This started out to be a story but has been evolving into a journal. I try to keep it updated for accuracy before things are forgotten.

The signs have been there for some time but we didn't recognize them for anything as terrible as this, Chronic Renal Failure. Living in a desert climate one would think that because of the heat (105 ⁰ F) you would be thirsty alot and so drink a lot of water. Now we live in a cooler mountainous climate and still a lot of water was consumed. When Ken was 2 years old he was in the top 95 percentile for height. By the time he started grade 1 he was the second smallest child in his class. On three seperate occasions with different doctors he was tested for Diabetes because we noticed he drank a lot of water. Each doctor said the results were negative. The doctors told us that some kids just drink a lot of water and grow at different rates. In May of 2000 Ken became ill with appendisitis. When the doctor was testing his blood as part of the diagnosistic process an abnormality was found in his blood. We were told his haemoglobin was very low. If it had not been for his appendix we would not likely have known about his kidney failure until much later.

We went to our local hospital for some further testing. They suggested we go to Children's Hospital in Vancouver but we opted for Calgary instead. Having lived in Calgary for a good many years I knew the good reputation of the hospital. I knew nothing of the Vancouver hospital. At the end of May we went to the Calgary Childrens Hospital in Calgary, Alberta Canada for more extensive testing. There he had a biopsy on one of his kidneys. After wards, the nephrologists told us that Ken has a kidney disase. Ken has been put on a medication called EPREX . He is also taking Alpha One, Iron, Dia-Vite, and Tums. This has helped him immensely. At first he was taking EPEX three times weekly. This was hard for him as he does not like needles. Emla cream is used to numb the area of his injections. Later, it was changed to once a week. On Sept 1,2000 he was instructed to take it every ten days. Now it is every 14 days. Some of his other medication dosages have been decreased too.

During one visit to the Childrens hospital we had our other two boys tested for renal disease. One son tested okay and the other tested okay but it is still to early to be sure because of his young age. Both boys have a 50% chance of inheriting this disease.

It is a hard and difficult thing to deal with and manage. We try to keep life as normal as possible in our home. With Ken feeling better this has been easy. His behavior and temperment has improved vastly to the good. A tentative date for his transplant surgery in Janurary 2001 has been planned, however, we feel it may be sooner.

My wife, Lisa,is going to be the donor. She has gone through all the tests. The tests have been everything from simple to painful. Our doctor and his team of specialists have been very instrumental in helping to get the appointments set for all the tests.

I don't want anyone thinking that this is easy to work through. I feel that any kind of organ transplant is serious business. It has been a very difficult time for all of us. Everyone in the family unit is affected in some way. Through all this we have become a closer knit family. We have been working on our own form of crisis management. There are schedules to work out, many things to do, travel arrangements to be made,etc.

I don't mind saying that this very unfortunate and sad health crisis hasn't been made any better by our other luck, bad luck. I had two vehicles, a mid size car and a small truck. All sorts of repairs had to be made to the car to make it road worthy for long distance. The truck had engine problems too. I had the car fixed and it was running good. We used it to drive Ken to Calgary, for bi-weekly blood tests and for me to commute to work in Nelson, B.C. In October, Thanksgiving weekend, on my way home from work the engine blew. Now the car sits in a scrap yard. In the meantime I thought the truck was fixed. On my way to work the engine started to knock and over heat. Now it is sitting at a garage waiting for a used engine. Trying to keep transportation going has been a challange. My employer has been very supportive and good to us. My friends and co-workers have also been supportive. Some of them have gone a long way off their normal route home to bring me home. My family in Calgary has helped a lot. There has been other help too from local small businesses. One has helped by repairing my radiator for free, another for price reductions on auto parts. There are others who have helped us. All these people have been integral in helping us to cope better. I can't say enough how much we appreciate all the help and support that has been given to us.

One thing we have to look forward too is this... Things will get better and Kens health is in the best of hands. We look forward to being able to help others in our community when all this is over.

Ken is on his way to Disneyland this October through the efforts and volunter work of an organization called Dreams take Flight. This has brought our spirits up. It makes our hearts glad to know that he can enjoy himself immensely for a day and not think about anything else but fun, fun and more fun.

After a newspaper article was printed some friends of ours loaned us a car for several months. This has been very helpful to us. The whole community of Castlegar has been wonderful.

