Your quality of Life as a Kidney Patient

[Lillupie]

 This is a question and answer that will be in my book. As a patient myself, I did not want dialysis because I thought my quality of life was going to be down the drain, really now on dialysis my quality of life isnt as bad as I thought it would be. Would any of you mind sharing your thoughts and feelings on this as well?

How do you feel about your quality of life since starting kidney dialysis?
Or since you were first diagnosed with kidney disease?

*Please note or remember by answering this question that this question along with your answer will be in my book.
Please so that I can verify one person from the next, give me a false name, your age, and occupation (so someone else can relate to you).

Feel free to PM me.

Lisa

[MooseMom]

I have fsgs, and it has destroyed my life.

I was diagnosed 6 months after I had my baby back in 1991.  I was terrified that I wouldn't live long enough to see my son grow up.  I was told that another pregnancy would damage my health and might possibly kill me, so I had a tubal ligation.  Since I knew I wasn't going to get to have more babies, I quit my job that I loved so that I could devote all of my time to my one child.  That child ended up being autistic, and I'd bet the north forty that fsgs made him autistic.  As a matter of fact, I contacted a leading university to ask if maternal kidney disease might be a contributing factor in causing autism in a child, and I was told that reduced renal function was one element they were investigating in their autism research.

I remarried in 2004, and just a few months after that, we discovered that my renal function was far worse than I had thought.  My previous doctor had not followed my degeneration, so this came as a shock.  My new marriage has known little more than worry and terror.  Now I am facing dialysis.  My greatest nightmare is coming true.  My son lives abroad, and I will be stuck here on dialysis.  I feel like my future has been stolen.  I have not yet been able to come to terms with this disease, and I truly don't know if I ever will.

If you have further questions, feel free to PM me.

[kitkatz]

How do you feel about your quality of life since starting kidney dialysis?
     I still teach full time, eleven years after starting hemodialysis.  My quality of life was on the down slide after nine years of it. A change in centers and a change in BP had me feeling horrible.  I changed to a nocturnal dialysis setting and the BP went down, so did phosphorous levels. The cloud I was sitting and living in went away. My brain could function almost normally again.  It is a long haul to do eight hours three days a week.  Some nights I struggle to put my mind in the right frame to do it.  But I go, every treatment. 

Or since you were first diagnosed with kidney disease?
     When I was first diagnosed with kidney disease I thought life was over. However I seem to be a fighter and once I got my nose above water and got some information on dialysis and what it was all about, I made decisions to live my life.  By God this damned disease is NOT going to take away my life! I chose to go back to teaching as soon as possible.  It meant going back to school for a new credential and a change in positions.  I have been successful at it.  My husband and I travel around the United States frequently.  I often vacation on my own, either visiting relatives or friends.  I let my social worker know when I am going and dates for dialysis are set up.  It is easy if you stay on the people who are going to do things for you. I have lived long enough to see my kids grown. One isgraduating from college in May. I will travel to Wisconsin to see her graduate. My career goals have been reached as I ma happy in my teaching position and am good at it.

I think the biggest thing that affects the quality of life is the quality of the information you are given  through out your ESRD progression.  I was thrown into the role of a dialysis patient very quickly, overnight with little information given to me.  I had to call memberships services at the hospital and demand that information be given to me. 

If you are wise, dialysis will become a part of your life and will not consume your life.



Kitkatz, 47 years old, 11 year dialysis patient

[cdwbrooklyn]

Okay, let me see if I can think back 11 years ago.  I am now 42 years old started dialysis when I was 31.  I’m female.  Screen name: cdwbrooklyn

Well, when the doctor told me that I would need dialysis, my heart felt to my feet.  My imagination went wild.  I thought I would need a machine attached to me literally.   I remembered being in a state of denial.  I told myself if I just eat correctly and take a lot of herbs, I will feel better.  Well it worked for a few months and than I found myself losing loss of weight to the point I was very skinny.  People thought I was on crack.  I became very scared and decided to do dialysis.   

At first I was very angry and would snap at a drop of a pen.  Then, I started to feel sad about myself.  I would cry going to dialysis every time for almost 6 months.  I did not want to be there but I knew in order for me to feel better, I have to dialyze.  Anyhoo, I started to feel better as time went on.  I started to get stronger and gained my weight back until I became my old self again and I started to live life better.

