After months of lurking, I am here....

[tiredandthirsty]

Hello all,

i have been lurking here for a few months now.  finally i decided to write seeing how nice and supportive and knowledgeable everyone is. 

So i had a transplant back in 1991, don't know why my kidneys failed as i was 10 at that time.  i didn't know a transplant does not last forever and i was always under the impression that my time of "punishment" was done.  i had endured all i was to suffer.  but i was wrong. late last year i found out that my kidney was faltering and it was time again.  i obviously was in denial at first and fought with my nephro.  but after a while, i gave up.  however i decided i will push dialysis out as much as i can.  so i got everything sorted out to get myself back on the list.  and have been avoiding dialysis up until today.  when i received the unwanted call.  it is time.  cannot delay more.  i am depressed. i hate my life even more now. 

[conchman]

Hey TandT,

Sorry to hear things are bad.  Welcome.    I think you will find a lot of support and help here. I am not as far along as some but in a couple of years will be just where everyone else is.  In life I try and put myself up against others and their challenges.  Someone I work with has terminal cancer and has a few months, just a matter of time.  Thinking like this sometimes help me with perspective.  Although we are in a bad spot, what's the alternative...hope you do okay...

Welcome...

[tiredandthirsty]

absolutely right conchman.  thanks for the bump.  I am petrified because i don't remember any good things that happened once i was on dialysis the last time in 1990.  a lot of pain, 300 ml of water in a 24 hour span, almost everything was restricted diet wise.  i am scared that this is what is next in store for me. 

[iketchum]

You don't need to be scared of the diet. There is plenty to eat and most not bad. The worst part of the diet is the fact you don't have control of what YOU want to eat. Too bad you have to go back on dialysis. It becomes a life style like most everyone here lives, and it is a new lifestyle, you are not stuck in a hole and forgotten. No one wants to change how they want to live for sure, but it is doable. Stick with us for all the support you need.

[cariad]

Hiya!

Wow, with a few minor numbers changes this could have been my intro. I am so glad you joined yet so sorry for the reason!

Fear is normal and will hopefully drive you to learn all you can about improvements in dialysis over the past 20 years. There are options that might be available to you that would lessen diet and fluid restrictions (the latter being such a nightmare).  I am getting the impression that you are not in the US, is that right? It would help us get you the most pertinent information if we know which country you call home, but only if you're comfortable.

I can hardly believe it myself but there are people who feel energetic and well on dialysis and lead very happy lives. Please stick around and post often and hopefully you will be one of them, starting right now.

to IHD!

[tiredandthirsty]

thanks for the warm welcome all.  i really appreciate it.  even though i wasn't posting before, this supporting feeling of others is what kept bringing me back to this board.

cariad:  i am in the US.  i have read a lot about the available options.  i am still mortified to be honest.  i can survive the diet restrictions but the fluid restrictions is what scares me the most.  i am used to drinking quite a bit of water.

[lmunchkin]

Welcome T&T.  You have finally joined us and we are here to help in any way we can!  I am a caregiver to husband who has this and I agree, it is "Devastating" to know that this is "our life".  It is and we just have to make the best of it!  We have decided to just be content with Dialysis.  It is not the end of the world and it is an alternative to sustain life.  People with cancer, do not have this option!

Im sorry and I hope that you can settle in and live this time as best as possible.  My husband has and is living quite well on D.  He is not eligible for a transplant.  He has been through alot, and I am so proud of his strength through all of this!

Again Welcome & God Bless You,
lmunchkin

[JenOfCA]

Hello and welcome! I just recently joined as well after lurking around for some time. I know exactly how you feel! I was 27 the first time I went on dialysis (so young and nieve back then) after 3 years on dialysis I had a transplant and never thought about dialysis again! Until 2 years ago when I got the call that my transplant was going south, slowly....I was able to put off dialysis for a while intil I got so puffed up and sick that I had no choice, well now I've been back on hemo for a little over a year, it was amazing how quickly all those horrible hemo memories came rushing back, ugh! I've slowly adjusted back to the diet and fluid restrictions, you will be fine, it just takes a little time and this is a great place to get lots of info and support, glad you are here!! 

