How I handled a lack of information.

[Gerald Lively]

Reader(s):  I had some difficulty obtaining information about my kidney situation.  It seemed that I had to deal with conflicting info despite my attempts to get some clarification.  Finally, I managed to gather all of the Principles for a showdown meeting.  This wasn't news to my family, I do deal a lot in confrontation meetings when I can't get satifactory responses.  This is a style I used during my days as City Manager.  Back in Juky, when I couldn't get anyone to talk, I walked out of the hospital in the middle of the night.  Well folks, that got their attention.  They sent the cops to my home at 1 AM.  I asked myself, "Do we live in a police state?"
Here is what upset the apple cart a few weeks agao:

To: RAI Dialysis Team
From: Gerald Lively
Subject:  Continuing Dialysis Treatment
Date:  November 7, 2011

Team:
The time has come when I must make a life-changing decision regarding my dialysis treatment; home treatment or treatment at the RAI Dialysis Center.  Further, it seems I must have a ‘fistula’.  To aid my decision, and it is my decision, I feel a need for greater or sufficient information.  In past contacts with the medical community, I have made at least one bad decision based on a trust of a doctor who supplied misinformation.  I have vowed to never permit that to happen again.  In that context, I have many questions.  Please consider these:
1.   The information from blood and urine analysis seems to have ceased as of October 20th, 2011.  Just at the time I needed to determine a trend, the testing criteria changed.  I need to know what my creatine and general blood work reveals.
2.   Water.  I am unable to dismiss the continuing destructive feeling that follows each and every dialysis treatment.  I am dizzy at some degree following each dialysis treatment for no less than a day.  I assume this is due to the removal of water that seems to be in increasing amounts.  When this removal of water reached the 4.9 kilo mark, I complained.  Something is not right.  When I inquired about this, the removal was reduced to 3.5 kilos and I felt just as poorly.  There seems to be no consideration for increased body fat increases, clothing changes or the amount of urine I produce between treatments.  What is going on?
3.   I was recently informed that I cannot drink several glasses of water to relieve dehydration.  An internet search revealed the general rules that I may not drink liquids in excess of 50 ounces, but at east 32 ounces.  If this is true, why wasn’t I told sooner?  Does this have any impact on the amount of water removed during dialysis? 
4.   My domestic water supply is derived from two wells; one at 350 feet and another at 200 feet.  In testing for use as aquarium water, we determined that our water is hard to a degree that falls within the ‘low’ range.  The hardness is lime and phosphorous, meaning this water probably passes through a stratum of limestone – no worse than the water in the Chico Municipal system.   Being on a somewhat restricted diet, how can this be permitted?
5.   If a home-dialysis machine has reverse-osmosis equipment, why is there any concern about water quality?  Yes, I am familiar with reverse-osmosis and how they operate on cruising sailboats where sea water is used for a drinking supply.
6.   My kidneys are partially functional.  I have a deep-seated suspicion that my kidneys are working better than the 8% stated in October.  When I drink water, I urinate.  When I do not drink water, I do not urinate.  Often my urine is bright yellow (and my garden loves it).  Recently I was told my kidneys are not working.  They either are working or they are not.  Which is it?  Since there has been no comprehensive blood work since mid-October and no urine testing, I do not have enough data to determine a trend nor do we know if my kidney function has become better or worse.
7.   A fistula is a monstrosity. Yes, it offends my vanity.
8.   I have abandoned my special diet and am no longer taking my ‘binder’ pills. I have mentioned this in the past.  What I am missing is the effect this has on my blood work numbers.
Your help in these matters will be greatly appreciated.

Gerald Lively

[MooseMom]

What is the latest information you DO have?  What are your latest lab results?  I keep a copy of all my lab reports and have done so for the past 7 years (I am pre-dialysis); do you have access to your latest numbers?

[jbeany]

My thoughts, by the number...


1.   The information from blood and urine analysis seems to have ceased as of October 20th, 2011.  Just at the time I needed to determine a trend, the testing criteria changed.  I need to know what my creatine and general blood work reveals.

Best option here - learn what the labs mean and then just get the numbers.  Then you can follow your own trends by demanding a copy of the lab work the doc looks at, not some sanitized version for patients.  www.kidneyschool.com can walk you through this, lab result by lab result.

2.   Water.  I am unable to dismiss the continuing destructive feeling that follows each and every dialysis treatment.  I am dizzy at some degree following each dialysis treatment for no less than a day.  I assume this is due to the removal of water that seems to be in increasing amounts.  When this removal of water reached the 4.9 kilo mark, I complained.  Something is not right.  When I inquired about this, the removal was reduced to 3.5 kilos and I felt just as poorly.  There seems to be no consideration for increased body fat increases, clothing changes or the amount of urine I produce between treatments.  What is going on?

Yup, if you are taking off huge amounts of fluid every day, your body is not going to like it.  Period.  If you want it to be consistent, you need to wear similar clothes each day when you stand on the scale.  I always took off my jacket and shoes/boots and weighed in the same weight pants and shirt every time.  If you are gaining weight, you can ask them to account for that, but it's unlikely you can gain much in the single day, so that is usually a very gradual trend, not a sudden one.

