Questions and Answers

[kitkatz]

I got to thinking about all the questions and answers I have had because everyone know when you are on dialysis a transplant is next, right?  Here goes. A conversation with a friend.

Are you on the transplant list yet?
No I am not.
Why are you not on the list yet?
I went through everything to get onto the list, but was refused due to a weight issue. I had to lose twenty pounds.
Have you done it yet?
Yes I have.
Why aren't you on the list then?
It takes the doctor writing a letter of approval, then it goes to transplant approval board at Kaiser, then to Loma Linda, then I see their transplant team, then they recommend if I go on the list or not.  It takes time.
Don't you have anyone in the family who can give you a kidney?
No I do not. My Mom is too old. Both sisters have high blood pressure. Dad is dead.
Can a friend give you a kidney?
If they are willing and can pay for being off of work while they recover. I personally can barely afford the time I will have to take off for it.
How long is the wait for a kidney?
A cadaveric kidney wait can be from 2 days to forever.  Ususally type O in the United States runs to an eight year wait.
Can't you quit dialysis if you want to? Aren't you healthy enough?
I can't quit. I will die without it. The kidney just don't work.
Are you still working (surprise in the voice)?
Yes I am still working a 40 hour week.
Do you want a transplant?
From what I hear it is a good thing. No dialysis three days a week, and they say you feel better. I am worried about the drugs you have to take afterwords.

I have found people are nosy.

Katherine

[goofynina]

Nooo Kit, its not that we are nosy, we are just curious about others and their situations, well, i know i am,  Its funny that NO ONE asks me anything really about my illness or anything, they just act like i am not even sick, and well, that kinda hurts my feelings cuz it shows either that they just dont care, or they do not realize the severity this disease is.  It is crazy,  i have been sick for nearly 3 years now and i just wish someone would show a little interest in what is going on in my life so maybe, just maybe i can get a little bit of sympathy,  maybe someone can ask if i need something from the store or if they can help me around the house.  It sure would be nice.  That is why i am so hooked on this site,  we all know what each other is going through, all the trials and tribulations are all so familiar and we can empathize with each other.  Dont get me wrong,  i am glad i can still do most of the stuff normal people do (or shall i say healthy) but i think it would be nice every once in awhile to be pampered, hubby does it when he is home, but i think he thinks he is obligated (well he does think that cuz i MADE HIM THINK THAT DAMMIT, lol      

[angieskidney]

some people ask .. some just assume.

I would rather people ask me questions even if they come across as nosey because I understand they are curious.

Some of my friends and family has asked:

"Are you on a list?"

"Why did you lose your last kidney? Was it from drinking or did you take drugs or something?? What happened?? Why didn't it last???"

"Why doesn't your family give you a kidney? Can't they?"

"You live alone with your health?? Who takes care of you?"

and then other people I hear behind my back or else over heard just outside of ear shot or someone tells me what someone else has said:

"she doesn't need the dialysis taxi cab pulled right up to the curb at the door! She is on dialysis! Not like she is in a wheel chair or anything that severe!"

And others:

"You need help! I mean, how can you even lift the vacuum cleaner? It must be hard for you!"

"What is that on your arm!?!?"

"Are you pregnant?" (while on PD)

Well maybe you are gaining weight because you are not eating right! Maybe you should eat whole wheat bread and more fuits and veggies and drink something healthier like milk!"

"How come you get so tired so easily?"

"What is wrong with you? You act like an old woman!"

[coravh]

Wow, I wish I had friends that were that curious and asked that good questions. I had many friends that were completely clueless and made a lot of assumptions. Like I was lazy and not a good friend, not that I was sick. Your friend sounded like he was on the ball. I still have friends that want to know when I can stop the anti-rejection meds. No matter how I explain it (and I'm good at explaining) they just don't get it and suggest that if I really worked at it, I could get off the drugs.

When I was on dialysis I had a lot of apparently intelligent people suggest that I eat a lot of soup. That would be a way to get around my fluid restriction. "Soup isn't fluid, is it?". Yeesh.

I have very few friends that I could actually talk with this about and who asked me relevant, intelligent questions and who were actually interested in the answers. I can see how it would be irritating to have to talk about the delays for you, but it seems to me that is actually better than someone who doesn't really care or can't think clearly enough to realize how important it is to you.

I think a lot of my friends were afraid to talk to me about it because they were afraid that I was trolling for a kidney. I even had a number of people say "I'd give you a kidney but......." Why not just say that you don't want to help me and have done with it? That was my pet peeve.