All the tests are done. Now we wait until Dec 11,2000. This will be quite a day for all of us.

Dec 11th has come to us finally. It was a long wait until the surgery was over. Lisa and Ken are doing great. I have to say that the level of care given has been exceptional.

When Ken came out of surgery he was brought to ICU. After a while I was able to go in and see him. I can't describe what I was feeling at that moment except part of what I was feeling was relief. Relief that that surgery went well and he was going to recover with a new chance at life. What I saw when I first walked into the room was a clutter of monitors, eqipment, wires and tubes...and Ken, buried underneath all this. I sat with him for what seemed a long time before I was asked to leave for awhile.

I had just barely left Ken in ICU and was walking down the hall towards the room cluster where Lisa was. I had only taken a few steps from the ICU doors as an announcement came over the P.A., that a CODE RED was in progress in J cluster. That's where Lisa was. Doctors and nurses came running from everywhere. They met another team of nurses who had just come from J cluster. I saw my sister, who was there as my support, and I knew something was wrong. One nurse said out loud "It's the donor". My legs went weak right off. I saw on my sisters face that something was terribly wrong. Lisa's breathing had stopped. One of the nurses had come into the room to check on her and the monitors. Lisa was still heavily sedated and on a strong dose of morphine and was experiencing a reaction to it. It was very fortunate the nurse was there at that moment. The nurses gave her a shot of some sort of medication to counter-act the effects of the morphine. She then started to breath again on her own. This day has been a most traumatic expierence for me. I just went through a very trying and emotional event having two of my loved ones on the operating table at the same time and then almost losing my wife. One valuable lesson I learned is this. DO have a support person with you. It does help to have someone there with you while you are waiting, even if it is just for company.

After three days Ken was ready to be moved from ICU to his own room. It was a room where he would be by himself because his immune system was pretty well non existant.

The staff at the Childrens hospital have given Ken a Sony Discman for a Christmas present along with two CD's. He got this about two hours before going into surgery. That sure made his day. He had a big smile on his face. The staff and nurses have taken very good care of him and Lisa.

The day after Christmas Ken had to go for his blood test. The doctor told him things look good and he can come every two days now. Later in the morning the doctor called and said his creatinine was high and we had to bring him in for admission. They did an Ultra sound which showed nothing wrong. A renal scan was done and that showed nothing wrong. A biopsy was done and that showed nothing wrong. This left only one thing, the anti-rejection medicine. They changed medicine and now he is doing well. A biopsy would still have had to be done to see what is going on.

Ken is doing very well, in fact, his doctor told him how impressed he is with Kens improvement and cooperation. His doctor holds high regard for him. Ken has been very tough throughout this whole ordeal. Ken and Lisa get to come home to Castlegar around the first of February. They are going to fly home rather than sit in a car for 8 hours or more of driving. There is an organisation called Hope Air that gives flights to patients for a very small fee. They take care of the details for the itinerary.

Ken has gone from 60mg/day of Prednisone to 7.5 mg/day around Jan 6,2001.

Jan 30,2001
Ken had to get biopsy today because his creatinine level rose to 95. It is best to find out what is happening.

Jan 31,2001
While at work I recieved a phone call from Lisa. Ken is not doing well, he is experiencing a grade 1 rejection. His creatinine level is high again. Ken had to be admitted to the hospital. I drove to Calgary right after hearing the news from Lisa. I went mostly because Ken and Lisa were in need of emotional support. I went straight to the hospital. His doctor wants to give Ken a mega dose of Cyclosporine, 450 mg/day for three days. Then the dose will be cut in half for three days then cut in half in again. Ken is not very happy, he is experiencing some very tough days in his isolation room. His immune system is very low because of the medicine he is getting. He was looking forward so much to going home tomorrow. Seeing me come walking into his room helped bring his spirits up. Lisa stayed with him the entire time. I had to go home to B.C. on Saturday, there was really nothing more I could do for Ken and Lisa.

Feb 5, 2001
Lisa called me again at work and said that the mega doses of cyclosporin were not working. The chances were good that Ken would need another biopsy to see why the mega doses of cyclosprine were not working on him. This would most likely happen on Thursday. I had talked with Kens doctor later in the day and he explained to me about a newer drug called FK506 that he would like to try. The side effects are less than those of cyclosporine. I decided to go to Calgary again on Wednesday.

