Sandy's english weblog

An update.... finally

noreply@blogger.com (sandy) — Wed, 12 Mar 2008 10:07:00 +0000

Well, what can I say???
It is a year ago when I got my new lungs. I didn’t find the time to update my English site and I’m going to tell about last year and then I don’t update this site anymore. You can read my Dutch site.

Let me tell the story.

With Christmas 2006 I wasn’t feeling well and we stayed at home. Also with old and new years day we stayed at home. I felt awful. In January it went something better and could go swimming again. I went to meetings from the asthma foundation and to my art en paint lessons. So I was still busy, but it was hard.

The transplantation
At the 3e February we went for dinner with our friends from Alkmaar. We talked about the transplantation not knowing that is was almost happening. We came home at 23 hours and we went to bed. A few minutes for 4 o “clock the phone rang and with my sleepy head I took it and heard a pulmologist from UMCG. He asked my date of birth and in the mean time arjan was waking up and I said to him that there are lungs for me. He jumped out of bed and filled my suitcase and made all kinds of thing ready.
The ambulance came about 20 minutes later and in the mean time I called my parents and the went on their way from Tilburg to Groningen too.
Arjans parents were on vacation in Australia and we should call until the operation will be finished. When we came at the IC, They had to make me ready for the operation. I called my friend and she was coming immediately. My parents came in at 7.30 hours and my friend came in at 9.30 hrs. She was just in time because the chirurgic came to tell that the lungs were oke and that we could begin. We said goodbye and they brought me to the operating room.
I got an infusion and an epidural for later to get some pain medication. I could see at the clock that it was 11 hrs when I got the anaesthesia..
When I woke up, the nurse told me that the transplantation went oke and that I was breathing all by my self but I had the tube still in. The pulmologist had to make a bronchoscope to check if everything was oke inside the lungs. When that happened, the tube got out.
Arjan, my mum and dad came to see me and they didn’t expect I already was awake. I couldn’t speak because of the tube but we where so glad.
I was amazed because it was only the next day, Monday 5 February and I was already able to go to the normal ward, the lung department.

The operation took 9 hours, so my family had a long time to wait, also in suspense, because nobody can tell how I get out of the operation. But I made it!!

After the transplantation
At 8.30 pm, I was on Intensive Care and my parents and Arjan came to visit me. I was still sleeping, but I was doing oke. The next morning I woke up at 7 am. They told me that the transplantation went well and when the pulmologist came, and did a bronchoscope the tube got out. But before my mum, dad and arjan came to visit me. They didn’t thought I was awake already. They came from 10 till 11. Half past 12 the pulmologist came and I could see also on the monitor inside my new lungs. It was oke inside, so the tube got out and I could breath by myself. It felt so nice, no more breathing troubles. When my family and my friend Lydia came to visit again, they al where so glad and surprised that I was extubated already.

The same evening I was watching “the bold and the beautiful” on the IC! The next morning I went to the lung department, in a one person room.

When the operation was ready, the surgeon went to my family and told them he was missing a tissue but on de X-rays they couldn’t find it. Every Day I had to make a new X-ray and the nurse practitioner saw something weird on the x-ray with one of the drains.
It was the tissue. I had to go to surgery again to remove it. On February 8th I had the surgery and everything went oke. It took 25 minutes. But it was painful after wards.
After that day everything went super fast. 3 and a half weeks later I went home! It was great to be home again ect.

Trouble in Paradise
Then it went wrong with my stomach and intestines. I had so much pain, it was awful. In the emergency room my intestines broke so I had an emergency surgery. I almost lost my life. I got a colostomy. I was on IC for 10 days in sleep. It was nearly fatal.

Thank God I made it. It was hard to get there, where I was before but it happened.
When I got home, I had to train much to be the old one but it was nice when I could.
We had a great time after all those troubles. We went to our friends in Germany, Swartzwald. We bought new bikes, I went playing Golf again. It was amazing!

September 2007
I got trouble again with constipation and I held much liquid in my legs and all over my body. It had to do with the egg protein in my blood. I was undefeated and my intestines where full so I got a lot of laxation pills and drinks. 3 week before Christmas I went to the hospital for 10 days, at first. I got some tests to find out what was wrong with my intestines and stomach. The stomach didn’t work as normal, it won’t give foods to the intestines normally. So food stays much too long inside, sometimes more than two days. The intestines where al little bit infected and I got antibiotics and a duodenum feeding tube to give the stomach some rest.
I got also some pills for the stomach and now it is better. I still have 24 hrs a day tube feeding but maybe I can step over at only night feeding normal eating on the day.

February, 4-5-6 2008
I had my follow up for two days, lung function tests, walking tests and the kidneys test.
I was staying with my mum in the NH hotel across the hospital. When I was at the kidneys test, I got a call that the liver biopsy on Thursday was cancelled. If it was oke to do that Wednesday. So we slept another night in the hotel.
The liver biopsy is necessary to check if it is working correctly. Maybe that’s the problem but they do not think that, but to be sure.

I was very scared of the biopsy so I asked for anaesthesia, but it wasn’t possible…The results of the tests where oke and I had a good talk with my nurse practitioner. She’s going to have a meeting with the transplantation team and asks about my tube feeding, if I can go over to only night feeding. I hear that in a few days.

Words to finish this blog
When I look back at the past year, with happiness first, sadness then and joy later, I will do another transplantation when it is necessary. I now have a nice life without breathing problems, no more inhalations, bacteria’s in my lungs ect. ect. I still have a lot off pills but that’s 5 minutes of my time. I must say, I live again. In the past I only had to survive. Day in day out. Now I can enjoy my life again. All of this is possible because my donor had chosen to register her/him to be a donor.

I thank my life of my donor.

End of this web log
I close this web log now, I write only my Dutch web log. So If you want to keep follow my life you have to follow Dutch lessons. (haha) Surf to:
sandy's weblog or sandy's golfsite

e-flow and thriompf 5

noreply@blogger.com (sandy) — Thu, 01 Jun 2006 14:46:00 +0000

Last week I had some appointments. First I had a meeting for our internetcafé. Our startplan was oke and now we can open the internetcafé finally. Also we got the subsidy we asked to the neighbourboard. Now we can start!
An old girlfriend came to visit me and she had just moved on her own again. She told me she had found a job for a one year contract. She was at home for two years and it became difficult to find a new job, but she has found it now.
On wednesday the new colistine, my inhalation antobiotics medicines, came. A new methode. One farmacy in the netherlands will deliver those medicines in the whole country. Friday I also got my new aerosol apparatus. The e-flow. It is very quiet and super fast...I'm glad with it.

