Hello, I'm New!

[Beth35]

Hello everyone.  I just joined the site and I'm SO glad I found you!  I never knew this site existed and now I finally have a place where I can talk to other people who knows what it feels like to walk in my shoes.  I can't say enough how much that means to me.

As for me, I am in stage three renal failure AGAIN.  I found out I had kidney disease when I was about 15 years old.  They told me I would have to be on dialysis someday.  Well that someday came when I was twenty years old.  I was on Hemo for five years (seemed like an eternity) and I finally got the call for my transplant in March 1999.  I've had my kidney for ten years.  Last summer I had a biopsy and it appears as though my kidney is scarred and my labs are not good.  They told me last summer I would be lucky to have three more years with this kidney. 

I guess I'm still kind of shocked.  I didn't think I would have to go through this all over again so soon.  IDK, I was hoping I'd be older.  After my transplant, my boyfriend of seven years dumped me because I gained too much weight from the steroids and since then I decided to adopt two children.  So now I am the single mom to a three and four year old. 

As you can imagine, being a single mom to two young children adds to all of my fears and worries.  I've been losing a lot of sleep thinking about it all.  But I am so glad I found this place because I Hate Dialysis. 

[MandaMe1986]

Hi Beth happy to have you!  Your right this place is wonderful.  So many people to share stuff with good and bad. Hope to see you around! 

[Joe Paul]

Welcome Beth, good to have you aboard.

[G-Ma]

 

[MIbarra]

 , Beth! This site is awesome! I'm sorry to hear your transplant is failing. Learn all you can here and ask questions before you face dialysis again. I only wish I had found this site before I had to begin hemo, but am sure glad I have found it and everyone here now!

[Romona]

 

[willieandwinnie]

  Beth. We are a great group, loaded with information and even more support then you could imagine. Please post often and check out some of the older threads as they contain all kinds of stuff. 

[Beth35]

Thank you everyone for the warm welcome.  I've been sick more than half of my life and I always felt very alone.  When I first began dialysis I would have my treatments at the local hospital.  All of the other patients were old people.  I never met anyone my age who was going through this and it was very hard on me.

Even now, I'm getting pretty depressed about having to do this thing all over again.  Sometimes I just don't feel like I have the strength.  But I really don't talk to anyone in my life about it because I figure they just can't understand or they will feel sorry for me and just pity me or worse I'll become a burden on people.

My biggest fear is of something happening to me and leaving my kids alone.  I adopted them and I am all they have.  Being a single mom is tough and I'm not looking forward to having to do the whole dialysis thing again.  So many thoughts are just going through my head ya know?

But I have spent some time reading here and I am learning so much.  There are so many new things in the world of dialysis now and I can't wait to learn more.  And the shirts from the store are hysterical.  I gotta get me one of those!  LOL!

Thanks again everyone for welcoming me.  I can't wait to get to know you all better!

[RichardMEL]

Welcome Beth!!!! You have quite a story and I'm sorry that your kidney disease is attacking the transplanted kidney - that sucks for anyone but specially as you're still so young!! That would have made things so tough for you and I can understand your fears about your young kids. You haven't said much about your extended family - do you have many/any who can support you?

I know a number of single ladies who have younger kids and juggle dialysis and ESRD with looking after them. One I know has a daughter and when she's doing in center hemo her mother picks up the girl from school until she's done and able to get home. It's basically a shared effort. I hope you can work out something like that.

Of course you may well have more years than you think with your transplanted kidney and each year means your kids are growing older which will help things a lot I think.

Finally one comment.. some boyfriend!!! He's been with you SEVEN years, seen everything you've been through with dialysis and all that and dumps you because of steroid induced weight gain??? That's just not right... but it also shows you he wasn't the one for you.

 

Welcome to IHD!

[kellyt]

First off, you'll soon fall for RichardMel just like the rest of us!  He says all the right things.  Such a cutie-pie!   Be prepaired!   

Welcome.  You've come to the right place.  I'm sorry to hear your transplant is failing.  And all the while being a single Mother of two young ones.  That is a totally justifiable fear!  I hope you find comfort and peace with us here at IHD.   

