I've been waiting for this my entire life...and now you're really coming!

[KidneySinger]

So why have I been waiting my whole life for dialysis.....?  Here I am, 50 years old this year and my most vivid memories of my childhood are pokes - biopsy's - and doctors telling my parents I would need dialysis any time (that wasn't a good thing to hear in the 60's and 70's as it was not widely available).  They had medical boards making the decision back then for the selected few.
I was born with Alport Syndrome with my second generation Uncles all dying in their 20's and my first generation Uncles all with transplants...from their 2 sisters - perfect matches.  One still alive and well at 70 and the other died from the rejection meds getting cancer very young.
So year after year after year goes by....I can't even begin to tell you how grateful I am that I made it this far with just the common blood and protein in the urine since birth  and the occasional trip to a doctor for the simple flu and a urine test landing me in the hospital from the readings (have learned just go to doctors that know you history)..... so much to my surprise - 6 months ago my 3 year younger brother started dialysis and I kind of got that wake up call.... I'm coming said the rotten kidney 

My creatinine has doubled to 3.0 in the last 6 months (still have a little time) and everything else has gone haywire in the kidney department - even the every second of the day ammonia taste and smell started a couple of months ago and with Alports - I have started to lose some hearing just in these last few months.
So here he comes after all these years!
All I can say is THANK YOU for waiting so long - I've had such a fulfilling life in radio and opened 2 orphanages in South Africa.  I rescue abandoned babies and children and give them hope and adoption and I couldn't have asked for a better life....of course, it will continue.  Though my brother is completely disabled and miserable - I'm going to focus on the positives!....and continue to live life the best I can...of course, my trips to Africa will need to be adjusted - not to keen on their health facilities.
As for my name - Kidney Singer - I started recording some songs  on You Tube before the hearing goes.... please check them out at http://www.youtube.com/watch?v=PVZES_B3x6o
And if you visit, please click the link to my web site for my orphanage The Promise House....
Been reading a lot of your posts and I'm happy to join you!  Calvin Grabau

[Poppylicious]

  Calvin!

What a fabulous life you've lived despite (or perhaps because of) Alport Syndrome.  I checked out YouTube ... loved your videos.

 

[boswife]

i feel honored to have you join us    You have been living life fully and your an inspiration.  So glad you joined us.  I LOVE your youtube singing.. Love it!   

[paris]

Welcome!   I love your attitude and your spirit!  Living life, giving to others, appreciating the time you have been given -- well, I think they add up to the making of a wonderful human being.  You are an inspiration, both with your health and with your concern for others.  You are a great addition to this IHD family.  We look forward to reading more of your posts.  Welcome to IHD   



paris, Moderator

[Rerun]

Hi Kidney Singer and welcome to IHD.  I love that you appreciate God holding off dialysis.  I'll be 50 this year also.  I started dialysis when I was 24 and had no idea I had kidney problems.  It seems the nightmare has been following you all your life and now you can say... "I'm 50 years old so bring it on!"   

I hope you post here often.

Rerun, Moderator      

[peleroja]

Welcome to the group, Calvin.  You really lucked out knowing early on that you would need dialysis and having it wait so long.  Glad you found us!

[Des]

  all the way from South Africa

[kristina]

Hallo, Calvin,

Your introduction is a real inspiration!

Like yourself, I have been very lucky to escape Dialysis for many years,
this February it was 40 years since my first kidney-failure, when I was told
I had only a few months until Dialysis, and I was put on the transplant list straight away.

40 Years later my kidneys are still working, but it looks as if my luck might run out,
because my kidney function has deteriorated to 10-12%.
But I am still hoping because my 10-12% kidney function has remained “stable”
for over 2 years now and I try ever so hard to change my luck once again for the better.

I suffer from chron. proliferative glomerulonephritis with Lupus/MCTD
and I find it fascinating that your kidneys have functioned so long despite the Alport Syndrome.

You obviously have looked after your kidneys very well through all these years.

Have you followed a special diet?
I followed a strict vegetarian diet with no alcohol and no pain-killers, etc.

Like yourself I am very grateful that my kidneys gave me so much time Dialysis-free.

I have listened to your beautiful singing
and I do hope you keep up your singing and good spirits,
your hearing and your kidney function
for a very long time to come!

Best wishes and good luck from Kristina.

[lola]

welcome , my husband and his 3 brothers also have Alports....

[KidneySinger]

Thank you all for you incredible welcomes!

Kristian:  I am embarrassed to say that I never followed any type of diet.  In my young years, I was always the skinny one in class and that lasted till about 39.  I was always told to follow a renal diet, but I just could never keep up with it.  They kept telling me I was so close to dialysis that I figured I'll just wait and do it when I have to...then I woke up and I was 50!
I attribute my longevity mostly to control of blood pressure.  I started on beta blockers when I was a young teenager as I was in school and the nurse took my bp and thought her unit was broken because it was so high.  She got another one and it was the same and they called and ambulance.  Have been on bp medications including beta blockers and ace inhibitors for as long as I can remember.  I and my doctors can only assume that it was the bp control that has taken me so far.  I really didn't start gaining weight until my 40's but I never changed my eating habits.  At 50, I have now started changing my eating habits and started exercising as well.  I was starting to get a little plumpy and so far I have lost 35 pounds...another 35 pounds will put me at about 199lbs and I am 6' tall.  When all of this stuff happened to my younger brother, it really hit me that it was coming and my doctor woke me up when he said I can change my habits right now and lose some weight and when it does hit me, I will be better prepared.  My brother was not prepared and he is paying the price for it now.  He is 300lbs plus and not doing well on dialysis.  He continues to refuse to follow the proper diet so he suffers with this.  I am determined to make mine a different experience!
It's amazing to me that you have gone 2 years at that percentage....I'm gonna go for that too!
The only thing really bothering me right now is the hearing issues.  After perfect hearing for so long - it is quite annoying.  I can still hear but it's not the same and it is part of Alports - but again, this usually happens when you are much younger so I am very grateful.  I honestly don't feel bad for myself, I feel bad for those who were not as lucky as me as they are the ones who have truly suffered...

[kristina]

Thanks Calvin,
 
it seems to be very important to keep the blood pressure under control.
I also suffer from high blood pressure
and I have a blood pressure machine at home
and I regularly check my blood pressure.

I have been told many years ago that my best chances
for survival with my poor kidney function are
if I keep my weight at a healthy level and I have always kept it like that.

So perhaps a healthy weight plays a role as well.

I do hope you have many years to come with your kidneys
and I do hope you can still keep your hearing and beautiful singing for a long time as well.

Good luck and best wishes from Kristina.

[HouseOfDialysis]

Glad to hear about Alport Syndrome patients living to 70. That gives me to hope to live long enough see my son grow up!

Yours is a good story! Glad to have you around!