Cora

[angieskidney]

Wow, I wish I had friends that were that curious and asked that good questions. I had many friends that were completely clueless and made a lot of assumptions. Like I was lazy and not a good friend, not that I was sick. Your friend sounded like he was on the ball. I still have friends that want to know when I can stop the anti-rejection meds. No matter how I explain it (and I'm good at explaining) they just don't get it and suggest that if I really worked at it, I could get off the drugs.

When I was on dialysis I had a lot of apparently intelligent people suggest that I eat a lot of soup. That would be a way to get around my fluid restriction. "Soup isn't fluid, is it?". Yeesh.

I have very few friends that I could actually talk with this about and who asked me relevant, intelligent questions and who were actually interested in the answers. I can see how it would be irritating to have to talk about the delays for you, but it seems to me that is actually better than someone who doesn't really care or can't think clearly enough to realize how important it is to you.

I think a lot of my friends were afraid to talk to me about it because they were afraid that I was trolling for a kidney. I even had a number of people say "I'd give you a kidney but......." Why not just say that you don't want to help me and have done with it? That was my pet peeve.

Cora

Oh don't get me wrong! Not all my friends understand! Let me tell you of one story of a man friend of mine. He is a University student. Not a kid neither. Born in 1966 so he should have some smarts right? I tried to explain Peritoneal Dialysis to him and explain where the Peritoneum to him with the aid of his biology (yes, he was inuniversity level Biology so he should understand this pretty easily right??) text book.  He takes the book and says, "I got a better diagram for you than that full body one" and turns to the next page where it shows a diagram of a kidney! Yes, that is right! He didn't understand that people are on dialysis for LACK of a functioning kidney!

Now it all made sense why he was the one who would tell me to eat whole wheat and that I should NOT listen to the doctors who tell me to do dialysis! He kept saying I should STOP dialysis and just take herbal supplements to encourage my failed TRANSPLANTED kidney to work again!  Yes, you read that right! He felt that if I stopped dialysis and just did something right (in his mind that was take herbal supplements or eat a certain diet) that my kidney would work again even though it was already rejected and not my original kidneys!!

So yes, don't get me wrong! I do get the people who don't understand no matter how simply I try to explain it!

[livecam]

ESRD is not a super common disease among the general population.  I had heard of dialysis before getting sick but it was one of those out of sight out of mind subjects that had no relevance to me or those around me.  The ignorance is kinda funny in a way.  Anyone who suggests herbal supplements will cure organ failure would learn otherwise very quickly if he or she were to become sick.  This disease really has it's extremes where a person can go from being healthy and independant to unhealthy and dependant on doctors, nurses, machines, and an invisible list and then with a magic phone call back to being healthy and independant again.  I really hope that research and technology turn this disease into something where dialysis and transplant aren't the only options.  Some day we'll see repaired kidneys and newly built kidneys.  I hope that day isn't too far off.

[coravh]

Oh don't get me wrong! Not all my friends understand! Let me tell you of one story of a man friend of mine. He is a University student. Not a kid neither. Born in 1966 so he should have some smarts right? I tried to explain Peritoneal Dialysis to him and explain where the Peritoneum to him with the aid of his biology (yes, he was inuniversity level Biology so he should understand this pretty easily right??) text book.  He takes the book and says, "I got a better diagram for you than that full body one" and turns to the next page where it shows a diagram of a kidney! Yes, that is right! He didn't understand that people are on dialysis for LACK of a functioning kidney!

Now it all made sense why he was the one who would tell me to eat whole wheat and that I should NOT listen to the doctors who tell me to do dialysis! He kept saying I should STOP dialysis and just take herbal supplements to encourage my failed TRANSPLANTED kidney to work again!  Yes, you read that right! He felt that if I stopped dialysis and just did something right (in his mind that was take herbal supplements or eat a certain diet) that my kidney would work again even though it was already rejected and not my original kidneys!!

So yes, don't get me wrong! I do get the people who don't understand no matter how simply I try to explain it!

The scary thing for me is that most of my friends are university educated. I had one friend who is a physiotherapist wonder if I had a larger bladder would I  be able to drink more. This is the same person whose father in law became a diabetic because he  had to have his pancreas removed. When I told her I might get a pancreas transplant she was shocked to find out that if I had it I wouldn't have diabetes any more.

As far as kidney failure not being that common, that's not all that true. It's just not a sexy disease. Australia had an ad campaign a while back. Apparently one in 3 Australians is at risk for kidney disease. Their ad was "Are you one in three? Check your wee!".

