THANK YOU for being here

[MissRene12]

I was so relieved to find this forum last week.

About me: I met my best friend in 2003. Back then, he was 28 and had been living with failing kidneys for four years.  After two years of friendship, and the overall "will they, won't they?" vibe we apparently gave off to all of our friends, we finally started dating.  We've had a wonderful relationship so far, got engaged last March and will be married in June 2012.

Last year was a roller coaster.  Two days following the elation of the engagement, we found out that his numbers had dropped to a point that dialysis would soon be needed. He'll have his procedure to have his PD catheter inserted tomorrow. 

I know this is the beginning of a long journey, but I also see it as the first step to healing him and getting a transplant.  I will admit that it is also extremely scary and frustrating, as other typical 30-somethings don't have to face issues of health or mortality on a daily basis. I do have faith that we will triumph over this. 

[MooseMom]

It's all scary at any age.  But we are here to support you, so please post any questions, rants or pleas for help whenever you like.

You mentioned transplantation...has your fiance's doctor spoken much about this particular treatment?  Do you think your fiance will be a good transplant candidate?  If so, make sure he gets referred to a tx center asap to start the process so that he can start accruing time on the UNOS list.  Or, might he have some friends or family members who would agree to be tested to be a living donor?

Welcome to IHD.

[boswife]

so glad you found it here....  Such a great place to learn from and get support...   lots of people here with lots of info for ya

[RichardMEL]

G'day Rene and welcome to IHD

I'm glad you found us. I think being part of our community can benefit all of us. You have experiences to share and I am certain there are folks who have been or are in situations similar and can provide valuable and insightful support and advice

Just a brief comment or two that I would note - you comment about not all 30somthing's have to worry about medical stuff and mortality on a daily basis. Perhaps this is true, but I tend to think that EVERYONE has SOMETHING "big" in their lives that consumes them - be it medical, emotional, financial, whatever. I am not trying to judge or to suggest that, for example, someone's divorce, or loss of home and income, or assault, or whatever is "worse than" or "better than" someone in say your or your fiancee's situation. I am just trying to suggest that everyone faces struggles in their lives. I can't think of anyone that I know reasonably well that doesn't have something or multiple things going down in their lives - from emotional turmoil to financial problems to relationship strife, to depression, to, of course, medical stuff etc. All i am trying to say is that you may have friends in your own circle that have stuff going on that you don't know about and they could relate perhaps better than you may think.

Having said that yes absolutely you - the two of you - are facing some very significant challenges - nobody would deny that. That you have stuck with him is testament to your character !!! So you're a keeper At times it won't be easy, and of course when he gets the gift of a transplant it doesn't mean the fight is over, it just changes to a slightly different stage, but still the same general battle(but currently being there, it's a WAY better place than D!).

The best thing for him though is he has you and your support. That's so important to have people around him tha care and support, and that you are here shows you want to know more to support him as best you can, and that's priceless in my view. So when he talks about being so tired, or feeling crappy or whatever is going on you'll understand that and accept itand support him and be there with him through it all.

I had my cat but she wasn't very good in the talking dept

I think I'm rambling a bit now (oops!).... I'm just glad you're here and willing to learn more. I hope to see more from you and hope we can help you, and your fiancee, through your shared journey....

RichardMEL, Moderator

[willowtreewren]

 

Hi, MissRene12!

Welcome to IHD!

Your fiance is fortunate to have you by his side.    This can be a scary journey, but you are part of an enormous support group now. And knowledge brings strength. There is so much knowledge and wisdom here.

I'm glad you found us.

Aleta

[billybags]

MissRene12!  welcome to our family. It is scary to start with  when you have to go on to dialysis. Try to learn as much about it as you can, we will answer any questions you have, we will be here to support you. Look forward to your posts.

[MissRene12]

Thanks for the support.  @Richard, i know some of my peers face other challenges on a daily basis that may not always be recognized or discussed, and know that this is just the particular challenge we'll have to overcome. I worry alot about everything, so I'm trying to not let my worry consume me - I want to bring him nothing but strength and support. 

