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.