[monrein]

  Beth.  I hope you find this community as helpful and wonderful as most of us here do.  You are definitely NOT alone.  One thing I would say in the way of advice (which you didn't ask for, so I apologize if I seem out of line here) is to try to ask for little things from friends or family that would help you to cope as you go through this.  I think we all know that worry about being a burden but despite your awful experience with the ex-boyfriend, the people in your life who care about you, might be able to step in a little bit and help with the kids or whatever.  Of course I don't know your exact situation but many people are very willing to do what they can, if only they knew what was needed.  Unfortunately, many cannot understand what we go through every day and we then have an added burden of trying to educate them.
I hope I don't seem presumptuous by saying this but I do know how tough the phase you're in right now can be.   

[Beth35]

Thank you everyone for being so understanding.  Yeah, the boyfriend thing kinda shocked me.  He had been there throughout dialysis, MANY hospitalizations and all of the drama that comes with being a dialysis patient.  He was so happy that I finally got my kidney and we could move on with our lives.  Then when my face got really round, he would ask things like, "When do you think that will go away?"  or "Are you exercising and eating right like the doctors told you?"  Since I was not allowed to leave the house much he had to come to me all of the time and then he started coming less and then later when he did come.  So although he didn't SAY that's why we should "take a break" I knew it.  But your right.  He was not the one for me, and now I have two beautiful kids and I didn't need a man to do it.  LOL!

As for my family, all of them live an hour and a half away from me and everyone in my family works right now, including my mom.  My mom had hoped to retire in two years so that she could help me a little bit but they had a major problem with their sewer system and had to take out a huge loan for a new one so now she's afraid she will have to work a little longer.  I just moved to this town about two years ago and I know my neighbors but I'm not super close with them.  I trust them with my kids in case I had to be taken in an ambulance for something but again, everyone around me works.

As for friends and coworkers, most of them live where I work and I commute about 40 minutes to my job as a teacher.  If I needed someone in an emergency I know they would come to help but other than that, as for the day to day things, I'm kind of on my own.

I'm very, very bad at asking for help.  I really don't have a super helpful family either.  I mean they love me but they are all so busy all of the time with their own stuff.

[RichardMEL]

Geez Louise (as we say!) - if my girlfriend had the "moon face" from the incredible gift of a kidney I'd be so greatful she could hopefully live a far more normal life in time and I wouldn't care about the face... hello still the same person inside right?!?!! And as we all know as the steroids are reduced the  puffiness (etc) goes away. Hell, this sounds stupid I guess, but I can't wait to get it myself.. not that I am wrapped with pumping prednisone into my body.. but if it means I have a transplant and hopefully a dialysis free life for awhile I'd be over the moon. I'm sorry you lost that guy because that just makes no sense to me. Why would you go through all the trials and tribulations with someone to break away at the last "hurdle" Sometimes I will never understand the way some people operate....

It sounds like your mom is trying hard, or planning to, be in a situation where she can help which seems pretty super helpful to me. Hopefully you can hold out for a few more years via diet, meds etc to control the failing of the kidney and prolong your time with the transplant to be there with your kids as much as you can.

The other thing is that kids are strong and resiliant. I am sure they will learn to deal with whatever happens - by that I mean in terms of you being tired, sick, needing hospital - whatever... I am sure you all will be OK.

[Beth35]

Richard, I lost the weight a few months later and got back to being skinny again.  If only he had waited.  Ah, his loss right? LOL!  Of course I gained some weight back after adopting the children.     Gotta work on that.

As for my diet, what do you suggest?  Should I begin eating like I would when on dialysis?  My doctors really have not discussed anything as far as diet right now.

[RichardMEL]

Richard, I lost the weight a few months later and got back to being skinny again.  If only he had waited.  Ah, his loss right? LOL!  Of course I gained some weight back after adopting the children.     Gotta work on that.

What a dick! You should have sent him pictures of you a few months later!!!!