Feb 7,2001
I took our other two sons to Calgary with me so that Lisa could have a break from the hospital and spend some time with them. She kept my coming a surprize to Ken. When I walked into his room he was so happy to see me again. He was doing so much better on the FK506 that they let him have an overnight pass from his room. We went to Grandmas house where he was almost asleep immediately. We took him for his blood work the following morning and things were looking good.

Feb 9,2001
Ken had his blood work again today. We had to wait until his doctor showed up for his followup. After a thorough check up he said he would see us in about three weeks. Ken thought he was joking. When he realized he wasn't he started to cry from happiness. Lisa and I were quite surprised too. We figured in a couple of more weeks they would get to come home to Castlegar. Ken is so excited to leave for home. Things are moving in the right direction. The FK506 is working very well for Ken.

Feb 24,2001
It is two weeks that Ken has been home and no problems. One thing we learned from his blood tests are that the local tests show his creatinine level to be about 10 points higher than the lab at the Childrens hospital. This is because of the difference of accuracy of the tests, not the actual levels of the elements being tested. Could also be the difference in calibration from one machine to another.

Mar 17, 2001
It is now about three months since Ken's transplant. All is well. He has had some fluctuations in his blood work levels but were probably from him having a bad cold. Ken has been to Calgary twice now for a follow up and doing great.

Mar 19, 2001
Ken is in Calgary at the moment and although he is feeling good his creatinine is high at 135.

Mar 25, 2001
Ken has had a rough weekend. Although his creatinine is going down he is still experiencing some rejection. His immune system is really low and cannot be exposed to germs. His doctor had him on intravenous medication and is hopeful Ken will be released soon. The last time Ken was in the hospital he had a mega dose of medication and that may have left some scarring. Now he is on FK506 and they may give him another mega dose to bring his levels back to normal.

Mar 26,2001
Ken has been discharged from the hospital this morning even though his creatinine has risen slightly. He is being treated and his blood work will be done daily for a week and then a biopsy will be done.

April 3,2001
Calgary was having a terrible blizzard on this day. Ken was also discharged from the hospital this day. His creatinine was normal, the treatment did its job. There was nothing that was going to keep Ken and Lisa from going home, not even a blizzard. They called me at 8:30 AM and said they were about to leave Calgary. At 1PM I got a call from Lisa that they were only as far as High River, which normally is only a 45 minute drive away. They went south on the #2 hiway and came across a road closure. They had to turn back and take another route. There were trucks, cars and big rigs strewn all over the road and in the ditches. They were jack-knifed and crashed and abandoned. Driving was treacherous. The road was closed off somewhere between Calgary and Fort McLeod. Very fortunately, Lisa and Ken made it through those places before they were closed. They headed south to the #3 hiway and then on to the Crowsnest Pass. This pass closed too after they went through the avalanche gates. I had no idea at this time what the roads were like or about the closures, I was at home waiting to hear from them. I knew Lisa would be tired from the driving so I grabbed my father-in-law and we drove three hours to Cranbrook to see if we could intercept her. The plan was to take over the driving for her. She didn't know we were coming until she phoned home and learned that we had left to look for her. We did meet up with her in Cranbrook and I drove the rest of the way home. While waiting for her I was thinking the worst, that they were trapped in the blizzard somewhere and would have to spend the night somewhere. Once over the Crowsnest Pass you enter the mountains and leave the foothills behind. The roads became better and better the further west they drove. There wouldn't be a team of horses big enough to keep those two from coming home after spending those three weeks in Calgary.

April 23,2001
On April 20 we drove to Calgary again for a follow up visit. All went well. Ken is able to go to school again. He will go for two days a week to start with. His creatinine is looking good these days. He doesn't have to wear his mask anymore either when out in public. This makes him very happy. It makes everyone feel good when there is some good news thrown in there once in awhile. Over all I would say things are getting less stressful. Ken is getting back to normal and so is our household. We are still under no dillusions that our lives will be free from this experience but that the chances are getting smaller everyday of anything happening.

May 10,2001
The hospital called with some good news today. Ken can go for his blood work twice weekly now. This makes us all happy because it shows there is some improvement here.

