13 October 2007
I know, I know... it has been a long time ago since I have updated this page and I know a lot of people still read it or check it out regularly. So where is JeePee???
Well... I am still here and yep.. notting changed since last time. Still frustrated cause notting is changing in my life and all good stuff is passing along. I will mis this years BBQ again, will mis all the gatherings at the Dolphin in the UK, mis meetings with close friends cause I can't leave the house/country. Vacation? What's that?
Been to the hospital -again- last week and we talked again about the urgent list (he... where did I hear that before??? one year ago? two years ago? Is he losing grip or what??? )
I have to do the 6 minute walk again next week and the doctors/Lungtransplant team will go with the result to the people who decide who's comming on the urgent list and try to get me a place on it!
Yeah finaly.... is there light after this darn 3-and-a-half-year-long-dark-tunnel?
I have to see it happen before I believe it.
My health is still OK enough for me to do my thing (what was that? Watching TV, surfing on my PC and uh... read the paper? hehe).
I know... when I started this "Health page" I used to fill it up with smilies, funny animations and stuff but to be honoust... I am losing so much good stuff everyday that I am not in the "mood" anymore to do all that... sorry guys! But... the real JeePee will be back for sure (...one day)
I am glad I still got my Jack Daniels collection/ addiction that keeps me hooked on the PC!
C ya laterssssss!!!!
16 august 2007
Been a long time ago since I have updated this page. I am still here and to be honoust... notting has changed all these time. I do my thing, day in day out. Wake up at 09.00, drink my coffee and read the paper... watch some TV, walk to my office (second floor, 13 steps), do some PC work (design, surf etc.).... walk down stairs again eat some, drink some... watch some more TV, fal a sleep till 17.00. Start some light work cooking. (I use to cook with love, hours and hours... ), we eat some, drinl some more coffee and than I'll go back to my office to play a game on my PC or to surf around on the forum... go to sleep around 24.00.
That's what my days look like the last couple of years... Weekend changes? Weekend? What is a weekend? Oh yeah... when Judith is home 2 days... hmmm... that changes a lot in my daily routine... Now I stay up till 00.30. Cool!
With this lung volume there is notting more to do than sitting behind a TV or PC...
I do go out with my wheel chair so once in a while.. to the super market! That's my weekly surprice! yeahhhhhhh...
But I feel good! Thank god there is internet!
You see .. last couple of months there is simple notting intersting to share.. wish I had news guys... wish I had... new lungs...
16 may 2007
Well I have been to the hospital yesterday cause of my health problems last week. I looks like a lung infections and since there is no place for something like that it's pretty scary. I had a lung volume of just 1.46 liter which was my lowest result ever. Blood tests and mucus tests from which the results will follow later this week. I was allowed to go home with another antibiotic and we agreed when it was not getting better by this firday I will have to go back and stay for an IV (Intravenous) antibiotics treatment.
Another subject we spoke about was the waiting list/Urgent list. It seems they had a lung available for 2 persons.. one of them was me. Well as you found out by now I didn't get it. But this means it is getting closer and closer now... whieeeeeeeee maybe.. maybe! hehe
C ya next month!
8 May 2007
It has been a long time since I had some much trouble... Yes friends last night I had one of my worst night rests since years. I was pretty scary. It started yesterday with a shore throat and a few panic attacks. Since I am so short breath in normal condition I can't have anything happen to me. Every cold is a heavy attack on my health.
Before I went to bed I took 35 gr. of prednison cause I was very short breath and this seems the only thing that helps a little. Shaking legs, sweating hands and feet, dry mouth, pain in the neck and a tingling upper body are a few things happen to me in the begining of the night (before 02.00). No headache or so but some preasure was there along. When I finaly found some rest (the prednison started to work ...). It's just a matter of happy thoughts that get you into sleep. But finding happy thoughts with such a breathing problem is getting harder and harder to find. These nights you don't want to happen to often, it's scary...
I slept till 07.00 in the morning and woke up pretty aroused. Most of the time the first night is the worst.
I went downstairs, drunk my coffee, read my newspaper and started the day. Right now (1.25 PM) I am feeling OK. I have not planned to do anything today, sit, do some PC work/gaming and watch a movie later on. What a life....
18 April 2007
It's been a little while since I have updated this page. Reason is simple... there is no news to tell right now. I am still doing good enough to enjoy my days behind the computer and watching TV. We did a 6 minute walk last week and it was a little less then before but still good enough. I am very happy that the winter is over and that it was not a "heavy" winter like the years before. Temperatures between 10 and 25 c degrees are the best for me. Last weekend we had a sort of summer kind of weather with a 28 c temp and this was no fun. Had planned some good things but all where canceled because of short breath problems. Notting helped and all I could do was sit still and .. breath. Now all is back to normal and I can walk my 20 to 30 meters again, do the cooking and put on some coffee. So.. no worries.
