Kidney Group

Mandy and I walked 4 miles along a new route to The Original Pancake House this morning, and met up with K for lunch. K said she was reminded that she really likes driving my new car (Uh, oh... ;-) The walk seemed to fly by, as I was chatting with Bob and Mikele for most of it. I really do think cell phones, free weekend minutes, and bluetooth ear pieces (when used responsibly ;-) are just the cat's meow of technology!

We went to a meeting of the Front Range Kidney Patients' Association at Porter Hospital this afternoon. For information contact George Bravdica at 303-934-0077 or gp134b@yahoo.com. We heard some interesting stories by people who have been in dialysis for years. One fellow was wearing a "House of Blues" baseball cap, which had me wondering if he went to Chicago for his transplant. We were even able to relate a tale or two ourselves. We learned some more about peritoneal dialysis, and why it might be a very attractive alternative to hemodialysis. For one thing, it can make traveling much more possible. For awhile, I was finding it difficult to get completely immersed in the dialysis scene, with the potential for a transplant (hopefully just) around the corner. However, hearing stories of transplanted kidneys failing after a few years brought home the reality that dialysis will always need to be an option. The most important thing I heard, was a reaffirmation of the thought that K needs to always stay on top of the caregivers at the dialysis center, and immediately elevate any problems to the next level, when she's not being treated appropriately. This was in response to the issue that arose with the IV antibiotics last week. The worst part of that event was when they just plain weren't listening to her.

Nauseous

Still hanging in there. K's been nauseous most mornings lately, no idea why, and hasn't been able to think about breakfast. I think she's liking her new MWF dialysis schedule. Mandy and I ran some errands on Friday, and visited her in dialysis. The nurse shooed M out right away, but I came back later for a short visit. I like that the room is bright and seems more cheery than the last place. She wasn't pleased to discover they haven't been giving her the IV antibiotics that were prescribed after her surgery. She is so wiped out by dialysis, that she generally sleeps through it, so she had little opportunity to notice if they were doing it right. The instructions had transferred over from the Lakewood center OK, but apparently no one actually read her chart when she arrived at the Littleton center. Even when she asked about the specifics, they assured her they had no instructions for it, until the nurse from Denver Nephrology looked into it. By that time, it had been a week, and it was too late to restart it. The good news is that most of her foot wounds are still healing up, although slowly. Her Kaiser primary care doc has assumed some control of the wound management, which could be a good or bad thing, depending on how it goes next. He's going to determine when to take out the stitches that were left after the surgery.

I've still got a dry cough from the cold I caught in early January. I've got plans for a business trip soon, and am struggling with how to make sure K does the right things while I'm gone. Any support in keeping her on track would be much appreciated.

This is shaping up to be the year of home improvements. Last year, we had our friend Mark finish up several smaller improvement projects, including making our crawlspace usable for storage. Now we're looking at some big projects - recovering the roof, finishing the basement, refurbishing the deck, and maybe even adding a trellis or something, to shade the sun. It's hard for me to imagine doing all that, with the possibility of a transplant looming in K's near future, but that's the plan.

Littleton Dialysis

K switched over to the Littleton Dialysis center this week. Hooray, she's saving 20 minutes of driving each way! She's feeling good enough about her feet healing, that she's back to driving herself to dialysis. She went to Lakewood on Tuesday and Littleton on Wednesday, so she's been well dialyzed by today! We got a few inches of snow early this morning, and expect a few more this evening. Our darling niece Dorothy was released from the Santa Clara Valley rehab center in San Jose today, with the expectation that she'll be living at home, visiting a local rehab facility, and returning to school as soon as it's practical.

Feet Still Healing

K's feet continue to heal. A nurse comes daily, checks her feet, and changes the bandages every visit, which sure makes me feel better about her being home, instead of laid up in the hospital. I am occasionally around when the bandages are off, and K showed me yesterday that most of the smaller wounds are almost gone. The big one on her right foot is still very much there, but looking better. The antibiotic beads are still stitched up inside, but are probably mostly absorbed by now. She's still on oral antibiotics for another few days.