Today I had to swim and it went very good. At 2 o'clock they came to messure my scootmobile. He showed me a showmodel and it was the triompf 5. A red one. If there is one in the depot, I get him next week but when he has to order a new one, I get it over three weeks. Hope we have some nice weather soon. It looks like fall...

Nice holiday

noreply@blogger.com (sandy) — Sun, 21 May 2006 17:16:00 +0000

We are home again! We did so many that arjan became sick…what a pity!

Let’s start at the beginning. Monday morning we had to go to the town hall, to get my new passport and to bring some papers to get a scoot mobile. I had to make a copy of my new passport also for the scoot mobile. The papers were oke and it took only a few minutes. Then we went to the post office. I had to send back the sewing machine I ordered on the internet. It was not working good and the man from the sewing store said he couldn’t fix it. So I found out I had still guaranty. So I had to send back the machine and I get back the Porto costs. I get a new one or they make it…Well I have an new second hand machine so I rather would get my money back….Then We had to go to the vet, to get Macy’s diet food.

After lunch I slept a while on the sofa until the family was coming. Around 2 o’clock they were over here. We drove to IJhorst were hour little house was. Macy thought we had to drive for two hours, she was surprised we were there in 40 minutes. On the window at the house, there was a sticker, “no pats aloud!” oeps…arjans’ mum didn’t booked for the cat..
The oxygen was there, so I could stay!

The park was very quiet. It was a nice house. Three bedrooms, a big bathroom wit bath, a living room and a kitchen with dishwasher! In the barn there were the chairs for the garden. That day we discovered the park. We went cross country and got stuck in the woods with my wheelchair. We came at a camping ground but we think there will come new houses to rent. Tuesday we went to the Zoo in Emmen. It was very nice weather. Only a bit windy. Wednesday we went to the Lokkerij. That’s a place where storks have their nests and breed out their eggs. Thursday we went to Meppel to a fair. I bought some shoes. Friday we went home. We brought home Macy. Then we went to luttelgeest to the orchideenhoeve.
When we came home arjan went to bed. He was sick.
Saturday we went to the supermarket and watched tv. Most of the weekend we did nothing.

nice days and beautyfull weather, finally!

noreply@blogger.com (sandy) — Sun, 14 May 2006 06:32:00 +0000

Thursday evening, after diner we drove to Tilburg. We left at 7 pm. The trip went good. Macy stayed on my lap very quietly. There wasn’t so many traffic as we thought it would. We arrived at 9 pm. Friday morning, I was awake very early. At 5 am. I couldn’t lay down anymore I had to do my aerosol therapy because I had breathing spasm. I slept on the sofa until my mum or dad came downstairs.
In the afternoon we went to Chaam, to the family Versteeg. We sat at their little home at a camping ground. It was very nice and cosy. We went for a walk over the camping. I couldn’t walk so I used the wheelchair. I didn’t bring it for nothing because I knew I had to use it.
When we came home at my parents’, we had a barbeque. Mum made her sate, the Indonesian way…jammy! We sat in the garden the whole evening, for the first time this year. Finally.

Saturday, we went to the mall in the Reeshof. I needed some shoes and my mum also. But I couldn’t find the right ones. Then we went to Breda to my aunt. Her backyard was ready. She had a nice terras with wooden chairs and an arbour. It was very beautiful. Mum, aunt joyce and I went to the market to get some fruit and vegetables. I sat in my wheelchair. The men’ watched formula 1.
After diner at home, Arjan brought us to the theatre. Mum and I went to see Jesus Christ superstar, rock opera. I had some tickets at the second balcony but I couldn’t get up the stairs so I got two tickets in the auditorium. Problem solved. It was very good. The lyrics were in dutch but we knew the music. Very good singers. At 10.30 pm it ended and arjan send me a sms that he was waiting at front of the theatre. What a service…

Sunday we went to Baarle Nassau. I bought shoes and slippers! Nice!
Mum didn’t find shoes and dad got a jeans. We ate Belgian baked potatoes. At home I slept on the sofa and the others watched formula 1. While ajax-psv had their soccer final, we had diner and after the match we went to Heerenveen again. We were home at 10 pm.

Monday my house keeper came again and meanwhile I walked to the dentist two blocks from here, I could walk again… When I came back, in 20 minutes, my physical therapist came, and I worked on t he home trainer. It went oke also.
Tuesday I went to the pharmacy and I bought some little things. After diner we went to my cousin. It was his birthday.

Wednesday I went to the hospital, UMC-Groningen for my cf check up. I thought I needed an antibiotics because of that breathing spasm. I have for a couple off weeks. But there is no sign of an infection in my lungs. Well, it’s true, It doesn’t feel like it, but why do I have breating spasm? Well, it can be the blood sugars. They are higher lately. I have to go to the diabetes nurse to learn about an insulin pump. Maybe that’s it. Now I have to take 6 times a day insulin, more then before…iehh

Thursday I supposed to go to my swimming but I had an conference for the astma foundation in Haren. UMC-Groningen revalidation. Beatrixoord. We spoke about fellow-sufferer contacts. And how we can combine it with therapy. It was a very interesting afternoon.

Friday I had to wait for my oxygen and it came at 11.30 am, so it was early. At 4 pm I went to the swim group and I trained in the water with a physical therapist. It was oke. I was home at 6 pm. Arjan came home shortly after me. We made diner and watched tv.

Saturday we went to the supermarket and to the market in the village. Then we sat in our garden and we watched the qualification of the formula 1. At 6 pm we made diner and then we went to thialf to see the taptoe with a couple of marching bands. Very nice! Marching band van Renssen exists 50 years now and a lot of my friends from my yought were in de band. I went to see them al the time but I couldn't get in it because of my cf. We were home at 12 am. It was raining al little bit.

Today we have to clean the house and do the laundry. Tomorrow we go on a little trip until Friday. Arjans’ parents, his sister and her boyfriend are coming to. It is a house for 6 persons. Macy is also going. Hope she will like it…

Good week!

