I'm Marvin

[Marvin]

Hi!  My name is Marvin, and I live in North Carolina.  I am 51 years old.  I've been on hemodialysis twice -- once from March of 1995 until I got my transplant in July of 2000.  Then, my transplanted kidney (a gift from my wife) contracted the same disease I had in my original kidneys (IGA nephropathy), and it gave out in October of 2003.  I've been back on hemo since October 2003.  So, all total, I'm a 12 1/2 year dialysis patient.

When I got sick in 1995, I just thought I had a bad case of the flu for over a month.  I just couldn't shake it and got sicker and sicker.  I came in from work one day and went straight to bed.  A couple of hours later, I thought I was having a heart attack (even though I was only 39 at the time) because of the intense pressure in my chest.  My wife rushed me to the hospital where we were told my heart was fine -- perfect, even -- but the "pressure" I was feeling was fluid because my kidneys had completely shut down.  Four days later, I had a perm cath in my chest and had my first dialysis treatment.

My wife was tested to be a donor the night of my first treatment, but we weren't a good match (1 out of 6 antigen).  We tried PD twice -- my first Tenckhoff got kinked and had to be straightened -- oh, my, that was awful.  We completed the training anyway and got a new Tenckhoff in the abdomen.  A week later, I had a full-blown case of peritonitis -- and that was even worse than the kinked catheter!  That was the end of my PD effort!

Over the years, I have had 14 perm caths, four graphs, the two Tenckhoffs, and two fistulas.  I even had an emergency cath in the groin once (we won't even talk about how awful that was).  I had one transplant that lasted for a little over three years (that was HEAVEN).  When one of my grafts got infected and I was about to lose my arm, my surgeon "stole" a vein out of my thigh and saved the arm (but the graph was lost).  The fistua I have now is a miracle -- my surgeon "stole" an artery out of the back my arm, flipped it over and upside down, and moved it to the front side.  Then, he took a vein out of my thigh (the opposite one from the graph failure surgery) and literally pieced together a fistula.  We had no other place in my body to go to make a fistula.  I've had this one for almost two years, and you could stick it with the needles thrown from across the room.   It's beautiful, and I'm lucky to have the surgeon I have.  I tease him and tell him that he has made me a modern-day Frankenstein because he's pieced me back together and from here, and there, and there.

My wife tried for five years to talk my nephrologist into letting her be my donor (no other family matches -- one brother with a transplant already).  Because we were such a low match, the doctor didn't want her to give up a kidney that I would likely reject.  After pestering him for five years, he finally gave in (and, the anti-rejection drugs had come so far, too).  My wife gave up her left kidney (open surgery -- 9 inch scar) the day before our 14th wedding anniversary, and my body accepted it on the operating table!!!!!   I went back to work.  We were in Heaven.  Two and a half years later, my labs started getting bad.  The creatnine was climbing up, up, up.  A biopsy of the transplanted kidney showed it, too, had IGA nephropathy.  It lasted another six months, then gave out.  I knew I would have to go back on dialysis.

I have been an in-center hemodialysis patient the whole time -- until this past summer.  My wife and I trained to do home hemodialysis, and it has been terrific!     I love being in charge of my treatments, my disease, my body, and my life again.  I'm using the NxStage system, and it's a piece of cake!

Unlike Epoman, I don't hate dialysis -- and, to date, I've had a little over 1,500 treatments.  At first, I didn't even mind going to the clinic, but then so many people around me died, and I had a hard time dealing with it.  Eventually, I stopped getting close to the other patients.  The nurses were good to me, even when my bp bottomed out and they had to flip me on my head.  But, don't get me wrong -- I didn't enjoy the treatments (and I still don't, even though they're now easier to withstand), but I did enjoy the fact that dialysis treatments gave me a few more days to live.  When I started back on dialysis in October 2003, the in-clinic setting had changed a lot.  The nurses were being pushed to be more "efficient," and that meant less time to make sure everything was right.  The whole atmosphere had changed while I was "out" with my transplant.  The first time around, it was a "family" -like setting with lots of talk between patients and nurses/techs.  But, the second time around, it was more "sterile" (and I'm not talking about medically sterile).  There was little talk.  The nurses were there to do their job, and they had to do it quickly (money is the bottom line).

My wife and I had been trying to find a home hemo training facility for six months.  When it finally came to my area of North Carolina, I was the second patient trained.  We were supposed to train for three weeks, but we got out of there in two weeks and three days.  My wife is a wonderful "nurse" (even though she really works as a teacher), and we both knew a lot about dialysis, kidneys, labs, etc. because we've paid attention, asked lots of questions, and done a lot of research over the years.  Like Epoman, I LOVE NXSTAGE !!    I'm currently waiting for a second transplant (a cadaver kidney), and, until it comes, I'll continue with the home hemo.

Life on dialysis is different -- very, very different -- but it's still good.

[boxman55]

Glad your here Marvin, Welcome...Boxman

[angela515]

 

Great story.

[lola]

 

[angellady07]

Welcome Marvin.

[Rerun]

Marvin how can you say you don't "hate dialysis"?  If you don't hate it then you must like it.  Epoman too went on NxStage and loved NxStage but still hated dialysis.  There is a lot to hate about dialysis.  We know it keeps us alive for more surgeries, but we still hate it.

Welcome to IHD where you can speak your mind and get relief and support.