Windy

It's been blustery today, really since last night. We were out at an appointment this morning, talking to someone who wanted to meet her husband up at Beaver Creek, but it didn't look like she was going to be able to get there. Apparently the I-70 corridor to the ski areas has pretty much been shut down for some time, because of harsh windy conditions - blowing cars off the road, that kind of stuff. K's visiting nurse just left, talking about moving to Texas. With her job, she's out in the weather all the time, so it affects her far more than most people. The nurse said K's foot is healing pretty well, but they're watching a new crack that's developed on the bottom of her foot since last week's surgery.

K learned yesterday, about an opening at the Littleton dialysis center, which is only 10 minutes away, instead of 30. The time slot was at 5:45 AM MWF, which gave us pause, but then we decided to go for it. We were even beginning to look forward to the change to our daily schedule that it would bring. By the time we got down to the center to talk to them this morning, they'd given that slot away, and instead had an 11-3 MWF slot to offer. Even though that takes a big bite out of the most useful part of the day, leaving little time for other medical appointments, we think it's worth the trouble, at least for now. We're hoping they'll have a 6:30 AM slot available soon.

She's Home

The surgeon said as far as he was concerned, K was ok to be released today. She can use her feet - she should walk flat, and distribute the pressure evenly. They had her ready to go by 2. Mandy was waiting in the car for her, and rode home on her lap. We stopped at Spicy Pickle to pick up soup and sandwiches on the way home. We had our lunch, and now she's settling in.

Whirlpool

K did her Saturday dialysis in the hospital this morning. Then they took her for a warm whirlpool treatment on her feet. That's supposed to help with circulation, and also do some gentle debriding. She got to see her wounds after surgery, and was relieved to see they weren't very deep. Other than that, I think she had a pretty quiet day. With all my coughing, and our interrupted early morning, and K's sleepiness, we decided I should stay away from the hospital today, and just let her sleep whenever it hit her, which was about the time we were talking. Ken and Freddie came by, and we took Mandy for a medium sized walk down to the Littleton light rail station. We sat in their little waiting room, and drank coffee while Mandy had dog treats. Mandy got the dreaded cold foot syndrome a few times during the walk, but each time after a short foot warm up, she was back on her feet again. We were ready for a nap when we got home, and did so while the 1954 movie, "20,000 Leagues Under the Sea" was running on the TV, which was a slightly surreal experience. Ken and Freddie came by later, and we went out to dinner, then played several rounds of Rummikub. K called just after they left, and reminded me to get to bed early, so here I go...

Opportunity Missed

Day 4 at St Jo. I was awakened at 5:34 this morning by a call from the University of Chicago. They had a possible pancreas/kidney transplant match for K. I was terribly disappointed to have to tell them that K is in the hospital fighting a foot infection with antibiotics and surgery. This was (in more ways than one), a wake-up call for us. We were told our first call might be as soon as 3-6 months, but in fact it came in 2 weeks. I didn't feel like we were ready to go, but K had a completely different perspective. Sitting in her hospital room at St Joseph, she felt like she could just as easily be in Chicago. She told me to call them back, while she checked to see if her doc at St Jo would release her. The docs on both ends agreed this wasn't a good time, so we missed this one, and will plan to be ready for the next call. K was heartbroken at the bad news, and is very mad at her feet right now. She morosely wondered if the next call will ever come, and I asked her to focus on being ready when it does. I was going to sleep in today, but now that I'm all fired up, I figured I might as well let you all know what's happened.

Friday Night

I stayed with K until the late afternoon, then headed home to try to get an early night. I found some nice flowers in the gift shop, and delivered them to her room while I was waiting for my car to be retrieved. Our caring neighbors Ken and Freddie have been graciously watching Mandy while we're away from the house, so she's a very well cared-for pooch. Considering how much she seems to like those guys, I'd say she hardly misses us, but that would just be wrong. She spins in energetic circles when I walk in their door, which makes me feel very much missed and welcomed at the same time. At night before we fall asleep, it's clear she's wondering where K is, as she sits on the bed, and goes on alert at every noise. She wants her K home, as do I. On the other hand, I'm really glad she's in the hospital, and practically under armed guard that won't let her leave her bed. That's the most important factor in getting these wounds to heal, is to get off her feet. We got a light coating of corn snow this evening, while we were playing Rummikub after dinner. I'm still dealing with a dry cough from the cold that hit me 3 weeks ago. It sure will be nice, to be completely over that one.