@ MooseMom, he is a good candidate for transplant.  He has no other health issues outside of what is kidney- related (elevated BP, occasional gout flare ups). In fact, his doctor suggested last April that we start the process for a preemptive transplant and try to bypass dialysis altogether, since we have a few willing donors.  Well, the transition from Medicare to his crappy work insurance meant trading the transplant center that had the red carpet rolled out for us to one that is covered by his work insurance.  The new center has since claimed to 1. not ever received his transplant paperwork and asking us to resubmit to 2. Claiming they found it in a pile of files six months later (after an angry phone call from me) to 3. Saying they are reviewing the file (as of Nov).

Extremely frustrating. I'm supposed to discuss insurance issues with the clinic social worker to see if transitioning him to my insurance after the wedding will impact his level of benefit or care. 

[MooseMom]

@ MooseMom, he is a good candidate for transplant.  He has no other health issues outside of what is kidney- related (elevated BP, occasional gout flare ups). In fact, his doctor suggested last April that we start the process for a preemptive transplant and try to bypass dialysis altogether, since we have a few willing donors.  Well, the transition from Medicare to his crappy work insurance meant trading the transplant center that had the red carpet rolled out for us to one that is covered by his work insurance.  The new center has since claimed to 1. not ever received his transplant paperwork and asking us to resubmit to 2. Claiming they found it in a pile of files six months later (after an angry phone call from me) to 3. Saying they are reviewing the file (as of Nov).

Extremely frustrating. I'm supposed to discuss insurance issues with the clinic social worker to see if transitioning him to my insurance after the wedding will impact his level of benefit or care.

So much for having health care decisions made by doctors and patients.  Corporate insurance bureaucrats shouldn't be weasling their way into these decisions.  I have a cousin who had a living donor all lined up, and then his insurance balked at his choice of transplant center, so he ended up having to change his insurance carrier.  He had to endure an entire extra year of dialysis just because of some corporate bozos.  There's something immoral about that.  I hope your fiance's insurance woes won't be so costly.

[Poppylicious]

  Rene, from another 30-something with a Blokey who has kidney issues! 

[RichardMEL]

Thanks for the response, Rene I think you have the right attitude in terms of just wanting to be the support and trying not to worry too much(though you will, of course!). Just remember through everything he and you both will go through that you need to take care of yourself as much as him - your wellbeing - both physical and emotional are just as important

[MissRene12]

Thanks again guys.  @ Poppylicious, I like your blog . Not as bad as Blokey, but I also have minor freak outs occasionally, lots to relate to there.  His surgery went well, and we've both spend most of the evening and today just vegging out on the couch. He's a bit sore, but not close to enough to keep him from playing the New Batman game he got for Christmas.  We'll probably both head back to work tomorrow. 

[lmunchkin]

Welcome Rene.  Lots of good people here. Very supportive & IMHO, pretty wise in the world of kidneys!!!!!!

Again Welcome & God Bless,
lmunchkin
 

[Lovebelle]

Well Rene, Welcome!

As a 30-something female with kidney issues I gotta say your husband is very lucky to have you by his side. My boyfriend has made the comittment to be with me, with all my issues and I feel blessed to have him by side every day. Sometimes I wonder why he would consciously make the choice to be with someone who goes through so much on a daily basis and is all scarred up from Surgeries and catheters. Especially since he hasnt quite reached the 30-something bracket yet (he's 29),  But caring and loving someone is an amazing thing.

I wish you all the best of luck as you begin to enter the transplant evaluation of things. It can be a frustrating process but persistance and patience definitely pays off

[lmunchkin]

  But caring and loving someone is an amazing thing. 

You are so right there, Lovebelle.  It is nothing but LOVE.  Very powerful as it stands alone  or in Unity!!!!!!

lmunch
 

[MissRene12]

@ Lovebelle, I agree with munchkin- it has to be love.  I still have the feel all goofy type of lovey feelings when I think of my fiancé (corny, right?), but nothing could change that feeling.  As for him, he's finally starting  to feel better following the PD catheter surgery, just a bit sore from the trapped air in his abdomen.  I still have a lot to learn, but I'm finally starting to feel a bit at peace with everything. 

Back to the air in abdomen issue following surgery. The nurse said his body will just take some time to reabsorb this air.  Is there anything else he can do to speed up this process? I know it's a long shot, but figured it wouldn't hurt to ask. 

[willowtreewren]

Back to the air in abdomen issue following surgery. The nurse said his body will just take some time to reabsorb this air.  Is there anything else he can do to speed up this process? I know it's a long shot, but figured it wouldn't hurt to ask.

Walking, walking, walking.....

 

I hope he continues to improve.

Aleta