Now don’t get it twisted, I’ve suffer a lot of different mood swings.  Even to this day I still suffer with a lot of different mood swings.  Sometimes, I feel so depressed that I just want to end my life.  However, most times I’m dealing with my situation.  I’m always thinking what if I did not have to be on this machine.  How would my life be today?   

Nonetheless, I have accomplished a lot of things on dialysis.  Just to name a few, I’ve went back to college on dialysis.  I’ve taken online courses and completed my Bachelor’s in 3 years.  Dialysis was a place where I did my homework and studies while I was on the machine.  It helped me to stay focus as I was not going anywhere for three and half hours.  Also, I’ve moved to a better apartment, two classes up from my first apartment.  After receiving my Bachelor’s, I got a career job that I love so much, which is one thing that keeps my mind off of dialysis.  In addition, I have been in a praise dance group (church) and I direct one going on two years now.  I’ve been in a drama group and have directed one for over a year.  I’ve traveled to Nassau Bahamas for four days, to Chicago, Albany, Maryland, and Georgia (US States, which are 500 to 1000 miles from where I live) to enjoy my family and friends.  Not once did I think about dialysis and yes I’ve missed one day because I did not want to ruin my vacation.  I was okay because I would schedule myself to go the day I got back from my vacation and things work out find.  However, I do not recommend this because everyone is different.  Anyhoo, I’ve done so many things while on dialysis that I sometimes forget I’m on dialysis until its time for me to go again. . 

You’ve asked if my life got better while on dialysis.  Well dialysis is what you make it.  I had a wonderful life so far and with faith in God, I can only know I will continue to have a good life.
Now, with that said if I can only stop comparing myself with my married friends and more children, I think I can make it though each day.     I come to realize that dialysis is not that bad after all.  Yes, I come across different mood swings and I wish I did not have to be on dialysis a lot of times, but I’m alive and living my life.  With one day at a time, I’m sure we all can beat this thing.

Good luck on your book. 

[sullidog]

When I got the call to come to the hospital on the morning of may 20, 2009 I didn't cry my heart didn't stop, I just said dog on it, I'm not going to let this defeat me. My quality has been up and down but I'm just taking one day at a time because that's all I can do. I do get frustrated and down from time to time but I have a pretty positive outlook. I wish I could eat the foods I love every day, but I've gotten use to it. I have lost touch with a few friends since my kidney failure but the ones that have stuck with me are the ones who truely love me and care about me. I had a big fear of needles, but dialysis has helped me overcome that fear.
Troy

[FindingNeverland]

How do you feel about your quality of life since starting kidney dialysis? Or since you were first diagnosed with kidney disease?

I'm 26, female, I was diagnosed with renal kidney disease at a young age. My kidneys were damaged by the full body radiation and chemo therapy treatment I received after finding out I had Neuroblastoma at the age of three. As a kid it didn't really effect me which is the great thing about being a kid, ignorance is bliss. It wasn't until I was 17 when both my kidneys completely failed and I had to start peritoneal dialysis. It was hard, I missed a lot of school at first and when I was in school I felt like an outsider. I couldn't go places or stay over at any of my friends because I had to be connected all night and a short period during afternoons. Luckily it only lasted six months, we found two matching donors and when they decided who would donate first my kidney transplant happened pretty quickly. Nine years later my transplanted kidney is now failing. This time it has been an emotional roller coaster, that fragile piece of hope in the back of my mind that this kidney could last for a very long time has now been smashed. Plus I'm at an age where pondering my own mortality rate scares the crap out of me. There's a lot I want to see and do in my lifetime. I am currently doing hemodialysis (since this January), it's more convenient for me at the moment... minus the inconvenience of all the extra fluid I've taken on and we've been having a hard time getting off and the cramping, so I've not been able to keep up with my daily activities. But luckily I only have to deal with this for six months and I'm very grateful because I feel like my life has been shortchanged. My inability to do much around the house has caused some strain on my relationship with my significant other, and I don't want people to get the wrong impression, it's just that now he has to go from working 10-12 hours a day to coming home and taking care of me, our dogs, and the house. That's a lot and I often feel quite bad about it. I didn't get sick on purpose but I can see how it effects everyone around me so its hard not to feel like somewhat of a burden. Being sick is one thing but how you continue on living while being sick is another. With that said, my life was much better after I received my transplant.

