JeePee's Health Diary http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl? http://www.eblah.com en JeePee - sad news ........ http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1242208188/ http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1242208188/#num1
Quoted from Judith
Hello JD Family,

I have no idea how to tell this to you all............

Saterday evening JeePee's condition was getting worse.
This morning the doctors told us that he couldn't win the fight.
There became a lot of complications and there was no change to recover anymore.
At 4:00pm the nurse took a last bloodsample to see if there was any progress, but there wasn't.
Then the doctors decieded to stop the treatment.

Today, may 10th on 6:07 pm local time JeePee past away in peace, with his family around him.

I want to thank everybody for your sympathy, thumbs up pics and candle burning.
It's gonna be a very hard time.And it's difficult to realize that he is really gone. He is leaving a big empty spot in my and my family's life.

For now i have nothing left to say......

I will keep in touch with you all.

   Judith  Master of JeePee


]]> Wed, 13 May 2009 10:49:48 Max JeePee in Intensive Care http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1241611027/ http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1241611027/#num1
Quoted from Judith
Hi Everybody,

No ggod news unfortunately. Monday i got myself booked a room at the hospital to stay permanent with JeePee.
He was so sick that he could'nt nearly breath. At 11.00 pm he was so bad on breathing that the doctors brought him to intensive care where he is now staying. Now the doctors keep JeePee to sleep and let him breath by a machine.
His hartrade is 180 bpm an his bloodpressure is way to low.
This afternoon they will bring him back out of his sleep and than they let him breath by hissself.
This treatment is because he was exhausted.
When he is strong enough to breath and coughing fit his sputum than he can start to try to recover from his pneumonia. And we hope that the medicine will do there job.
No good state, but JeePee told one of his doctors to go for it, and that's what we gonna do !!!!

Before he brought to sleep he gave me the

.................. ........................

We will Keep our fingers crossed.
I'm not able to go on the internet everytime, but i'll try to do my best to keep you all informed.

Thank you all for your sympathy and we are verry moved by knowing that we have so many friends/family  all over the world.

Keep our Fingers crossed!!!

Judith  - master of JeePee


]]> Wed, 6 May 2009 12:57:07 Max JeePee in Hospital http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1240617891/ http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1240617891/#num1
Quoted from Judith
Hi Everybody,

I just want to let you all know that JeePee woke up whit a 39.8c fever yesterday. We had to go to the hospital where they found out that he had a pneumonia and kidneystones.
He got to stay for at least 3 weeks.
He is very short breath and he got extra oxygin. Today he had a fever of 40.3c.
Now they gave 2 antibiotics. So fingers crossed en hope that the midication do what they have to do...
One good thing is that he is staying in the same room ads during the transplantation, en we all know that only good things came out of that room.

If you want to send a postcard to cheer him up here's the adres:
Erasmus MC
JeePee Schuurbiers
Afd. SV Room 211
Postbus 2040
3000 CA Rotterdam
The Netherlands

Thank an i will keep you all informed

Judith....Master of JeePee

]]> Sat, 25 Apr 2009 01:04:51 Max Heavy short breath period Part IV http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1239979592/ http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1239979592/#num1
Sorry for my late response but thing are not as I hoped it would be... It's going to be a depressing story this time...

We started using prednison (medicine) at 60 mg 6 weeks ago as a final attack on the scare tissue inisde the lungs. This amount of medicine for such a long time had so much side effects that we decided to stop last week after almost 6 weeks. In between this perriod I catched a cold which needed to be treated with another bunch of antibiotics... So...  result is that we still do not know if we solved problem.
What we did get was a large list of side effects that is ruining my day (life ?). So... here we go.. Now I got (besides a very low lung volume of 1.2 iiter FF), sugar (yep, gotta inject insuline... take medication twice a day), got a very bad eye vision (can't read close by like newspapers or magazines). Got an apointment with a eye doctor this monday, Then my right side of my lung/body is making "noise" and feels like a very heavy muscle pain for which I am taking painkillers. and what bothers me most is my humor which is totaly gone.. I am feeling so unbelievable depressed, down and nagative.
I start to think why this all is happening to me... if you see what a bunch of sh*t has happend to me last couple of weeks, months, years... it looks like someone is really pissed at me... litery everything spark of hope is taken away, every small thing I try to enjoy is taken away... Work is taken away 20 years ago, music is taken away 8 years ago, traveling is taken away, designing i going to be taken away when my eye vision is not getting back... running is taken away, my "long hair" is taken away (hehe... Yeah I am still a Rocker....),  you name it... all my small enjoyments are gone...

