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