[willowtreewren]

Oh! You! Lurkers!

What WILL we do with you? 

So glad you decided to join in, T and T!

When my father-in-law was on dialysis back in the 80s and early 90s it was a different world. Things have definitely improved since then. That doesn't make it a walk in the park, but hopefully not as bad as you are dreading!

If you are able to do home hemo on a daily basis, the fluid restrictions are not as bad.... 

Welcome to the board!

Aleta

[tiredandthirsty]

thank you all for all the positive and supportive comments.  i really appreciate it. 

willowtreewren:  i don't know yet what i will be eligible for, home hemo incenter.  i cannot do peritoneal dialysis because of another medical issue i have.  so hemo is a sure thing.  that's all i know for sure. 

[willowtreewren]

thank you all for all the positive and supportive comments.  i really appreciate it. 

willowtreewren:  i don't know yet what i will be eligible for, home hemo incenter.  i cannot do peritoneal dialysis because of another medical issue i have.  so hemo is a sure thing.  that's all i know for sure.

We will just have to keep our fingers crossed, then. 

Aleta

[RichardMEL]

T&T - welcome! I love the username. very cute (but sad because we all understand...)

The only real comment I have in addition to the welcome like everyone else is that many things have changed since 1990. That's 22 years ago. Not only is the dialysis process, machines (etc - depending on what you end up doing) and meds, and general understanding, better - but you're also a different person - a grown man/woman vs. a 10 year old (with no offence meant to the child you were). The other thing to consider is that your transplanted kidney is probably assisting your residual renal function which means hopefully your resitrictions may not be as severe as they were back last century.

Dare I say, that you kept that transplant going for over 20 years is a marvel!!! I know D totally bites the big one, and as a 30something you want to be out there living life, not tied to a machine - we ALL get that but you absolutely can live with D and the diet and all that, and you're in a position to at least go in with a great understanding of what to expect - even though some of it will probably be quite different to what you expect.

Stick with us - we can assist I am sure, and at least understand some of what you're dealing with.

RichardMEL, Moderator

[Poppylicious]

  t&t!

[tiredandthirsty]

thank you RichardMEL and poppylicious. 

RichardMEL:  I couldn't come up with a username when i was registering.  and this is how i was feeling :-).  well that is how i feel most of the time.  i don't have any fluid restrictions yet, but i have placed restrictions on myself.  i drink as little as i can.  sometimes i get frustrated and drink more.  my problem is, i accumulate fluid ONLY around the abdomen.  no where else.  i look like one of the kids from africa commercial (not making fun of the children), who are malnutritioned and have a protruding belly.  i have had a lot of muscle wasting so i am very skinny but have a protruding belly due to the fluid accumulation!

[MooseMom]

I hope you will find the support you need here at IHD.  We have a lot of members who are on their second or third transplants.  It's not easy, but you have some reason for hope.  I'm sorry that you'll have to spend some time on dialysis...that's really sucky...but I hope we can help you through it.

[jbeany]

 

Yup, I think everyone who has done it will agree that the fluid restrictions are the toughest part!  You can always have a teeny portion or at least a bite or two of that favorite food - but the fluid is just not forgiving at all.  There's plenty of good tips on here for helping you deal with it.  And when all else fails - there's space for a rant about how much it sucks!

Glad you decided to jump in and sign up!

jbeany, Moderator

[RichardMEL]

t&t - yep, I got the fluid around my belly too.. my ankles were always fine but I could feel it gurgling up around my waist. d'oh!!! So yeah, I understand that.

