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30-April 2004.
Thank you for showing interest in my health problem.
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I have Cystic Fibroses since my birth in 1967. I am one of the oldest living patients here in The Netherlands (without a transplantation) and I am still going. Last years it became very hard for me to walk long distances and climb stairs. I had to stop working 10 years ago allready. "I should enjoy live" they told me. Enjoying live with less then 2 liter of lung volume is pretty hard. My lungs are giving up and need replacement fast. I still do not use extra Oxygen but it wouldn;t surprice me I will have to soon... Now I am using prednison for extra air. (I know that's not the solution)
At this moment
The average waiting time for these kinds of operations is 2 years. So.. we are counting... When I am on this list I am not allowed to leave the country. This means there will be no BBQ in Lynchburg for me the next couple of years. After the operation I have to stay in the country for another year (weekly check ups...)
I will update this page every time there is some information that I think would be interested for you to know. When it's time for the real thing, "the operation", I will let my brother in law write for me a day by day to keep all of you informed. In that time please do not E-mail me at jschuurbiers@ hotmail.com for the simple reason that I have no access to the internet. Better use my home addres and Judith (my girl) will take care of the mail. My post address is:
Street: Waterbeemd 19
Zip code: 4907 DX
Place: Oosterhout
State: Noord Brabant
Country: The Netherlands
27 May 2004.
It's a month ago since I am on the list and I am getting used to it walking around with my beeper. Lost a few pounds so my weight is getting pretty low... I am weighting "only" 97 pounds now... not much so I could use some beef! hehehe... Stopping with prednison looks almost imposible for me. Everytime I'm thinking of stopping this medicine I get a kickback and need it. Pffffff...
Anyway, I feel good so these pounds will get back in the next coming weeks (I hope..).
20 June 2004.
Waiting is no problem, my time will come... For all of us the Holiday has come! Normally we plan a nice holiday somewhere in the US or in Europe. This year it will be different. I am not allowed to leave the country so I have to stay here in Holland... Jippy... People that are on the waiting list are not allowed to leave there country and have to stay in close range of the hospital just in case there will be an organ available...
To make my holiday more interesting my dad bought a motor boat that we can use to enjoy Holland from the water side. As most of you know Holland has a lot of water! Just hope it wouldn't be so hot and moist like last year, this will spoil a lot for me in my search for air...
Oh yeah, my weight? Still the same... tooo low (and I am totally not hungry...) If someone knows a way to break that no hungry feeling let me know!
To give you an idea how my condition is right now... I can walk 100 yards and then my oxygen will go below 90 (under 90 your hart starts working real hard to get oxygen to the brain instead of the rest of the body). Stairs? I can take 12 stairs and then the same problem happens... He, but I am still happy and looking forward to meet you all over 2 years (?) at the BBQ in Lynchburg!
18 July 2004.
I stopped prednison for about 2 weeks now. It has been over a half year since I used this medicine and to get ride of all side effects this has on your body pfffff... Pain inside my right foot, musscle pain in my arm joint so heavy I can't bend my arm (!) and now both ears are having a lot of problems... This is no fun guys...
But I will try no to start again with this medicine (for a while)..
When that lung operation is done this prednison medicine is one of the best medicine to keep my body from fighting this new lung. I will need it in the future...
Good news and something I look forward to is our little holiday that starts this week. We (my girl, me and the beeper) are having a nice week on my dad's boat. We will go and enjoy the sun and fun from "Sealand", one of our states along the North sea. We will bring my Electric Scooter with us. This way long distance are no problem for me and I still look cool! (that's important for me...huh huh...). So next time... pictures of a Dutch Holiday!!
6 August 2004.
Yep...I started prednison again... I lost so much weight ( lowest point was 46 kilo's / 92 pound). I didn't eat for days... no hunger... lost sense of life and stuff...
