Hello: this is my first posting.
We are all PKD in my family, my baby brother( 48yrs old) has been told,( he is on dialysis now) his neph wants to remove both kidneys. due to his heart meds (thinners) are causing bleeding. but, he is worried, we know a person can live with one kidney in the body even if not fuctioning well. BUT, no kidneys in the body???? His neph, tells him life will not change from what he now is, with dialysis 3 x's a week. Question: anyone out there know of or talk to anyone with no kidneys in there body, what complications, life expecttions. all the normal questions. i hope someone may have some good suggestion. even the name of a group or person who may be able to give us insight.. We all know the doctors will always tell us one thing, but, somone living with the same situation will tell you the real truth........ thanks in advance to any help !!
Re: help, brother soon to have both kidneys removed
i too think its kind of an odd thing for an actual neph to want to do without having any live donors lined up to simply give him at least one good kidney. is there ANY function at all left between the both kidneys or is everything kind of gone at this point? even "
some' function is better than none when you look at his particular situation ya know? given just his age,i would think his doc would at least want to have a donor lined up before he went ahead with such a radical surgery. his overall condition could possibly worsen if there was still some actual function there just a bit less or alot less than the norm ya know? some parts of the kidneys 'could' possibly still be doing at least "some' of their jobs in there. like i said,some is better than none at all.
just exactly what IS actually bleeding right now(and how severely) that his doc is wanting to actually remove both kidneys,the kidneys themselves,or hemmohragic cysts? by the way,i also have PKD with liver involvement as well so i do know what this disease can do to your kidneys. still waiting for my renal failure to hit here eventually too.
at the very least i do think obtaining a second opinion from another neph who is in no way related to the other neph as in the very same practice or group would be a really good idea right now. this just IS a pretty big deal ya know? just see what another neph thinks about his situation. another neph may have a completley different view or some better ideas than removing both kidneys. its always worth it to at least obtain another opinion when it comes to having any surgery that just seems a bit more unusual than the norm or just pretty radical,you know what i mean? if there was an actual donor who was going to donate a kidney to him when this was performed,now that would be a bit different. but i personally would obtain that second opinion if this was my stage. there are possibilitys of changing his blood thinner dosages too,has that been tried with any success?
a very good place to try and seek out that second opinion would be a good university type teaching hospital that may be within a driving distance from where he lives? these types of hospitals are just a bit above the rest with much more experience in dealing with the worst of the worst types of cases in just about any medical nightmare scenerio,ya know? both my son and i have had to seek out this very type of help from the U of MN here in Mn for our insane medical issues. the docs you see for certain conditions just simply do not all have that very same level of experience within their given specialty or that same level of knowledge of treatments/procedures either. its just a good suggestion for him considering what this other neph is actually considering.
i do hope you can find a good neph to just have your brothers overall condition evaluated and any possible other options discussed before consenting to this particular type of surgery. good luck and please keep me posted. marcia
Re: help, brother soon to have both kidneys removed
Hi dorothy! Welcome to the healthboards (weird coming from me because I'm pretty new here myself!)
Polycystic kidney disease is obviously a difficult thing to have--especially when you see so many of your loved ones afflicted with the same condition. It is the fourth most common cause of renal failure leading to dialysis in N. America, and unfortunately, there's not much you can do to treat it.
So replacing the renal function that is lost is maintained somewhat by doing dialysis 3X week, but obviously, not all of the kidney's function is being replaced so defecits occur. Usually, doctors will put patients with chronic kidney failure (i.e. slow loss of kidney function over time) on dialysis when they have ~10% of kidney function left, or around that and are having significant symptoms of kidney failure (confusion, severe malaise, weight loss, loss of appetite etc). It is very true that having SOME kidney function is better than none at all in dialysis patients. Many dialysis patients retain some small amount of renal function, and actually do end up producing some urine every day; however, you have to weigh this benefit with the risks of retaining the kidneys. In someone who had to go on dialysis because if diabetic nephropathy (the most common form of renal failure in N. America) there is not all that much risk of keeping the kidneys there....
In PKD, there are many complications that can occur with the retained kidneys. First of all, they are VERY bulky and can affect the function of other organs in the abdominal cavity. The cysts themselves can become infected, and it is very difficult to treat with antibiotics. As renal function lessens and a person is on dialysis for a longer period of time, the immune system deteriorates to a certain point and the person becomes more prone to infections. Finally, as in your baby brother's case, the cysts can bleed, and if he is on blood thinners such as warfarin (coumadin) the bleeding can be catastrophic. These are the risks that must be weighed. If your brother doesn't produce ANY urine at all, the nephrologist likely wouldn't think twice about taking the kidneys out if he was on warfarin. If your brother produces some urine, it becomes a bit more of a judgement call, but again, depending on how bulky his kidneys are, the risk of taking his kidneys out is much less than the risk of keeping them in and concurrently being on warfarin. Cystic bleeds can be catastrophic.