I've been on dialysis for more than a year now and one thing that continues to confuse me is my evaporating relationship with friends.
I now I've had to cancel at the last minute and I'm certainly not the person I once was, but I can't help feeling that because of that I'm losing touch with some of my closest friends.
Before starting dialysis, I remember reading that this can be one of the consequences. People have difficulty dealing with friends with a prolonged illness simply don't know how to deal with the situation.
Has anyone experienced similar? And have you found a way to communicate to these people that you still are, basically, the same person?
I often find myself blaming myself and this only exagerates and psychological lows I already experience.
Any tales of similar exeriences would be welcome.
Thanks, Jane

Hi! yes unfortunately loss of friends is not uncommon with any chronic illness. some of mine were very far away. I wrote each one twice and then let it go. Cancelling out can really be a problem. Once you have grown into your diagnosis you can plan with more assurance. Really good energy management helps, this means making sure that you are rested before the event and plan to have time to rest afterwards.
Also sticking to you diet and watching your fluids so that you do not come on to dialysis with more than about 2.0 kilos is the best, I actually find that 1.5 kilos works better for me. That way dialysis does not wash me out. thus reducing the number of times you have to bow out of activities.
You will find that some of your friends will return but the best ones are the ones that never leave.
You might check with the national kidney foundation about videos you can borrow and maybe have an education night for you friends. that would help that understand that you are not contagious nor is your life over. Just in a tempory holding pattern while you adjust.
I hope this helps. email me if you want more.
Nancy

Not only friends, but relatives, too! My parents have become very distant and don't want to know anything about the risks and shortened lifespan of dialysis. They used to get mad at me because I didn't have the energy to help out around the house. Things haven't really improved much, but my attitude has changed-- I stopped trying to get their approval. I have to live my life the way that's right for me, and not worry about what they think of what I'm doing. In the end, the only one you can be really sure of is yourself.

Hi,
The same thing happened to me. Friends flew the coop and even some of my own family members. But I've always believed true friends are loyal and they are. How long did you have a lack of energy before becoming a kidney patient? I've never been able to work a full time job without much difficulty. Before that, I struggled to get through school, because I could not memorize well. I felt people would view me as lazy. I never knew what was wrong with me. When I found out I had kidney disease everything made sense.

I've ALWAYS had concentration problems. If I sat anywhere near a window in school, I'd be looking out of it instead of doing my work. I used to be in a daze the whole school day, then go home and cry because I couldn't understand how to do my homework. It got so bad in high school that they put me on 2-week notices, which is where they send a report home to your parents every 2 weeks. Well, that's just like getting a failing report card every 2 weeks instead of every three months-- hardly a stress-reducer! I was always getting grounded for bad grades and never got any help-- I was forever being told I wasn't "working up to my potential!" (Never mind the fact that they couldn't possibly KNOW what my potential was if I never worked up to it!) So when I got kidney failure at the age of 23, it suddenly made sense why I had always had a hard time concentrating. I never got an apology from anyone about my 'laziness', though. Typical. I haven't gotten too much support for being on dialysis, either. My thought processes are clearer now than they have ever been, and I have been able to teach myself the math that eluded me in high school. I sometimes bring a math book with me to dialysis. I've noticed that whatever I study while I'm on the machine, I seem to retain easily. I wonder what I could have accomplished in school if I hadn't had to slog through the haze every day. Nobody even thought of checking to see if there was a medical cause for my problems at school.

Hi BeBo & DialyzinDar:

Can I ask what brought about your kidney failure? In inquire because of your comments on lack of concentration, etc., in earlier years.

Were you diagnosed in advance, or was the onset of kidney failure a surprise?

For the record, mine failed from Polycystic Kidney Disease (PKD) more than 20 years in advance, something inherited from my father.

Have your doctors diagnosed a direct link between you type of kidney failure and lack of concentration? My guess is that they've been vague, at best.

Thanks for your contributions.

Mike

I was always in the emergency room with vomiting when I was a kid. I used to throw up at least once a week, but my parents stopped bringing me to doctors after they kept saying there was nothing wrong with me. Whenever I got sick, my mother just gave me two teaspoons of Coke syrup, which made me sleepy and masked the problem.

I had one strep throat and UTI after the other, and I used to get mega-doses of penicillin. When I was 17 I got pregnant and hid it for 7 months because I didn't want an abortion, which my mother would have made me get. I had an Rh incompatibility and started spilling alot of protein in my urine. I actually lost weight during the pregnancy and ended up having a c-section. Then about seven years later, my GYN told me that I couldn't use the Pill anymore because of all the protein in my urine. That was in 1985, and by 1988 I was in complete kidney failure.

No blood tests were ever done on me when I was in grade school, so nobody knew about the kidney involvement. I wonder if the vomiting and passing out was related to the kidney disease-- it's kind of unusual for a 5-year-old to be throwing up and passing out on a regular basis.

Howdy

Wow Dar, you had those goofy Strep throat enfections too? I constantly had those in high school. They were how I was diagnosed with IGA nephthropothy. I don't get sick with from the strep I get sick with nephritis when my body starts pumping out white blood cells.

That was when I was 13. I was constantly sick til 19 with strep. Things cooled down with the sickness then. My creatine (I cant spell) was slowly increasing, but I was ok. Then November of 99 i got got sick and my kidneys just gave up.

Wow Jim, sorry to hear about your troubles. I have no idea why I caught so many strep throats-- thank God I don't get them anymore, because now I have these pits in the back of my throat that capture the staph and pop out these little white things that look like pearls(and smell REAL bad!). I had one of them tested about 10 years ago and the lab said they were full of strep. A few other patients I've met have the same thing going on, but I don't know what causes it. At least I don't get the sore throat!

Hi Mike and all,
My kidneys failed with no advance warning to me. I had protein in my urine but the dotor I saw didnt explain to me the possible meaning. I was very asymptomatic as far as feeling any different then I had always felt. I felt I was just getting older and was out of shape. I went to a gym and started an exercize program and felt much better in 3 mo. and then when I was feeling the best I had felt I had warning signals of the approachng problems when I had to urinate fequently at night and then had an anemic attack one day. Another prominant characteristic I had growing up besides the memorizaion problems was a lack of endurance. I actually was good in sports, but had poor endurance. When I got older I instnctively felt something was wrong with me because i did not have the stamina to work a full time job. Or if i stayed out too late I'd feel sick the next day.

I was diagnosed with A.D.P.K.D. in my late twenties (I'm now in forties). I knew eventually everything would change, but one thinks tomorrow will never come! Started feeling lousy a few years ago; tiried short of breath, problems loosing weight, poor concentration. Had to change pcp. Very little kidney function left; extremely anemic, which accounted for my feeling terrible. On Epogen, feeling better for now. When I told people what was going on they were very surprised. They couldn't understand how someone could be walking around in kidney failure. A few people even asked if I was sure! I have decided to be a sort of show and tell to friends. Some people have insisted that catheters are the norm. so I have to show them my fistula and explain. Others treat me as if I were dying, and pity me. Treat yourself good and don't worry about everyone else, that is what works for me!