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[Ladybag]

Hi my name is Kristin I have been on Peritoneal dialysis for going on 11 months I do four exchanges a day. This has been one really difficult journey for me lately. I am 27 years old and have had 6 people denied and everytime it felt like a blow to the stomach. The last person who was getting ready to schedule surgery was my dad on Thursday the 17Th he called me to tell me he couldn't give me his kidney they found out he has Thyroid cancer. This is a man who never goes to the doctor so in a way him and I switched instead of him saving me I got to save him and I wouldn't trade that for anything. But since then I find myself crying every day and just feeling hopeless not just for me but for him. I just hate how it takes so much away from you mentally and physically I am so tired every day I can barley get myself out of bed. But I still go to work every day and just push through. I am just curious if anyone can give me some tips on how to pull myself out of this funk?
Thank you for reading and welcoming me.

[willowtreewren]

Hi, Kristin.

 

I'm sorry about your many donors' being denied. That happened to us, too.

This is a great place to be. I found that no matter how down I got, by reading what others were going through, I discovered that I really had so much to be thankful for. And there is so much support here.

Aleta

[monrein]

  Kristin to IHD.  I'm so sorry to hear about the struggles you've been facing and I hope that this site will be a helpful source of information and support for you.

[RichardMEL]

G'day Kristin & Welcome to IHD!

It really was a kind of blessing in disguise that your dad being tested led to him being diagnosed with TC - a horrible surprise to get - but it may have not been picked up till much later (too late?) had he not seen a doc - so as you say you have saved his life in a way despite how this affects you.

Despite all those knock backs I think it is absolutely wonderful that you had SIX (count 'em) people step up to be counted - that's all you could ask of anyone or expect. That so many have been denied seems a bit against the odds, but they don't usually knock folks back for silly reasons, so it is just unfortunate.

You never know, you may get  "the call" sooner rather than later - when you least expect it. I had both my siblings denied, and it seemed like it would never happen.. and then.. voila!

I don't have any PD suggestions for you alas, as I never did it, but there are plenty of PD experts on here who I am sure can give you some useful suggestions. One thought if you're so tired have you spoken to your neph or anaemia co-ordinator about potential issues there?

Hang in there, and welcome to IHD!

 

RichardMEL, Moderator

[okarol]

  Hi Kristin,
If you have willing donors that are a match you might try to join a paired donation program. You don't say where you live but many hospitals are doing them. Good luck and welcome!

okarol/admin
 

[lou]

hi kirstin,   

just want to reassure you things will get better. i was also doing pd when i was 29, but managed to get away with doing 3 bags a day. i was also very lucky that both my parents, brother and boyfriend all offered to donate but they were all turned down for varies reasons. each time i just couldn't believe it as i was so sure one of them would ok. anyway after 6 months on pd and just when i was feeling very low i suddenly got the call and had a transplant. its been a year on tuesday. i hope so much you can remain positive and i will keep everything crossed for you that good luck/news comes your way very soon. sending a big hug  lou x x

[galvo]

G'day, Kristin, and  .

[Henry P Snicklesnorter]

.

[Rerun]

Hi Ladybag and welcome to IHD.  Reading your story brings back so many memories of when I first started dialysis.  One thing is for sure, when you get your coveted kidney you will never take it for granted.  You are going through a hard time right now.  It will get better.  I think you are doing the right thing by getting up everday and charging through the day like it or not.  I'm proud of you and your day will come soon.  Prayers for your Dad too.

Hang in there!   

Rerun, Moderator              

[karrye]

 

Hello Kristin and welcome aboard!  Sorry to hear and major  for you!  You are so lucky to of have SIX people volunteer!  Yes, they all got turned down, but look at all the love you have flowing!  You are indeed blessed, even if it don't feel like it atm.  Hang tuff girl!!  You have the world at your feet and the call will come! I have complete faith in that. 

Its amazing how your disease was a blessing in disguise. Due to you, your dad found out he has TC.  How amazing is that? No good deed goes unrewarded--just wait and see!

[Ladybag]

Wow...I should have joined this website 11 months ago. You are all so supportive with your words and experiences. I am very lucky to have all of these people get tested even though they were denied  at least I can say they have all tried and I have helped some of them. I have not started the cycler because my dad was looking like he would donate soon and I am a little nervous about it since I still get the drain pain and it hurts!!!! I actually have High BP and I am anemic. I take to BP meds and EPO shots for my anemia. I watch what I eat most of the time I have my splurges. A month before I started dialysis I was in the hospital for High Potassium. Which brings me to another question my last test show that my phosphate was up (on Renvela) and Potassium was up. I have no idea what I am eating that would cause these to go up. My adequacy test was 2.57 then 2 wks ago was my recent and that was 2.17. It's hard to talk to my family and friends since they don't know what this is like. I am very thankful that I have found this website and all of you. I hope I can be as supportive to all of you as you are being to me it really does help to hear how everyone else handles it. I just have to say one thing I HATE DIALYSIS!!!!!!!!!!!!!!!!!!!!!

[WishIKnew]

Hi Krisitn!  Welcome!  I do PD with the Home Choice cycler by Baxter.  Three and a half year now!  I'm waiting for a transplant too and have had several friends and family try without success to donate.  I've had 4 different people loose several hundred pounds (combined) in an attempt to donate to me only to find that they could not for reasons other than weight.  We joke about how family and friends are much healthier now, at least!  I had a friend who was a match and we went through the whole process and were cleared transplant and then I never heard from her again.  She just stopped answering my and my transplant center's phone calls and messages.  Very painful!

I will pray for you dad! 


So, your clearance looks good.  Mine was 2.36 last time.  I am anemic too.  Doing both Epo and IV iron right now...  I sleep far more than I wish I did but part of that is just the cold dark winter.  What else is there to do?  Phopherous is a problem for me  - honestly it's because I won't give up my Diet Coke  - but I do take my binders and my numbers are not too bad.  I avoid chocolate and weat bread and all beans...

Welcome to this great message board.  I just found it myself a few weeks ago.  It is REALLY exciting to read about people getting their transplants!!!!!   

[Ladybag]

Well I just spoke with my step mom and my dad has the slowest moving cancer! Which means they can wait til his insurance kicks in. He only has to do one round of radiation. Hearing this news has lifted such a weight off my shoulders. Now I know my dad will be fine I can still worry but don't have to worry as much!

[Poppylicious]

  Kristin!

Wow, how awful about your dad, but how wonderful that his love for you led to his cancer being caught early!  Sorry that all your donors have been denied, but don't be down ... these things often have a way of working out.

 

[willowtreewren]

As Poppy says, these things DO have a way of working out. So many folks stepped forward to donate to my husband (including me).

None made it through the evaluation. BUT, he got a kidney after waiting less than 3 years.

Keep your hope up! 

Aleta

[karrye]

Three cheers for 'slow moving' cancer!