May 16,2001
Another trip to Calgary this week. Nothing bad came from this one. Ken had a follow up examination and things are still looking good. Ken can go to school three days a week and stay for most of the day.

May 30,2001
Ken has been taken off the Lasix medicine. Even though his creatinine is fluctuating up and down he is still doing fine.

June 4,2001
The FK506 medicine has been reduced to a dose of 4mg twice a day and the Prednisone has been reduced to 20mg once a day.

June 24,2001
Next week, on July 2 Ken goes to a very unique camp for the week. It is run by the Easter Seals. There is nothing but fun for him. There will be others there who are doing dialysis, are waiting for a kidney transplant, and who have already had a kidney transplant. It was hard at first to convince him of going, but as soon as I told him there would be no nagging parents for the week and all fun he wanted to go.

July 2,2001
Ken had his doctors appointment before going to camp. Things are well. Some of his medication has been lowered and his water intake is lower. Ken went to camp today and has been looking forward to going.

August 4,2001
Another doctor appointment today and more good news. The noon dose has been taken away and only 10 glasses of water instead of twelve. The prednisone has been decreased to 12.5 mg per day. Ken is starting to thin out again. We have to go back in September for the nine month biopsy. This is routine.

August 30,2001
More good news. The Alberta Childrens Hospital called today and let us know that Ken can start taking his FK506 twice a day now at a dose of 2.5mg each. This is good news indeed.

Sept 6,2001
Very strange, Ken rode his bike to the store tonight and when he returned he was ill. He said he didn't quite feel when he left. He had a fever of 103 F. We called the Doctor at the ACH and was advised to take him to the local hospital. There they gave him the Spinal Fluid test procedure. The possibility of anything harming the new kidney had to be ruled out. Kidney rejection is always the first thought. Meningitis or any other flu virus would be detected in the Spinal fluid. I always feel so bad when Ken has to go through these experiences. Fortunately, Ken only had a small fever. Right now, the nature of his illness is not known. He was released from the Castlegar Hospital on Saturday afternoon.

I have always known since the beginning of all this that things can take a sudden turn. It can be very hard on you when it looks like things are going upwards with each day then BAM, it takes a downward turn.

Oct 17,2001
It is approaching the one year anniversary of Ken's transplant. He has done very well. There have been a couple of times when things went downhill but that was to be expected. We have our itinerary made out for December already. Ken has to go to Calgary again for a bone density scan, ECG, eye exam, renal scan and biopsy. Except for the biopsy these tests are done for measurment. That is, to see if there is any decline or improvement from the first tests that were done prior to the transplant.

Nov 28,2001
Things have gone well until last week. Ken caught the flu and is sick now. On Monday he went for his weekly blood work. His creatinine was through the roof. It was 132, up from an average of 95-100. He had a fever of 102F and felt lousy. We contacted his doctor and let hin know what was going on. He ordered another blood test for today.

This morning Kens' creatinine was more normal, about 102 and his urea was 7.5, which is about normal. He does feel better today, better than the rest of us.

Dec 5,2001
Kens doctor called today and informed us that Ken can reduce his FK506 dose for his evening time schedule.

Dec 11, 2001
Today marks the first anniversary of Kens' transplant. We wanted to celebrate by having some friends over but Ken is sick with a viral flu. So we had a quiet time at home and had some snacks and stuff. Ken always wanted a white christmas tree. We gave him his very own white tree this year and all of us helped him decorated it.

Dec 17,2001
What a ride. Lisa and Ken drove to Calgary today and had two unpleasant events. Ken has to be in Calgary on Tuesday for his one year check up which includes a biopsy, eye test, bone density scan and hearing test. The first unpleasantry, they had a 5 1/2 hour wait because of a snow avalanche closure at the Salmo/Creston pass. That is only a one hour drive from here. Because of the altitude it can get very nasty and treacherous. They got through that finally. Next they had a bad experience between Creston and Cranbrook. On the east side of Creston about 30 minutes drive away there is a stretch of straight road. This is a 21/2 to 3 hour drive from Castlegar. Lisa was driving along about 80 kph and suddenly hit some black ice that sent her sliding from one side of the road to the other. She went back and forth from her lane to the opposite lane three times and ending up in the ditch. Luckily there was no traffic coming her way at the time. A couple in a car was coming along towards them and saw them sliding on the road. Then stopped to help. The man helped by digging out some snow. Then two other guys in a truck happened along and pulled them out. I thank them for that. They finally made it to Calgary after a 15 hour drive. It normally takes 8 hours. I was very worried for them when I didn't hear from them around 10PM. Luckily, we have a cell phone. Unfortunately, there are too many places between Castlegar and Calgary where it doesn't have a signal.

