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