I'm wondering if there is anyone on A.net with chronic kidney disease, is on dialysis, or having a family member or loved one on dialysis ?
Someone very dear to me has recently been diagnosed with chronic kidney failure, and has been obliged to commence dialysis treatments. At the time, I knew absolutely nothing about kidney disease, or the treatment of it. I have had to learn a lot, and very quickly; there are many important decisions to make, and at the moment, I feel that we are headed in the right direction.
I have talked briefly with a few other patients, mainly at the dialysis center, but I see a trend there among older patients that rather troubles me.
When this all started about six weeks ago, we were told that it wasn't a matter "if" dialysis would become necessary, but rather "when"; the doctor said it could possibly be six months, even a year, or it could also be "immediately", and that as soon as a few more tests were completed, we'd know a lot more. Within just a few days, we had the answer; dialysis was necessary immediately.
At that point, we had to start making the decisions I mentioned; which type of dialysis being the first; again, all I knew was that people with kidney failure had to do dialysis, but I had very little idea what this even meant, much less how it's accomplished. Then I'm told that there are two different types of dialysis, both of which accomplish the same result, but which are completely different. I must say, that rather surprised me.
The doctor explained that to start out with, in order to start dialysis, the patient would require a "temporary" catheter be "inserted" by a surgeon, and the patient would then receive hemodialysis in the hospital, then would have two more surgeries, one a procedure to "create" a thing called a "fistula" in the forearm, which, after a healing period of 6 to 8 weeks, would be use to do "hemo" on a permanent basis. The other surgery was to place a permanent catheter adjacent to the navel, and leading into the "peritoneal cavity", (which I must confess, I was totally unaware people even had, or even where it was located !) Again, after a 6 week healing period, this can be used for doing what's called "peritoneal dialysis"; ( a quick look on "wiki" explained what all of this was, and where everything is located )
Decision #2 is.........which type dialysis to "go with" ? "hemo"........which entails going to a "center" three times a week, four hours each time; OR..........do we want to do "PD"..........(peritoneal dialysis), which you do yourself at home, (or where ever you may be), 4 times each day, 365, forever.
When I'm making an important decision, (or when I'm involved in helping make a decision), I want to know ALL of the "options", and how everything "works"; (in this case, there's quite a bit to learn, but it's really pretty simple actually);
after much study, the decision was made to opt for "PD". (in about 3 weeks, as soon as the tissue is healed)
Interestingly enough, the majority of patients opt for "hemo"; for a few reasons........fear of infection being the reason most often heard; actually, after carefully studying about both methods, and discussing it with both the kidney doctor, and the excellent R.N.'s at the dialysis center, I really think the fear of infection is more of an excuse, rather than a valid reason. I think the real reason is, a lot of people, especially older people, are just not "confident" that they can do something like this by themselves. But here's the big problem with that decision; people "assume" this, without even bothering to acquaint themselves with how very simple PD is to perform.
I mentioned that I was "troubled"; here's why............I really think about 95% of the patients (and families) learn about the "PD" method from their doctor, probably in the hospital, and probably in a fairly brief conversation; Consider this; I could "explain" to you how to install brake pads on you car, (which is a very simple task), but I seriously doubt if you could go do a brake job yourself, the first time, without some hands-on help; some could, but some couldn't.
You're now wondering, what difference does it make which method you choose to do dialysis; to answer that question, you need to look at what's "involved" with both options; But keeping this in mind........you have just been told that your kidneys no longer work; you have three options..........you can go on dialysis, you can get a kidney transplant, or you can die. One of the three. So at this point, from what I can gather from talking to a few people that have had to make the decision, I think most people just decide to go to the "center " 3 times a week, and let the nurses hook them up to this machine, and spend the next four hours or so, while your blood cycles around from you, through the machine, and back into you. It works; but there are things to consider; how far do you live from the center ! Right next door ? You're much luckier than 99% of dialysis patients ! Most patients live 30, 40, even 100 miles away ! Do the roads ever get snowy and icy where you live ? now you have a big problem ! Cause you MUST get your dialysis; you can't put off til the roads thaw out either.
My friend is only in the second week of Mon, Wed, & Fri at the center; here's what she's already found out; From Mon to Wed is only 2 days; ditto for Wed to Fri; but from Fri to Mon (4 pm to 8 pm) is almost 3 days ! can you hold your breath for 3 days ? Remember, healthy kidneys are cleansing your blood 24 / 7 / 365 ! your lungs are supplying air to breathe 24 / 7 also;
On the other hand, the people doing "PD" are having their blood cleansed 12 out of every 24 hours; it makes a HUGE difference; and you don"t have to leave the house to do it !
I'm thinking, I'm HOPING, someone may have already written a book about all of this; I hope someone has, because I want to read it. I'm also very interested in hearing anyone's experiences that are doing dialysis, or know someone who is. Thank you for reading this.