My little pony's

noreply@blogger.com (sandy) — Wed, 03 May 2006 19:24:00 +0000

Last week I had trouble with breathing. More than normally. I don’t know why. I don’t feel if I have a pneumonia. I was tired after the swim Thursday and Friday. When I came home I couldn’t do anything. Arjan went to the grocery store by himself. Saturday at queens day, I didn’t do much. Sunday we baked an bread in the machine. It smells so good when you wake up!!
Monday my housekeeper came again and I had to train on the home trainer with my physical therapist. It went oke.
Tuesday I went to the sewing machine store to buy a second handed machine. My machine is broken so I wanted an other machine. But a new one is very expensive. So I bought a second-hand machine. I parked my car to far so I could get it later this week. I had to go to the internetcafe meeting in the afternoon. So when I came home at 4 I needed an little sleep on the cough.
Today I went to the post office to change dollars into euros. To buy the sewing machine. I also had to go to the town hall, to order a new passport. Now a day it takes a week to get a new one…so next Wednesday I need to get it. I also got some papers to try to get a scoot mobile. Little walks are difficult for me now too… Then I got my sewing machine.

I made a “crochet” little pony. One for me and one for my niece. I have now stiff fingers!!
But It is nice to do when you can’t do much.

Arjan is to the soccer game form Heerenveen against twente to get to the UEFA cup. I hope they will win….I think so they do…
I’m going to watch tv, drink some tea and do my aerosol therapy…

the flowers outside

noreply@blogger.com (sandy) — Wed, 26 Apr 2006 15:30:00 +0000

Today the weather is al little bit better, but still less sunshine I prefer to sit in the garden. I made some pictures of the flowers we bought last Easter. The pots at the front door are cosy with the chairs and table. Even the flowers at the fence and the clematis at the wall in the garden are looking good.

Macy wanted to see what’s happening in the garden, so she hangs herself at the window of the backdoor. My azalea needs a water bad, so I put it in the kitchen sink. It has so many flowers, wow!.

I figured out why I’m so tired al the time, why I’m so thirsty and why I have to go to the bathroom so often…My blood sugars are to high. Monday night I made a curve when I had my enteral feeding. It was to high. Monday I called my doctor and I have to take 4 shots of actrapide insuline before I use the enteral feeding at night. Also my schedule of novorapid changed.
Bloodsugars-->shots novorapide
4-6 -->2
6-8 -->4
8-11 -->6
11-14 -->8
>14 -->10
>20 -->12

Last night I used 4 shots of actrapide but the sugars were 15 between 3 and 6 hours. My body must used to it, and takes some time…Tonight again…

Tonight Our Soccer club Heerenveen has to play the final against Roda. When they win the play the final to get to the UEFA CUP. We hope they get there!

Tomorrow I go to the golf course to plan our new lessons and then at 10 o’clock I have to be in de swimming pool in Wolvega. Friday my housekeeper is coming and my oxygen supplier comes to bring me new oxygen. Then at 16 o”clock I go to swim in heerenveen with the asthma foundation. I’m looking forward to it.

Long time, no see

noreply@blogger.com (sandy) — Thu, 20 Apr 2006 10:15:00 +0000

I didn't write here for so long, but I didn't come to it. On my dutch site, I do not write everyday anymore otherwise it is always the same. But this is too long...November...man...that's a half year ago..Shame..

We had very good time with christmas, and new year. We didn't do very much because I didn't want to get sick or have the flu, because that can be fatal. The weather is not good. It's becomming now al little spring. It is just cold, no sunshine. Even with easter we had to wear a winterjacket to stay outsite. We made our flowerpots nice, so it looks like spring. Today it's raining al littlebit. The forecast says it's getting sunny in the weekend. I like it...

Last month I went to the hospital for my checkup at the transplantationdoctor. I'm now 6 on the waitinglist. In groningen they did now 8 transplantations and in utrecht 9. So if they get trough with transplantations, I can be this year one of them. Over two weeks we go to my parents. I'm going with my mum to the theater in tilburg. We are goinig to the musical: jezus christ superstar. Then from 15-19 mei we go the landal green parck with arjans parents and sister. So that's our vacation this year. We hope we have a nice, warm summer, so we can sit in the garden al lot. This week i'm not so good. I'm tiered and i have breading spasm the last couple off days. So i didn't go to my swimming lesson. I'm having a day off. quiet at home.

busy busy busy

noreply@blogger.com (sandy) — Mon, 28 Nov 2005 16:06:00 +0000

We had a very busy but nice weekend. Saturday arjan had to work until 12 o’clock. Then we had to get some groceries and we went to my nice her birthday. I bought her al sort of lavalamp. She wanted already such kind of lamp so my thoughts were right. About 18 hours we went home to get something to eat. We had to go to the theatre. Well it was oke but we aren’t going to a next episode of these two guys. We have seen better things.

Sunday 13 november 2005 we went to dordrecht to the partners day of elderly cystic fibrosis ( http://www.oef.nl/) It was for partners so I went to my niece in Rotterdam. We were almost there but then we came in a traffic jam. There was a car on fire so we had to wait for almost an hour. I had some time with my niece and her two sons. We made a walk at he Heyplaat and we cooked hache. We called a friend who was joining us for dinner. He brought me to dordrecht where arjan was. So arjan didn’t have to go back to get me. We were home at 0.00 hours.
Monday I was sleeping late and at 11 o’clock my physical therapist came to me to get me on the hometrainer. It was hard but it went oke…Then I took a nap on the couch and watched tv. At 16 hours I took a bath and I made some dinner. Then I had to go to my painting lesson.
Tuesday my cleaning lady came and I had to go to the physical therapist for my breath technique and after that I had to go to the golf course for the last lesson of this season. It went very well and I made some terrific swings.

Wednesday It felt that I had a cold or a flu on the way… But I still went to my modelling class. I finished my sumo wrestler.

Thursday I didn’t go to the swimming pool. I didn’t feel well, so I stayed home. I didn’t like to get the flu or something else. I had a nice weekend. I went on a birthday party of my niece. I bought her a desk set and a lamp for her room. When I was there Sinterklaas came through the street. We got some pepernoten from one of the black piets. It was nice!!

Monday I had painting lessons again. My painting with the fabrics is ready now. We had to stick a fabric or clothes into the latex painting and then we had to stick it on a board or painting canvas. Now I have to paint only the shirt and that’s what I ‘m going to do tonight.

