I had a unique dialysis experience at today's treatment... something that has never happened to me before during any treatment, anywhere! The electricity went out and stayed out for about five minutes. A nurse was standing right by my machine when everything went dark so she handed me the hand crank and went running off to help other patients. All the nurses ran around like crazy making sure everyone was OK (everyone was.) I've never had to hand-crank my machine, before, not even during any of our hurricanes in Florida! "Hand cranking" is one of those things every patient knows how to do in case of emergency, (or at least they should know) but actually doing it was something else. It was an interesting few minutes, but I wasn't too worried. It was a little hard to hand-crank and gave my left arm a bit of a workout, but I could've kept at it for another half-hour if need be. When the 'lectricity came back on my machine wouldn't re-boot or ever power on - everyone else's came back on just fine. The nurses had to unplug the machine and I think they plugged it into a completely different outlet before it would come back on. Everything recovered and the machine (thankfully) hadn't lost all my treatment settings during the outage. No one ever did figure out why the power went - it was a beautiful sunny day, today and not storming.

Other than the power outage, today's treatment @ the Flagstaff Dialysis unit went much better than the previous two. As soon as I arrived they took me to my chair and I didn't have to wait even a minute in the waiting room. There was a slight hickup about what dose of Benadryl is prescribed for me - I discovered why the last two treatment's Benadryl did next to nothing for the itching... they had only given me half a dose! Today, however, I called my nurse back home and she talked to the charge nurse in Flagstaff and then faxed over a copy of my doctor's orders. Also, it seemed that all the 'good nurses' must've been working today because I didn't feel so unsure of my treatment.

I also met a few more patients today. A nice older lady sat next to me and we chatted at the end of my treatment. She has 6 kids and 36 grandkids! She also shared with me that she had just been approved for a transplant and that her son-in-law was going to be her living donor. I told her about my transplant journey, too. I also saw Ed and talked with him for a few minutes - he is such a character! I look forward to seeing him every year.

I had driven myself to my treatment today using Ken's mom's truck and of course I made a "wrong turn" on the way back and ended up on the freeway. Ugh. That particular part of freeway doesn't have another exit for quite a ways so it took me awhile to get back home... I wasn't lost, just temporarily misplaced.

My last dialysis here in Flagstaff will be on Tuesday. We fly home Thursday and my first treatment at home will be Friday.

I love Flagstaff... and I hope you'll enjoy looking at a few of our vacation/holiday pictures :) If you're interested in the entire set, you can find it on Flickr HERE.

           

My Thursday treatment didn't go much better than Tuesday. I showed up right on time, about 15 after 11, but still waited in the lobby until 12:30 before I went to sit down. Twice someone came out to say everything was almost ready and then something else would come up. I had a chance to meet and talk with another patient in the waiting room - she'd been there for two hours waiting for her regular treatment. I was also told that no one could find my paperwork, AGAIN, and that had I left a phone number with them on Tuesday they would've called me in to come in sooner - DOH! I left them my phone numbers on Tuesday... but they couldn't find them? Sheesh.

The treatment itself was not too bad, I was a little light-headed at the end. The elevation here kinda hits me hard (7,500 feet vs. sea-level @ home) and makes me short of breath. I was offered oxygen but didn't bother since I only had about fifteen minutes left by that point.

I guess my advice to anyone who travels on dialysis is to be able to remain calm when things don't go as planned. Also, plan extra time for everything (including waiting) since you will be the "new guy" and on the low-rung of priorities.

Two treatments left... Time to go play in the snow!

It snowed all of five minutes… but, boy were those a GREAT five minutes! Of course, none of it stuck and every flake melted immediately. But, I got to see SNOW. The weather looks like its starting to get worse and the forcast says snow tonight. This might or might not happen - in Flagstaff (”high desert”) just ’cause the weatherdude says precipitation doesn’t always mean it actually precipitates. I suppose that’s why its a desert, heh.

Dialysis tomorrow - supposed to get up to 7″ of snow tonight. Should be fun… I look forward to sitting in front of the big dialysis center windows to watch the snow while I get my treatment. They told me my treatment time is 11:30, we'll see if it goes better than Tuesday.

ITS SNOWING!!!!!

- Flagstaff, AZ

Merry Christmas (ok, a day late) from Flagstaff, AZ! We got here just fine on Christmas Eve and, surprisingly, there were no travel delays for us. Nor were there very many people at the airport or in the line for security. Being a seasoned holiday traveler who is used to massive crowds, grumpy TSA workers and long lines for the bathroom, I was pleasantly surprised.

Of course, much to my dismay, the weather here has been beautiful (I've been hoping for bucketfuls of snow, but no dice) and cold. I haven't seen snow in over 4 years. That's 4 years too long, if you ask me.

