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