Wednesday I had a interview for a voluntary job in an internet café. I had a good interview. I’m the newest pr woman ! So I’m starting to write it this week. In the afternoon I went to modelling class. We had to finish our statue of the model lady from last week. Well she was sick so we had to do it our self. My statue is ready now. So next week it can get in the oven. I hope my sumo wrestler is already backed.

Last weekend we went to santpoort to arjans parents. I went to the wholesale trade with arjans dad. Arjan had to install some things on the pc and a dvd recorder. At 16 o’clock we went to mine and tim in alkmaar to have dinner at there place. It was very nice and we went home at 0.00 hours. So we were at home at 1.30 hrs.
Yesterday I was a little bit tired and arjan had to go to soccer Heerenveen against rbc. 2-0 so that’s good.

update

noreply@blogger.com (sandy) — Fri, 11 Nov 2005 12:27:00 +0000

I was very busy with all kinds of things that I didn't translate my dutch site over here anymore. I was busy for the astma foundation, with my painting lessons and craft lessons. I went last week to my cystic fibrosis centre and had a check up. My lungfunction had declined and my doctor thought I had an infection in my lungs. That wasn't it. But we don't know it yet. Maybe I have astma, but that's more a little joke of mine....My bloodsugars where higher than normal so they took some blood and now I have to wait for the results.
Yesterday I went swimming but I was so tired and had trouble with breathing, I was peeping a lot. Hope it wil be over soon.

Last week I ordered my medicines and yesterday I got it. The antibiotics for the aerosol therapy was in a new packing. So I don't have so much to through away. Normaly it was packed per piece and now it is in a box of 60.

This morning I put al the medicines in the closets so I can go for it for a while.

Computer fixed

noreply@blogger.com (sandy) — Wed, 19 Oct 2005 10:16:00 +0000

Last weekend we went to Tilburg to get my pc. My dad took it with him to fix it and he made it. Monday I had to install the pc and it took a whole day. In the evening I had to go to my paintinglesson. I'm busy with two paintings. Legs in boots and an abstract landscape. Hope I find some time to get it finisched. Yesterday I had to go to my physical therapist and after that I had to get my shot to protect me against the flu at my doctors practice. Then I went to the golfcource. I had to undo our appointment because An can't play then. But our pro wasn't there. Now I have to go another time again.
Yesterday I also called my friend Minne. We made an appointment in november. Arjan and I are having dinner at their place. So we called a very long time...very nice.
Today I was looking for some pictures for my craft lesson. I need a new theme. My friend Minne liked a hedge-hog so that's my new project. I also found a picture of a sumowrestler. That's my next!

I have a new addiction! Sudoku. It's in the paper every day so I can eat my heart out. Try this!

computer crash

noreply@blogger.com (sandy) — Mon, 10 Oct 2005 11:03:00 +0000

Dolf dare-davil

Tuesday we had to go to the theatre The Harmonie in Leeuwarden. That’s the village where arjan is working. So he had to get home quick, have dinner and go to Leeuwarden again. We saw Dolf jansen. His program was calling Dolf dare-devil. It was good, I laughed a lot but he isn’t a great singer. His band was oke! There wasn’t a break in the show so after the show I had to go to the toilets very quick. We were at home at 23 hrs. When we arrived we saw our tv was still on, Macy had a nice evening! Haha.

Thursday I had to go to the hospital in Groningen for a check-up. I had a appointment with the lung transplantation doctor. It was very busy over there so I had to go to the laboratory first. I had to give some blood and mucus. Then they can check what kind of bacilli in my lungs live. When I need medication they know what they must prescribe me. Everything went oke with me so it didn’t take long. I asked in what position I am on the waiting list, but that depends from different factors; lung function, not transpareble patients, the hospital, and the High urgent patients. So it depends of the day . When I came home I put on the computer but he didn’t work. He crashed. I could save all my documents and hope my dad can fix it. Saturday my parents came, because my dad tries to fix my pc. Arjans’ parents came over too. We went to the new fire department. It was open house. Arjans dad is a fire-fighter so he liked it very much. My dad was busy with my computer but he couldn’t fix it. So he had to take it with him to his office. I’m now working on arjans’ computer. My wish is, to buy a laptop but I need to save some money first.

Contactgroupsday

noreply@blogger.com (sandy) — Mon, 03 Oct 2005 12:33:00 +0000

Saturday I went to papendal in arnhem, a sport and congresfacility. There is also the commitee of the olympic games. We were asked to join a forumdiscusion about contactgroups for the asthma foundation. I’m the secretary of our division. So I could carpool and I was waiting at the Mc donald at 8.15 hrs. It was a long day but nice. We were entertained by a theaterduo what was very good. At the first session I had to tell about our contactnewsletter. The H-eigenwijzer. After the break we had to play a game about contactgroups. Very nice. Then we had lunch and a break until half past two.
Then the second forumdiscusion went on. This time it went different because there were some nurses in the public. The discusion wasn’t about contactgroups anymore, it took an other direction. But it was oke. After the forum, we had to play the game again, but I went walking for a while. At 16.30 hrs the theaterduo had a performance…very funny. They also chose 8 people who won a flight with the asthma foundation hot air balloon. I didn’t. ohhhh
When we went home we got a backpack with all kinds of things in it , what you need to go to the sports. Very handy! At 19.00 hrs we were home again.

no gutters but a psc

noreply@blogger.com (sandy) — Wed, 28 Sep 2005 07:27:00 +0000

Saturday we had to get of our gutters with al our neighbours. Our gutters needed to be changed. So we dicided to do it with the four houses in the block. Friday we stood outsite and planned it at 9 o’clock in the morning. Arjan wasn’t home because he had a survival with his work. He came home at 0.00 hrs so he was tiered. He went showering and straight to bed. I woke up at 7.15 hrs and got me ready for the job, although I didn’t had to do anything, haha.
I made coffee… When the men were working my mum and dad came over. I went shopping with them. When we came back, Arjan and neighbour de haan already went to the dumping-ground. So this job was done. Thursday and Friday we get some new gutters. A firm is going to place them.
Sunday the megamarkt was open so we went there to buy a printer. Mine was broken and I wanted a HP with cartridges nr 27 and 28. Well I found the HP psc 1215 all in one, an nice thing. Arjan bought an dvd-recorder because our video doesn’t work so well anymore.