What is the future? Well.. if you look at it since October 08 when I was "healthy" with my super lung of 4.8 (FF) it has dropped 1cl to 2cl every week since... Last monday I had 1.2 liters. There has not been a mayor drop back since 5 weeks now. But 1.2 is so low that you can't do anything with it. Oh yeah,  can walk the 20 meters to the pond infront of our house but that is about it for now. How low can this lung volume get? I do not think much more. Stairs are getting pretty heavy as well. Attic? Nope... Haven't seen the attic for a couple of weeks now.
I think I need to dust of the wheelchair again.

What are the doctors thinking? They are really doing there best. all test results (every week they are checking me again) are consulted with the other 2 Transplantation centers here in Holland and the best one from Belgium (Leuven city).  So all knowledge there is here is used.
Biggest problem is that my body is not reacting positive on all treatments that are working perfect with other people.
The "CMV virus" and the "pseudomonas bactery" are still not under controle. Both are being treated with medicine.
Last week my doctor told me that they are crossing there fingers as they are out of options. Well.. there is still another transplant.
If all goes better and threatment succeed he also told me I might get 0.5 liter back (which makes it to between 1.5 and 2 liters FF top) but we will never get back to my old volume...

So... at this moment I am back before the OP in december 07 with the small difference that I do not use Oxygen (yet) and that the lung I got right now is still doing it's job propper...

Biggest thing right now for me is my eye vision, my super negative feelings and depression moods... this is so not me...

I do hope I didn't scare you all too much...

Enjoy life guys.... Everyday!

JeePee]]> Fri, 17 Apr 2009 15:46:32 JeePee Heavy short breath period Part III http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1237041682/ http://www.maxwellshouse.co.uk/cgi-bin/forum/Blah.pl?m-1237041682/#num1
What it seems to be to biggest problem is that my body "thinks" there is a wound inside the lungs which need to be repaired by making tissue (the would tissue that you will get when you hurt your knees or arm). There is no would in my lungs but still tissue is beeing made... and where there is tissue there is no space for air.

This is a "common" problem (not only for transplantation people) and to resolve it they do the 3 days IF with 1000 mg Prednison (steriods). "Normally" this stops the process of making tissue. The body will then desolve the tissue and live goes on.

We found out that there are a few reasons for my body to do this. So we stopped 1 medication and changed another one (the rejection medication has this a side effect so now I am taking another rejection medicine that has this "less"). This happend about a month, 3 weeks ago. Since then my lung volume has dropped "only" 3 cl in that time. Good, but not enough, problem is NOT solved.
Last week we started another threatment and that was to stop the other rejection medication (the one for virusses) and double the prednison medication (which is now 60 mg per day) and double the medication against the CMV virus (that was inside the Donor lung from the beginning). CMV virus has also the side effect of stopping the healing process.
Hope this will do some more good by first stopping the grow of the tissue and later on the absorbing it to get ride if it.

Had a call last Friday from my doctor and he told me that we needed to talk this monday. They are getting out of ideas to solve the problem. There is one other thing we could try and that is a new kind of medication (pretty toxic) but this medication is still in it's urly state of invention...

What does thisall mean in a nut shell? Well.. simple.. I got 1.5 liters lung right now and if this is going to drop every week by some 1 or 2 cl there will be notting left in about 6 weeks... and life isn't funny below 1 liter for sure.. so... that leaves me about 2 or 3 weeks.. Hmmm...

Ok.. I do feel good, not sick, no fever, no weight lost etc. etc. but "heavy" stuff like running and bicycling is too much. I start to push this from my wish list... again... But I did menage to "clean" my room which is now displaying all my Black and Green label bottles.. Oh man... this looks sooo cool!!

Prayers are good... but for me the "thumbs" got a better healing strength. These always helped me in the past.

Thanks all for checking my page again. Will be back by the end of the week and tell you what the doctors sad (got an apointment Monday, and a three days stay from wednesday till friday this week)

JeePee]]> Sat, 14 Mar 2009 14:41:22 JeePee