It's a good idea to employ some restrictions, but please don't overdo it - I mean being dehydrated can be just as bad for the kidney as having too much fluid. Maybe as a guide you should use the usual "rule" of 500ml a day plus your output - so if you output say 750ml a day (yes, pee into a container!) than you could say stick around 1-1.5L a day and see how you go. Perhaps also discuss with your neph what they suggest.

Just a thought.

[tiredandthirsty]

richardmel:  the doctor simply told me to try and stay dehydrated and try not to get swollen.  but there has not been a solid NO yet. 

btw, the appointment to discuss next steps is set for 14th.  i am feeling alright right now, but i am sure as the 14th approaches, anxiety will start building up.  let's see.

[RichardMEL]

oh I know that anxiety well... been there and still doing that still.

I am puzzled by a suggestion to "stay" dehydrated. very odd. dehydration is difficult for a kidney as well as fluid overload.

[Bajanne]

Welcome to our community!  Your  screenname definitely resounds with me!  One thing though, there are two things that the founder of this community, Epoman, asked that you declare - your location and your gender.  You can go to your Profile and do that.
Controlling my fluid intake was always my bugbear, although I must say I am doing a much better job these days.  But that might be because the days are cooler here in the Caribbean at this time.  Hope I can do so in summer!
Looking forward to hearing more from you.




Bajanne, Moderator

[Traveller1947]

Hi, tired and thirsty,and welcome!  We, most of us, struggle with the fluid restriction imposed on us, but if you're still peeing and your doctor hasn't restricted your fluids, you'll feel better and it will be better for you, not to be so strict with yourself about how much you drink.  Dialysis will take care of the fluid around your belly over time.  You definitely DO NOT WANT TO BECOME DEHYDRATED.  At the beginning of the year, when I became dehydrated due to C.difficile diarrhea, I found myself in the ICU in hypovolemic shock.   Since then, I've realized that having a bit of extra fluid on is much less dangerous than dehydration.  It's all about moderation.  All the best to you.

[tiredandthirsty]

Traveller1947:  yes there are no fluid restrictions at this point, but the fluid starts getting accumulated in the abdomen and it gets really uncomfortable.  i mean i can totally feel what a pregnant woman goes through.  respect to them.  the feeling of heaviness alone is frustrating.  certain parts of the back hurts, a little touch creates a "wave" in the belly feels super bad.  that's why i try to control the fluid so that i can push the fluid build up in the abdomen as much as possible. 

i have to get a paracentesis done to extract the fluid from the abdomen.  and the doctor has put a limit of 5 litres max every time i get that procedure.  no more than once a week.  i usually can survive three weeks at a time for now.  after three weeks, it gets a little uncomfortable and i have to get my belly punctured to drain.  after the drainage, i feel awesome for a week or so.  depending on how much i drink. 

[Traveller1947]

I know you're anxious and depressed about having to start dialysis, t & t, but what you've just described Is far worse than the reality of dialysis will be.  Paracentesis very few weeks, back pain and extreme thirst in the meantime, not to mention the swollen belly--I  know you're dreading your appointment on Wednesday, but I, for one, will be relieved for your sake, if your doctor says it's time.  Keeping you in my thoughts and prayers.

[tiredandthirsty]

oh I know that anxiety well... been there and still doing that still.

I am puzzled by a suggestion to "stay" dehydrated. very odd. dehydration is difficult for a kidney as well as fluid overload.

well the idea was to drag out the kidney as long as possible and get the surgery done before i need dialysis.  that was the plan but i guess murphy's law comes in to play everywhere.  so that apparently didn't work out too well.

[tiredandthirsty]

I know you're anxious and depressed about having to start dialysis, t & t, but what you've just described Is far worse than the reality of dialysis will be.  Paracentesis very few weeks, back pain and extreme thirst in the meantime, not to mention the swollen belly--I  know you're dreading your appointment on Wednesday, but I, for one, will be relieved for your sake, if your doctor says it's time.  Keeping you in my thoughts and prayers.

Thank you very much for your comments.  really appreciate it.