[natnnnat]

Hi Lillupie
I saw this question and wrote a reply and kept it till I could join the board.  At that time, I put your question to my husband, and typed in what he said.  Here it is:

I was told I had renal failure while I was on my first dialysis session.  My reply to that, I think my reply was “no sh**.” 

After my first dialysis session, I felt great. Really, really good.  The best feeling I’ve ever had.  I’ve never felt anything before or since that felt that good. Because my kidneys were shot for quite a while before I started dialysis, long before I went into hospital.  So there was a lot of toxins in my body, so when it got cleaned out, it felt really good.

Later, it usually made me tired for a day after, very tired and worn out.  Drained out.  There wasn’t much free time between dialysis.  It wasn’t real good for the first six months to a year, and then I gradually got used to it, and I got used to it because I knew I had to.  I knew that I had to find a quality of life on dialysis because I was on it for an indeterminate time.  You can’t be unhappy for an indeterminate time, it makes it worse. 

Quality of life was very good once I got used to dialysis.  Cos I rebelled against it first of all, cos I had a life and then … I didn’t  But then I decided to just get on with it, and that’s what I did.   Dialysis wasn’t so bad.  There are worse diseases you could have than renal failure.  Its scary but you can have heart trouble, that’ll kill you, or a brain tumor, or liver failure.  A fellow renal patient told me that.  “You’ve picked a good disease to have, you could have worse.” 
Gregory, 19 years old and a concreter when his kidneys failed (now 42 and a library technician)

[Dameeka]

This will soon be my one year on hemo and it is just now setting in and I am still very angry at the situation, I have been put on anti depressants and I see a counselor, I am trying to get myself right. This is my life and I have to come to terms with it. I have such a hard time sitting in that Darn chair, i just want to be sleep my whole treatment. I think maybe if I was home I would be much better in my own environment. I am just not sure about anything anymore. My quality of life I just don't know whether i'm coming or going sometimes. I just want to get to that place where it's ok.

[Jean]

I am not on D yet. When I first found out I was in stage 4, I said. What??? What is that??? For awhile I was convinced I would just die and soon, but, now, 2 & 1/2 years later, I have come to accept it. My only real symptom right now is the darned fatigue. I am 1/10th of a point too high to get an Epo shot. I am 71 years old, so its not like I worked when I was diagnosed, so thats not a problem, and the only bad so part far is that my brain and body no longer talk to each other. As in, my brain makes a list of all the things I will do today and my body says, not a chance. stupid. Otherwise, its not too bad.

[MooseMom]

This will soon be my one year on hemo and it is just now setting in and I am still very angry at the situation, I have been put on anti depressants and I see a counselor, I am trying to get myself right. This is my life and I have to come to terms with it. I have such a hard time sitting in that Darn chair, i just want to be sleep my whole treatment. I think maybe if I was home I would be much better in my own environment. I am just not sure about anything anymore. My quality of life I just don't know whether i'm coming or going sometimes. I just want to get to that place where it's ok.

Dameeka, do you think you could do NxStage?  Many people on IHD swear by it and love the fact that you can do it at home.  Good for you for addressing your emotional difficulties via meds/counselling.  That's not easy to do, and you deserve all the help you can get, so well done you!

[cariad]

As a matter of fact, I contacted a leading university to ask if maternal kidney disease might be a contributing factor in causing autism in a child, and I was told that reduced renal function was one element they were investigating in their autism research.

Do you know of any papers that have been published on this, MM? I would love to read about it. Do you know what your GFR was way back then? (Hope you don't mind my asking.)

I had a creat of roughly 1.8 with my first and 2.6 with my second (which translated to a GFR of around 33 with the first and 20 with the second).

I'm sorry that you feel like fsgs cheated you so much. It hurts to see our kids struggle.

[kitkatz]

In my life I do not know if being on dialysis has become an OKAY thing to be doing for the rest of my life.