Dec 21,2001
Ken and Lisa made a quick trip home. They were here by noon. They left the hospital around 2AM. Colten, Kens' younger brother was having a school Christmas concert on Thursday and Lisa wanted to be here for that. We both missed it last year because we were in Calgary. Anyway, they made it here without incident. Ken gets to go for blood work every two weeks now. He still has his virus flu and is getting over it.

Dec 22,2001
Oh man, not good. Dr.Wade called and told us that Kens' kidney is probably going through rejection right now. The biopsy results show very few nephrons present. HOWEVER, it is possible that the biopsy sample was taken by chance from a scarred area from the previous rejections. It is a chance. After New Years we need to start Ken on 80mg of prednisone for four days, then 60mg for four days, then 40mg for four days then 20mg for four days. He will need to see his local doctor and have some more blood tests.

Jan 4,2002
We had decided not to say anything until Christmas and New Years so that everyone could enjoy the holidays. We couldn't start Ken on his prednisone anyways until he was over his cold.

Jan 16,2002
Ken's blood test looked good except for the high white blood cell count. He has a viral infection in his eye. This was treated with Zovirax ointment. He went to Trail to be with some friends at church.

Jan 17,2002
Whaaaahoooo, new snow. Ken hasn't been outside forever, since November. He is looking forward to go sledding in our back yard. We have a nice little hill to go down.

We go back to Calgary in April for more doctor appointments and meet some friends from Saskatchewan. Look forward to seeing them.

Mar 21,2002
No, we haven't forgotten about the web page. Things have been generally good. Nothing really to bore anyone with.

Ken went for a blood test today. It took a couple of days to find out but his creatinine was through the roof. It was 129. Also, showing signs of dehydration because he is having a hard time with having to drink so much water.

Mar 26,2002
Ken went for another blood test today, it is back to normal.

Apr 10,2002
Ken had a doctor appointment on the 8th in Calgary. All went well. His creatinine was at 94 that day. This was a strange day for us. We drove to Calgary to get there for Monday because we were told that was his appointment day. We went for the blood work and went back upstairs. Then we find out about the little error. We weren't supposed to be there until Thursday. OOPS. No matter, Ken's doctor is very good about coming in on his day off. He asked if we knew what his blood work results were. We said "No". The way he said it we thought we were staying because of high readings. But he surprised us with good news instead. Just a general checkup. All is good.

June 6,2002
No, I haven't forgotten about the web page. Things have been good with Ken. In fact, his doctor has lowered his FK506 from 2.5 mg in the morning and 2mg at night to 2mg in the morning and no change for night. Any reduction is a sign of good news. He has problems sleeping still. And he has missed some school. Mr. Davidoff has been very good in coming to our house and helping Ken with his school work.

At the end of this month Ken is going to a picnic that has been arranged for kidney kids at Heritage Park in Calgary. The next day, July 1st, he goes to Kidney camp near Bragg Creek. This is sponsored by the Easter Seals organization. He went last year too and had a great time.

July 10,2002
Ken had a good time at Heritage Park. He met kids from camp from last year and hung out with them for the day. There were rides and shows and all the other stuff. Sack races, tug-of-war, buffet lunch, huge dessert table, ribbons were handed out. Story books and gifts were given out. The rides were unlimited. There was the paddle wheel boat, the train, ferris wheel and other rides.

At camp, Ken had a good time too. He was given an award for being the best prankster. I'm not sure what the pranks were, but knowing Ken, they were good and sly.

Sept 15, 2002
Ken developed a viral infection on his eye. The medicine he took for was usually a cream, but this time he had an oral medicine. This was a first for him.
He also went for a blood test this morning. His creatinine is high so at night he gets an extra .05 of FK506.

Sept 28, 2002
Ken has the cold, it has been going around here. He has an earache and a bad cough.

Oct 4, 2002
Lisa and Ken are off to Calgary to the Childrens hospital for his annual tests. He is having a bone density scan, renal scan, dental check up, hearing test, eyw exam, ECG and other tests. This is all part of the annual examination to see how Ken is doing.

