new to site not to dialysis

[catfish10]

my name is sheinalee, im 29 and have been on dialysis for 6 1/2 years.  i have had two liver transplants 1st when i was 8 and the 2nd when i was 9.  my kidneys function started to deteriorate aproximately 13 years after the 2nd liver transplant due to antirejection medication toxicity.  i currently do hd in center 3xweek for 3 hours.  in the last two years i have had two parathyroid hormones removed due to a hyperactive parathyroid, i have to have the other two out because my PTH is still in the 2500's.  i have gone through many catheters and now have a button hole fistula which i must say makes it easier to get in the water still either for surfing or swimming even just bathing.  however the needle pricks are painful and make me dread treatment daily.  im having such a hard time believing i will get a kidney as ive waited this long and not gotten a phone call or stir of hope that one is coming my way.  neither of my parents have volunteered their kidneys which makes me feel even more depressed and of lately i have been contemplating stopping dialysis and going into hospice.  im sure everyone in here has felt like throwing in the towel at some point.  it just feels as though there is no hope.

[galvo]

G'day catfish10 and . As the button holes develop, the pain of needling should recede as should your dread of daily treatment. I've had my button holes for a while now and I'm happy to not use any form of local. Yes, you are right. We all get into that dark place at times and wonder if it's all worth while. I just seem to blunder on, one day at a time. I find this site the best therapy there is. I hope it proves the same for you. Stick around a while with us.

[boswife]

hello and welcome catfish10     Im so sorry your in that 'place' right now.  Im just the caregiver, but i tell you, i have been there myself with this desiese.  I feard it and what it ment to my life (as in i am very attached to my hubby and dont want to loose him)  If it wernt for IHD, i honestly dont know where we'ed be.  It has given me strength, knowledge, and courage to fight on because i know that it's worth it.  I hope you too find some good hope and friendships here to make it not seem so dreadfuly awful...  All the best, and it sounds like you have lots you can share, jump on in and lend a hand 

[Bajanne]

Welcome to our community!  Please, you are too young to consider hospice!  You are the same age as my daughter, and at 60 I refuse to give up.  Please don't!  This is a lovely site for information, support and encouragement. I admit that you have been dealt a difficult hand, but I continue to be amazed at the human spirit.  This is what this site is for - we have become a genuine family caring and sharing.  So you just keep reading and keep posting.




Bajanne, Moderator

[cloud393]

welcome to the site!  i know it doesn't seem like it but, it  will get better.

[RichardMEL]

Welcome catfish. Not too sure how to respond to that intro - I can totally understand where you are coming from being so long waiting, and seemingly no donors for you. Have you asked your parents why they won't offer?(a touchy subject, for sure....)... that seems really odd - and sad really Of course they may not be able to donate for any number of reasons, but the fact of actually offering would be positive.

It's funny, but there's that old saying about things happening when you never really expect them. We have an IHD example right here of a member who was told her chances of getting a match were minimal and she should expect a long wait for a kidney (and this after 4 years of waiting patiently).... not 3 months later? 5/6 kidney is hers!! So, it does happen!

Hang in there, keep living your life, swimming, surfing etc we're here for you!

RichardMEL, Moderator

[thegrammalady]

   i think you will find that this is a good place to have landed.

[catfish10]

G'day catfish10 and . As the button holes develop, the pain of needling should recede as should your dread of daily treatment. I've had my button holes for a while now and I'm happy to not use any form of local. Yes, you are right. We all get into that dark place at times and wonder if it's all worth while. I just seem to blunder on, one day at a time. I find this site the best therapy there is. I hope it proves the same for you. Stick around a while with us.

thank you for the warm welcome, i definitely appreciate it. this site feels like i have found a home with people who understand my strife. 

[carol1987]

Hi Catfish!!    I hear you!! So many ups and downs on this journey... hang in there!!!!
There will be many more good days!!!

[peleroja]

Welcome to the group, Sheinalee.  Lots of great information and friends here.  Glad you joined!