So I started using 30 mg prednison for two days to kick off that hunger feeling. Now I am using 15mg a day and feel real good, eat good and love to life again. I know I will have to quiet that medicine but not now... I need this "good feeling" for a little while. (Does drugs feel like this???). At this moment I gained 3 kilo's (in one week !) so that's good. I need a good condition for when that phonecall comes...
29 August 2004.
A girlfriend from us, also with CF had her phone call last week. She was on the waiting- list for "just" 1 year. Scary moment... This means for me that I have to get things orginized. Will have to pack that bag, finish my adminiatration and stuff... I made a hotmail account with "friends" to Email in a touch of a button.
I did make an agreement with my dad... he will update this page with the latest updates when I am laying there with all the tubes stuck in my body ... But, I promise, I will take over as soon as I can move my fingers! 1 week? 2 weeks? I got my laptop ready...
At this moment I am feeling pretty good, weight is "back" to normal around 52 kilo's / 104 pounds. Still feel hungry, so that's a good sign.
I do look forward to the operation... if I had the choice then I would do it right away. Still can't walk a normal distance or climb more than 13 stairs at once...
If you don't have to take pills it's a blessing.. but there is one good thing with pills... You can play with them. If you don't have pills at home try this little game here on the Jack Daniel's Collectore page. Just click here
19 September 2004.
I've been to the doctor last week and he told me the news that my oxygen saturation was to low last time. Healthy people got 95 up to 100 % oxygen in there blood. If you go below 90 % you are in the danger zone... I have a 87 % satuartion in rest... This means if I walk stairs or walk 100 yards this will go way below that 90 %... With other words bad stuff guys. He told me I have to start taking oxygen for 16 hours a day minimum.
I thought I had a problem since I wake up every day since about 2 to3 weeks with a headache. This means shortage of oxygen... So we got a nice future ahead guys...
I do feel good, eat good and do the things I want to do everyday, but I am really looking forward to that phone call...
26 September 2004.
... Just got back from a 3 days visit to the hospital... They have checked that oxygen problem from last three weeks and indeed, during my night rest I'm going very low with that O2 level... even a lot under the 80% ... So, now I am back home and have to use oxygen for at least 16 hours a day... They have installed a machine that's making O2 for me... If I use it propper my hart doesn;t have to work so hard for 24 hours a day and can "rest" a little during the night. Let's see what happens next week...
17 October 2004.
... boring... Guys, it's like I am set into "hold"... Can't do anything I want, just wait till that phonecall comes, re-cover for a half year and than finally go on with my life.
What I do all day? Well, the last two to three weeks notting interesting. Wake up late, rent a movie, cook for my girl friend and surf around on the internet and go to bed.
I hate this doing notting. I want to work and do things we all do... My health at this moment is good... low (very low standard...) but ok....
The oxygen is working. I do feel better with it. Had a lot of trouble with the dry air in the beginning (blood nose) but now I am getting use to it. Also started a new spray medicine (Tobi). Pretty agresive stuff they told me...
The BBQ in Lynchburg is held over two weeks. If I wasn't on the list I would walk around in Lynchburg and talk to my friends over there... I am there in my mind...
At this moment I am having a very bad week... This is the second bad week from this month. What is a bad week for me? Well... if I can't walk more than 15 yards (meter) or take 13 stairs (first floor of my house) and have to rest/wait for -yes- 5 minutes before I can go on than I'm having a bad week. Imagion that you have to go to the bathroom during nighttime and you have to wait 5 minutes before you can go back to your warm bed because you haven't got the breath to get there... well it's that bad during those days/weeks. During those 5 minutes of rest all kinds of bad things are going tru your head. Not that I am affraid of dying or what so ever but more of anger for the reason "why me...?? why now...???". And believe me, man I am pissed during those 5 minutes!
I started using my "old" medicine "minocine" which I think works best for me... Oh yeah.. prednison? Back to 30 mg a day now.
I hope I am not too pushy with all those "Donate life" stuff and so... but you might help someone els with it...