Oct 8, 2002
Ken and Lisa are back and have some news. Ken is doing fine but his kidney is working harder than it needs to. Because he has only one kidney now it is doing the work of two. There is a drug available that slows the function of the kidney down. It still works as it should, just not overworked. This will extend the life of the kidney. When I learn the name of the drug I will post it here.

Nov 8,2002
Ken started his new medication today. It is called Fosinopril(foe SIN oh pril). It will mean drinking a little more water before he takes it and his blood pressure will need to be monitored. It also is supposed to raise his creatinine by about 30 points.

Nov 30, 2002
So far there has been no change in Kens creatinine. His doctor doubled the dosage of Fosinopril starting today. We were told to expect it to rise considerably. Ken has noticed no side effects. Some of those side effects are dizziness, nausea and high blood pressure

Jan 23,2003
It has been awhile since the last entry. I guess that no news is good news. Ken is doing very well. So far, all his blood tests are coming back good. His creatinine levels are still the same. There is no increase, no side effects.

Feb 2,2003
Ken was pretty sick over the weekend, he had a high fever of about 102^oF. It came and went, then came and went. We called his doctor. No need for alarm, just keep him drinking lots of water and monitor the blood pressure and fever. Whoever thought that having a simple viral infection could be a potential matter of urgency. I could have him in Calgary in 5 hours if needed.

So far he is doing okay. He will probably be going to school in the morning.

Mar 7,2003
Ken's doctor increased the Fosinopril up by 3/4 of a tablet per day and increased the FK506 by .05mg at night.

Mar 9,2003
Here is a little news for you. Over the weekend we learned that Ken's kidney function is currently 58%. Upon recieving the kidney two and a half years ago it was about 44%. I see a huge improvement here. Way to go Ken.

April 22,2003
We went to Calgary over the weekend to see the doc at the hospital for Ken's semi annual check up. I have nothing but good news to share. One medication, Adalat, has been cut in half. The Losec has been reduced to once daily for one week then dropped altogether if things go well. Cellcept has been increased in the evenings by 250mg only because he has grown. Prednisone may be reduced also. We won't know for sure until later this week or next week.

June 29, 2003
Today was the annual kidney foundation family picnic at Heritage Park in Calgary. It was a lot of fun. It was also nice to be able to Calgary for something other than a doctor visit. This trip also had a second motive, the kidney camp. Ken was trying to get on as a trainee for counselor training but wasn't able to get in on time. The organizers also wanted hime to take a leadership course first. This includes a four day camping trip in the wildnerness.

June 30, 2003
Ken was able to go to camp as a camper instead. He is gone from the nagging and torment of his parents(hahaha)for one week. The nurses at camp can have a turn for awhile. Perhaps next year he will go as a counselor trainee.

August 17, 2003
Ken was at Camp Horizon again for a 12 day course called LIT, Leader in training. He was able to go after all for this course. He completed a five day hike and several smaller ones. He climbed Mt. Yamanaska
in the Kananaskis country of Alberta. This is a very beautiful area. I tromped all through there myself once upon a time.

He is in Clagary now awaiting his annual check up, All the usual tests; Renal scan, heart monitoring, etc.

August 15, 2
Lisa went to Calgary to pick up Ken from camp. Another trial to go through! No, it is not Ken's health. Our van has taken upon itself to give us a hard time. Somewhere a water leak has started and coolant is spraying out, sometimes a little, sometimes a little more. On top of this the transmission has suddendly stopped working too. Ken has so many places to go for his doctor appointments. It won't be easy to work around this one. Some of appointments are 1/2 hour apart and from one end of the city to another. We will make it through this challenge somehow.

August 27, 2003
Well here is some good news. We got a new tranny and the coolant leak is from a tired out water pump. Everyone is coming home tomorrow from a long 14 days being away. Ken's doctor appointments are all complete but one. He was supposed to wear a heart monitor for 24 hours but the monitors were sent out for repair and did not arrive in time. He can do this test here at home. The doctor is very pleased with him and his health improvement. His renal scan showed good results. His renal functon has risen from 74% to 84%. That is very good indeed. At the moment I don't have any other specifics but will post them when I do.