I had my first vacation dialysis today at the only Flagstaff Dialysis unit in town. It turned into a nightmare (for the three years I've been dialyzing at this unit I have never had such an issue as I did today) I showed up at 6 AM (the time my social worker at my home unit instructed me to be there) only to find out that no one knew who I was or why I was there at that time, and then I wasn't even on the schedule until the afternoon. I waited in the lobby for 2.5 hours before I got taken in the back. Of course no one could find my paperwork, either. Then I discovered that all the staff that I've known from previous years was gone. Not a single person remembered me, not a single nurse I recognized. The only person I knew was my friend/patient Ed. I saw him coming in for his treatment when I was on my way out. We chatted for a few minutes and he updated me on the goings-on over the year. He said all the staff had left, a lot of patients had died and everyone in the unit is new. He wasn't any more happy about it than me... he said they kept changing his treatment times and that it never was the same. I really hate to write a "bad review" of a unit, but compared to the last two years, things are just... different. Slower, some of the staff seems less experienced (some, not all) and in general the unit seems to be in the throes of confusion. Not too comforting for a traveling patient. It also annoyed me to no end that I had to "adhere to policy" (being their policies) and I couldn't set up my own machine, weigh myself, take my own temperature or even say how much saline I wanted at the in during my rinse-back. I understand that each unit is different and that they are just following their "rules"... but come on. Some things I am very particular about and I'd be happy to sign an "AMA" (aginst medical advice) to have it the way I want it. But I wasn't allowed.

As for the rest of my trip, it is wonderful! I am crossing my fingers that somehow we will have snow...

Soooooooooooo.... Merry Christmas to you all! I'll be around off and on when I can, but in the meantime I'm enjoying my vacation :)

Things are progressing with my transplant evaluations. I will be 100% done by the end of January, assuming there aren't any complications or other problems. (knock on wood) This is an exciting time!

Just in time for Christmas, I got a great present today, via an email from my mother:

Hi!

It is a winter day in Colorado, complete with a little snow and plenty of cold weather... I got a phone call from Diane Angelidis [the living donor coordinator at LifeLink] last week and she said I was a very good match for you. [Your brother] Andrew's blood was still in the lab being tested.

Hope you and Ken are doing okay. Have a fun trip to Arizona. Merry Christmas!
Love,
Mom & Dad

Wow! I was honestly thinking my mom might not be a match (I've always thought of myself as being more 'genetically' like my father's side of the family, for some reason) so what a pleasant surprise to find out she is a "very good" match! Of course, in my excitement I tried to reach the coordinator to find out exactly what a "very good match" means, only to find out she's gone on vacation until after New Years. So, I will have to wait at least a couple more weeks to find out exactly what it means. We're also waiting on my brother's bloodwork to see if he is also a match - he might be a better donor if he matches simply because of his age, but I will just have to wait and see how it goes.

What a wonderful Christmas present!

Our 2006 Christmas Card, originally uploaded by Krissi B..

If you didn't get a Christmas Card from me, its your own fault 'cause you should've given me your address! So, if you missed out, here's our Christmas letter and card. Happy Holidays!

December 2006

Merry Christmas, Friends & Family!

We hope this letter and holiday greeting finds you and your family in happiness and good heath! This time of year is our favorite and we hope you’re enjoying it, too.

This year has been a busy one for us in Florida. The biggest (and most unexpected) event for our family was moving in the middle of the summer! We hadn’t planned to move until the people who owned our house showed up one Saturday morning to tell us they were selling the house. We didn’t have much advance warning, but were able to pack up and leave in only 15 days. We found the perfect house and neighborhood and really feel at home here. If you hadn’t noticed, our new address on is: 12167 69th Avenue North, Seminole, FL 33772, and our home phone # is 727-233-1203.

Alek turned six on July 30th and started First Grade in August. He has really grown up this year! Alek excels in his school studies and is in the top reading and math “groups” in his class. However, sitting still and not talking aren’t exactly his strong points, but we’re working on that! Alek says his favorite part of school is P.E. class, and of course recess. He has also taken on a more active role in our household by learning to do a few assigned chores. This year for Christmas Alek will take his very first plane ride all by himself to visit his dad in Georgia for the holidays. He’s looking forward to “flying solo,” even though the flight is only 45 minutes long.

Ken has had a bit of a slower year in terms of work travel. He has had a break from traveling evey-other week as he has done in previous years. Now he makes a trip once or twice about every two months. His favorite trip this year took him to New York City where he had some down-time and was able to visit Ground Zero and other historic sites in the city. Other than less travel, things seem to be normal at work, nothing too exciting or interesting to report. In his off-time Ken has had a lot of fun setting up his new (bigger!) computer room at the new house. He plays computer games and surfs the web in the evening and weekends. He also recently set up the laptop computer so Alek can use it for educational games.

