Freaked Out Newbie Here!

[kiddykat]

       Hello to my fellow Kidney folk...

I am a 50 years young (still a kid at heart)... singer... writer...all around great gal.

About 60 days ago my doctor sent me to the Nephrologists and he told me I needed to have a "fistula" implanted to prepare for dialysis.  In keeping with my "world class denial" abilities, I ignored his message a year prior, telling me my kidneys were down to 30% function.  Struggling with my weight, diabetes, and high blood pressure my entire adult life... I had the lapband surgery and lost about 50 lbs.... and ignored the kidney warnings and hoped that losing some weight would solve all my health issues.  Well... my diabetes improved greatly... but here we are almost a year later and now my kidneys are down to a GFR of 14.  Not good.

When my doctor told me I needed to have the fistula surgery... I got pissed off and decided I would find some miracle alternative cure to avoid Dialysis.  All my friends encouraged my seeking a miracle and I sought out healers, herbalists, acupuncturists, holistic doctors - anything short of a witchdoctor that might improve my kidneys.  My potassium levels shot up and I ended up in the hospital.  Yeah... I stopped eating bananas, cantaloupe, spinach, potatoes, chocolate (sigh!) and all the other high potassium foods (95% of the time), but that didn't cut it.   I'm now relegated to taking Kayexalate 3 times a week... which is pure intestinal hell for me!  I have about 3 hours of ground shaking gas explosions and rear altering diarrhea with each dosage.  Major fun! (NOT!)

My boyfriend is pretty useless.  I know he loves me but when the tears start... and I need support, he literally can't say a word and stares at me with a kind of "hey its not my fault!!" reaction.   I know he's afraid.  Thankfully I have friends with much better support and communication skills and they keep me from jumping off the roof (or devouring a gallon of Chocolate Cherry Garcia Ben & Jerry's ice cream) on a daily basis.  I suspect I've found a new home here at IHD and will read as much as I can... and accept all the support you people can muster.

Thanks for being here!  All your experiences... victories... lessons and trials will be a great help to me.   I have so many questions and fears that need to be addressed... and there’s no doctor that going to give me first hand knowledge of having lived through this. 

I hope to make some great new friends here.... and maybe swap some good Chocolate Cake recipes! (Just kidding) 

Yikes... life sure is a freakin' rollercoaster!

[willieandwinnie]

kiddykat. You'll fit right in here. Glad you joined us for lots of information and support. Hope to hear more from you. 

[Rerun]

Kiddykat your intro was great.   

You will fit right in with this crowd.  I'm sorry about your kidney failure.  Dialysis sucks!

Just spend time on here reading and learning and laughing.

You can have Soy Dream Ice Cream.  Not Soy Milk!  Soy Dream Ice Cream.  Probably to be safe eat the Vanilla.

                                   

[peleroja]

Welcome aboard, kiddykat.  I think we can safely say most of us have "been there, done that."  I don't know where you live, but is peritoneal dialysis an option?  Ok, so it's still dialysis, but you can do it at home and not have to go to the center 3-4 times a week.  Good to have you here!

[Joe Paul]

Welcome Kiddykat, good to have you aboard.

[jessup]

G'day and 

[monrein]

   great intro and I look forward to getting to know you better through this site.  If you've got questions, several here usually have answers.

[David13]

Welcome kiddykat!  You have come to the right place!  You will find answers as well as friendship and support. 

Glad to have you here and hope to hear from you often.

[pelagia]

 

[circleNthedrain]

Welcome!  Your sense of humor will serve you well on this crazy ride

[G-Ma]

   to a wonderful group of people and yes, this is a carnival ride that none of us wanted to come on but at least we can help each other "enjoy" it....   

[kiddykat]

Hey thanks for all the welcomes and wavey little yellow guys!  Its really nice to know you all are here!

There are two things I need to be enlightened on...

1)  Will Dialysis damage my sex drive???  Even with a 14 GFR I have a health libido... please say no. (worried look)

2)  Will I be able to go on to permanent disability once I start Dialysis??

OK... make that 3 things...

3)  Why do I feel guilty about the idea of getting someone's living donor kidney?

I need to lose another 50 lbs in order to even get a donor kidney!  One mountain to climb at a time!  Sheesh.

Ohh and to the person that suggested I do the peritinial dialysis...  I can't due to the lapband that limits a portion of my stomach.
So its hemo for me... and time to write on my laptop.... I guess.

