clots right at the start. The Princeton session ended with the same clotting, and a few small clots were pushed into my perm cath and had to be cleared. This was exciting to say the least, and after both of these sessions I didn't have the energy to do more than listen! This was a BIG change from "normal"!! It was just good to be in a warmed bed and close my eyes.

In stark contrast, I think I frightened a few of the members of Beckley Presbyterian Choir when I showed up for rehearsal and accompanied the whole time. I know several had expectations of me to be lying quietly in some hospital room, and there I was! Before some of you jump to worry, yes, it's all approved thru Duke!

My orders (when I specifically questioned about playing the piano and being "out" in the mall and places like that) were to "do as much as you can to speed your recovery - don't lift anything or drive - but get active!" Is THAT an open door or what? Before I hear some of you panic, yes I'm going to be reasonable with how much I do and I'll be careful! :-D

I hope you are as surprised and pleased as I of all of the successes that have been a part of this whole progression. A special thank you to those who have responded to Brian's work to help with the other struggles that accompany this surgery.

It is my continued hope that you come to know more about PKD and join others, PKD sufferers, donors and researchers to put an end to this disease. I covet your continued prayers for strength and health!

Tim Sol.... sans twins!

Where In The World Is Carmen Timwaughdiego?

He has been MIA from posting here, so a quick update from the phone calls between he, Jeanne, and myself.
All is well in Princeton. He has been doing as much as his energy allows, such as dining out and going to choir rehearsal at the church in Beckley where he is "artist-in-residence". When he overdoes, as Tim is prone to do, he does need to get his rest.
After some snafus with his previous two dialysis treatments, he had an excellent one on Friday. Other than that, there's not a lot else to tell. Ohio Mike and Chef Mike have been his primary caregivers this week; Stephanie from Grand Rapids MI will be in next week to embellish these reports; San Diego Laurie follows her and will stay until Tim leaves for the transplant -- assuming it stays on schedule for Feb 6.
-- Brian

Getting back to (a slightly altered) normal

Empty-nester Tim (get it? the kids are gone...) is safely home, and he says that "life without kidneys is returning to 'normal.'" Instead of convalescing at home as some of us would do, Tim has already gotten up and out! He had a bit of dinner at Applebee's this evening, then grabbed a few groceries for home. He's a little worn out tonight but in his usual good spirits. He'll have his first home-town dialysis treatment tomorrow afternoon, so if you could all send some prayers, positive energy, and good thoughts in that direction for everything to go smoothly, I know Tim would appreciate it.

--Jeanne
P.S. Thanks to Ohio Mike for taking over the caregiving this week!

The Wheels On The Truck...

...go round and round between NC and WV.

Or at least they will in a few minutes.

Tim called me at 5:15 p.m. to advise that Earnest had gone to get his truck and that Tim was waiting for a wheelchair to escort him out of the building. I guess he has finally worn out his welcome.

The boys have to pick up a prescription of pain med, and then they have to stop at the hotel and check out. Once they get on the road, it's a four-hour drive from Durham to Princeton. Somewhere along the way, friend Ernie is meeting up with Tim and Earnest and will commandeer Tim into his car -- an easier ride than the truck.

Unfortunately, today was not an easy day. Last night, they did not give him the proper amounts of pain meds, which took a toll on him. And then his dialysis machine had some problems, and dialysis took an extra hour. Then he had to deal with issues about his pre- and post-surgery meds.

But the upside is that the first part of the journey has been successfully completed, and we now move to the interim period between surgeries. He has an appointment on Jan. 31 at Duke which will probably be the final "all systems go" checkup before the transplant.

Remember: Cards can be sent to PO Box 1700, Bluefield WV 24701-1700 or simply post a comment below. Also, consider a contribution made out and mailed to Waugh Fund of First Church, PO Box 232, Wellington OH 44090.

-- Brian Burke

They pulled the plug...

...on all of the medical paraphernalia attached to Tim, including all of the IV drips and his epidural pain block. Except for one port still in one hand and his dialysis port, Tim is a free man. Well, free of tubes, that is.

And there's even less of Tim now than we originally thought. It turns out that, as long as the surgeon was inside, he took out Tim's appendix. The surgeon explained this as a preventative measure to avoid another surgery after Tim's immune system is destroyed; we wonder, though, if it wasn't a way to pad an extra two or three grand to the surgeon's fee. Snip, snip. Add an appendectomy to the insurance bill.

The important news is this: Tim is reporting that there is an 80% chance that he will be released tomorrow following dialysis. There is one bodily system they want to make sure is working properly, and now that he is back on solid food, the true test can begin.

Through the blog, Tim wanted me to offer tremendous thanks to Dave Harris, director of the Raleigh Ringers, for the gift of a coconut attached to a balloon. It brought back so many fond memories for Tim. If you don't understand this, either, Tim suggests calling Dave Harris at 919...

The funny/stupid story of the day. With the removal of Tim's kidneys, he is no longer hooked up internally to the bladder. Until his plumbing is reconnected after the transplant, he does not have the capability of doing number one. (No this isn't the funny/stupid story -- it's prepping you for it.) Anyway, a nurse came in today and was taking his vitals and asked him, "Mr. Waugh, have you voided yet?" Mind you, this was a nurse. "Excuse me?" Tim said. "Have you voided yet?" "Do you mean to ask me, have I peed yet?" "Yes, sir." As Tim tells it, Tim's eyes were rolling and friend Earnest, one of the original three wize guyz at the surgery, was in hysterically uncontrollable laughter. I think Tim, always the educator, ultimately enlightened her.

That's the report today from Durham via north central Ohio. Unless Tim is not released tomorrow, I expect this will be the final on-the-spot report from this end ... and that further reports will be in first person directly from the horse's (insert preferred part of horse's anatomy here). Stay tuned for further updates as the process continues toward transplant.

-- Brian Burke