10 November 2004.
Not much has change since the last update. I am using Oxygen 24/7 now, but it's not what I hope it would bring. I haven't been out of the house since... My brother in law had to mail the boxes/letters last week because it was simple to much for me... I look forward to better conditions. In the mean time I am enjoying my music loud, surf around for way to many hours and work on the site a little. With health down a little, my "creativity" also gets low... Hmmm....
I'll enjoy my glass of Jack and dream away... "Driving around town square in Lynchburg, TN in a red Mustang convertible '67 with my girl and my best bud Willie beside me" That's the first thing I will do when I am back!
28 November 2004.
Sunday morning 20 November I had planned to update this Health page with new information. But we decided to go to my mom and dad first for nice Sunday morning cup of coffee... What happend that day???
I had allready a bad feeling when we where there. It was a cold day (almost freezing), lots of cigarette smoke inside the house, my bad health condition at this moment, maybe stress for what's coming and with all that a nice half glass of Jack Daniel's Tennessee Gold... I wanted to go back home, back to my O2 machine that could give me some extra energy and clear my head.
I did make it to the car but not to my home door... I lost all controle of my breathing and it just ran off... It lead to inefficient breathing, a sort of hyperventilation. Judith took controle and ran of home to get the 02 tank we had in case of emergency and the phone to call 911. I was in the local hospital within' 15 minutes where they did the rest. I will spare details this time ok...
It took about a half hour (allthough it felt like it... ) before I could make my first joke again and I told Judith that there was no "white tunnel of light" but just a bunch of South Park characters like Cartman and Timmy making fun of me... (I have been watching over 120 South Park episodes last 3 weeks...)
It was/is a serious problem they said last week and it need some extra research. This could lead in upgrading to the urgent waiting list. I am back home right now but feel there is more to do before I feel safe again...
8 December 2004.
It's been almost two weeks ago since I had that breathing problem. Can't say that I am feeling safe now or that I make any progress. If this is my new standard way of life than that's not much to look forward to my friends. Haven't left the house since. One good thing is that I am working on the site almost everyday now so... drop me some work guys!
Have got lots of apointments with the doctors this month. Health situation is not bad enough for the "urgant" list so I am still on the "normal" waiting list which can take up to 2 years... whieeeeeeee. So I have to get use to this way of live.
Next time I will be more up cheering, I promise
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When I open my window these days all I see is this guy smiling...
He knows... don't take life 2 serious
Have fun!
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I started this year with one thing in mind, what should I do when I get out of the hospital with my new lungs... I definatly will book a vacation to the US. Problebly a big tour from Tennessee all they up to San Fransisco/Los Angeles. Show my girl the other side of the US. We have been traveling the US a lot in the past. Lot of the time in the east close to the distillery (Florida close??.. Niagara Falls close??). Love it! But it seems I am always talking about Las Vegas, San Fransisco en Los Angeles (I 've been there once in 1988 for a month). So it's about time to go and show her around.
This "dreaming" will give me the strength to fight against all what I am going tru now-a-days. Still using O2 everyday/night. I do feel real good and left the house a few times (whoo) to mail a letter or to get me some DVD rentals. It's still not much but I can handle it.
When you're feeling bad you think totaly strange things like, what will they do with my JD collection? What should I do with it when something goes wrong?
I have been thinking of that a lot lately... What would a I do with all that Jack? My girlfriend doesn't know how Ebay works or doesn't want to wrap all that stuff up for "strangers". I support that thought 100 %, it's my "shit"...I can sell it to one seller for one price? What I really want is...
I have made this website (The Jack Daniel's Collectors Page) for all the collectors to see what you can collect from Jack Daniel's. There is no catalog, no book , no records to see what is missing in your collection, no help from the distillery (!). I want people to see my collection, not only on the web but also in "real life". So... the best place for this would be Lynchburg, TN off course...
Now I know that Mr. and Mrs. Baker from Bakers Antique store got a big basement with "so so" stuff...
If they would use this place to display the collection. Man that would be top!
