us questions for everything

[st789]

Do you guys think because of our chronic conditions, we have to be on top of our health; therefore, we have to ask many questions in every decisions we made in our life such as our diet, exercise, medications, etc.,





EDITED:Moved to proper section - Sluff/ Admin

[Falkenbach]

Yes, very much so. Right down to what kind of work I feel I can do, what type of jobs to apply for now that I have my tx. I am careful about things that other people don't question twice - such as over the counter pain killers. I will also never take any herbals or supplements without checking with my nephrologists, and in fact, the literature they sent me home with recommends this also.

I'm not taking any chances of something interacting in a negative way with my immuno-suppressants.

[KT0930]

I've dealt with this most of my life, so it's not really a "change" for me, per se, but I have noticed over the years that I'm much more careful and aware than the typical healthy person. The only over-the-counter pain med I ever take is Tylenol, I NEVER take herbals, and I very rarely take anything for colds/allergies, unless they're just absolutely unbearable.

As for activities, I was much more active when I was younger than I am now (who wasn't?). As a child, my parents never let me use my illness as an excuse. I wasn't allowed to participate in contact sports such as karate, football, wrestling, and I had to be very careful during the gymnastics section of PE class. As I've gotten older, I've gone ahead and gone water skiing, parasailing, and snow skiing. If it was something where someone else was in charge, such as driving a boat, I just made them aware and tell them to take it easy on me, and all of them have been very good about that.

[stauffenberg]

Having been a type 1 diabetic since I was 14 and a renal patient since I was 44, I was thinking the other day that if I were suddenly to be magically restored to normal health, I would not know how to live!  My existence has been so burdened by medical rituals, calculations, clock-watching, doctors' appointments, diagnostic tests, diets, injections, medications, etc., that I have never known, apart from early childhood, what it is like simply to live, to do what I want just because I wanted to, not because I had to.  When I spend time with other people I always find myself watching with amazement the power, grace, ease, and spontaneity with which they can live, eating when they feel like it, not having to worry about medication schedules, going off at a moment's notice without having to pack a bag full of medical devices.  I truly envy the feeling they have that their body is an extensiojn of their will, their friend and servant, rather than their treat and curse.  While their health allows them to think that they can't ever get sick unless they deliberately abuse their bodies, I go around through life always looking over my shoulder, waiting for the next medical catastrophe to fall out of the sky on me.

[Amanda From OZ]

I seem to question everything and anything my doctors say, and if they don't tell me i will take my folder and read it myself.   

I would of been voted the most annoying patient at the hospital dialysis ward. 

So yes i think when it comes to my help, i seem to question everything, the other aspects in my life...not so much.

[kelvinzero]

Stauffenberg, you are right about how you characterize the "unsick".

I call them "mortals", since we are artifically sustained and hence temporarily immortal.

We metaphorical draculas and frankensteins, living off the blood and organs of others. (lol)

[Slywalker]

Amanda from Oz - I too think I was also voted most annoying in the hemo clinic.  When I first started they started giving me shots in my line - and I practically jumped out of my chair because no one told me what was going on and what the med was and who had prescribed it, etc.  The clinic worker was scared off  and had to come back with the charge nurse.  I also told them I wanted to at least meet the doctor who prescribed the meds they would trying to "shoot" me with.   And I was always very vocal when one of the workers was being "rough" with my catheter.

Yeah, I've always been one of those annoying patients who asked a lot of questions, didn't just take a prescription without knowing exactly what it was and why a doc was prescribing it, etc.  Whe I was doing chemo for cancer my doctor tried to presribe an anit-depressent because I mentioned I was getting pretty tired - I was working while I was doing treatments - but he never seemed to know that - duih = that is why I was tired.  I asked him why he had has script pad out and he said - well, you must be getting depressed.  NO, I said, I was just getting tired.  Geesh!!!!

I could go on forever about this - but I think it is our responsibility to educate ourselves as much as possible about our diseases/conditions and YES, always question.

Sandyb

[carolynt]

I am a newbie to dialysis started on June 27 via emergency room.  I knew it was time but like alot of you I as in denial.  My husband and I had to cancel our vacation.  I was losing too much weight and also nausus (sp?) every day.  So here I am going to dialysis three days a week.  I have a port in my chest and they just started using the graft and hoping it works so I can eventually take the port out and take a REAL SHOWER.  I do the shopping and some cleaning in the house and go out on the weekends with other couples.  I have even been out dancing and have had some wine.  Are you all trying to lead a normal life except on the days when you have dialysis and any helpful hints how to stay sane.  I do not know how people get use to this routine.  Every Tuesday, Thursday and Saturday is like a pain in the butt.  Let me know your thoughts.

Carolyn

[livecam]

I am a newbie to dialysis started on June 27 via emergency room.  I knew it was time but like alot of you I as in denial.  My husband and I had to cancel our vacation.  I was losing too much weight and also nausus (sp?) every day.  So here I am going to dialysis three days a week.  I have a port in my chest and they just started using the graft and hoping it works so I can eventually take the port out and take a REAL SHOWER.  I do the shopping and some cleaning in the house and go out on the weekends with other couples.  I have even been out dancing and have had some wine.  Are you all trying to lead a normal life except on the days when you have dialysis and any helpful hints how to stay sane.  I do not know how people get use to this routine.  Every Tuesday, Thursday and Saturday is like a pain in the butt.  Let me know your thoughts.

Carolyn

Here are a few hints Carolyn...now that you are on dialysis and adapting, schedule another trip possibly a weekend trip to start and then more later on when you are in a position to arrange dialysis somewhere distant.  Keep going out to dance (I can't advise on the wine) and try to do the things you've always liked.

Get to know your body and do only what you feel comfortable doing.  Get all the rest you want and don't feel guilty about it.  Be active when you feel like that as well.  Staying within your diet and fluid restrictions go out and have a nice dinner or brunch regularly. 

And most important of all... get yourself on the transplant list...and find out what hubby's blood type is.  You should be looking at him with pointed teeth and imagining a few tiny scars on his side.

Good luck!

[carolynt]

Thanks for the great tips.  I just put myself on the transplant list (I need to meet with the transplant team first).  My husband has offered his kidney but in reality he is overweight, has high blood pressure and high cholesterol so I dont think they would let him be a candidate even if his blood type matched and but I still give him a hard time in a good way.  I just started waking every day since I am out of shape - I may be thin but I have no muscle tone and this is a good start for me to get my rear off the couch watching Judge Judy.  Well any other tips you can send to make sense of all of this I would appreciate it.  Still have to get use to this but I know others have been on dialysis for years so if they an do it I can too.