News, updates, and happenings with the Kragnes family: Phil, our Seeing Eye Dogs, and (me) Rebecca.

Archive for March, 2013

No Malignancy

I am happy to report that I have no malignancy in the polyp that was removed last week. I was pretty sure there wouldn’t be, but there’s always that little bit of doubt. I am very relieved.

Rebecca Kragnes and Zane (Black Lab and Seeing Eye Dog)
3733 15th Ave. S.
Minneapolis, MN 55407
Home: 612-827-2132
Cell: 612-387-5884
Email: rebeccak@tcq.net
Twitter: @RebeccaKragnes
Web: http://www.rebeccak.com

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for my e-mail followers

Part three was a little too long for the e-mailed version of the blog, so I’m reposting the last part for people who are subscribed to e-mails.

On the way home, Lisa told me about her adventures with Zane — a very different animal than Garron. I was sorry I didn’t think to give her a few warnings, because she found out a couple things the hard way. He was not used to the office environment, until she set a physical boundary for him with a stool. Then he understood he was supposed to stay put and fell asleep. Zane relieved in the yard, but because the other dogs had relieved on the basement concrete, he did too, the turkey! He tends to do this under stress, and I’m sure there was some marking behavior involved too. One of her dogs went into protective mode against Zane for most of the evening, and they finally reached an understanding toward the end.
We agreed that — although we hope something like this doesn’t happen again

so much for a hospital free month Part 3

Not only did March 20 mark the official start of spring. It was also my official surgery day. I was startled awake by a person from the Lab wanting yet another blood sample. I always hear people talk about being poked and the frequent taking of vitals being the hardest part of hospital stays. I found being connected to so many things while trying to change positions to be the worst. Thermometers were a snap, but admittedly the automated blood pressure cuffs squeeze so hard for so long that moderate pain was accompanied by tingling in my hand. There was no room on any of the medical floors, so I was on the neurology floor. I expected the harshly-lighted, noisy hospital environment and did as much as I could to mute it. Unfortunately, my neighbor was throwing up almost constantly — poor guy!

After a cell phone separation and Penultimate polyp pop-in, nurses rolled me on a gurney. Blake who wheeled me to pre-op was wonderful about alerting me to any little bumps, turns, and environment changes. For example, I was impressed when he told me the air on the first floor was going to be much cooler than the eighth. My pre-op nurses Jeannie and Mary were just as good about telling me exactly what was going to happen and what they were doing. They read and had me sign the consent form, gave me some antibiotics through the IV, and gave me a shot of blood thinner in my stomach area. Dr. N. strolled in telling me it was time to say goodbye to the little friend behind me. This is when he said he was Swedish and knew Kragnes was Norwegian and pronounced Krogness in Norway. My signature is very small, so he didn’t see it on the consent form. It really impressed me when he reread the consent form to me and made sure I knew exactly what was going to happen with all of the contingencies. The final contacts before being wheeled into surgery were Dr. Burqe the anesthetist and two anesthetic nurses. I know Dr. Burque looked down my throat — in case he had to insert a breathing tube with general anesthesia — and said it would be no problem. I think the male nurse’s name might have been chad, but this is where details like that start to get fuzzy.

I remember being wheeled to the operating room, but it was a quiet ride. By then, I’d already been given relaxation meds. I clearly remember being impressed with the echo and lighting in the room. It looked like there was sky lights, but most likely, they were just very bright, full-spectrum bulbs. The procedure took place right on the gurney, and I recall being surrounded by a lot of people, being fitted with an oxygen mask and falling into a dream-like state. I wrote about contingencies earlier. Dr. N was going to get “it” out with a flexible scope and a snare. If that worked, I would only need lite sedation and apparently would be able to talk to them. If any cutting was involved, , I’d go under general anesthesia. The surgery turned into a cross of both. Although he was able to remove the polyp with the scope, its large size surprised everyone including Dr. N, It was two inches in diameter. Fortunately, Dr. N. was kind enough to call Phil and explain all of this. For those like me who have trouble visualizing two inches in diameter, Phil told me later that it was like two thirds of the short side of my iPhone 5. I’m not quite clear on why the size meant going to general anesthesia, but I think it was to avoid pain. Phil updated my parents.

