Looking for some support

[Linfarn]

Hi all,

I have just found this forum and thought I’d introduce myself. I have had Kidney disease for the past 40 years due to Lupus. Was fortunate to have a living donor kidney for over 20 years. Unfortunately had to go back on hemodialysis four years ago. I am currently on the transplant list and waiting. Finding it hard to have a positive attitude. I have a good support system with my family and friends but no one really knows what I’m going through. That is why I’m hoping to find a lending ear from people who are dealing with similar health issues.Thanks for listening

[Charlene_Coxhead]

Hi linfarn

Welcome to the forum you will get lots of support from this forum there is always someone to help and offer support. I myself am in end stage renal failure and have been for the last 2 years, but happy to say I'm not on dialysis at the moment which is a shock to me and my consultant. Both my live donors didn't work out unfortunately which was hard.

I understand how hard it is to stay positive but I really believe it's the best thing.

Take care and you are in the right place to find support or to offer others support as you must have lots

[Linfarn in reply to Charlene_Coxhead]

Thanks Charlene. I too had 2 Living donors that had stepped forward but one backed out do to family issues and the other did all his medical testing but in the end could not donte. Right now I have a sister in law going through the process of being a donor but I try not to get my hopes up especially after what happened in the past.

Glad you aren’t on dialysis stay away as long as you can. It’s not terrible but you find your whole life revolves around it. I miss not having the freedom to take a long weekend or vacation at a moments notice. True you can dialize in other places which I have but it takes at least a month of planning ahead of time.

Today is a good day and I’m feeling positive. Will be heading to Cape Cod tomorrow after dialysis and was able to get a later time for dialysis on Friday.

Hope you have a good 4th too. Thanks for listening

[YollyD_NKF]

The PEERS Program is a national, telephone-based peer support program from the NKF that connects you with someone who has been there. kidney.org/patients/peers

[wolfmom94]

I may not understand your situation totally. I am on the other side. I am the mother & caregiver of my 23 yr old son, also on transplant list, also on hemodialysis (we do it @ home, & I do it.) But I do understand how hard it is to stay/think positive! For me, I look for people such as you to lift up & that somehow helps me-I dont know why or how but encouraging other people somehow pulls me out of my "poor me" attitude. I dont know if that makes any sense @ all but it's true. But like my son, I just know that there is a solution out there for you! I'm sorry you've been on the list so long, but the right donor will come! If you feel like talking/venting/yelling/whatever, please feel free to contact me, I really do understand! Hang in there kiddo lol!

[Linfarn]

Thanks for your encouraging words. Today is a good day and I am feeling more positive! Heading to Cape Cod tomorrow after dialysis and was able to get a later time on Friday for dialysis so I can enjoy some time away.

Was very interested in hearing you do hemodialysis at home for your son. Was thinking of doing it at home. Is it a lot of work? And do you run into any problems like blood pressure drops etc,?

Hope you can enjoy the 4th

And yes I do get it about encouraging others how it helps with the poor me attitude. But I think we are entitled to a poor me attitude every once in awhile! As long as we can move on.

[wolfmom94 in reply to Linfarn]

Did you enjoy Cape Cod? I was just reading thru stuff & found this, it didnt come up in my email or anything sorry! How are you feeling? I'm hoping better is your answer!! Home dialysis does take up your life, but there's alot of positives to it! I'm working on (meaning talking my son into lmao! not really but I am explaining that longer/slower is better for his heart-which it is!!) doing longer "runs"-slower runs means more cleaner blood & better for your heart! But it is getting easier! We're newbies @ home dialysis; so it's been a very chaotic what now? 5 months? BUT, for the last 4-5 weeks it's been very smooth sailing! Seriously! Yes, we've had problems w/machines & accesses & if you want to talk about it message me & I'll give you my email address ok? I just want to know how your doing tho! Are your spirits up now? Sometimes time can do wonders! Sometimes, it sucks lol! I havent figured out how to message someone privately yet lol! I'm stupid when it comes to this stuff! But please let me/us know how you are doing!!! You are cared for! This forum is fantastic & I'm so glad I found it! Hopefully you are too! Take care & we're all here for you cheering you on!