Everybody can check it out over there. I know for sure there shop will be an even bigger attraction that it allready is. I love the Bakers thoughts & hospitality.
Well... one problem... we got over 200 liter of JD to ship from Europe to the US...
But I am still there... so you'll have to do it with the Websites info...
Oh yeah... I am going to finish my trip to the US for sure...
24 Februari 2005.
Allthough it is winter here in Holland I am doing pretty good. "Normally" I do have breathing problems with freezing cold air, but since I am not going out of the house for long times I am doing pretty good. The times I have been out of the house went out pretty good. Walked in my favorite shopping mall for a half hour (like an old man...hehe) and enjoyed it all the way. Using 02 for about 16 hours a day now.
This weekend I will try to go to this collectors fair in Rotterdam and hope to find some JD stuff. Will bring a wheel chair with me just incase I can't walk the distance. This will be my first time in public in a wheel chair... hmmm...
Hope I accept it... People will see me in that chair...whieeeee.... But at the end I will be there on that fair and that's what counts for me!
3 March 2005.
Yeah.. my first "wheel chair trip" is a fact... Did I like it? Well... uh what I did like is that we can go out of the house.. for sure. But now I experiance out of first hand what people see or better not see when they are bound to there wheel chair... Passing the tables at that collectors fair in Rotterdam last weekend I can tell you... you do not see what is on those tables! Now and that is just why I wanted to go for... If you walk you see 100 % of the items displayed on the tables.. now you see only some little front shot of items...
And second is off course the driver of the chair... hehe... me and my girl (Judith) are buddies and love fairs like this.. but man can see walk fast! hehe... Imagion this scene: Me telling Judith "he look... cool trucks..." and before I could see "trucks" we where at the next table...man... can she drive that wheel chair! hehe... we had fun that day!
But as always after good time come... bad times. It is freezing here right now in Holland and that is taking it's toll... I am doing pretty bad last 3 days and we are back at 20 meters walking and just one set of stairs (first floor max)...
18 March 2005.
Since last december it is going pretty bad with me, I do got good days and bad days. But I always found a way to enjoy my time. Everything is going on a real slow tempo, no rush... When I am out of breath I just wait 5 minutes and then try it again.
But yesterday the most worst thing in a Collectors life happend to me... While playing with making websites and answering Emails one hell of noise raised behind me! One of my displays collapsed! 4 glass shelfs filled with full/sealed bottles, older items, paper and wooden boxes.. all fallen down!
Now I see you think what has that got to do with his health conditions? Right now I can't walk 20 meters or climb 13 stair steps... and seeing 4 liters of JD whiskey flow over the floor... A glass pile with historical value and not be able to safe or clean a damn thing! This made me very sad... Not the value of the lost bottles, but the fact that I needed to call my girlfriend to clean up the mess because I am not able to do it myself! I carried 2 big 1.750 ml size Green labels to the other room (that's less than 10 meters from each other??) and I had to rest before I could go back.
This accident makes me realize how "disabled" I really am... I start to look like that "geranium" in front of a window in a home for the elderly...(no life).
What I lost? A full/sealed Quart size Green Label from 1974, 2 full/sealed single barrels from 1999, a pig shot glass, 2 sniff glasses from the Single Barrel taste test case, a full/sealed 750ml size Green label Japanese bottle, a full/sealed green label miniature... oh yeah and some floor pannels and display shelfs...
28 April 2005.
JiPpy! Party time ... I am on the waiting list for 1 year now! ...And still no news...
I am still in a bad shape. We've been to the hospital last week and according to the figures that came out of research I am almost "ready" for the urgent list. If this is good or bad news I don't know but trust me... I am looking forward to it! Walking, climbing stairs (to 1st floor) are getting real hard. Can't walk more than 30, 40 meters. Don't feel confident and it starts to look like I am fighting everyday now... Something I haven't felt before.
Wake up, coffee and newspaper... getting up there to the first floor and sit behind my PC and watch what is going on in the world (of Jack ..?? hehe). In between I do eat and drink more coffee...