Back in Room

K's back in her room. I waited 90 minutes for her to get out of a supposed 20 minute surgery. It turns out the waiting room attendant messed up in adding my name to her list when I'd arrived, and so no one knew I was waiting, and I got no updates on what was happening, or even the final debrief from the doc. The waiting room was very full, more so than I've ever seen, after several occasions of being there, and I didn't want to bother people unnecessarily by asking them about her every 10 minutes, but I guess I should have. After they sent her back to her room, someone finally came out, and asked if anyone had shown up for her. I said I'd been waiting an hour and a half, and they were caught completely off guard, thinking no one would respond. Boy, did that get me fired up. It's bad enough having this all happen, and worse to be completely in the dark, when they were supposed to be keeping me updated.

The surgeon didn't find the need to amputate anything today. He debrided wounds on both feet, packed antibiotic beads into the wounds, and bandaged up both feet very securely. The infectious disease doc came by to tell her that they'll have the results of the deep culture sample by Monday, and then they'll know what kind of antibiotic to use, to target the infection. So it looks like she'll be here awhile.

Out of Surgery

She's out of surgery and in the recovery room. No word on how it went.

Into Surgery

Day 3 at St Jo. The Ortho doc read the results of the MRI scan of her feet, and has scheduled K for surgery this morning, to address the multiple wounds. He expects to only do some debriding, and not any amputation today. The decision for that will rest mostly upon the blood circulation in her feet, and he'll get a sense of that during this first surgery.

Frustrating Day

Day 2 at St Joseph hospital. Today has been very frustrating for her. A broken MRI machine delayed getting the important internal picture. A big delay getting into dialysis, while waiting to figure out if the MRI machine would be available. When the MRI machine finally became available, they go the pictures, but the Ortho doc was too busy with other surgeries to read the MRI pics. Because of all that, her foot surgery has been deferred until tomorrow. She feels the foot has been getting worse very quickly today, and this was important time lost. Infections can move so fast, and we've seen that happen more than once, that it's amazing to me when things like this happen.

K at St Jo

Day 1 at Exempla St Joseph Hospital. I visited with K in her room late tonight. She's on an IV broad spectrum antibiotic. I think because this is an issue with infection, they gave her a private room, so maybe she'll be able to sleep through the night during this stay. The doc thinks she'll be there at least several days. The idea is to enforce the "stay off your feet!" directive she's supposed to have been following for the past several weeks. It seems like some surgery is required, but there's no discussion of it yet, aside from K asking about it. With any luck, having the pressure off her feet will help allow them to heal. Her dialysis center knows she's not coming anytime soon. It snowed several inches tonight, but our new CR-V made the trip to and from the hospital an easy and safe proposition. Mandy was disappointed that she had to stay in her nice warm bed in the car while I was up visiting K, but with the issue being infection, it didn't seem appropriate to take her up.

K to Hospital

K called from the cardio doc's office. She noticed this morning that her foot wounds are looking worrisome. The cardio doc agrees, and is making arrangements to admit her to the hospital. She'll need to be in a special area, because of her recent antibiotic use. They won't be able to admit her until 4pm, so Freddie will take her home for an hour, so she can grab a change of clothes before they go back for the 4pm admission.

K Driving Again

K drove herself to dialysis for the first time today. The RTD Access-A-Ride messed up somehow, and didn't show up at the appointed time this morning. It's clear she's feeling some independence, since she just called me from Whole Foods to ask what I wanted her to bring home for dinner.

My cold isn't letting go as quickly as I'd hoped. I woke up very wiped out this morning, and just shut off the alarm and went back to sleep. I dragged myself into work just before lunchtime, having missed a couple of important meetings. But I sure felt a lot better for the extra sleep!

Dorothy's the Focus

I'm not putting much energy into our K&S blog, because most of my available time is going into getting K to and from Dialysis, and making sure the blog for our niece Dorothy is up to date. In case you haven't checked over there, Dorothy's come out of the coma, and has been making incremental progress. They had planned to move her to a rehabilitation facility early next week. She had a setback on Friday, when they discovered her jaw was broken in two places, but they're planning surgery for that on Sunday morning. The jaw will probably delay her move to rehab.