Krissi has been working on her various projects, most of which involve her websites and blogs. Recently she updated her kidney website (www.mykidney.com) and got her personal blog (www.krissi-web.com) redesigned. For Mother’s Day Krissi got the best present, ever: a new puppy to add to the family! The new puppy’s name is “Hunny Bear” and she is a small Chihuahua. It took a few weeks for Trixie and Sassy (our other two dogs) to get used to her, but now everyone gets along great. Krissi has been on hemodialysis almost three years, now, and is still doing fine. Even though the beginning of 2006 was a little rough for her because of multiple problems with her dialysis access arm, 5 stays in the hospital and four surgeries, the second half of the year has gone smoothly. In November Krissi decided she was ready to begin the kidney transplant process and got started with the testing at LifeLink Transplant Center in Tampa. She hopes to be “on the list” by the beginning of the year.

We hope you and your family have a very Merry Christmas and a wonderful New Year! If you’re ever in Florida and want to visit, our house is your house!

Love,
Ken, Krissi & Alek

COMMENT HERE

Today (Tuesday) I was supposed to have my "non-stress" stress test at LifeLink. I managed to wake up late, get lost and dazed in the shower (i.e. take a too-long shower) and then on my way out I somehow managed to lock myself out of my house with Ken's cell phone and keys instead of mine, and no wallet (i.e. driver's license). Ken's keys for my truck don't have a front-door key on them so I couldn't even get back in the house!! I was already running late to the appointment and I could see there was NO WAY I could make it to Tampa on time. Since I had Ken's phone instead of mine, I didn't have LifeLink's number to call and cancel! Argh! Luckily I found a pen from LifeLink that had the phone # printed on it. So, with less than 30 minutes until my appointment I called and cancelled/rescheduled. They have a 24 hour cancellation policy and boy did I feel rotten breaking the rules. I felt guilty, actually. The receptionist who cancelled/rescheduled me promised it wasn't a problem due to the unforseen circumstances that lead to my cancelling. After that, I went over to my landlady's house and had her open my house for me. What a messed up day... at least I got back in my house, though.

The cardiac appointments were rescheduled for the first and second week of Jan. *sigh*

The rest of my day has felt just as crazy. I'm thinking its because I haven't taken my usual Coreg dose(s) for two days. Why? Because for the non-stress stress test I couldn't have any beta blockers in my system and Coreg is such a drug. I never expected it to make me feel loony, but thats exactly how I feel. Kinda dazed and confused and all disorganized.

Comment HERE

Most of the people I know are waiting for a single transplant of a kindney; a few are waiting for a double kidney/pacreas transplant - But can you even imagine being so ill you desperately needed a six organ transplant?! Gretchen Miller from Rochester, N.Y. was...

Gretchen's troubles began when she was a young 18 year old college student. One day, while walking on campus, Gretchen collapsed with intense stomach pain. After being taken to the hospital it was quickly discovered that a piece of her small intestine had twisted, cutting off blood-flow to her bowels and causing damage to her entire digestive tract. In surgery, over a foot of small intestine was removed and Gretchen was expected to fully recover. For unknown reasons Gretchen's digestive system never worked from then on, and she was further diagnosed with a rare condition known as a pseudo-obstruction in her small intestine. Over 14 years the disease caused all of her abdominal organs to shut down. She has not eaten a meal for over a decade, living instead on bags of fluid fed intravenously. The result of this long-term intravenious feeding caused massive damage to her liver. In the final six months before her six-organ transplant, Gretchen's liver was failing; her weight dropped to 67 pounds and doctors gave her just weeks to live.

After four calls to go to the UPMC Thomas E. Starzl Transplantation Institute, in Pittsburg, PA for the transplant, and four disappointments of being sent home due to last minute decisions to give the organs to other waiting patients, Gretchen's life changed forever when the fifth call came. Gretchen received her new six organs - panreas, stomach, small intestine, liver and duodenum.

Six months after surgery Gretchen is doing well. She has gained weight and has been eating! Gretchen proudly reports, "The best part is that pain no longer controls my life!"

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The documentary series "Surgery Saved My Life" on the Discovery Channel chronicles Gretchen’s journey in the episode "Six Organ Transplant" as she waits for her multi-organ transplant, through her nearly 24-hour surgery and recovery. The show originally aired on Thursday, December 7th and will re-air on Decemeber 23rd @ 10:00 PM and December 24th @ 2:00 AM (get the TiVo or your DVR ready!)