A famous cousin
I heard that there was an article written in the leewarder courant about my cousin. He is playing football in the team for Orange under 17 years. He is an youth players at sc.heerenveen. We saw him on that website: He is now in Peru to play the world championship!

Fire at Barbies

noreply@blogger.com (sandy) — Fri, 23 Sep 2005 15:09:00 +0000

Yesterday my mum told me that there was a fire in the house of my cousin barbie. She has a husband, three kids and two dogs. She was baking 'frikandellen' (typical dutch meat snack) Then there was a flame and when she didn't get out the fire she graped het youngest son and ran out of the house and she called the fire department. Now she is staying at her parents in law untill they cleaned up the house. The kitchen is gone but the rest isn't so bad as looked like yesterday. In two or three weeks she can go in her house again.
She's lucky that her family didn't get injured.

Busy, busy, busy

noreply@blogger.com (sandy) — Thu, 22 Sep 2005 07:17:00 +0000

I got some comments that I didn’t wrote for a while, well, there was nothing to tell…and to write junk isn’t the way….and I was very busy.
Sunday we cleaned up our barn because it was a mess. We put in the gardenfurniture ect. Arjan had build a closet to get all the stuff in so it is very neat now. We also cleaned up the loft. Even there was it a mess. But now it is very neat too. I did to much so I went to bed early.
Monday I had to train on the hometrainer, had a meeting and in the evening I had to go to painting lesson. The new theme is summer. I found a picture of two horsrideboots, so that’s my theme. I had al long paintingcanvas and I paint first with acrylpaint and then I finisch it with oilpaint.
Tuesday my cleaninglady came again and I had to go to my physical therapist at 13 hrs. When I came home, I had to do some work for the asthma foundation because we have a meeting thirsday.
Wednesday I had to go to my modelling class. I started with a mother with child, next time I must work on it again. When I came home I was so tired. So this morning I’m not going to swim. At 14 hrs I have to go to the meeting and it is very important to be there.

Tomorrow I’m going to rest, rest, rest…Wow.

The family Stastok

noreply@blogger.com (sandy) — Fri, 16 Sep 2005 11:21:00 +0000

I found back The family Stastok. I also found my dutch site and more with my name and also this story I made with Fabio and Rene . I did a cource in 1999 electronic publicity at the university of groningen. We had to scann the text with ocr and must ad some pictures. We must publice it on the internet. It stil is there! Nice ….

Wednesday I got my prapaid start package from UPC. I orderd it and I became one of the 40.000 people who got it.! I stopped my membership at Vodafone. So Now I only have to buy a prepaid card with 10€. At vodafone I pay that in one month. So I think it’s for me cheaper. We will see.

Yesterday I had a busy day. I had to go to wolvega to swim, I had to drive further because the outlane to wolvega was closed. I didn’t see a directionboard so I had to go much further to the next outlane to go back. I only could swim for 15 minutes…When I came home, I had lunch and the time was flying so quick I had to go to the golfcource. We played hole 1 and the weather stayed good. When I went hom, It begans to rain al little. Today my oxigensupplier came very early so I can go to the store now to get a prepaid card from UPC.

Enteral feeding time

noreply@blogger.com (sandy) — Mon, 12 Sep 2005 17:12:00 +0000

Last night I had to use my enteral feeding therapy again. I took some vacation of it, but now the R is in the month again and I have to go swimming, to painting lesson, to modelling class, go to the asthma foundation meetings, so I’m busy for 100% again. I need extra energy for all of that.! I could get in the naso-gastric feeding tube very easy. I also knew how to fill the enteral feeding systhem! Haha…
When I connected the tube to the systhem, I got a FLOW ERROR.. What’s that, what’s wrong??? I tried to get some air through the tube with an injection but it didn’t work. I already had some feedingfluid over my hands. So I had to go to the bathroom. There I saw that the locker from the feedingsysthem was blocked. A manufacturing error…. Arjan had to get a new systhem from the kitchen. It never happened in mij hole enteral feeding carrier!

I woke up very often, because I had to go to the bathroom. I get extra fluid so I need to go very often. At 6.30 hrs. The enteral feeding was empty and I turned off the pump and slept again untill 7.14 hrs. I woke up becauce of the worning men. They had to finisch the rest of the sidewalk. They made it very bad so I called to complain. The didn’t come for moer than a week. So maybe through my call??? But now they made much more then last time in the same hours….tssss.

Today I got a postcard from two cf friends. I met them at the cf contactday for olderly cf patients and I talk to them via msn. They went shopping in antwerpen and I told them to send me a card for fun, but they did … so very nice of them…thanks!

The normal life begins again

noreply@blogger.com (sandy) — Mon, 05 Sep 2005 17:38:00 +0000

Saturday we went to the village. There was a streetfestifal and I wanted to shop. But I didn’t find some clothes. The weather was nice and it was busy in town. There were much “wrinklesaurusses” with scooters and 4 wheel walkers. It looked like old people day! Before we went home we bought an icecream. At home Arjan made thaisian chicken, it was very tasty! After dinner we watched tv and had a quiet time.
This aprin was a birthday present from Marinka! Because Arjan is cooking a lot! A superman!
Sunday I spend some time behind the computer and sat in the garden in the sun. During the Formule 1 I slept on the bench. When I woke up I had to get ready to go to the driewegsluis restaurant at the water. We ordered for starter baked ham for arjan and for me a melon with ham. For dinner I orderd a chicken spies with piri piri sauce and arjan had a steak with baked mushrooms. As dessert we had a mount blanc, icecoupe with warm caramel sauce…So nice..! Most of the time I don’t order a dessert because I get sick or out of breath. I think it’s coming because ice get quick in your systhem, so the sugarlevel gets high quickly. And sure with caramelsauce! But ist was very tasty.
This morning I woke up early. At nine my first laundry was hanging in the garden and I did my aerosoltherapie and had my breakfast. The rest of the laundry was ready at 11, and my physical therapist came at 11 to train with me on the hometrainer. When I finished my training I did my typework for the asthma foundation. This week our sportgroups are starting again. So Thursday I’m going to wolvega again to my half an hour swim! Jippi!