K's still struggling with 3 foot wounds on her right foot, and now one wound on her left foot. The first wound on her heel has indirectly caused the other three, since she's been trying to keep off the heel, which puts more stress on the other parts of her right foot, and on the left foot. The month of dialysis has removed a lot of the swelling that was caused by the failing kidneys. She likes to say she's lost "three Mandys" to the dialysis, and is working on a fourth.

Dorothy in ER

Our niece Dorothy went into the E.R. at Twin Cities Hospital in Templeton Friday night, after a car accident. She's in a coma, and her condition is very serious. She can use all the good wishes and prayers you have to give. Her Mom asked me to create a blog for her recovery status. The address is http://dorothyhk.blogspot.com and it's also listed off to the side under my favorite links.

Back From CA

I was out on the west coast last week, supporting a tanking test on Friday. I got home safe on Sunday night, with no big taxicab adventure this time, other than taking a completely different route than I asked for. I felt a sore throat coming on Friday morning, and wondered if it was just from the cold moist coastal morning air, but no such luck. I've been home sick with a nasty cold for the past three days. Sore throat turned into a runny nose and headache, a touch of Laryngitis, and a lot of coughing, especially at night, making it impossible to sleep. I probably caught it before traveling on Tuesday. My first business trip in two years, and I come down with a cold while I'm out there. Dang. I thought about going into work this week, but I really am miserable, and also trying to avoid exposing my coworkers to it.

Approved for Transplant

Here's some really good news: K has had several communications over the past week, with various transplant people. While I was on travel, she found out she was officially approved to be on the Univ of Chicago transplant waiting list for a kidney/pancreas transplant. The opportunity could come as early as 3-6 months from now. The call could come at 10pm one night, and she'd need to be in Chicago by 7am the next morning. Special transportation arrangements would have to be made. She'd be in the hospital for the week after the surgery, then would need to be in Chicago, with a full-time companion, for the next 3 months. The logistics of that are a little overwhelming. Several coworkers have suggested that I telecommute from Chicago, so that I wouldn't have to take a leave of absence from work for that entire time, but my manager seems less than enthusiastic about that idea. Over the next few months, we'll be trying to identify people other than myself who would be willing to travel out and spend a week or more with her.

She also found out during the past week, that Kaiser is considering a relationship with a transplant facility here in the Denver area, so there's also a possibility that she may be able to get her surgery here, and not have to travel at all. That would be a huge relief. All very exciting news.

Post ER Update

Several people asked about what happened after K's trip to the E.R. last week. The visit and related treatments seemed to help with the symptoms at the time. The fever stayed down, and the chills went away. We're still not sure what that was all about, unless it was the beginning of an infection, and the I.V. antibiotic she's been getting has knocked it down. Or maybe she was just fighting something like a cold without other symptoms. Her big heel wound, which the E.R. doc said didn't look bad, because it wasn't deep, does look like it's healing up slowly. Unfortunately, while favoring her heel, she's developed two other wounds on the ball of her foot - one from pressure, and the other from tearing off skin while removing a bandage. So now we're watching three wounds. Sheesh.

K to ER

K got chills and a fever that was rising through 101.5 late Friday evening / early Saturday morning. We were quite concerned about the wound on her heel and possible infection. After discussing it with a Kaiser nurse, by 2am we were on the way to St Joseph ER. They ran several tests but couldn't adequately explain the fever. The good news was that none of the tests showed anything serious. They gave her intravenous antibiotics to address a suspected infection.

We took the dog with us, so I could run out to the car on occasion, and get my Mandy fix, as well as not having to worry about how she might be doing, in case K had to stay in the hospital for an extended period. By 6am they were talking about very good test results, and discharging her to home, and to her afternoon dialysis session. Mandy snoozed through the entire event, wrapped up snug and warm in her bed in the back seat of my car. We left for home around 7:30am, and stopped at Burger King and bought egg sandwich breakfasts for the three of us. We napped for a couple of hours, then I took K to dialysis at noon, where they gave her more IV antibiotics. She said she had one of the best dialysis experiences this time, probably because she asked for another more experienced technician to poke her arm this time.

New Year's Day Walk

Mandy and I dropped K off for her first dialysis session of the new year, then we stopped at Sterne Park and walked around in the snow for awhile. The lake was frozen over, and dozens of geese were comfortably parked there, enjoying the chilly blue sky day. Mandy's feet got cold about halfway around the park, so I carried her for awhile, then we came upon a great migration of geese, all heading for our location, as some friendly locals dropped by with a 50 pound sack of corn for them to munch on.

