Belated introduction

[iolaire]

Hello, I ended up making a trip report as my first post, this is my belated introduction, with narrative ripped off from that post in italics!

In December of 2013 I started dialysis (hemodialysis) at 39 years old.  Dialysis is three days a week for three and half hour commitment hooked up to a machine that filters my blood to replace kidney function.  Amazingly, you can live with zero kidney function.  My loss of kidney function was due to SLE (Lupus) damage in the early 1990s.  At that time, I knew that my kidneys would get worse and I would have problems, but at 18, I didn't really have a clue what it would mean.  Fast forward to 2007, when I was in the hospital for high blood pressure and was told it was kidney related.  So for the past six years, I've been seeing a nephrologist tracking my kidney decline.  It was helpful having a trained kidney doctor guiding me.  He had me get a fistula on my arm, i.e. connect an vein to an artery on the arm to make an enlarged vein that would allow a huge amount of blood to flow back into the arm.  He also pushed for me to get listed on the kidney transplant list.  Because of that, I received my call on the first potential donor three weeks before I started dialysis.

I'm on in center hemodialysis.  There are other methods of dialysis, and many people manage dialysis at home.  I hope to be the recipient of a kidney transplant at some point relatively soon I'm no planning on moving from the center.  That means if I travel I will need to get in center hemodialysis.

I feel lucky that at this point my primarily concern is my kidney and that my lupus has been in remission for 20+ years now.  It makes dealing with dialysis a manageable change.  I'm able to keep working and keep traveling.  I'm heading to dialysis from work on M, W, and F at 2:30 for 3:45 hookup, taking the metro and a bus to get there.  Then my wife picks me up after work.  We are a single car family by choice, living close to DC but not on the metro.  Our car is wife's, so she is the primary driver at home and when we travel.  We are childless by choice and have been married since 2000.

You can expect to see various trip reports in the Traveling Tips and Stories section.  Currently I have two posts, one on my first out of may center dialysis on a Singapore trip and another asking for dialysis info in South Africa.

As far as internet message boards I also hang out on two traveling sites, http://milepoint.com and http://flyertalk.com .

My profile photo is from our honeymoon, so I look similar but have less hair now, but from the photo you can see how it started going missing...

One website that I would like to find: a site that shows self pay dialysis cost by country.

Also I have atrocious spelling, don’t be offended if I make comments with terrible spelling.  Usually I spell check things in outlook but that doesn’t mean the right words are used.  And when I post from the iPad my spelling is worse.

[Darthvadar]

Hello....

You're very  to IHD....

Fantastic first post.... I can see you'll be a very interesting contributor... Visit us and post often... Get to know us....

Looking forward to reading more of your 'adventures'....

Darth, Moderator...

[kristina]

Hello, iolaire,

and welcome to IHD... I also suffer from SLE/MCTD and my pre-dialysis ESRF is due to regular SLE/MCTD flare-ups which were upsetting my kidneys... over many years...
...starting when I was 17 years old when was brought by ambulance into hospital with ESRF and uraemia  whilst I was in a coma...
... fortunately the doctors in the hospital (which was the nearest and best hospital in town) did NOT put me on dialysis and they preferred instead to give me time ...
... and they waited... and observed me...whilst I was in the coma...
.... and luckily my "two little fighters" picked up functioning again ... slowly at first... and I was discharged from hospital when my kidneys functioned again 5 % .

... Fast forward, my "two little fighters" worked well and served me well until  August 2006 when I was told in A&E that I would be on dialysis within the next 6 months...

... I refused to acknowledge this grim truth and with the help of my husband I frantically searched on the Internet for the best vegetarian  kidney friendly diets...
....with the latest and best results...

.... and luckily I am still  pre-dialysis and hopefully going strong ... for a little longer....

P.S. Mind you, I have been a strict vegetarian since 1971, which was the year when "my two little fighters" first failed me...

I firmly believe that my vegetarian kidney friendly diet has helped "my two little fighters" to "stay out of trouble" during all these years.... and that now they are only exhausted...

...I believe the most important point was that all my vegetarian diet has been and still is very easily digestible to my body and my stomach....

...and I avoid any heavy digestible food like garlic, onion etc. in fact I avoid everything that could upset my delicate body... and my delicate "two little fighters"...

I don't know for how long they continue to function, but I shall give it my very best and shall "mollycoddle" my "two little fighters" for as long as is possible...

[iolaire]

kristina, thanks for the info, congratulations on staying dialysis free.  I was not on a limited diet. I do wonder at times if I could have done something to stay off dialysis.  I will say since dialysis started I have more energy, I still nap when I can, i.e. on the weekends, but I'm able to get up earlier and feel more motivated.  I'm very happy to be in a heathy place to start dialysis.  I'm sure if I was sick with other issues it would be much harder,