An new blog, finally

noreply@blogger.com (sandy) — Fri, 02 Sep 2005 13:23:00 +0000

So there I am again. I did a lot last week but I didn’t have so much sense to write. It was very nice weather so I was outsite in stead of behind the computer.
Last Friday we went out for a day. We went first to Assen. To my girlfriend Lydia. She moved from Winschoten. They were very busy to rebuild the new house. It was a store in the past and the warehouse is going to be het art wokplace. The kids have a very big sleepingroom for them selves now and they have more space now. Whem everything is ready we will go again. After lunch we went to Elim to visit Monique. But she wasn’t at home. She was in hospital with me when we had the sreening for lungtransplantation. Hope she’s home next time. Then we went to my aunt in Hardenberg. She was already wainting for us with a very good cake. Lovely!
We laughed and slandered about the family, if you can call it slender!!! My aunt raises chiwahwah’s, very small dogs. Thre of them had already puppies. They have now 8 dogs them selves and theu are keeping two from these new nests. So they become 10 dogs, all different collours. They are all females. This time there were many male puppies and all of them have already a new boss. At 8 weeks the can leave the nest to there new bosses. On the picture you see nora. One I would choose, she lookes like Mitsy my dog, who died when I was 16. We had a noce day. My uncle tried a jump on the trampoline ! And my cousin can jump very well! After dinner we went home at 20 hrs.

Saturday we went to the supermarket, to get everything for Arjans’ birthdayparty. He also was prepairing the chairs and tables on the terras. Sunday at 11, my parents came already. Mum made sate for the barbeque. Later arjans’ parents came with his sister. He got a terrascleaner from karcher. Then mij cousin, her husband and kids came and later my girlfriend Lydia and Jan and there kids. It was crowded but very good in our garden! The weather was fine too, but a little to cold for a swim for the kids. Sunday evening my mum and dad went home at last. Munday Petra came and got us both a present. She forgot my birthday, nice of her!
At 11, my physical therapist came to train on the hometrainer. It went very well. I wasn’t very tiered. So that’s good.
Tuesday on arjans’ real birthday, we went boating. Arjan hired a tourboat at the kuilart It was very nice warm weather, but when I woke up, it was foggy. And I had a bad start. That was over very soon. We made a nice trip. Fisrt to Workum then to Hindelopen and though lake the fluessen. We came at the kuilart at 4.30 hrs again. Then we had some dinner at restaurant the galamadammen at the terras. Very nice view.
Wednesday we sat in our garden and arjan took a swim in our pool but the water was very cold for me. I did the landry and hang it outside…evertything is in the closet now…
Thirsday arjan took out the pool. He had to loose the water in the well with the waterhose. Then he cleaned the terras with the terras cleaner. First he cleaned the tiles at the front garden. And now they are making the sidewalk. They began further in our streat but the day before yesterday they stopped at our blok. Today in the morning my oxigensupplier came and it was the same guy who brought last time the new tank. Now we go to the supermarket to get some food for the whole week. Monday Arjan has to go to work again, so the vacation is over.

Arjans second week vacation

noreply@blogger.com (sandy) — Thu, 25 Aug 2005 20:31:00 +0000

Sunday morning I began as usely with my aerosoltherapy and having breakfast. We agreed to leave for Santpoort about half past 10. Arjan was just in bed at 9.45 hrs. So I decided to wake him up. Arjan loves to sleep long. I can’t. My lungs hunger for treathment. The so called “lung toilet”. During the aerosoltherapy I watch tv and Macy sits on my lap. That’s our start of the day. When I called Arjan, he was ready for going to his parents very quick. We arrived about 1 o’clock in santpoort. They said we were late, but Arjan told them we will arrive at noon. Don’t tell a time….they are waiting…haha.
Arjans’ aunt Bep and uncle Henk were over. It was nice to see them again. We talked about photography and how pictures are made. Most of the youth doesn’t know that anymore, they have a digicam. For my study drawing-art, I had to go in the photolab to make photos myself. That was my favorite lesson. When the pictures were finished we had to make an exposition or a photoreport. All those things disappeare. What a pitty.

After the formule 1 race, Marischa, Marinus and Willem came over and we had a barbeque. There was to many food left. We had to trow some away because it came out of the freezer. You can’t freeze in meat twice.
Arjan did some things on the computer and we went home at 22.00 hours.

Monday I had to call Hoekloos, my oxigensupplier again. The ambuloxtank was now really empty. The lady on the phone asked me to lift up the tank and I could. She said that the tank was empty because you can’t lift a tank that weights 60 kilo’s. There’s a new tank on his way. At noon they came and got me a new tank. That’s better. It’s full!

Tuesday our cleaninglady, Afke came. Arjan was repairing the floor in the bathroom. There were some tiles broken in the showercabine. So he made threecolour mozaik mats in it. It isn’t ready jet but next week he wants to finish it. Wednesday I had to train on the hometrainer. We heard that Pietie, my official train physical therapist had her shoulder out of the joint. Maybe she has to go for an operation. So she is in pain I think…

This morning I slept until nine. When I woke up I began with my aerosoltherapy and in the mean time I watched “as the world turns”. This time Macy stayed in het bed…
At noon I put on my clothes and we went to the supermarket. To get some food for today and tomorrow. Saturday we will go again to get the grooceries for arjans birthdayparty on Sunday. Arjan turns 35 next Tuesday so we're having a barbeque for friends and family.
First we went to the vet. To buy Macy’s food. She needs a diet because she had stones in her bladder. This Urinary diet is to dissapeare this stones and to prevent. She is now much better since this food.

At half past one I had to go to the golfcourse. We began with practise putting. In the beginning it went badly but later on it became better. After the puts we went to the driving range to practise our swing with club number 7. It went good. Sometimes I made a mishit, but tyger woods will have some too I guesh…After our lesson we had something to drink at the terras at the club. It was nice to sit there. We scaduled our next lessons. The first will be at september the 15th.
Tomorrow we go to Lydia in Assen. Her son Stefan had his birthday but that day I had stomach-ache. So we go there tomorrow. And see what the new house looks like. Then we go to my aunt in Hardenberg. She breeds chiwahwah doggies. So little are they. They have new nests now….I would like to have one..but that’s not sensible right now, with my transplantation later. We also visit a girl, whom I met in the hospital. She’s on the waiting list for a lungtransplantation too. We don’t know if she’s at home. We will surprise her.