Quiet New Year's Eve

We're having about the quietest New Year's Eve of all time. I started out on a short walk to downtown Littleton this afternoon with Mandy, but she couldn't take the cold after a few blocks, so I brought her back home, and dropped her off before continuing on. It was chilly, about 27F, and a brisk wind came up after a few minutes. I was glad to have my hat and gloves with me. I really enjoyed that squeaky crunching sound my boots made, as I made my way along the snow covered paths.

This evening, K and Mandy are sleeping in the reclining chair by the fire, watching the New Year's Eve coverage on TV. We watched the big fireworks show in downtown Denver at 9pm, which they'll repeat at midnight. I woke K up at 10, and we had a quarter cup of Martinelli's to celebrate with the folks at the Times Square celebration. She's only allowed to drink a measured amount of fluid each day, because the dialysis can only remove so much, and we definitely don't want a repeat of that terrible swelling she's been recovering from for the past two weeks.

Home for the Holidays

Well, we've made it most of the way through the holidays -- knock on wood! K has suffered through several dialysis sessions now. They really do take a big bite out of our lives, but they give back life itself, so I guess it's a fair trade. The swollen legs seem to be improving, but very slowly. It's one of those things where we have to take it a day at a time. Then on top of everything else, she got a huge blister on her heel before Christmas, and now that needs to be watched very carefully. We got her to the wound care people two days later, which seems like record time, after our previous experiences. They trimmed it up neatly and bandaged it, and we'll be checking it tomorrow for the first time since then.

It's snowed several times over the holidays, totaling perhaps two or three feet. We even had a nice thick coat of fresh white snow on Christmas day, a real treat! I've been shoveling the snow off the deck, so the dog has a safe place to be outside, and lay around and experience the neighborhood sights and smells and sounds, when the sun is out. While I was taking this picture, I noticed later that a local fox was sleeping down under the pine trees in our neighbor's yard to the West.

Mandy and I are getting used to driving K to and from the dialysis center, in various weather conditions. She's been snuggling into her little bed in the back seat, all bundled up with a small blanket and a sheepskin cover, and has stayed very warm, even when the outside temperature has dropped into the single digits. We've tested our new all wheel drive on several occasions, and it passed with flying colors. The heated seats do help take the chill away quickly. Mandy and I have ventured out for walks in several unfamiliar snow-covered parks, as we've been killing time running errands and exploring. I've discovered that regardless of how warm her little coats are, her feet don't survive for more than a little while, after venturing into the deeper snow. She'll stop and lift a foot, as if it had been stuck by a thorn, and I'll pick her up and warm her feet, before we proceed on. She's not very keen on those little dog booties, but they sure seem like the best solution to the problem. I sure wouldn't venture out into the snow barefooted myself, so I'm not sure why I thought she'd be able to tough it out.

Mandy seems to have hit critical mass on dog toys. For the past few months, she's been totally uninterested in playing with any of the little toys we've gotten her. Then this week, a friend gave her a couple more little stuffed toys, and suddenly she's completely into hoarding all of her toys, moving them around the house from one favorite spot to another, and taking them out and playing with them. It's such a delight for us, to see her perking up and getting a new level of enjoyment out of life.

Here's a little movie clip, of our little toy monger discovering that her new goose makes a honking sound when she bites it just right. It's kind of like a "baby's first step" thing for us. We hope you enjoy it!

K Started Dialysis

The snow forecast for this afternoon started to fall around 1:30 today. Big fluffy flakes. Mandy was not the least bit interested in going out to investigate, although she seems very happy to lay here in my arms and look out the window at it.

K's been to two dialysis treatments since she got home from the hospital last Saturday. I think it's safe to say she's feeling a little better, although she's still feeling very badly. She's going to the DaVita Lakewood Crossing Dialysis Center at Wadsworth and Mississippi, which is a bit of a drive. She's on the Tue-Thu-Sat schedule. She was scheduled for a treatment on Christmas Day, but they're moving that one up a day to Monday instead. They've also moved her from the 2:30-6:30 slot to the 12:30-4:30 slot, which is more convenient for them. So far, she's found rides over there with our neighbors, and I've been picking her up after work. She's trying to setup a regular ride with one of the shuttle services that are available. She's also on a waiting list to get into a closer location in Littleton, but she's struggling with that, since she's been told the Lakewood Crossing one is nicer than the Littleton one.

