I met/know four people recently who are either on dialysis or about to start dialysis and were not told they had other options for treatment other than hemodialysis. They are 32-65, have full time jobs, are active, have had no previous abdominal surgeries and appeared to be good candidates for peritoneal dialysis. I have also seen the newspaper article that originated in Detroit and has been published in other papers around the country on peritoneal dialysis and the possible bias that may exist with this treatment. In my further research, I have found many patients do very well on peritoneal dialysis and some patients have been doing it successfully for over 20 years! If options are supposed to be discussed with patients and healtcare professionals have the patient's interests at heart, why weren't these people told about other forms of treatment available???

I had the same problem, I needed to get into a home hemo program. It wasn't discussed with me because the unit didn't offer it and didn't have connections with a unit that did.

All patients are suppose to have choice but if the center you go to does not provide the choices your rights are redundant.

I inqired about home hemo early on as soon as I heard about it. I was appalled by the unclean conditions in my unit and the substandard care, patients crashing and cramping and crying out for help repeatedly yet being ignored and verbally abused, the station being kept freezing cold, the high ratios making it impossible for techs to so much as get us a glass of water and poor level of education/training of techs causing them to botch txs. repeatedly (botched txs. = pain and serious problems). My doctor simply told me no home hemo program was available as, "No one wants it". I'll never forgot how trapped I felt and how I thought to myself at that moment, "Well what if "I" want it?". He witheld from me the fact that I could go to another unit 75 miles away that did offer the training for home hemo. Some doctors obviously withold this info. on purpose.

I'm fortunate that I go to a good unit! However, no one discussed options until after I started dialysis. Actually the first few visits (when I was ill prepared to assimilate any info.) I was hit from every direction with options. I asked why no one had approached me before, when I had time to think, but did not get any answer. My doctor told me that I needed to get a fistula to do hd, and so I complied. I wasn't told of other options. The fistula is in my upper arm, and was a hellish same day surgery! I also wasn't to thrilled that no one told me about hd. I had to search the web, and find my own reading material, and decipher it. Luckily I'm able to do that; many patients aren't. We need to have education and treatment options explained to us prior to starting dialysis, not after!

Do you suppose your docor was anxious to make you a permanent paying customer? Thats how I felt. Nothing was explained to me either. Once one goes ahead and gets the surgery for a fistula or graft that pretty well makes things permanent. I mean, the patient is not going to then jump up and say, "Wait! No one told me about PD or that I could of prepared for home hemo or a transplant". No, its another chair occupied. And this thing where doctors and staff treat patients like dependent children who are incapable of learning about their disease/treatments and unable to do self-care is another thing that should be outlawed. Education should be mandatory. In my opinion its all about dependency..dependency on them for our lives so that we can't get away from in-center hemo.

Now that I'm doing in center hd, I have a care plan complete with "long term goals"! lol They discuss options just about every treatment now! None of these options include staying in center amazingly enough! It seems now, that they have the attitude that I'm "too young", "too smart", "don't look like a hd patient" ect.! Too bad someone didn't tell me before. No method of treatment is perfect, but if you want choice you have to demand it, sadly enough; it won't come knocking on your door, that's for sure!

When my kidneys failed, I was not given any options. I was told I had to have a fistula put in, and was rushed into the operating room. When I woke up, I had a six inch incision in my neck where a subclavian catheter had been put in and a four inch incision in my wrist where the fistula was put in. A year later, I had a transplant. After 12 years, my kidney failed and again, I was told about no other options other then hemo. After nearly three years on hemo and no hope of a transplant, I read about PD. I did a lot of research and decided to persue it. I have been on PD for two months now and love it. Very seldom do a persons kidneys fail over night. The doctor should present the patient with all of their options well in advance so when the time comes, they can make an informed decision that will work best for them.

While at tx the other day I received our monthly newsletter. In it were several copies of information from the company that owns the unit. The information was about "choices" in tx., specifically home hemo and pd. It gave an explanation of each, and contact numbers.
I had been critical of the lack of education, and the fact that units and nephs. weren't providing enough information to patients. I was not given any information at all prior to dialysis. I was apparently not alone, and someone was listening!
Fmc is now starting patient education, and even is even starting a web site for patients so they can be better informed. They are also instituting more snow nocturnal and home dialysis programs. Some of thier centers even now offer in-center slow nocturnal.
I first realized their was a problem when I was only presented with the option of hemodialysis. I was not offered the option of pd or home hemo until after I started dialysis (and already had a fistula). When I asked staff about the other options they seemed to know very little about them, and had little or no information available for me to read. Lin.