But that's about it for every day now since a long time... boring huh...
The weather is looking good for the next weeks so I am pretty happy and I will try to walk a few meters outside the house!
Talk to ya laterrrrrrrrr....
Dear friends, I wish I could share more good news with you all but I will not beat around the bush with my health here. I am not doing good. Since more than two weeks I am using maximum medication. I am very limited in condition, haven't left the house since...
I will ask my doctor to put me on the urgent list. We (the doctors and my family) have been taking about this urgent list for a couple of months now but the numbers/figures that came out of the researches where not "bad" enough for this list. Last researches where "bad" enough... So...
I wish I had the same luck that I have with finding good Jack Daniel's items with my health... hehe
Laterrrrssssss
11 july 2005
Almost 3 weeks ago since my last update.. what is going on over there at JeePee's??
Well... it's summer and with summer comes hot weather... fine for some people, less for people with breathing problems... me.
As soon as the temperature goes over 25oC / 77 fahr. JeePee is going back to his cave and lock him self up... With this kind of weather every meter seems like a mile...
I had one 911 call to make these last 3 weeks. Woke up from a bad dream (about claustrophobia) and could not get my breathing under controle. 4 hour later in the hostpital everything was back to normal and I could go home again...
They gave me sleeping pills to relax more and to keep my mind from wondering off from the good path... hehe. I just used them the next three days.
Ok... at this moment I am feeling good. I still don;t walk distance (30 meter...) or do strange things but I am feeling good and that's all that matters now.
We will go on a small holiday for 3 days next week. I will take some pictures and show them here on this place.
8 August 2005
When they told me that I would be placed on the waiting list for my lung transplantation
one and a half year ago I had this feeling that it was my "time" around October 2005. Now we are getting close to this date I still got that feeling. Normaly it "can" take about 2 years before it is your time to get the call. So thinking of this is a daily job now. I got my "bag" ready, filled with a tooth brush, t-shirt and some shampoo. Every call now is a call that brings me strange toughts, is this my call?? And I mean .. every call, day in day out...
I am ready, finished with this way of life and ready for a new life with sense, work, fun and enjoyment. I do look forward to a holiday the way we want and not what my body can handle (uh.. that's notting...).
| He... didn't Jeepee just came back from a holiday!? Huh huh... what a fun... driving around in your wheelchair... second time in my life and guess what happend? ...flat tire! Had to wait a half day in our hotel before they could fix my wheelchair wheel! hehe...
A wheel chair with a flat tire...ain't that JeePee all the way! hehe...
We had our fun and with out doubt a great holiday (indeed..."day").
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2 September 2005
Today it is 500 days ago since I have been put on the waiting list... Party!
How do I feel right now? Well guys, I feel good. After a little while the bad things are getting daily news, you get used to it that you can't do things anymore that seems normal a couple of years back. Like running, like cycling or simple things like going to the attic with out needing to rest. Going shopping or going to bars, concerts etc. is history for me.
Do I mis these things? Nope.. not anymore. I have accepted that this is my life for now and I do enjoy every minute of it sitting behind my PC or sitting in the living room watching TV. That's my life now...
One thing I do not like is that unwrapping packages with Jack Daniels bottles and stuffies, it is so breath taking... hehe... Well if that's all... hehe...
I am having my "panic" attacks more often now, but it seems I have controle of them and I can get myself back under controle... Off course this is another sign I need "help" fast...
Oh yeah... I have pimped my ride! I have attached a bicycle bel and a bottle holder on my wheelchair! hehe...
17 Oktober 2005
First of all sorry for my late response here on this special page. There in no excuse for being so late with a new update. There is no news to tell guys, it's all the same. So.. no good news and no bad news so... Good news!
I guess because my health is so, uh, low, I lost some intrest in the PC and doing things in general life. My week can be cut into two pieces, 2 good days and 5 bad days. Good days is something I really look forward to and enjoy all the way and the bad days.. well... let's keep it to bad days.
