Hello

[pelagia]

My name is Linda and my husband has been on dialysis since his double nephrectomy on March 20th.  He inherited PKD and has had signs of the disease since he was about 25.  That was a few years after we were married (our 29th wedding anniversary starts at midnight).  He is scheduled to have a kidney transplant on May 14th due to the generous spirit of my sister's husband.  I am trying to help my husband heal from the first surgery and get as healthy as possible before the transplant.  This forum has been a blessing.  I found it by accident late one night when I was feeling down about how little I had anticipated how he would feel after the surgery and how much the dialysis would take out of him.  I have spent most of my time here reading about the importance of protein, controlling phosphorus and what the numbers mean for blood work, machines, etc..  For the last two sessions he's had a protein shake in the car on the way home from dialysis based on what I read in one of the forums (thanks Zach!).  It seems to be helping.  I look forward to learning more from the experiences of this community.

[Sluff]

Welcome to ihatedialysis.com pelagia,

I'm glad you found us also and I'm even more glad that you have gained some helpful knowledge. That is the reason we are here. Feel free to post often and ask questions.

Sluff/Admin

[flip]

  Linda

I do the protein shakes (Nepro) after dialysis and it really helps. I hope the transplant goes well.

[monrein]

Welcome Pelagia
Your husband is so lucky to have your support.  I know because my husband is very supportive of me and I often think that it is sometimes easier to be me than him, weird as that may sound. My brother's wife has also offered me a kidney but we don't know yet if hers will be the one  I eventually get.  My husband too is offering me one, as is a cousin and two aunts.  We're just beginning the testing process though and they want me on dialysis for about 6 months first.  Good luck to all of you.

[boxman55]

Welcome to IHD caregivers are an important part of this forum please feel free to speak your mind...

Boxman,Moderator

[rose1999]

Hi and  this is a great place with lovely people.

[NolaGail]

  Pelagia--

Glad to see you here.  I have one thing to say, "Living donors are angels from heaven!" 

Hope all goes well with the upcoming surgery and recovery.

NolaGail

[Ohio Buckeye]

  Pelegia to the IHD Family!
Prayers and best wishes for a kidney transplant for your husband that
last a real long time.

[Ang]

  aboard from

  hope  all  goes  well  for  the  transplant

[Phillip_20]

 

[willieandwinnie]

pelagia. There are a few caregivers on IHD. Your husband is lucky to have you and have him join too. We are a great group and full of information. Keep us posted on the transplant from that angel donor. Take care.

[annabanana]

    I, too, am a caregiver to my husband. This site is wonderful!

[Romona]

 

[Bajanne]

Welcome to our community!  As I have had the chance to say many times, I am always gratified when someone joins IHD because of their concern for a loved one.  And I am even more gratified that you can testify that IHD has been helpful to you.  That is what this site exists for - frank, honest sharing; helpful information; a place to vent, rant, rage when you need to; virtual shoulders to lean on; fun, fun, fun.  Keep reading and keep posting.   

Bajanne, Moderator

[Slywalker]

    Pelagia  - Chalk me up as also wishing and hoping and wishing and hoping that all goes well between now and the transplant - and, of course, for the transplant surgery.

Lots of supporters for you here.

Sandyb

 

[MyssAnne]

Welcome, Linda, and I sure do hope the transplant goes well! 
There's a great group of caregivers here, they're just wonderful, so you'll find support from them,
as well as us others, patients, transplaters, family, etc.!  We have a huge and varied family here,
you will find support and help on whatever you may need!

 

[pelagia]

Thank you all for your welcoming notes and words of support.  My husband is not having a good day today after a week of feeling a little better everyday.  We went out last night to celebrate our anniversary and I think it took a lot out of him.  And then he did not sleep well last night and today he had dialysis.  Hopefully tomorrow will be a better day...

I will do a better job with my profile as soon as things settle down a little more in our house.

Cheers,
Linda

[oleboy]

 

[kitkatz]

Welcome.  Caregivers are a welcome sight here.  They give a different perspective on this ESRD disease and dialysis.




Kitkatz,moderator

[pelagia]

I read a bunch of other intros yesterday and realized that I didn't tell much about myself or my husband when I first joined. 

I married into a PKD family almost 30 years ago, but we didn't know it at the time.  Turns out that my father-in-law had PKD.  My husband discovered he had high blood pressure a few years after we married and his mom told him about PKD running in his Dad's family. 

A few years later my father-in-law lost kidney function, went on hemodialysis and them home hemo.  He had a kidney transplant, which lasted 7 years until he passed away from a heart attack in 1993.  My husband and I were still pretty young at that point, in our mid 30s, and living 100s of miles away.  The realities of dialysis and transplantation were not a part of our everyday lives. 

Looking back at this point, I would have to say that we have had pretty great lives overall.  The effects of PKD did not slow my husband down much until his kidney function dropped below 20%, about the time he turned 50. He tired more easily and had more difficulty controlling his blood pressure. He plays acoustic guitar for a living and has travelled all around the world performing at everything from house concerts to shows in small concert halls to large music festivals.  All that traveling and performing can be tiring and take its toll.  I am a scientist with advanced degrees in marine science.  I teach and do research at a major state university in Virginia.  

After my husband's nephrectomies, he went on dialysis and that was a big shock to our existence.  I came to IHD for information and found first-hand accounts, advice and links to information that really helped.  However, over time I was drawn to the community as much by the people as the information.  You at the other end of this forum understand what kidney disease is all about and many of you have had experiences that are I will never be able to fully imagine.  You are a source of experience, wisdom, humor and advice.  I continue to read and to learn about the people who are this site.  I am in awe of a fellow called "Epoman" who had a dream and made it happen.

Now Stephen has a transplant.  What can I contribute to this forum? Hopefully a little perspective that is useful for others. I have two brother-in-laws with PKD and an unknown number of nephews and nieces, as well as my own son who might have PKD.  I know there are many others out there who are looking at uncertain futures because of PKD (and other kidney diseases).  I also need to stay informed and will do that by learning from the experiences of others and the information posted here. 

Thanks for letting me be part of this forum!

[donnia]

Thank YOU for being part of this forum!

[monrein]

I second Donnia's post, Linda, and I'm sure we all here feel the same.  Thanks for telling us more about both you and Stephen as it's really nice to know people in other dimensions than just their CKD.  I love hearing about Stephen's positive outlook as keeping that perspective is also my way of keeping sane and negativity just sucks the life out of me.

I'm so glad you found IHD and decided to stick around.

[pelagia]

Today is my one year anniversary as an IHD member. 

Thank you all for everything - the information, the humor, the wisdom, the friendship, the wise cracks, the reality checks, the jokes, the support, the music and the smileys. 

I love my IHD family 

[willieandwinnie]

pelagia  Thank You. 

[MandaMe1986]

Hi there, happy to have you