The first thing I noticed in recovery was the rawness in my throat and a roughness in my voice which still comes and goes. That’s when I was told that my throat was so small they had a little trouble getting the breathing tube where it needed to be. I was pretty skeptical when Dr. N told me I’d have little to no pain in the area where he worked after surgery, but he was absolutely right. Memories of the recovery room and being wheeled back upstairs are present but blurry.

Nancy My nurse reunited my cellphone and me soon after I arrived in the room. Strangely, I could manipulate it just fine but don’t remember what I did. I must have dozed for a while, because the next thing I remember was having the nurse ask me if I wanted lunch and reading the menu. I was ready to eat but not quite able to call the cafeteria myself. They called me soon after, and I ordered a wonderful-sounding lunch of tomato soup, chicken salad sandwich, chips, banana, chocolate chip cookie, and skim chocolate milk. Soon after I hung up, Nancy came back in with some very hard news for me. Although a Fellow left orders for a regular diet, the surgeon felt the size of the polyp warranted a more cautious approach. He wanted the processes involved to have a little rest after the polyp’s removal. I was asked to do a full liquid diet for two days before resuming regular eating. A full liquid diet went beyond the famous 7-up and Jell-O clear liquid diet, but it sounded pretty restrictive to a woman primed for a yummy lunch after one and a half days of no food or drink. I was given the explanation of why this was happening much later, so though I tried to be nice about it, I was miffed. Of course, the yummy lunch was brought, and at least I could voraciously consume the tomato soup and chocolate milk. The full liquid diet arrived minutes later and included an unidentifiable, terrible-smelling creamy soup I didn’t eat, chocolate pudding, vanilla ice cream, and apple juice. Everything but the soup was fine, but Shasta Cola was not the pop of choice. I found some money in my wallet and asked the nurse to go down to the machine and get a regular Pepsi — my favorite fluid available.

The good news was that I was going home sometime in the afternoon. Phil took the day off to be with Zane. I talked to Phil several times brainstorming how I could get a ride. The social worker said she could get a ride for me, but we’d been down this road. The university hospital procured a well-equipped medical van ride for Phil, but we were stuck with the $50 bill insurance wouldn’t cover. Most friends were gone, and a few had done so much for us that I hated to ask more. Lisa was coming home from work, and we made arrangements to meet in the main drive after she left work at four thirty. I was smart enough to tell the hospital my ride was at four thirty, because I knew this might mean making it down in time to catch Lisa fifteen minutes later. Jessica the nurse read my discharge orders. I’ll be taking iron pills twice a day with meals for at least the next couple months. Follow-up appointments have been made, and I’ll be calling Dr. N’s office to go over the microscopic polyp examination results. Because of its softness, both of us expect it to be benign.

We ran into a snag when Dwight’s charger and cord couldn’t be found. I dreaded telling Dwight. His reaction was that he didn’t really care, and happily, they were found after I arrived home and will be mailed.

On the way home, Lisa told me about her adventures with Zane — a very different animal than Garron. I was sorry I didn’t think to give her a few warnings, because she found out a couple things the hard way. He was not used to the office environment, until she set a physical boundary for him with a stool. Then he understood he was supposed to stay put and fell asleep. Zane relieved in the yard, but because the other dogs had relieved on the basement concrete, he did too, the turkey! He tends to do this under stress, and I’m sure there was some marking behavior involved too. One of her dogs went into protective mode against Zane for most of the evening, and they finally reached an understanding toward the end.
We agreed that — although we hope something like this doesn’t happen again