What a week!

noreply@blogger.com (sandy) — Sat, 20 Aug 2005 14:32:00 +0000

We are home again! We had a nice little week in Tilburg. We arrived on Friday about 9.30 hrs. The trip went well without trafficjam. Even Macy was quiet and sat all the trip on my lap. She was adorable.
Saturday we went to the efteling. We could sleep a bit longer than the others because they had to come from Santpoort. Arjans’ parents, Nico and Tineke, Arjans’ sister, Marischa and het boyfriend Marinus and his colleage Willem came to get us at 10 o’clock. We drove in two cars and we arrived at 11 hrs in the park. We had to go to the ER post first, to bring my second oxigentank. So we didn’t had to carry two tanks with us all day long. We brought a backpack to carry the tank. This bag has wheels so you can use it also as a trolly. We needed that because Arjan broke one of the bands when he would take the bag off. He doesn’t know his strenght sometimes….
At first we went in the Carnaval festival. Very nice, now we have the song in our minds all day long!! After that we went to birdrock. Mama, Tineke and me waited. Arjan liked it, see photo!!
After we had something to eat, we went in the pagode, a very high attraction, with a very nice view. By the way, we had very nice weather! So we could see very far away. Marinus and Willem stayed down to earth, a little bit off high-ache!! Haha.
After that Mama, Arjan and I went in the pirate ship. The rest waited for us. Marischa wanted in the python and I should go with her but my mum didn’t allow it. She was scared that I get a pneumothorax. I just forgot that the python had three times to get all around and two loopings..little scary, And there was a waitingtime from more than an hour!!! No thanks.
Then there was de Pegasus, a wooden attraction for daredevils…We all went in except Tineke. We had to wait al little time but then we had a nice ride!!Less than three minutes, Back pain, because there are no soft seats…But it was great! Very good for the bones, haha!

After we had some food and drinks we went in the piranha. Wild water attraction…We had nice weather so…We went with two boats. Marischa, Tineke, Marinus and Willem in the first and Nico, Mama,Arjan and I in the second boat. Tineke and Marisch got the waterfall and were wet, Tineke didn’t like it! We weren’t wet at all. Then we went in the bobride. Also very quick but nice!
In between the weather changed and during our dinner, it began to rain a little bit. Then we decided to do all the inside attractions. First fata morgana, and pandadream. Then we had to go to the ER post to get my second oxigentank. Althought my first tank wasn’t empty, because in the bag it stayed cool so that the tank was empty less quicker. We decided to place the other tank also in the bag, because we had to use it as a trolly and we didn’t had to go back when we leave the park to get the empty tank.
We went to the dream flight. We had to wait there for more than an hour because of a deffect. Mama and I sat down at al wall and when the others were at the door we went in the line again.
After the ride we went to the restaurant to have some drinks and buy some things. Everybody got a little tiered…we had a long day…At last we went with a train wit lights. It was already dark. It was an nice view. We came home in Tilburg at 22.30 hrs. They had something to drink and Marischa tried to fitt my jeans. She lost more then 40 kilo’s of weight and the jeans fits her so she got it.

Sunday we didn’t do much because I was very tiered. We got my peter and meter over. Gerard and Patty from Arnhem. Here a photo, together with Patty and my mum.

Monday we visited the Hornbach. I bought a painting canvas, an ablong format. And a pillbox. Well it’s for screws but I don’t eat them, haha…We went also to the center and we lunched at V&D. I bought a watchband.

Tuesday we visited Scheveningen. Even my dad went with us… We visited sealife at the pier. We saw very nice fish and we walked through an alley where the fish swim above us. They had a ford ka with all fish in it. A pitty was that I was still tiered. So I could’t walk very far. We sat down often. At 4 o’clock we went on our way to Tilburg. We had dinner in restaurant Paris. I ordered a tomatosoup but when I took my spoon in the soup I found a fly in it…jehhk. No more soup for me, thank you very much! I didn’t find anything else in the rest of my food…haha.

Wednesday we went home in the morning. At Breda we had traffic jam. So Macy wouldn’t sit quiet at my lap. So we put her into the catcaddy. I could sleep a little and whem we arrived at home we relaxed some and we needed to buy groocherys, because there wasn’t anything in the refrigerator.

Thursday the weather was very nice. Arjan went cleaning the swimmingpool ect. And I did the laundry. At 2 o’clock I had to go to my golflesson. I was already tiered, but we played hole one. It went oke. My third shot was the best. The bal got on the green, close to the hole but I missed. So I got this hole in 5 times. (it was a par 4) We may trie 6 times. Martin brought me back with the handycar because I couldn’t walk back. I was to tiered. A man helped me to put my golfbag into my car. When I got home I went to bed for an hour. Arjan went into the pool when I was gone. But the temperature of the water was only 20 degrees C. brrr..way to cold for me.
Now we know wy I 'm so tiered. In Tilburg I put the oxigen on 1,5 but at home I have 1 liter. So my luns and brestmusscles got lacy. Now it’s oke again.

Yesterday Hoekloos my oxigensupplier came to fill up my tank. He was quiet early so we decided to make a tour in our neighbourhoud. We drove an ANWB route the noordelijke overijssel route. Very nice. We came allong: ossenzijl, blokzijl, giethoorn, meppel, steenwijk, staphorst, luttelgeest. There we went to de orchideeenhoeve again. I bought three plants this time. We also had some caffee and tea with a piece of cake.
About half past 5 we were home again and we ate some spagetti.
Today we’re planned to go to the shoppingcenter to get some little things and to check if they can make my backpack. Well it couldn’t be made. Arjan bought new shoes for his work and lamps for his bike. He has to go to footbal tonight. Heerenveen vs Roda. He want to go by bike, but his lamps didn’t work and you must have good lamps on it.

When we came home I saw that my oxigentank was already half empty. He was just refilled yesterday so it’s not good. I called Hoekloos and I have to call again on Monday. So they can scadule me again to refill the tank properly. Tomorrow we go to Arjans parents in Santpoort. We planned a bbq. Hope the weather will be better…well arjan has vacation so it will be, he said!!!

Vacation

noreply@blogger.com (sandy) — Fri, 12 Aug 2005 10:43:00 +0000

Last week I didn’t had stomach-ache anymore. I made me a feedingscedule with my enteral feeding ect. I don’t do that all the time. With enteral feeding I sleep badly because I have to go to the bathroom so often. That’s because I get 1 liter extra fluid. With the peptisorb I feel hungry in the morning and that’s what I need. The last time I didn’t at very much. That's a sign of an infection. Now I eat better. Last check up I was 56 kg. I didn’t lost waight but I was 59 kg once. That’s what I want to waight again. I can use some kilo’s extra.

