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contemplatingthought
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« on: November 24, 2011, 12:10:53 AM »

Hello all. My name is Steve. I am not a dialysis patient. My beloved fiance, however, is. I am looking for answers and, possibly, some hints or ideas on how to handle issues.

Allow me to say that I am new to dialysis. I met my fiance in July 2011(don't judge). She told me before our first meeting that she is on dialysis, as well as a lot of the challenges associated with it. However, I'm still learning.

When M told me of her condition, I immediately asked her about becoming a live donor. I have investigated/researched it, and am currently in the process of becoming a donor. I'm not a match for M, however, we are pursuing a couple organ-swap programs.

The question that's on my mind concerns sex drive for a dialysis patient, but I'll address that in a different post.

Mainly, I'm here to learn as much as I possibly can about M's condition and treatment.

I hope that I haven't offended anyone by becoming a member.
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Traveller1947
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« Reply #1 on: November 24, 2011, 04:14:56 AM »

Hi Steve, I'm fairly new here too, but I can tell you with certainty that you're welcome here and so is M, if she should decide to join us.  There's so much to learn about dialysis, especially at the beginning, when you're still reeling from the realities of it and are least able to absorb the information.  The good people here can provide information AND support and a chuckle here and there as well.  Good luck to both of you on your journey.
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billybags
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« Reply #2 on: November 24, 2011, 04:21:49 AM »

welcome to the site Steve, so glad you have joined us. There are loads of very informative people on here, ask any question, there is always some one who can give you an answer. I am sorry that your fiance is going down this road but it is not always gloom and doom. Try to find out as much as you can about the disease, get your fiance to join us too.   :welcomesign;
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monrein
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Might as well smile

« Reply #3 on: November 24, 2011, 04:47:50 AM »

 :welcomesign;  to IHD.  I'm so sorry that your fiancée, and therefore you, are facing this dialysis business but it is really lovely that you are so supportive and caring.  We talk about pretty much everything here, including sex, and you will find threads about this exact topic if you do a bit of a site search.  This is all a very individual thing for people, we're all affected in different ways.  I hope M will join also since this really is a great place for information, support and understanding.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Rerun
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Going through life tied to a chair!

« Reply #4 on: November 24, 2011, 05:16:40 AM »

Hi Steve, and welcome to IHD.  I'm so glad you found us.  You are looking for answers in the right place.

Rerun, Moderator         :welcomesign;
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MooseMom
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« Reply #5 on: November 24, 2011, 09:22:50 AM »

Steve, we don't judge anyone here, and neither are we easily offended, particularly when it comes to discussions about any aspect of kidney disease.  This is a safe place where people have posted their deepest, darkest thoughts because they knew they would be heard.

Thank you for joining, and I hope that you will find a lot of important information here.  I think you will.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Katonsdad
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« Reply #6 on: November 24, 2011, 09:48:08 AM »

Welcome Steve... My wife and I have been married for 14 yrs and I started Dialysis shortly after we met for the first time.
She is a wonderful and supportive person and is also on this website.  It is full of information including you
question you addressed in your first post.  I was transplanted 12 yrs ago and then last month lost my
transplanted kidney so I am back on dialysis. As you are looking at helping her get transplanted already says a lot about you and she is a lucky woman to have someone who cares so much.  My wife wants to be tested but I will
not allow it as we have a son and if he ever needs it I want him to have it.  Well keep watching the posts and a lot of your questions will be answeed.
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Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



Soft kitty, warm kitty,
 little ball of fur,
happy kitty,sleepy kitty,
 purr purr purr ::
Sheldon and Penny on The Big Bng Theory
Poppylicious
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WWW
« Reply #7 on: November 24, 2011, 02:19:02 PM »

 :welcomesign; Steve!  I'm not a dialysis patient either, but my Blokey was (he had a transplant recently).  This site has been amazing in supporting and advising me.

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
willowtreewren
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My two beautifull granddaughters

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« Reply #8 on: November 24, 2011, 06:53:02 PM »

Welcome, Steve!

 :welcomesign;

As Mossemom said, we certainly aren't easily offended because this IS the place to come for support and information. Like Poppy, it is my husband who was (also recently transplanted) on dialysis. Unlike Poppy, I was not the one who gave him the kidney (couldn't help it Poppy, because you are just so awesome!).

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Cordelia
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« Reply #9 on: November 24, 2011, 06:57:29 PM »

Hi Steve, Welcome to the site!      :welcomesign;    Like others have said, we aren't easily offended, no worries!      :grouphug;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
CebuShan
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« Reply #10 on: November 24, 2011, 08:18:01 PM »

    :welcomesign;   Steve! We don't judge. If it makes you feel better, My husband asked me to marry him on our FIRST date! I turned him down but he kept asking and two weeks later, I said yes. On Feb 2 next year, we will be married 27 years. As for offended, never by D patients or care givers.
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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
contemplatingthought
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« Reply #11 on: November 24, 2011, 09:29:03 PM »

WOW! I am overwhelmed by the number of responses in just a day! Thank you to all of you for your comments, reassurance, and enlightenment. I will attempt to respond specifically to each of you, however, I may miss some. For this, I apologize. My...strike that...OUR journey will be easier for being here...of that I'm certain!
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contemplatingthought
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« Reply #12 on: November 24, 2011, 09:31:14 PM »

Hi Steve, I'm fairly new here too, but I can tell you with certainty that you're welcome here and so is M, if she should decide to join us.  There's so much to learn about dialysis, especially at the beginning, when you're still reeling from the realities of it and are least able to absorb the information.  The good people here can provide information AND support and a chuckle here and there as well.  Good luck to both of you on your journey.