so much for a hospital free month Part 2

A hospital EMT named Cat helped me on the gurney. Soon after, a nurse named Dawn came into the room. I knew instantly I’d like her, because of her wry sense of humor saying I probably hadn’t planned on spending time with her this evening. Then she took a look at “it” and gave quite the exclamation saying that was “a big mama”! I both appreciated and chafed at her honesty. Later I told the nurse practitioner Pat about it, and she said Dawn was their frank nurse. When Pat first opened the door to say she’d be back in a moment, she had a clipped tone to her voice which made me think I might not like her. But she was probably my favorite person in the ER. Yes, I was a wimp and cried. She was the first to hold my hand after what felt like an endless wait. She nicely let me know that moving my finger with the oxygen monitor on it was setting it off as was holding my breath. Her hands were warm and gentle no matter where she had to touch, and every time she left, she got stuff done as quickly as she could. Pat was the one to tell me I was anemic (low Hemoglobin / red blood cells). Pat brought in a soft-spoken Dr. Hamilton to look at “it”, and after a quick consultation, Pat told me “it” was not a hemorrhoid. She called it a growth that wasn’t supposed to be there. Perhaps for some people, this would have been difficult news with the fear of cancer, but I felt relieved. Dr. paddock the admission doctor was just as nice but had the coldest hands! Later I told Pat that “it” went back in, with fleeting visions of going home. Those were quickly quashed when Pat and Dr. Paddock said it didn’t change the plan for admission.

My second-favorite person in the ER was a lab technician who wore wonderful perfume. She thanked me for my compliment and told me not to say anything. Apparently they are not supposed to wear it. She told me the perfume was named for a singer named Nicki Minaj, and she seemed to gain a new respect when this 40-year-old started to softly sing one of Nicki’s biggest hits. I think it also helped that I was good-natured about a couple of missed attempts at drawing blood. I hadn’t drunk anything since supper, so finding a useable vein was tough!

I was on the gurney for hours, because a bed was not available. I could have gone home and come back the next day, but coordinating rides would have been impossible! It was also apparent that I really needed help as described later I used this gurney time to update Phil and text my doctor and parents. I didn’t expect a response, but Mom reminded me the next day she’s a light sleeper. Mom replied this was supposed to be a hospital-free month. This was a needed laugh, and her offer to call was so apreciated! She’s not a nioght owl like me, so I told her I was OK and to go back to sleep.

I was finally wheeled to my room on the eighth floor about three in the morning. I enjoyed the majority of my wheeled rides, including this one. The one thing which made this ride a little harder was the silence at least partially due to lack of English. He would undo the locks on the gurney without warning, and the combination of the loud sound and palpable jolt made me jump! Then I had to be fitted — to the best of their ability given the late hour — with a CPAP mask. I use one at home to force air, so I don’t snore. But when I left the house, no one knew this hospital visit was going to be what it became. The face masks don’t seal well for me, so neither the quantity nor the quality of sleep was the best.

My night nurse Arthur was kind, but I was glad I didn’t have to use the bathroom on his watch. The unfamiliarity of the routine bleeding I’d been used to for months startled a female nursing assistant the next morning. She brushed off my detailed warnings until suddenly, she had to deal with it. this time, she had to do all clean-up, because I had no hands capable of doing anything. I had an oxygen monitor on one hand and was connected to an IV pole to receive fluids with the other. Because surgery was possible, aside from a little water to take medication, I had nothing to eat or drink since supper at five Monday night.

An ongoing monologue I had throughout my stay was, “Now where the **** is that stupid call light?” I had a malfunctioning light, so sometimes people would appear when I hadn’t pressed it. Other times it was not within reach of me — given my restrictions of being attached to tubes, chords, and — later that day– anti-coagulating massage slings on my legs.

My morning nurse Lualle seemed abrupt at first, but she handled my worries and especially cleaning me and the bed up with warmth and understanding. When “it” was visible, I had less control. I’d always told Phil that having to depend on someone for this kind of stuff would be hard for me, and it was very humbling! I also had to be catheterized for just a minute for a urine sample. Apparently, the urethra is not in the same place on women, and there was a lot of poking and prodding before we had success. I am glad I didn’t have to where it constantly.

There were visits from Dr. Paddock’s admission partner Dr. Sangrin and a colorectal assistant named Maggi. They both saw “it” in the flesh so to speak. Maggi estimated it was about the size of a golf ball. Later, another colorectal doctor came in when “it” was not visible. The torture of this doctor trying to find “it” ranked right up there with the bumpy ambulance ride and several people’s attempts to push “it” in. But the decision about what was to be done was in the hands of the head colorectal surgeon, who had many Tuesday appointments.