Oh yeah... one thing... I do not like it at all... just wanted to share that with you.
10 Januari 2007
Happy new year everybody! I am still doing pretty good. Notting changed since my last words accept for a kidney stone "attack" just before Christmas. Man that hurts... Woke up urly in the morning with lots of "unknown" pain around my kidney. We where a little bit affraid it was something real bad and we almost called 911. But I survived the pain till around 16.00 when the doctor arrived at my home and gave me the "good news" I just had kidney stones. With some pain killers I really enjoyed Christmas and New Year. That was my end of the year.
I started this year with out that pain and I guess the 7 good years are commin !
And for the rest? Well... still a bit short breath (same ol' song), 02 24/7, weight is still 54 kilo's (108 pound). I had to do the walking test again in the hopital on the second of Januari and I did 318 meters now in 6 minutes. I had a good day...
Got a phone call today from the hospital that the where a bit affraid of my blood test from December last year. It seems I am building to much carbon dioxide. Whooops...
Oh yeah lungtransplant? I am almost waiting for 3 years!
24 November 2006
It's still going good guys! This must be the 10th week now that I am feeling good enough. I can walk 13 steps of the stair or can walk about 30 to 40 meters without dying. This is good... It makes me happy. I hope this will continue tru the winter. The weather is still very soft and winter seems to be far away. I also think that this "good vibe" is comming from that foot reflax therapy. Yeah... I feel good guys.
Use all my standard medicine including 10 mg prednison everyday. No bad results from the researches at the hospitals last month. Blood was good, bones where OK, MRI was good. Condition was a little less (6 minute walking test). One year ago this 6 minute test was 320 meters and now it was just around 240 meters. (the distance I can walk in 6 minutes, with O2 off course). So.. I guess my New York Marathon will take a little while...
23 October 2006
It's been about 6 weeks ago since I updated this page. Several reasons but not worse reasons! I think because of good weather conditions and good health I had such a great time last 5 weeks that I have enjoyed it fully. I even stopped prednison for about 10 days. These where without doubt the best 5 weeks from this year. This makes the rest of the year forgive and forgotten. I have picked up cooking for Judith and did a little more housekeeping (Uh.. giving water to the flowers... hehe)
But as always after good days comes less days. I started prednison again since 3 days now. I still feel ok but a lot of people are sick around me so I need somekind of buffer as protection.
Tomorrow I got my apointment at the hospital. Guess it will be all the same...
Sorry I kept you all waiting for more news and I promise I will write more frequent!
19 August 2006
Bad week behind me... very bad. With all the humidity in the air it's getting even more dificult to breath these days. With this short breath thing I am not able to do all the things I "normaly" do.
Right now it's Ok for me, I can handle it as it is. Eating is good, mentaly is OK and I am still happy. That's good. I am enjoying the Emails and support I get from all the Jack Daniels collectors around the world. This is awesome guys, Thanks big time!
4 August 2006
It's been a pretty long time since I have updated this Health page. It has a few reasons for this. No. 1 my health is getting indeed a little worse since last time. Out of breath all day now and no "good" days since about 4 to 5 weeks. This means walking of 10 meter tops, climbing stairs is to a minimum and everything els is taking a lot of time. Even eating is getting a trouble. So.. my "inspiration" has flown away a little...
No.2 would be some bad family matters. My mom past away last month (4 of July). And last thing that gave me a lot of health problems was the weather.. We had the best summer (so far) since a few decades here with temperature of ovr 35 degrees. And without Airco this is pretty much for someone with breathing problems...
Had another apointment with the doctors and the suggested that I would have to use some more pills to keep my CO2 lower. Besides that we had a "walking" test... I did 230 meters in 6 minutes. When I started my oxygen saturations was 93% (while using 1.5 liter of O2) at the end it was 85%. Not to mention I was not feeling tooo good.
Anyway, this is still good enough, too good for the Urgent transplantation list.
My weight is good. Trust me.. I really do look forward to this operation, I hope it will not take too long...
6 June 2006
Summer is commin' and we finaly got some nice weather here in The Netherlands. This sunny weather gives me a lot of energy and "good vibes". Feel good last couple of weeks. Got "enough" air to be happy. Silly... enough air... On good days I can walk to the pond just across my house, this is a 20 maybe 30 meters walk... Let hope this will stay for a few weeks.
I had my alergy test last week and it seems I am not alergic to most medicine! That is good news cause we thought I could't use the Peneciline group. JiPpy!
Yes... I feel good. My foot-reflex-guy is still doing his job every week. Weight is good and I am gaining bit by bit (almost 58 kilo's!).