Cora

[angieskidney]

Apparently one in 3 Australians is at risk for kidney disease. Their ad was "Are you one in three? Check your wee!".

Cora

That is sooo catchy

[hyperlite]

Angie that comment "why do you act like an old woman..." that reminds me of just before I started dialysis. It was in the winter time just around christmas, and about a week before I started (and knew that my kidneys had failed) I was out playing pond hockey with my little brother and his friends. Well I was feeling like absolute shit as you can imagine, and I needed to sit down and take a break every 10 minutes because I felt like I was going to pass out. Well my brother (being the good little brother that he is) kept making fun of me, by saying stuff like: "You are worse than grandpa" and "You are soooo out of shape"...etc. But it all made sense when I was rushed to the hospital about a week later to start dialysis. Some people eh?

[goofynina]

Happend to me too Hyperlite,  I tried to babysit a little girl and she wanted to go for a walk,  (i wanted to stay on the couch) but i figured what the heck,  tried to walk around the block,  got 3 houses down and i thought i was going to have to have her go home and call the ambulance, but i was able to make it back to the house (Thank God) and i told the mom i wouldnt be able to watch her,  it was so sad, broke my heart, i had a daycare for the past 13 years, took care of kids, went on field trips, did crafts, had a blast, and here i couldnt even walk 1/2 a block, but i am better now, still cant walk like i used to, but i am doing better, and i am thankful for that much....Good Luck to you and i am glad you are doing better as well..

[Rerun]

People ask me if I'm on the list for another transplant like you go sign up for it.  You just go sign you name.  I tell them "It is not like a cookie exchange party" you have to go through a lot to get on the list.

[kitkatz]

People ask me if I'm on the list for another transplant like you go sign up for it. You just go sign you name. I tell them "It is not like a cookie exchange party" you have to go through a lot to get on the list.

Yeah Rerun. What is with that anyway?  Like I just tell the doctor I want a transplant and wham it will happen overnight.  Where DO these people get their ideas.  I try to be a goodpatient advocate when I talk about dialysis and take time to explain and answer questions.
   Sometimes I want to get sarcastic and let go, but I usually don't.  People really get shocked when a warped sense of humor comes out of your mouth about dialysis.  So I save my smart mouth about it mostly for here.  You lucky people, you!!!
I am going to write my smart ass comments to the questions I wrote later in another post.

Katherine
P.S.  My first quote and it worked!!!!

[goofynina]

You go girl,  i still am trying to figure out the thing, lol

[kitkatz]

The Smart-Ass Answers

Are you on the transplant list yet?
Nope

Why are you not on the list yet?
 I just have not run down to the hospital and signed up for it yet.

Why aren't you on the list then?
You know I really don’t know why I am not on the list.  It’s not like I can go down somewhere and just sign up onto the UNOS list at Target. You think kidneys could come on a gift card?

Don't you have anyone in the family who can give you a kidney?
Like I do not have enough guilt from the family already, I need to add to it?

Can a friend give you a kidney?
My friends?  Hah!  My friends are the kind that will be sitting with me in a jail cell saying “Gee that was fun. Can we do it again?”

How long is the wait for a kidney?
Feels like flippin forever!

Can't you quit dialysis if you want to? Aren't you healthy enough?
Sure if I want to keel over in two or three days and die! Are you sure you deserve to have kidneys? You have no idea what they do!

Are you still working (surprise in the voice)?
Just because the kidneys stopped working, does not mean I stopped functioning as a productive member of society.

Do you want a transplant?
Hell yes!

Well here they are. The smart-ass answers to the questions I posted.

[coravh]

 

Those are hilarious. I love them!

Cora

[okarol]

Except for a fistula, if visable, there's no outward signs that someone is a kidney patient. I think people don't have a clue what it's like. I never knew anyone with kidney problems, or on dialysis, except for the polycystic kidney disease that my dad passed on to his kids. And my granny was on dialysis about a month before she died. She hated it, made her feel worse, so she quit. I never realized what it meant - that without it she had a limited amount of time. With 300,000 people on dialysis in the US, you'd think there would be more awareness, but it seems that a large portion of the general population have no idea!

[KT0930]

Another reason for the lack of knowledge and/or understanding among the general population about ESRD is because, at least in the hemo units I've been in (two in two different states), the majority of the patients are senior citizens. Most people who are out making noise about breast cancer, autism, and other "glamorous" diseases (not that those aren't deserving of funding, they just are all in the news right now) are the people who are in their 20's to 50's and don't think that ESRD can happen to them. This is just my  take it or leave it.