While waiting, I got on WIFI and tried figure out a way to get a charger for my iPhone. The social worker check with the Patient Rep office — which had chords for earlier versions, but not for mine. Another nurse Marlene was kind enough to wash the clothes in which I arrived. After a nap, I asked for the regular phone and called Phil to update him and strategize about how I could get one of our cords. The problem was Phil was scheduled for dialysis after work. Zane was spending the day with our friend Lisa until Phil got home. That was at nine in the evening. Another friend, Dwight, came through for me later that day. His wife has the same phone as I do, and he’s been wanting to get her an extra cord. He ran it over Tuesday evening, but meanwhile, I could do nothing but be with my thoughts and talk to a few people on the phone. Phil updated my Mom. She called and we spent some time on the phone.

I was always ready to end the conversations abruptly when the Colorectal surgeon arrived. That wasn’t until about 5, and at least by then, my afternoon nurse Kristin had set me up with a radio. It turns out Kristin knew me, because her parents attend the same church I do. We were having this conversation while she listened, understood, and responded to the same warnings I attempted to give the nurse assistant that morning. The only thing I had to correct with a smile was her “if I bleed” to “when I bleed”. From then on, I had a female nurse help me through the bathroom routine. The good news about the radio was discovering a new station I liked. The hardest part was that many commercials were food related! … Subway, McDonald’s, frozen food in the grocery store … it all sounded great! When Kristin asked if she could get me anything, my standard answer was “a Big Mac and Fries”. By then, we knew surgery was going to happen Wednesday, and Kristin told me I could have it then.

I’m not even going to attempt to spell the colorectal surgeon’s name. it’s Swedish, I can’t even pronounce it, and I’ll mess it up. Dr. N and I had rapport right from the start. I told him I had a little friend who appeared now and then and either was wrestled back into his hole or went crawling back. Luckily, he had popped out to say hello. Dr. N told me he wanted to help me get rid of my little friend. Even though that meant surgery, it was still a relief. Dr. N got to deliver the joyous news that “he” had a stalk and was the first person to use the word “polyp”. the polyp disappeared naturally after very painful pushing didn’t work. Sorry to give such detail, but it’s important for a reason. I was told that if the polyp had remained visible to Dr. N, I probably would have been in surgery that night. There was concern about blood loss. I was also startled to learn that the colorectal fun will continue. Most people don’t get a full colonoscopy before age 50, but I have the “privilege” of starting early. The only consolation is that Phil also did.

The time between Dr. N’s and Dwight’s visits was filled with the shared wry sense of humor and laughs with an IV nurse named Carol. My IV had stopped working, so with the assistance of the IV fluids already on board, she inserted a new IV on the other hand.

Dwight breezed in with the iPhone charger, a happy disposition, and a little Easter music amidst my Lent of humility. for the next few hours, I was a happy camper! I loaded the Amazon Cloud Player App and could listen on WIFI to everything I bought from them. This was great for finding some music to distract me from my anxiety and help me settle down for the night. My night nurse Vali helped get the respiratory therapist moving. Kristin called, but nothing was happening. The respiratory therapist found a much better fitting mask more like the one here at home.

I also listened to a meditation podcast about St. Joseph — using a Catholic app –, which I felt had been especially for me. Joseph trusted God no matter what, and three words from the music stayed in my head all night. “God is Enough”. By the way, just as on St. Patrick’s day one is supposed to where green for the Irish, on March 19, one wears red for the German celebration of St. Joseph’s Day. Being three quarters German and one quarter Irish, I do both. I primarily wore the white of the hospital gown that day, but maybe red blood counts as wearable — even if my red blood count was low.

