Hemo in Brussels

[Fighter]

Hi Everyone, I'm a 28 year old male from Brussels, Belgium. Up until the latter part of 2004 I lived a completely normal life, blissfully unaware of the insidious glomerulonephritis that was causing the irreversible damage to my kidneys... I used to travel a lot, got through 5 university years, and started work as an IT consultant in a large American firm. When my kidneys failed I had no idea what was going on, even though I was getting some big time symptoms. My GP told me I had pneumonia because he heard something weird in my lungs (actually it was water that was accumulating inside) and prescribed antibiotics. Although these drugs obviously did nothing to help, after a week of treatment he declared me cured! And I believed him!

A few days later (on January 18, 2005, to be precise) my mom called an ambulance when she saw how pale I was (it later took two blood transfusions and two months of EPO therapy to get rid of the anemia) and how swollen my ankles were. When I got to the hospital they did a few tests and quickly concluded that I urgently needed dialysis. I had no idea what that meant and I numbly listened to their descriptions of catheters, machines, artificial kidneys... It felt completely surreal, I couldn't believe it at all at first.

It took a few days for me to understand that my life had changed forever. The first night I cried every tear my body would allow me (and keep in mind that I had 10 litres of extra water inside me!), didn't get a minute of sleep and in the morning I decided to stop feeling sorry for myself and start fighting. My first treatments were rough and I felt terrible afterwards. My blood pressure would drop dramatically after each session and I was unable to walk for an hour or so. But things got better as the days went by and my body eventually got used to it. I learned about the medications I would have to take, the dietary restrictions, and the differences between hemo and PD. I had such a hard time with the catheter in my neck that I opted for hemo to be free from any tube sticking out of my body. So they placed a fistula in my left arm (they needed two attempts, grr...) and after a few weeks they removed the catheter. Never in my life have I felt so liberated!

Anyway, my focus shifted to the possibility of a transplant. My mother, my sister and a friend (we were all of the same bloodtype) offered me a kidney, which blew me over! Organ donation makes for situations where real courage shows. At that point I was really considering accepting my mother's kidney, because the start had been so rough on dialysis. My mom went through all the tests and the docs said we were a very good match. All we needed to do is find a date for the transplant. That's when I started thinking... Am I really going to take a kidney from my mother? Am I going to put her through this? How would our relationship evolve? What happens if the kidney fails quickly? So eventually I called the whole thing off. To this day I'm happy I took that decision, even though I am still on dialysis nearly 21 months later.

So on to plan B: the waiting list. And that meant long-term dialysis. I already knew it was going to be hemo, but the nurses started talking to me about home dialysis and how it could bring back part of my liberty. It was tempting but I was far from thrilled about the part where I had to learn to stick a needle in my own arm. That plus the fact that I didn't want a big dialysis machine in my small appartment and all the fuss it requires. So I opted for a compromise: in Belgium we have the possibility to be dialyzed in a special centre outside of the hospital, where there's only one nurse for six patients, the nurse isn't dressed in white, they serve you meals, you get a TV and internet access (I'm there now!), and all you have to do is prepare your own machine (the nurse handles the needles!).

Anyway, here I am now, a year eight months and sixteen days later (but who's counting, right?). I feel luckier than most people on this site (I've been doing some lurking). Hemo actually treats me pretty well. I still work 80% and I have a decent social life. I eat very  healthy (took up cooking big time!) and do lots of sports, so I guess that helps. But obviously I have less energy than before CKD and the diet sucks (especially the salt and liquids limitation - I feel like I've been roaming the Sahara for a couple of years!). Also, I've had some financial issues and it's tough to travel for more than a few days at a time. So basically I'm still pretty impatient about that transplant, although a few extra weeks/months don't matter that much at this point. I just hope it won't be another three years, but normally the average wait for my blood type (A+) is 2 years in Belgium, so I'm optimistic.

I've become something of a health nut in the process and I always check nephrology/transplantation news sites for brealking news. So I know all about Curis, Kibow Biotech, Bristol myers Squibb and Isotechnika's efforts with their different projects. Something good is bound to come out soon from one of those, I'm sure. I'm also interested in NxStage, although it isn't available in Europe yet. Epoman, I'm happy to see how it's working well for you, in my opinion this is a big step in the right direction! I also want to thank you for making this site, I really admire what you've done, there's a real community building up here...

Anyway, that's it from me, if you read through all the above, congrats! I hope to speak to you all in the near future!

[Sluff]

 

[mallory]

Wow, Fighter, that was a great first post!  You'll be a real asset to the site.  Welcome, keep posting!

[goofynina]

Hellooooo Fighter,  and Welcome to what i consider "the Best Website" regarding this matter.  And i do agree with Mallory, awesome first post.  Sorry for all you've gone through but i admire your courage and your willingness to fight this disease and hopefully you will get your transplant soon.  Look forward to hearing more from you 

[Epoman]

NOW THAT is an introduction. That's what I'm talking about. Welcome, welcome, welcome.  I hope you post often as I look forward to your posts.

- Epoman
Owner/Admin

[Joe Paul]

Welcome Fighter, good to have you aboard.

[Zach]

Glad you could join us!  Looking forward to your posts.     

[angieskidney]

Wow! Welcome!  Sandman and I both know a girl from Belgium! Welcome!

[vandie]

Welcome, you have come to the right place.  Great group of peeps, with an an amazing amount of support to offer.

[Fighter]

Thanks for the welcome guys! Not much time tonight but I'll post some more over the weekend...

[AlasdairUK]

Hi Fighter,

Welcome to the board.

Cheers
Alasdair

[Bajanne]

How did this intro slip past me?  Though a bit late, WELCOME!  WELCOME!  WELCOME!!  It was extremely interesting reading your saga.  Hope to hear much more from you as time goes on.
I really like the idea of the kind of centre that you attend.  I would love one like that.  I like doing certain things for myself, but I balk at putting in my own needles.
What languages do you speak?  I know that Brussels is one of the most polyglot places in the world.
 

[Rerun]

Thought I'd better chime in and welcome you.  When I read your post it brought back "lots" of memories.  The emergency trip to the hospital and the numb feeling listening to all my "options."  GEEZ  I just wanted an antibiotic and sent home!  But, you came through and now you are here on this site to help others.  Great to have you.

 

[anja]

   Welcome, Fighter, to the most informative and caring community on dialysis!  Glad you are here to share your experiences.       Anja

[Fighter]

What languages do you speak?  I know that Brussels is one of the most polyglot places in the world.
 

I speak French, English, Dutch and Spanish. Are you a polyglot yourself?

Thanks everyone for the warm welcome, and yes this IS a great site!

[Bajanne]

I'm not really polyglot, but I speak English, French, Spanish (and Creole).  I remember being in a hotel lobby in Belgium and being totally thrilled that the man at the reception was able to greet and converse in their languages with everyone who came up to him.  I sat there 'sidérée'!  It turns out he spoke about 7 languages fluently!
This weekend there is a Caribbean conference on HIV/AIDS and I have to interpret for the French-speakers.  That is a little scary since my first language is English, and I prefer to go from French to English, instead of English to French, but I am going to 'me débrouiller'!

[DeLana]

 

DeLana