An update.... finally

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.