so much for a hospital free month Part 1

Some of you who follow me on Twitter and/or are close family or friends know what I’m going to cover in the next blog entries. It’s plural, because I’m afraid that doing in all in one could cut it off for those who get the blog entries by e-mail. Those who know the basics may want to read on for a few more details. I hope to be detailed enough for interest but not for squeamishness. I wouldn’t recommend this for reading over dinner. It might be more appropriate for the bathroom.
While Phil’s health problems have been going on this summer, fall, and winter (since it’s officially spring now), I was keeping a dirty little secret of my own. Most of my secret-keeping was shame-based, but some was the rationalization that this household could really only have one health crisis at a time. I hope by writing this, perhaps I can spare someone else the shame I have experienced over the last six months. I was cutting corners on some of my shower routine, because I had a few extra things to do. I was also careful not to be out anywhere long enough that I had to use the restroom for anything more than a #1. Any additional toilet activities anywhere but my home was playing a terrible game of roulette. This is because I had what I believed to be a huge hemorrhoid. Because hemorrhoids were associated with weight, I didn’t want to tell anyone what I was experiencing. Then last fall, I had to play at church with this thing out and major protection from the bleeding it’s appearance prompted. Our cleaning person saw the blood but knew nothing. Phil knew I was having a problem, but not the extent until that Saturday of Phil’s good weekend with no dialysis port in place. Zane was very keyed into the problem during these times and tried to be closer than I like a dog to be in the shower. Remember, this is the dog who hates water, so I knew he was concerned — especially when he and I were alone in the house. I finally told my doctor what was happening and went to see her soon afterward. I also told my mother around this time. The problem was that there was really nothing for my doctor to see, except this tiny hemorrhoid she thought was my problem. This thing didn’t feel tiny, and in fact it was ggrowing! I kept using the suppository medication she prescribed, and it seemed to keep it at bay sometimes. This thing made its appearance at random, although I noted they were getting more frequent and a little more painful. It usually meant an impromptu shower, a session of imploring / bargaining with / thanking God, and an increasingly difficult attempt to put things back where they belonged. Saturday the 9th of this month brought on another of the incidents. Phil was at dialysis, and I was by myself. I almost blacked out in the shower trying and finally succeeding to make it disappear. This really scared me, and a few friends can attest that I was pretty shook up. I told my doctor, and said I’d only forgotten the medication one day. She told me that if these continued, it might be time to go see the colorectal surgeon.

Then came this past Monday night. I was unusually tired and decided to go to bed much earlier than normal. Little did I know that it would be very late by the time I got to sleep, and it wouldn’t be on my own bed. Things took the usual course as described above, except I was unable to get the desired results. I had to call Phil out of bed and ask him to call the EMT’s thinking they’d probably helped little old ladies with this problem in other situations. I kept saying to myself that somebody had to*see this! Phil could barely understand me when I asked for a towel. It felt like I was losing a lot of blood, couldn’t catch my breath because of my crying, and was basically a hysterical mess by the time the ambulance came. It didn’t look like a lot of blood loss, but they hadn’t seen all of it which washed away in the shower.

One look at the situation had then asking Phil to gather clothing. It wasn’t life threatening, but they knew they couldn’t fix this. They helped me grab my jacket, keys, and wallet, and Phil gave me my cell phone. Phil was asking them about whether it would be an overnight visit. they said it probably wouldn’t, but they weren’t making promises. Probably the worst physical pain was the bumpy ambulance ride. Observing the ambulance was more brightly lit than many city buses, I calmed down but not enough to make rational decisions. Poised to call my doctor, the EMT’s reminded me it was ten thirty at night. Attempting to text my doctor kept me preoccupied during the ride. I heard the EMT’s describe my condition as a yellow on their color chart similar to the security one many people and companies use. The wheelchair ride to the room within the ER was strangely pleasant, but I was dreading the shame to come.

March mixed Message

Phil is sleeping after getting many warts on his hand frozen today. Warts are a part of life as an immune-suppressed patient, and he generally leaves them alone. But given their location, he was catching them on things and hurting himself. He’s in some pain, but given the last six months or so, it’s all relative. Speaking of the last six months, we are hoping to make March our first hospitalization free month since September.

It seems the mouse community in the house is not as controlled as we might like. The pest control person comes Wednesday. Especially at this time of night, I get to hear the squeaks and the rustling, and it’s a bit unsettling. Everything is going in hard boxes with tight coverings. We were disgusted to find that a big bag of Skittles — Phil’s favorite candy which helps produce saliva making his fluid limits less uncomfortable — had to be thrown out, because these vermin chewed through two layers of plastic.