     

[Marvin]

Rerun,
I don't hate dialysis but I don't like it, either.  I see it as a necessary evil.  I don't know about you, but my life is too short to spend ANY of my time hating anything or any person.  Instead of viewing dialysis as a thing to hate, I look for the positive side of it (as I do with everything else in my life).  The positive side of dialysis is...simply...it keeps me alive.  I don't like it, but I have to do it.  I would rather spend my time and my energy trying to find ways to make it easier -- or easier to bear.  And, if I had to have one organ fail me, I think I'm lucky it was the kidneys.  I don't think my body would have lasted 12 1/2 years waiting for a heart, a liver, or a lung transplant.  Come to think of it, I'm pretty lucky all the way around.  Do you know that in the 1960's few hospitals had dialysis machines, and the ones that did have them didn't have many.  So, the hospitals formed in-house committees that reveiwed patients (along with their economic status, their age, their potential to "contribute to society," etc.).  If I had needed dialysis back then, I probably wouldn't have been selected.  So I am lucky to have been born when I was and to have needed dialysis when I did.  I am lucky that I found the wife I have because she has been beside me every step of the way.  There are a MILLION other things in my life that make me lucky.

This is the "hand" I drew in this life.  I'm playing it out -- without hate, without regret, without pity -- the best I can.  It's not the best hand, but it's definitely not the worst either.  I know of many, many, many more people who are not as lucky as I am. 

Marvin

[okarol]

  Hi Marvin,
Good introduction, Epoman liked details!
Some people tolerate dialysis more easily than others. I hope Nxstage continues to work well for you.
Luckily there's no requirement to hate dialysis in order to join IHD - you're welcome here.
Sounds like you've got a great wife - good luck to both of you!


okarol/moderator

[donnia]

Welcome Marvin   

I like your attitude.  It is kinda how I feel..... but with every day I dislike it more and more.  Good for you for having such a positive attitude.

[Marvin]

It's Marvin, again!  Something about Rerun's message just hit me.   "There are a lot of things about dialysis to hate.  We know it keeps us alive for more surgeries..." I don't see it like that, Rerun.  Dialysis keeps ME alive for more birthdays, more days with my wife, more hugs, more laughs, more baseball games to watch, more ice cream to eat (with PhosLo before, during, and after ), more nieces and nephews (29 and counting), more triumphs over the odds, more good times, more friends to make, more memories to cherish.  If the doctors told me I could live to be 105 (and be in at least one-tenth as good a health as I am now) as long as I had six dialysis treatments a week, I wouldn't bat an eye when I said, "Keep me going for another 54 years!"  The surgeries aren't fun, and I've had my share, but they are not the reason I'm still here and still fighting.



EDITED: Fixed bold prompt - okarol/moderator

[Mimi]

  Welcome Marvin.  You have a very good attitude.  And  a good attitude will take you through.
Tell us anyhing, we are here to listen.

Love, Mimi

[Zach]

It's real good to have you here Marvin.
I, too, like your attitude.
 

[Bajanne]

Welcome to our community!  We are glad you decided to join us.  It is ironic that I should see this thread this particular time.  For the first time, I felt really depressed as I waited to take my turn on the machine.  I am normally upbeat, but today, I felt like a prisoner.  Thankfully, my faith in Jesus took over and I was able to be thankfull for so much that I have. 
As Epoman said, one of his main reasons for the name of this site is the shock value.  It sticks in people's minds.
Keep posting and let us know how you are doing.


Bajanne, Moderator

[KR Cincy]

Great approach to all this Marvin...that's the one I'm trying to adapt. I'm also home hemo, but am still relatively new to it all (5 months) but your story provides great insight. Thanks for sharing, and welcome to IHD!

[Joe Paul]

Welcome Marvin, good to have you aboard.

[bolta72]

I agree with you Marvin, I just accept it as part of my life now and live day to day the best I can. Gee you have been through a lot, hope things get better and you draw a couple of aces in the hand of life.

[Hawkeye]

Hello and 

[KT0930]

Marvin, first of all, welcome! Second, I have had so many people I handle the reality of my life so well, and they don't know if they could do the same...I never had the words to express it, but you got it

If I had needed dialysis back then, I probably wouldn't have been selected. So I am lucky to have been born when I was and to have needed dialysis when I did.  There are a MILLION other things in my life that make me lucky.

This is the "hand" I drew in this life. I'm playing it out -- without hate, without regret, without pity -- the best I can. It's not the best hand, but it's definitely not the worst either.
Marvin

Thanks for the upbeat intro, and welcome to our family!

[paddbear0000]

 

[goofynina]

Hi Marvin,  Welcome to ihatedialysis.com.  Awesome introduction my friend, Epoman loved a good introduction    I love your positive attitude and i look forward to hearing more from you soon.   

Goofynina/Admin.

[del]

Hi Marvin

I am a teacher/dialysis nurse too!!  Hubby has been on dialysis for 10 years now. First he did PD then in center for 6 years. For a year now we have been doing home hemo nocturnal and it is fantastic!!  Hubby is working again!!  The more you can do for yourself the better the more you are in control the better you feel.  I am a match for hubby too but only 1 out of 6 and he doesn't want to take the kidney because he is scared something will happen to me.  He feels that he is doing so well without a transplant why rock the boat!!

Welcome to the site . Good to have you here!!

[kellyt]

   It's great to meet you!

[kitkatz]

Welcome to the site! I hope you like it here!



kitkatz,moderator

[brenda]

 

[MyRenalRomance]

 Hi Marvin !
I LOVE reading your posts!  I haven't been through nearly half of what you have been through, but I try to keep a positive attitude, as well.  We are on the same wave length!