Btw, the script I'm working on is about Vampires.  Heh... maybe I'll have one of them visit a Hemo center and re-route a dialysis machine so he gets all the blood! 

Sometimes I scare myself.

Hissssss!  =^..^=

[kimcanada]

1)  Will Dialysis damage my sex drive???  Even with a 14 GFR I have a health libido... please say no. (worried look)

2)  Will I be able to go on to permanent disability once I start Dialysis??

OK... make that 3 things...

3)  Why do I feel guilty about the idea of getting someone's living donor kidney?

1. Maybe your sex drive will take a kicking, mine did, but my hemoglobin was in the ditch, once that came up everything went back to "normal"

2. I have just applied for Disability, I am Canadian but I will be getting it here , and I am assuming that you would in the States also...

3. I felt VERY guilty at first about taking someones kidney, I could not wrap my head around it... but now , after 2 years, you get very used to the         idea.  Talk about it, read about it, and the more you understand that it is minimal risk the easier it gets.

P.S. I loved your intro and 

[monrein]

Hey thanks for all the welcomes and wavey little yellow guys!  Its really nice to know you all are here!

There are two things I need to be enlightened on...

1)  Will Dialysis damage my sex drive???  Even with a 14 GFR I have a health libido... please say no. (worried look)

2)  Will I be able to go on to permanent disability once I start Dialysis??

OK... make that 3 things...

3)  Why do I feel guilty about the idea of getting someone's living donor kidney?

1.  It's an individual thing about the sex drive.  I never lost mine at all as far as I can tell but Kim makes a very good point about the anemia.  Blood pressure meds can also affect your sex drive but even so it's not automatic.  Be sure to talk to your doctor though if you do.

2.  Pretty sure the answer is yes to the disability question.  I'm Canadian also but if you do a search here on IHD about disability I'm sure you'll find the info.  Several members are on it and have described the process of applying I think.

3.  You need to read everything you can about living donation.  I too thought I'd want to wait for another cadaver kidney but my potential donors wouldn't hear of it.  Eventually I was reassured by my medical team and also by the fact that I'd donate myself and feel very comfortable about it, if our positions were reversed.

[boxman55]

Welcome kiddykat Glad you found us. I look forward to your posts in the forums we have. There is a lot of experience to pull from on our site. Welcome again


Boxman,Moderator

[Normie]

Hi and 

I loved your intro.  You have a sense of humor.  You will definitly need it.  I too wanted to do something like jumping off the roof, but why bother all we have to do is wait and this disease will take care of that--so why hurry it.  Meantime we need to live to the fullest and have some fun and talk to all the nice people here.  Come to chat we will be waiting.
My hubby isn't much support either,   but you are lucky to have your friends.  I get support here and so can you.  When will you get the fistula?
Take care,
Normie

[Bajanne]

Welcome to our community!  I can see straight away that you are definitely an IHD person!!!  So welcome to our caring and sharing family!   First, your screen name is close to one of our moderators (Kitkatz).  Then you seem to have the personality of our late and still beloved Goofynina.  We all went through the freaked-out stage (some more than others), but after a time dialysis becomes part of your life (sadly) and you even start being grateful for the extra time it is giving you.
You made the right choice in joining us.  Here there is loads of information, lots of support, barrels of fun. We are good at giving virtual shoulders to lean on and hands to hold.  Here you can vent, rant, rage or rave to your heart's delight, knowing that there are people who UNDERSTAND!  So take advantage of all this site has to offer.
Looking forward to hearing more from you.




Bajanne, Moderator

[Wattle]

   Hi There

[RichardMEL]

Hi KiddyKat (haha love it) and welcome. Your sense of humour shines through despite all the scary crap you're having to comes to terms with and deal with. You'll fit in just fine here I'm sure.

A few initial thoughts...

1. Your boyfriend. He probably simply doesn't know what to say to you. I had a girlfriend when i was staring down the barrel of dialysis, getting the fistula etc and she was similar and I felt I had no support from the person who, in theory, was supposed to support me the most.. Specially as that girlfriend has a sister who has had not one but TWO kidney transplants so you'd figure that she'd have some concept of what the deal was. Down the track with that gf long married to another guy and living her life (not something I'm upset about incidently) I thought about it some more and I realised.. what the hell COULD she say? She couldn't say "I understand what you're going through" because that would clearly be BS because despite herr sister's ordeal, she hasn't been there, she doesn't know what it's like could she? I think maybe I was a bit harsh with her at that time, which no doubt was also partly me dealing with the scary realities of kidney disease (and I had been diagnosed for 10 years already so it's not like I had no clue what was coming). I'm sure he does love you but isn't sure how to deal with it and support you.. and men being men a lot of us aren't very good at communicating that kind of thing which makes it even harder to even say something simple like "I can't imagine everything you're going through with this but I do care about you and want to be there for you as much as I can"