As for my diet, what do you suggest?  Should I begin eating like I would when on dialysis?  My doctors really have not discussed anything as far as diet right now.

I think it is something you should discuss with your neph. I am guessing maybe a lower protein diet might be a better thing for someone pre-dialysis (vs. a high protien diet once on it) but I really wouldn't want to suggest something for you that could be very wrong for your specific situation. I'd just speak to the neph about things YOU can do to do the best you can by your transplant. Obviously that is their goal too, but I am sure there are little things you could do that who knows may have an effect. I went onto an ACE inhibitor for the BP when I was diagnosed and I am sure that helped me heaps in terms of keeping my kidney function as well as could be - I lated 13 years after being diagnosed which was pretty fabulous... so I would discuss with the docs anything they could suggest. It can't hurt.

I wouldn't go making massive changes without consulting them though.

[Beth35]

Thanks!  I will talk to the docs when I go for my next blood work over Spring Break.

[kellyt]

Beth, I'm dealing with the puffiness and weight gain at the moment, myself.  It sucks.  But as they say...  "This, too, shall pass".

Welcome, again.

[Beth35]

Yes Kelly it does fade.  I have found it's a LOT tougher keeping my weight down though since my transplant.  But what can ya do?  I'd rather be a little heavier than tied to a machine for the rest of my life.

[RichardMEL]

Yes Kelly it does fade.  I have found it's a LOT tougher keeping my weight down though since my transplant.  But what can ya do?  I'd rather be a little heavier than tied to a machine for the rest of my life.

hell yeah!!!! Beauty is but skin deep as they say. Besides the thing is this is one of the known issues for post transplant patients. It's not like you're working out for a part in "Super Size Me: The Next Generation" or something. Just seems stupid that someone who had stood beside you for SO LONG (****SEVEN YEARS*****) so clearly wasn't a fly by night guy would disappear after that. I think, beth, perhaps more than that was the deal... like maybe someone else. Of course the fact that said bloke couldn't be honest and up front with you in the first place, specially after knowing you and all you'd been through for so long... well that speaks volumes for the sort of fellow that he is. I sure as hell hope *I* never treat someone I cared about (let alone anyone else) like that. sigh

[Beth35]

Well the night of the transplant he was by my side.  He wrote me this lonnnng note about how that day was the best day of HIS life and how we can do anything we want to do now and then just a few weeks later I was getting the comments about the weight and "following my doctors orders about eating right" and so on.  I have no idea if he found someone else while I was at home recovering but I do know he moved on quickly.  It's been a long time now and it hurts when I think of it.  But I have told myself that I am better off without someone like that.  I guess he wasn't who I thought he was.  It was very hard to get through that and lose the weight and go back to school but I did it.  I never did find anyone else but I'm sure that right guy is out there somewhere.  Or not.  LOL!

[RichardMEL]

*hugs for you* OK we won't mention HIM anymore if it still hurts - I'm sorry. What a jerk only weeks after your transplant?!!! Yeah, it's going to happen overnight. Geez what he wants an instant barbie girl rather than his companion, best friend and lover for years by his side? man his total loss!!!! Hoping you will find that special someone for YOU - perhaps when you least expect it!! 

[Beth35]

Aw thanks Richard.  You're so sweet.   

Thank goodness I have a new love and that's my kiddos.  They keep me going and make my life so wonderful!

[kellyt]

Very cute kids!

Yes, I transplanted just weeks before the holidays, so I went through both Thanksgiving and Christmas on high doses of Prednisone.  It was pure hell.  So now I get the challenge of being over 40, with a new kidney and on Prednisone!  Triple whammy!   

Hubby has shown no signs of discontent thus far.     I love him dearly for that.   He says "We expected this to happen."

So glad you're with us, Beth.

[RichardMEL]

yeah cute kids beth. Where's the pic of you? I wish to know if I should add you to my bikini hottub harem or not??? 

[Beth35]

Bikini? Ha Ha!  Maybe a one piece.  I will post a pic of me when I get a chance.  I'm hoping to be fit for a bikini by the summertime.   LOL!

Kelly, you look great in your picture!