Thank you so much for making me feel so welcome. I look forward to learning much more about this horrible disease, and to giving one of my kidneys to someone who needs it. Hopefully, that will include a new kidney for M.

Thank you again!
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contemplatingthought
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« Reply #13 on: November 24, 2011, 09:42:21 PM »

:welcomesign;  to IHD.  I'm so sorry that your fiancée, and therefore you, are facing this dialysis business but it is really lovely that you are so supportive and caring.  We talk about pretty much everything here, including sex, and you will find threads about this exact topic if you do a bit of a site search.  This is all a very individual thing for people, we're all affected in different ways.  I hope M will join also since this really is a great place for information, support and understanding.

Thank you for the warm welcome. M has been doing this for a really long time, and she's good at it. She knows exactly the foods she can eat, how much she can eat, how much she can drink...so many things...way more than I can remember(although I'm trying...and have become a pretty good renal-friendly cook).

I told M's dad once, "I'm not in love with 'healthy M,' I'm in love with M." I meant that from the bottom of my heart. No matter what happens, good, bad, ugly, indifferent, I'll be by her side. Of course, my prayer is that we will locate a donor for her.

As for the sex issue, I have searched a bit on here, and found mostly replies from male dialysis patients. While these are helpful, I'd really like to hear from a male 'partner' of a female dialysis patient. I'm intrigued to hear how others in my situation deal with it(lack of female sex drive).

Thanks again for such a warm welcome.
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RichardMEL
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« Reply #14 on: November 24, 2011, 09:45:00 PM »

G'day Steve and welcome to IHD.

I can't see how you could offend anyone by joining up - indeed it is to be admired in many ways - you want to do all you can to study as much as you can, learn and do what you can to support your fiancee. I think that is absolutely wonderful of you and to be admired, and underlines how much M means to you. I also think it is a great sign of character that you learned of her situation and didn't run in the other direction!

So welcome to IHD and hopefully your joint journey will be wonderful. Doing a paired exchange is a great option, and maybe even an "ABO Incompatable" donation could also be an option. Being there for your loved one is just as important as any donation so it is good they have you there for them, and you are here trying to learn as much as you can.

It's good to have you with us.

RichardMEL, Moderator
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
contemplatingthought
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« Reply #15 on: November 24, 2011, 09:47:01 PM »

Welcome Steve... My wife and I have been married for 14 yrs and I started Dialysis shortly after we met for the first time.
She is a wonderful and supportive person and is also on this website.  It is full of information including you
question you addressed in your first post.  I was transplanted 12 yrs ago and then last month lost my
transplanted kidney so I am back on dialysis. As you are looking at helping her get transplanted already says a lot about you and she is a lucky woman to have someone who cares so much.  My wife wants to be tested but I will
not allow it as we have a son and if he ever needs it I want him to have it.  Well keep watching the posts and a lot of your questions will be answeed.

Thank you for sharing the short version of your story. I understand completely wanting your wife to keep her kidneys, in case your son needs one. You're a special person, in your own way, for potentially giving up a kidney that would give you your life back, just because of the possibility that someone else may need it.

Keep the faith, my friend. Your new kidney is coming!
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contemplatingthought
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« Reply #16 on: November 24, 2011, 10:10:14 PM »

    :welcomesign;   Steve! We don't judge. If it makes you feel better, My husband asked me to marry him on our FIRST date! I turned him down but he kept asking and two weeks later, I said yes. On Feb 2 next year, we will be married 27 years. As for offended, never by D patients or care givers.

Well, well...your story sounds familiar. M and I had a 16 hour first date. Near the end of that date, I told her that I was falling in love with her. She told me the same. A week later, I asked her to marry me. To my delight, she said yes. We are to be married on July 1.

Thank you for sharing, and for the warm welcome.
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Ang
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« Reply #17 on: November 24, 2011, 11:44:19 PM »

 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
Wenchie58
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« Reply #18 on: November 25, 2011, 03:39:24 PM »

 :welcomesign;
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Live your life in such a way that when your feet hit the floor in the morning Satan shudders and says "Oh s**t, she's awake!"

Right nephrectomy 1963
Diagnosed ESRD 2007
"Listed" summer 2007
Transplant 3/6 match  10/24/08
Cordelia
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« Reply #19 on: November 25, 2011, 03:46:50 PM »

    :welcomesign;   Steve! We don't judge. If it makes you feel better, My husband asked me to marry him on our FIRST date! I turned him down but he kept asking and two weeks later, I said yes. On Feb 2 next year, we will be married 27 years. As for offended, never by D patients or care givers.

Well, well...your story sounds familiar. M and I had a 16 hour first date. Near the end of that date, I told her that I was falling in love with her. She told me the same. A week later, I asked her to marry me. To my delight, she said yes. We are to be married on July 1.

Thank you for sharing, and for the warm welcome.

Congrats on your upcoming wedding!       :2thumbsup;       :clap;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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