Maybe you should invite him to come with you to see the neph and have the situation detailed for him in an environment where HE can ask qeustions. Also check with the hospital/unit (or via the neph) a social worker who might be able to tee up a seminar or information session you can both attend to get more insight into the deal. Down here they run these things every year, sometimes more than that where potential patients can meet eachother, meet the team, have everything explained where they CAN ask questions, meet current dialysis patients, and so on. I found that kind of thing very helpful and your bf may also if they do something like that where you are.

2. Feeling guilty about taking someone else's kidney. Yes, i think this is common. Just remember that if it is a family member/friend making a live donation then it is a special gift they want to give to you to improve your life and that should be cherished for the very special thing it is. If it's a deceased donation well.. what can I say but be a bit blunt and say they have no further need of their organ so you're not depriving them of anything and even these strangers have considered their fellow human beings, whoever they may be, in terms of registering to be an organ donor. Again, it is a special gift.. but not one to feel guilty about. I can tell you *I* feel guilty every time I hear of a big accident or some person dying in a hospital setting and instantly that split second first reaction is "Could there be a kidney there for me?" and THAT is a horrible horrible thought.. but I have to remember that it's also natural and it's not like I am wishing these people to pass away. I would never do that for my own potential gain. For every set of organs that are able to be donated there is a huge impact on a family, circle of friends etc and that must always be remembered.. along with the hopefully long lasting positive decision by these folks, or their families, to donate organs..

Try not to feel guilty, but remember it is a normal reaction. Again a chat with your neph and possibly a referral via the social worker might help with this ussie.

3. Sex drive. I have no problem with the sex drive!!! My problem is with the company to drive up the wall with it !! 

Again welcome.. and as a cat lover myself I apprieciate your intro for sure...

hang in there!!! You will be OK with your sense of humour (vital!) I think you will be fine!

[paul.karen]

Kiddykat

Glad you have found us.  Welcome and i hope you will enjoy all the threads here.
PS.  Keep looking for that miracle cure.  We could all use it :-)

P&K

[aharris2]

Welcome kiddykat. Love that avatar of yours!

Alene

[Mizar]

Welcome Aboard!

[RichardMEL]

oh by the way speaking of the alternative medicine/miracle cure thing. My brother sort of pushed me down that path a year or so ago. We went to this guy who does "electronic acupuncture" which is a German system based on ancient Chinese medicine. It involves electrodes and is totally non painful and no needles (!) mixed with various herbal and other concoctions you take to treat all kinds of things. Have to say I was pretty sceptical about it but a friend of my brother claims a problem with her uterus was solved by this guy, and other stuff. My brother consulted with this guy about some stuff he had also. Got to say after the first couple of treatments I had some labs and my creat went down and my eGFR went up (probably a result of that) and some other figures did seem about 10% better... but they soon lapsed again seemingly a one off. This doctor did claim that he couldn't do much for me because I was too far gone, but he also claimed he had a patient at an earlier stage of ESRD who supposedly he delayed him requiring dialysis and as far as I know the patient never started D (well this was about mid last year when we decided not to continue with that treatment as my brother was having no success with his issues either). So a mixed bag really but that was something we did try. Who knows?

[paris]

    As others have said, you will fit right in with this group (of misfits).   Keep asking questions, someone will have an answer and many will have opinions     This is a great group and they have kept me from tipping over the edge many times.  We do have fun, but we really support each other through the rough times.   Looking forward to reading more of you lifes adventures.




paris, Moderator

[cherpep]

Looking for support on this crazy roller-coaster ride, Oh you have come to the right place!!!  Nobody enjoys dialysis, that's for sure.  But, once I started, I was amazed at how much better I felt right away.  One thing you might want to look into is home hemo dialysis.  That's what I do.  There are threads on here that give a lot of information, which I found extremely helpful in making my decision.  Don't be afraid to start your own posts with questions you may have.  Even if they've been asked before, they can be asked again.  People with still answer and also direct you to previous posts if there's more info out there for you.  There are ALOT of very hepful, friendly, and even funny people here.  We are here for each other.  WELCOME!