I Hate Dialysis Message Board

Introduction => Introduce Yourself => Topic started by: MightyMike on September 15, 2012, 11:48:11 AM

Title: My Story
Post by: MightyMike on September 15, 2012, 11:48:11 AM
Hello Everyone,
My name is Mike I'm 32 years old and from New Jersey.  My story begins in December of 2003 when I was first diagnosed with IgA Nephropathy and 80% function left almost 3months after I had got married.  In October of 2004 I started In-Center hemodialysis through a perma-cath with less then 5% function left.  2 weeks later on a day after dialysis I ended up in the hospital with a priapism (erection lasting more then 4 hours).  They said the cause was from too much fluid being drained.  I had 2 surgeries over the next 3 days to try and correct it.  The first surgery never healed so I had to have another surgery in April 2005 to fix that.  Too this date I still have Erectile Dysfunction.  In September 2005 I received a living related donor transplant from my mother.  In March of 2008 I ended up in the hospital with rejection and had to be given a series of Thymoglobulin to pretty much kill my immune system.  May of 2008 me and my wife seperated.  June of 2008 back in the hospital with a Deep Vein Thrombosis(blood clot) in my pelvis.  August of 2008 I met my eventual fiance.  In March of 2009 I ended up back in the hospital for rejection again they had to put in a perma-cath but the nurse fed me before the procedure so all they could use was lidocain no sedation and shoved it in.  This time they tried plasmapharesis and IVIG to fix it but my body couldn't tolerate the IVIG.  I was diagnosed with CKD and that the IgA Nephropathy had returned.  July of 2009 my divorce was finalized. August of 2009 I had a fistula done in my upper left arm.  November 2009 I started In-center Hemo.  February of 2010 I got engaged.  December 2010 I started Home hemo.  August of 2011 was found to have a herniated disc in my lower back cause chronic pain in my back and legs.  Due to stress on my fiance because of her job and having to come home and help me with dialysis I wen back to in-center hemo in January 2012 to this date.  I have high donor antibody making it tough to get a match for a transplant.  August of 2012 after 4 years together my fiance had broke it off.  I currently have High bp, chronic pain, ED, anxiety, depression, anemia, edema.  I'm glad to have found a community with similar issues as I, knowing I'm not the only one with this issues.  Thank you for reading I look forward to reading all your stories.
Title: Re: My Story
Post by: chinksnicky on September 15, 2012, 12:17:33 PM
Welcome Mike,you sure make my situation seem not so bad,I thought starting hemo at 52 was young.at our center we also have a guy about your age.I started not long after you in April 2010.I'm reluctantly considering transplant but really I hear more bad than good.Good Luck       Nick
Title: Re: My Story
Post by: cassandra on September 15, 2012, 03:39:46 PM

    :welcomesign;  to the site MightyMike

take care Cas
Title: Re: My Story
Post by: MommyChick on September 15, 2012, 05:25:07 PM
Hello & Welcome MightyMike :waving;
Title: Re: My Story
Post by: Leanne on September 15, 2012, 05:48:49 PM
Hi Mike and welcome.  Dialysis is definitely stressful to our family and to us.  Glad to meet you.
Title: Re: My Story
Post by: Jill Marie Evans on September 16, 2012, 11:34:09 AM
Wow, what a story! Makes you wonder, doesn't it? I don't look so good "on paper" myself!  It makes me wonder if I was a Nazi or something in my last life..LOL...geez...
Title: Re: My Story
Post by: Poppylicious on September 17, 2012, 01:16:28 PM
 :welcomesign; Mike!
Title: Re: My Story
Post by: MightyMike on September 19, 2012, 04:43:24 PM
Thank you everyone for your welcomes.  I hope I can contribute some of my experiences and knowledge to those who need it.
Title: Re: My Story
Post by: babycake on September 23, 2012, 09:44:17 AM
we have a tech.. that was a former dialyis patient
he was 6yrs old when he started dialyis
he was on dialyis for 22yrs and had 5 transplants done

and when he told me that
i said and you wanted to be a tech
i guess it was showing
what he wanted
iin order to
help others
Title: Re: My Story
Post by: Jean on September 24, 2012, 12:07:18 AM
Wow Mike, sounds like you have already been thru the wringer. Hope things get better for you  soon and hope you enjoy it here. This a great site and you, I am certain, will be a welcome addition to the crew.   :welcomesign; :welcomesign;
Title: Re: My Story
Post by: JennyGirl595 on September 24, 2012, 06:47:47 AM
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny
Title: Re: My Story
Post by: Lillupie on September 24, 2012, 07:37:52 AM
Welcome Mike,
 You have said a few things in my posts. I am so sorry you have had to go through so much and your divorce is hard. Do you have any siblings or nearby family?

Lisa
Title: Re: My Story
Post by: Lillupie on September 24, 2012, 07:38:46 AM
we have a tech.. that was a former dialyis patient
he was 6yrs old when he started dialyis
he was on dialyis for 22yrs and had 5 transplants done

and when he told me that
i said and you wanted to be a tech
i guess it was showing
what he wanted
iin order to
help others

5 transplants? Wow. And he is ok with being  atech?

Lisa
Title: Re: My Story
Post by: Lillupie on September 24, 2012, 07:39:36 AM
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny

Can I ask, what do you have so many antibodies?? I have a lot too through pregnancy, and I had 4 blood transfusions.

Lisa
Title: Re: My Story
Post by: MightyMike on September 24, 2012, 08:23:10 AM
I developed the antibodies through my transplant.  Tested negative until about 2 1/2 years in.  Just another thing that caused it to fail.
Title: Re: My Story
Post by: babycake on September 24, 2012, 08:34:12 PM
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny

Can I ask, what do you have so many antibodies?? I have a lot too through pregnancy, and I had 4 blood transfusions.

Lisa
we have a tech.. that was a former dialyis patient
he was 6yrs old when he started dialyis
he was on dialyis for 22yrs and had 5 transplants done

and when he told me that
i said and you wanted to be a tech
i guess it was showing
what he wanted
iin order to
help others

5 transplants? Wow. And he is ok with being  atech?

Lisa

yea he seem to be fine.
it doesnt bother him
 there are several other davita centers in town
so he comes to where im at every so often
Title: Re: My Story
Post by: boswife on September 24, 2012, 08:55:27 PM
wow and welcome ;)   its great you found your way here and looks like you'll be right at home.. you have lots of stuff to share and help.  Hope you get lots of help too  :flower;
Title: Re: My Story
Post by: lmunchkin on October 01, 2012, 06:49:51 PM
Hello & Welcome Mike!  Looks like you have a story to share!

God Bless,
lmunchkin :kickstart;
Title: Re: My Story
Post by: babycake on November 06, 2012, 07:17:34 AM
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny

Can I ask, what do you have so many antibodies?? I have a lot too through pregnancy, and I had 4 blood transfusions.

Lisa



LISA....

you stated you had 4 blood transfusions

i had if i recall right i had about 5
my blood level was so low.. it went down to 5
they were going to do a transversion on a sat
and i was out of it on a wed when a friend of mine came over
and she said Bonnie i dont think
your going to make it untill sat
that nite on wed.. i was in the hospitol and they did the cross match and the
transfusion that following morning
my blood level when last check was 10.9 which is very good