We launched three rockets (one Atlas and two Deltas) in the past couple weeks. The last Delta II of the year, MV331, launched yesterday afternoon, just before we got off work for the holidays. It's nice to end the year with a successful launch.

K Back Home

Ken and I took Mandy down to Lee Gulch for a walk in the snow, then Mandy and I raced downtown to pick up K in the early afternoon, and now she's beginning to settle back into life at home. She had stayed an extra day in the hospital, hopefully to get the benefit of an extra dialysis today. Unfortunately, this morning's dialysis was unsuccessful, for various reasons, mostly unanticipated clotting and swelling, so they sent her home without it.

She's supposed to begin her regular dialysis sessions next Tuesday afternoon, at a dialysis center about 13 miles from home, about a 30 minute drive. That's pretty far away, but that's all they could arrange on short notice. We're hoping she can get on a waiting list for a center closer to home, and perhaps arrange for a shuttle service to transport her, so we won't have to drive her all the time.

K at St Jo

K was admitted to St Joseph hospital on Tuesday evening. Just before I left her, two doctors came by to consult, and both said she should expect to feel better soon. She had two hours of dialysis on Wednesday, three hours on Thursday, and four hours this morning. She doesn't admit to feeling much better, but I think she sounds more alert and seems to have a better disposition.

Our neighbors Ken and Freddie have been wonderful, taking care of Mandy during the days, while I've been at work. It's been snowing off and on the past few days, and that combined with the Christmas music on the radio, and the Christmas lights on the City and County building and everywhere else, have made the commute to and from the hospital a little magical.

I guess you must've noticed in the picture above, I snuck Mandy in to see her last night and this afternoon, and I'm convinced both my girls were the better for it. It wasn't much of a sneak, really. The after-hours guard in the lobby asked if they knew a dog was coming up, and I told him we were planning on meeting in the Solarium, and he said I was good to go. The Solarium is a big visiting room on the 9th floor with lots of windows. It was very pleasant, sitting in there with the lights out, enjoying the wonderful view of the Denver skyline, and dozing on the couch with the girls.

K to Hospital

K's been troubled with various symptoms that have all been getting progressively worse. Swollen legs and pain, low oxygen level, generally miserable all over. Difficulty sleeping - she's a walking zombie during the day. She falls asleep the moment she sits down to do anything that requires her to stop moving. Difficulty concentrating, and forgetting to do important things like taking her meds.

She consulted with her Nephrology doctor this afternoon, and he advised her to be admitted to the hospital this afternoon, and to start hemodialysis tomorrow.

Our neighbors volunteered to take her to St Joseph hospital while I'm at work, but I'm struggling with the desire to take off work, and be directly involved with that myself. We haven't figured out how we'll deal with the dog, but I'm hoping we'll have enough time and friends available, that Mandy will be well taken care of. Some of our neighbors are leaving town for the holidays, so logistics will get more difficult, but hopefully she'll be home by then.

I wish I were a person whose capabilities always rose to the level of adversity, and I guess with most issues I am, but as always when something happens to K, I turn into an emotional wreck, and my world closes in, until I can barely even think, much less do the right thing. But I'll be trying, as I usually do.

No Xmas Trip

We just canceled our tentatively planned driving trip to see family in CA for the Christmas holiday. K's about ready to commit to dialysis. She's been feeling lousy for a long time, but was holding on, and hoping she could put it off until January. The past few weeks she's been feeling even worse. Her legs have swollen until she has very little range of motion. She's thinking she needs to start soon, in which case, they'll want her in the hospital for the first day, and here in town for the first 30 days. After that, she'll be spending 4 hours at a dialysis center every other day, for the foreseeable future, or until she can get a kidney transplant. That will make traveling problematic, since we would have to find a dialysis center at every town we stop in, and reserve a treatment for her every other day. The people she's asked say that it's difficult to find places during the holidays, because a lot of other dialysis patients are trying to do the same thing.

So... I guess we'll be pretty much on our own for the holidays this year. Our little dog Mandy is trying very hard to be a good companion for us, and is doing a wonderful job at it, so I have hopes that we'll have an OK time, just the three of us.