Sept 7, 2003
Ken was ill with the flu. He did not feel very good at all.

Oct 17,2003
Ken is ill again with the flue. He is getting better everyday. It is shame he has to miss so much school every time he gets a cold.

Jan 27, 2004
I figured I better put something in here before you readers think I abandnoned you. Ken and I went to see a rock concert in Vancouver over the weekend. I would say it did a great deal of good for Ken. Ken is doing so well these days. On rare occasion he feels a little down. But don't we all at times. Yes, it was a good trip to take, to let the hair down and forget everything for a few hours.

Feb 22, 2004
You just never know when something will happen while for months things are going great. Today Ken had to go to the Hospital In Trail because he was not feeling well from a 24 hour flu bug. During the night he was getting sick and had a fever of 103F. He could not hold in any water. At eight in the morning, medicine time, he could not keep his medicing down either. We gave him some more and he manged to keep this down. At the hospital he was hooked up to an intravenous to give his body the fluids he needed. It was a long day. While Ken slept the time away I was left to wander around and sit or read. When you have hours upon hours to sit and do nothing except listen to what is going on around you, you find it amazing to learn the kinds of things people come to the ER for. Some are serious matters and some are minor. I just thought that was interesting to go through. Anyway, Ken was home by early evening and is doing fine again.

Mar 23, 2004
We just came back from a trip to Calgary to see Ken's doctor. It is the bi-annual check up. Things are going well. Ken's prednosone is being reduced a little at a time. Each week the evening dose is reduced by one (1) mg until down to zero. This is good news indeed.

June 27, 2004
It is that time of year again, the 4th annual Kidney Kids Picnic at Heritage Park in Calgary Alberta. There is a little bit of a story to tell first before the picnic. Last week I spent several hours troubleshooting the van to see why the battery was draining. I had at first thought it was the alternator. I had it tested and eas told it was fine. I went through all the other tests and shotgunned my way through. I thought I had the problem soved and repaired. I had a new battery and on our way to Calgary. On Saturday night, while doing a little shopping at a mall the van decided to not start. Okay, it is either this part or the starter. I tried the cheaper part first, nope that isn't it. Okay, a starter it is. Now there are no worries about getting to Heritage Park in the morning.

There was a fellow,Dan, the one man band who started things off. He was pretty talented. Cody, Ken's younger brother, thought he would join Dan and do a little break dancing, in the rough fashion that it was. People got a show and a chuckle. Dan the one man band also did a "Knock knock" joke. Cody decided to do one too. The "A Channel " news was there and filmed some of the performance. We expected to see it on the 6 O'CLock news but didn't. Ken had a good time. He hung out with his friends for the rest of the day going on rides and taking in the sights. He has one more year to go to this picnic then he will be too old.

July 3, 2004
Ken has gone to camp today. This too, is probably his last year. If he goes again it will be as a counsellor or other work in helping the other children.

Even though he is doing very well he sometimes gets slack on taking his blood pressure. What we call his "Noon Pills" is forgotten as well at times. These are important to take.

April 17, 2005
You probably thought that I have forgotten to keep everyone informed about events. Well, things are going good so there was no need to bore you with inconsequential things. But there is one thing I would like to inform you of.

Ken has gone to Calgary for his follow up visits. We learned recently that one of the reasons that Ken has difficulty sleeping is from some of his medication. It is well known that prednisone interferes with sleep but he is on such a low dose that this shouldn't be the cause. We have learned that there is a study being done on transplant recipients and sleep patterns. I do not who is conducting the study at present but I will keep you informed when I find out more details of this study.

Lisa and Ken's two younger brothers are with him. They were only 30 minutes out of Castlegar going over the Salmo/Creston Pass when they had their first adventure. It was raining heavily in the lower elevations and snowing up in the pass. There was 3 feet of fresh snow plowed off of the road and the road was a little slippery. Visibility wasn't the best when they came across a dead deer on the road. The choice of action had to be swift;quickly veer to the left and chance going over the edge or driving over top of the animal. If they had steered to the left it would have been down a steep hillside. As you guessed they went over top of the deer. It did some minor damage to our van on the under carrage. A metal covering to part of the exhaust system was torn loose. Later on the drive another part of the exhaust system got jostled loose (from the deer) and went bouncing out behind the van almost impacting a vehicle behind them. The drives to Calgary are always unforgettable it seems.