Last week I got a new blood sugar testing meter. I only should send in my older meter or my reserve meter. I wanted to send in my reserve meter but when I came at the postoffice, it was closed because of a computerdisturbance. Just when I go there, it is closed. Tsss.
Wednesday I tried to send my meter and they helped me right away. Mostly I must wait there an half an hour…I got lucky…

During this last week I didn’t do much spectaculairs. Today I'm busy with packing clothes and my medicines. We go to Tilburg in the evening. After dinner we will go. Arjan has still to work today and then he has vacation for three weeks. Tomorrow we go to the efteling with the whole family except my dad. He doesn’t want to go. He says he has something better to do! Wednesday we are coming home again. I have to play golf on Thursday and Friday Hoekloos, my oxigensupplier comes again to fill up my tank. The rest of the vacation we plan per day. Hopely the weather will be better. Our swimming pool runs over because of the sour rain.

Nice weekend

noreply@blogger.com (sandy) — Sun, 07 Aug 2005 20:54:00 +0000

Yesterday my day began early. I woke up in the middle of the night, because I had stamoch-ache. I went to the bathroom several times. That’s not fun, when you planned a day out. In the morning we went to the supermarket. We also bought little tygerbreads. After breakfast arjans’ parents came and they brought over our german friends, Michaela and her boyfriend Mike. Marischa (arjans’sister) and her friend Marinus brought their friend Willem with them.
We first drank some coffee with a piece of “oranjekoek”, a typical friesien cake. So, they can't say we didn't serve anything with the coffee!!. My father in law preferred a “bossche bol”, a typical chocolate cake from Den Boss. ( a city in the south of netherlands) In friesland we don’t have that.!

Then we went on our way to the “Orchideeën hoeve” in Luttelgeest. We didn’t visit the tropical garden because it was very busy and we were running out off time, because we just had to go to Giethoorn. In the store they bought some nice plants. I didn’t buy one, because the one I got last time, is already dead. So it’s a pitty. And I have my new begonia’s now. Hope they will survive. About 3 pm. We were in Giethoorn. They were waiting for us already. We could get on the site seeing tour boat immediately. We didn’t got very far because we had a crass with an other boat. The boy in the speedboat went first but we had to go first. He went way to vast. So he has a dent in his new boat. My father in law had to give a description to the water police about the accident. We didn’t have any damages so we could began our tour. We had some big rains during the tour. Giethoorn is a nice place to be for a while. Not to life. You life on an isle. You can’t come there with the car. You have to take a little boat or you must walk. That’s not good for my oxigensupplier…When we came back from the tour, I had to go to the bathroom again. I still had some stomach-ache. I tried to eat my lavagrilled meat and it was very good. I didn’t got any trouble anymore. At 7.30 pm. We were in Heerenveen again and about 9.30 pm. The family went to Santpoort again. This morning Michaela and Mike went home again, their vacation is ending. This morning I felt oke. We decided to stay at home. We were invited to Stefans’ birthday party. He is my friend Lydia’s son. I send Lydia a sms because They were in their new home in Assen. There isn’t the phone working yet. (well maybe it works already..). We wil go over there later on this month to celebrate the birthday and their new home.

Not fit

noreply@blogger.com (sandy) — Fri, 05 Aug 2005 12:10:00 +0000

Today I'm not feeling fit. It started yesterday. Begin this week, I started to cough and I even woke up this night because of my coughing. In the morning I started with my aerosoltherapie, and had some breakfast. After that I watched tv but I almost fell a sleep. ( that's not a good sign, when you're just out off bed)
Well, I put on the computer while I was waiting for Hoekloos, my oxigensupplier. They came early so I could have lunch. Whem I'm finish this blog I take an ibuprofen and then I'm going to bed. When I wake up, I hope I feel better. Yesterday my medication came, but not my colistine, the antibiotics for aerosoltherapie. It will come in today, otherwise monday.

Tomorrow we planned a day out with Arjans parents and sister and her friend and colleage and also friends from Germany. First they will visit the monument on the "afsluitdijk" and then they come at our place. We all go to the orchideeën hoeve in Luttelgeest. After that we go to Giethoorn. We made a reservation for two boats at restaurant het zwaantje after boating we have some dinner at the lavastonegrill.
Tomorrow the weather isn't good. If I'm not feeling well, I'm not going with the boat. I don't want to get realy sick. Next week we're going to Tilburg to my parents and to the park, the efteling. That's what I want. The weather will better than. I hope so!

Battery check

noreply@blogger.com (sandy) — Wed, 03 Aug 2005 14:15:00 +0000

Yesterday it was my day out. Normaly. At 10.40 hrs I had to go to the physical therapist and after that I wanted to shop in the village. Also to the chemist's to get some "things" without a prescription. But it went a little different I planned. At 10 o'clock I was ready to leave, but my car said: "trrrrrieeee plopfff". He didn't start anymore. The battery was empty. D***, Sh**.....!

Oke, Who shall I call? At first my therapist, then my dearest Arjan. Yes, he probebly knows a solution. He works at a garage so.... He tells me things I don't want to hear. "Ask our neighbour, he can start the car with...", "he isn't home, snik..snik...", "He comes home soon...", "oke, but....oh leave it...". In my angre I end our conversation and Arjan calls back immediatly. "what's wrong?", "the car broke down and just when I planned my day out". Well I must wait for my neighbour. After 15 minutes I see my neighbour and he started my car with his car. So I went to Leeuwarden to Arjans work. There they tested the battery and it was broke. So they put in a new one. Arjan also made my lock. I couln't open my door normaly. Well everything is alright now. My Ford Ka drives again!
I'm out again! So today I did my "things" in the village.

When I came home, to write my blogs, I read about Esmé, but she's very ill. She's in Intensive Care in the hospital. She has CF and she had new lungs in january. But her new lungs are repulsing from her body. She get's medication and hopely it works. Esmé couldn't enjoy her new life jet, because she had so many complications. It's so unfear!
And then to think that I'm a wrack when my car broke down and she is fighting for her life at the same time!