Next week I have a 2 days apointment in the hospital for a check up. I had some major problems 3 weeks ago and needed a shrink to get my negative thoughts out of my head.
I keep thinking negative thoughts all day long, things like "shall I make it", "will that 'donor long' be on time", "what if I get a cold this winter?", "what if..." etc. etc. Negative all day long...
This kind of thinking also controles your breathing ability in a negative way.
So, back in a down way spiral. I have called the hospital/doctors and they give me some medication to calm down and we made a check up on that same day. Every controle that was done was 100 % perfect, no way of decline since 1 and a half year ago!
So.. now I am "mentaly" healthy (I had to see proof that there was no decline) and ready for the next half year of waiting.. Hope it will be the last half year!
3 November 2005
Two days of hospital has been done. We did a few researches like X-ray photo's from lungs, Volume testes (1.51 liter lung volume), blood and mucust research etc.
Results where good. Notting was found and I am still on the same level from one and ahalf year ago. So, only good news! But.. where do all the problems come from that I experiance during my "normal" life back home?
For now I am using some kind of medicine to keep my "mind" relaxed. Sleepy...
I also started Yoga exercises...
21 december 2005
Lets start with saying I am doing good! Yes, it has been a while ago that I could say that I was feeling ok. Reason for this? Well... I do not know for sure but since 3 weeks I am going to this "foot reflex" guy/doctor and since I had 4 treatments I do feel pretty good. Foot Reflexology is an ancient form of "pressure treatment" and involves applying focused pressure to certain known "reflex" points located in the foot, which correspond to certain other areas in the body.
Now, please know that I am totally not into this kind of "playing doctor" but even with this in mind it looks like it did help for me. Hmmm....?
I am thinking positive again and I do got so much energy that even Judith starts to complain! hehe...
This does not mean I am not having problems and that I am healed but it sure is a releave to think positive again.
That's all for now guys... from Holland we wish you all the besty wishes for the Holiday Season and we do look forward to the next year!
29 januari 2006
Over two months it is 2 years ago that I was placed on the waiting list for my lungtransplant. Had my ups and downs last month but overall I do feel positive. Medication is doing good and it keeps all the problems outside my body. Ok, still can't walk a mile or do much but as long as I stick to the plan I can manage.
The doctors want to try a new inhaler with a new kind of medicine. They also told me that I have to eat more and have to gain about 8 pounds. That is a lot for me...
Oh yeah.. I still go to the foot reflex "doctor" and I am still thinking positive about this kind of treatment.
19 februari 2006
At this moment I am having a bad time. Just started 30 mg Prednison and a second antibiotic. If I look back at the last 3 months I noticed that I am losing creativity and "intrest" in things I am doing. It doesn't mean as much to me as it did before. I could enjoy making animations and work for hours on pictures... but that is gone.
I really hope this will get back soon. We (yeah... my girl Judith included) had a lot of bad things happen to us the last half year and it looks like we both have "had it" with all...
We need a break... the break would be my phone call!
I know one thing... I will enjoy my stay at the hospital as a vacation and will enjoy all pain with a smile knowing I will have a good time when I am home.
Man... we will kick "bad luck" behind it's "^%# " so bad it will never return! hehehe...
12 March 2006
Well it seems everything (health) is pretty steady for a while now. I started and stopped using my new medicine. Seems that after I used it I am getting very short breath and I had one panic attack cause of it. So.. back to old medication and everything is the way it used to be.
Getting close to the 2 years of waiting for my transplant. I must say I am getting very lazy and losing intrest in finishing things that I have started. More like, "I will take care of that after my transplant" kind of thing. I do not like that mentalety but it is getting in slowly...
I feel good now the weather is getting better and spring is on the way. Whieeeeeee....
Dear friends, thanks for all the nice Emails. I really apprecaite it!
Thanks again, Jean-Paul (JeePee)
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