It’s probably going to be a shocker, but the rest of this update is going to be positive! We’ll start with looking forward to playing in my green at the Malt Shop this St. Patrick’s Sunday

Besides the coming spring-time with moderate temperatures, Lilacs, and our birthdays, We are hoping for another positive change in the next couple months. Phil’s supervisor is retiring. It is still being determined what the application process would be like, but he’s hoping to have a fair shot at the job. Friends have wondered whether there might be some discrimination because of Phil’s health problems. Given that he is known for his work ethic, I don’t think that will be a problem. I thought the way he informally expressed interest was clever.
He was asked by the department director to put together a list of qualities he felt should be considered for that position, and the director seemed to like his list. She asked if he could think of anyone who fit the description, and he jokingly said that President Obama probably wouldn’t want to leave his current position. After a bit of laughter, she asked if there was anyone in the department or at the University who had these qualities. and this is when he said that perhaps shameless self-promotion should have been added to the list, because with 15 years of experience in his current job, he felt he fit the criteria. He showed me his list, and as the totally unbiased wife I am, (ha ha ) I believe he does fit the list. Obviously the increase in salary would be nice, but that’s not the only reason he wants to apply. Five years ago, he said that he wouldn’t want to give up wearing shorts and the one-to-one interaction with students and employees. He’s still hoping for some interaction and has a keen interest in helping especially employees. But the reality is that there is no further advancement in his current position. I think he’s looking for new challenges and to make a difference and influence issues more broadly. As one of the people who has worked longest in his department, he has seen several Administrations and organizational structures come and go. Over the past couple years long before his supervisors’ retirement was announced, , I’ve heard him express a lot more interest in the managerial/administrative side of things. He has heard that they’d like to have someone work in the position jointly with his supervisor before she retires at the end of May. so we are hoping the application process will begin and a decision made fairly soon. Depending on how the application process is structured, Phil could be competing with a friend and colleague he helped hire and supervise. This man is another highly-respected person at the U, is currently working in another department, and has expressed some interest in coming back to the department in which Phil works. Though obviously he’d rather have the job — Phil has told me he feels he could be comfortable being supervised by this friend and colleague . Phil saw this dynamic work very well in his early years working at the U. Phil’s former-boss was a man who hired a woman. Eventually, this woman became this man’s supervisor.

I may soon be going to the Apple Store for the first time. My iPhone is wonderful, but there are things about it which have puzzled us. It acts very differently than others, and we’d like to figure out why. A phone call didn’t get to the bottom of it, so we’re taking it to the experts.

And speaking of the iPhone, I’d like to end by telling you about a few apps which have and will continue to revolutionize the way I am able to use it. I type well on the computer, but this one-finger typing on the iPhone’s flat screen just doesn’t work for me. An external keyboard can work, but it isn’t very convenient on the go. Dictating is great, assuming what you are saying is not private and the environment is quiet. There are apps which supposedly guess what you’re trying to type, but it still feels clumsy to me. On January 31, a new app called BrailleTouch was released which uses the Braille keyboard to enter text. It is currently useable with only uncontracted Braille, but even with that, I am typing so much faster. When editing capabilities and contracted Braille are added, it’s going to be even more wonderful! I can send e-mails, texts, and tweets. Copying and pasting to and from the iPhone’s clipboard means I can use Braille input for a lot of apps!. BrailleTouch without all of these abilities — just the typing) is free in the app store. It might be fun for sighted people to play with it. Read2Go is an app which produces synthesized speech for some books available through the Web site http://www.bookshare.org. this spring another app will be available, so library of Congress audio books will be able to be downloaded and read on the iPhone. I hope the day will come when I’ll be able to own a Bluetooth Braille display to read Braille transmitted from my iPhone. Valuable information can be gained for blind people by using GPS apps to learn about establishments nearby about which we may not know. My sister Amanda tweeted me an article about an invention being considered which would take maps appearing on the iPhone and make them available in Braille. There is an app now called Tap Tap See which identifies objects after a picture is taken. When I was sick, I used another app called VisWiz to send a picture of an unlabeled pill bottle to someone who told me what was written on it. LookTell is an app I use at the Malt Shop to read currency using one of the iPhone’s cameras. Despite today’s many challenges, I feel fortunate to live now when all of this technology is available in one small device to increase my independence and make accessible more information than ever.

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