June 25, 2005
For most people driving for a doctor's visit is nothing to write about but for our family there is always an adventure that deserves a few words.

On Saturday we drove to Calgary. Nothing happened on the way there. On Sunday was the fourth annual Kidney picnic hosted by the Alberta Childrens Hospital.This year it was held at the Calgary Zoo. We went early so we could see all the animals and other sights before the picnic started. It was a fun day. Ken spent the day with his friends, we saw some other families we knew, it was a good day. At the end of it all Ken and I were walking back to the van in the parking lot. I noticed that the side door to the van was open a little. At first I thought the younger boys had left it open but when I saw Lisa's purse laying on the seat with all the contents out of it I knew someone had broken into the van. Luckily, there was nothing in the purse taken of value. All that was with us.

On Monday Ken had an appointment with the sleep clinic at the hospital. As I mentioned a couple of months ago there is a link between sleep disorders and the medicines taken.

Ken has a few things he can do try to get a normal nights sleep. Scheduling his bedtime and wake time is the real key. Low stimulation activity a half hour bed was recommended too.

The adventure come on Monday afternoon when we left for home. I checked the fluids on the van before leaving and all was good. No problems until we hit the Salmo Creston pass. If you know about this pass you know it is a long, long, steep climb to the summit. We made it 2km before the summit when all my transmission fluid spewed out. Stranded at 9:30PM on a cold mountain pass was my least favorite way to be in trouble. I caught a ride into Castlegar and to my home. I got my other vehicle and headed for the store to buy tranny fluid and start the 40km drive back to rescue everyone. When everyone was waiting for me to return they had a car park in front of them and just wait. They then circled and came alongside, rolled down their window and asked if all was okay. Strange that they sat there for several minutes before seeing if anything was wrong. There were a few other challanges along the way but to make it short it took until 2:30AM to get everyone home safely.

Adventures happen almost every trip. What would it be like to just drive there and back and have a quiet time of it?

Aug 20,2005
Lessons learned. Today is Ken's eighteenth birthday. He wanted to go the natural arch that is near here. It is a moderate to strenuous hike and we took out time getting there. It took about an hour to get to the arch. He had plenty to drink and we rested at the top and enjoyed the scenery. We were in the shade of the mountain all the way there and back. It was around 5:30 PM when we got back to our cabin and Ken was starting to feel ill. About 8PM his fever was 38 degrees C and he had the chills and nausea. I figured I better get him to the hospital in Trail fast. That would first require getting across the lake in the boat. Then it was a hour and a half drive to Trail. I checked him in at 9:30 PM and explained he needed to have an IV saline solution hooked up now or he would chance loosing his kidney. They told me as soon as the doctor looked at him they hook him up. I pestered to have him seen right away. It wasn't until midnight when they hooked him up to the IV. I wasn't very happy, it wasn't even busy and this hospital is the renal center for the area. I finally got him home around 3:30 AM. So the main lesson here is don't overwork yourself to hard or you could end up in serious trouble. Another lesson to be learned is don't let the hospital staff keep you waiting. When you need to get re hydrated it needs to be now, not later.

Sept.
Ken went to Calgary for his more intense follow up. Another biospy was done. Everything is looking good. Some of his medication has been changed to lower dosages. It is nearing five years since the transplant, Ken has done very well. Even after all this time we, as parents, still think about the day when there is a cure and not a treatment available.

Dec 11, 2005
This is a milestone day. Today is the fifth anniversary of Ken's transplant surgery. He is doing very well. It is our wish that we can say this again five years from now.

Mar 16, 2006
Ken had a follow up visit today and things are going very well. His prednisone has been reduced to 5mg every other day and his fosninopril has been reduced to 10mg daily. No more Iron. His weight is in proportion to his height. Like I say, he is doing very well.

Apr 19, 2006
Ken and the family went to Calgary again for the last visit with his doctors at the Children's hospital. He is now in the care of the Nephrology team from the Foothills Hospital.

It was once again an adventure to get to Calgary. All the way there the van was overheating. They had to pull over every so often to let it cool down. It took about 12 hours of driving but they got there. When the van was looked at in a shop it was found to have had a rotten radiator core.

My family and I hope that if anyone is travelling long distance for renal care that you experience none of the difficulties we did.