3.   I was recently informed that I cannot drink several glasses of water to relieve dehydration.  An internet search revealed the general rules that I may not drink liquids in excess of 50 ounces, but at east 32 ounces.  If this is true, why wasn’t I told sooner?  Does this have any impact on the amount of water removed during dialysis? 

YES! YES! YES!  How much fluid you drink has a HUGE impact on how hard D is on you.  Even if your kidneys still remove some fluid, they rarely work well enough to remove it all.  As a rule of thumb, most D patients keep to 1 L or lower a day.  I crashed so easily, I had to do much less than that.

4.   My domestic water supply is derived from two wells; one at 350 feet and another at 200 feet.  In testing for use as aquarium water, we determined that our water is hard to a degree that falls within the ‘low’ range.  The hardness is lime and phosphorous, meaning this water probably passes through a stratum of limestone – no worse than the water in the Chico Municipal system.   Being on a somewhat restricted diet, how can this be permitted?

I drank hard water from a well during my entire time on D.  You just have to adjust your other intake of high-phos foods to account for - or buy a filtration pitcher if you have a hard time avoiding the high-phos foods.  Mostly, the amounts in the water are too small to make a huge difference, but if your labs are borderline, it might help to filter it.

5.   If a home-dialysis machine has reverse-osmosis equipment, why is there any concern about water quality?  Yes, I am familiar with reverse-osmosis and how they operate on cruising sailboats where sea water is used for a drinking supply.

Because if you drink something that isn't completely filtered because the filter isn't strong enough, you'll probably be just fine.  Home D, however, runs that fluid directly into your veins.  It must be pure to the point of near-sterility or it will make you very, very ill.  The water is tested to make sure the filters are adequate.

6.   My kidneys are partially functional.  I have a deep-seated suspicion that my kidneys are working better than the 8% stated in October.  When I drink water, I urinate.  When I do not drink water, I do not urinate.  Often my urine is bright yellow (and my garden loves it).  Recently I was told my kidneys are not working.  They either are working or they are not.  Which is it?  Since there has been no comprehensive blood work since mid-October and no urine testing, I do not have enough data to determine a trend nor do we know if my kidney function has become better or worse.

Kidneys that make urine are not always kidneys that clear toxins.  Some D patients never stop making high volumes of urine - but they don't clear a single bit of toxin.  Urinating is not an indication that your kidneys are working well.  (Your garden may be loving all the protein your kidneys are leaking - and that's not a good thing.)

7.   A fistula is a monstrosity. Yes, it offends my vanity.

Yup.  They can be ugly.  Not all of them are though.  They do, however, have a much, much lower risk of infection, and are often easier to live with than a cath, which restricts bathing and swimming.  They can also give you better results than a cath - better cleaning while on the machine.

8.   I have abandoned my special diet and am no longer taking my ‘binder’ pills. I have mentioned this in the past.  What I am missing is the effect this has on my blood work numbers.

Your binders take the phosphorous from your meals - from things like meat, cheese, dairy, nuts, and chocolate, and bind it so it passes through your system.  Stopping it will not show any immediate visible side effects, only a high number on your labs.  In the long run though, high phos will leech the calcium out of your bones, turning them into lacework.  Like IHD's founder, epoman, you might find yourself in a wheelchair with broken hips simply from taking a step.  In addition, calcium will start clumping in your tissues.  You can end up with "sand grains" in uncomfortable spots - like your knuckles, your eyelids, and in various places that can cause excruciating pain.  Trust me, just take 'em.

Also, if you have abandoned the diet, you are running the risk of high potassium.  Ever see a runner cramp up until someone offered them juice or a banana?  That's low potassium.  High potassium does the opposite of a cramp - the muscle refuses to contract at all.  Your heart is a muscle.  It can quit contracting when exposed to high levels of potassium.  Picture that for minute, and then back away from the bananas, citrus, tomatoes and potatoes.

Get as much information as you can about this disease and the effects it has on your body.  Ignoring the doc's advice, or for that matter, waiting around for them to decide to give it to you, can very quickly be fatal.

[fearless]

I can't add anything useful to that, but i can sure relate to not getting needed info - and having to educate yourself.

But educating yourself is the best thing anyway.

[jeannea]

I think that jbeany addressed things really well. My other concern is you seem to be convinced that your doctors are untrustworthy and trying to mislead you. While I do believe that we should all stay educated and assist in our care, I think it can be really helpful if you have a doctor you can trust. Do you really think they are working against your best interest? The confrontation you're suggesting may not be the best way to approach this. I suggest asking for mutual cooperation with your team to find the best plan of care. You become educated and promise to follow at least most of the rules. They promise to keep you informed and help you get the care you need and want.

I recommend you try to follow the diet and take your binders. Also, once you're on dialysis, creatinine is not the most important number anymore. It will fluctuate somewhat with your treatments but does not show your kidney function. You need a 24 hour urine any time you want to be sure of remaining function.

[Whamo]

You are in denial.  You need to accept your illness.  You need to learn how to cope with it.  It is not easy.  Just when you think you understand it, something else happens.  Read everything you can on this website, and you will have a wealth of information on how to deal with it. 

[cattlekid]

Hello Gerald,

I have read your introductory post and this post several times and I have to admit, I admire your style. 

I noticed from your introduction, that you are an elder gentleman.  I have witnessed first-hand when I was in-clinic how patronizing the staff was to the elder patients.  Minimal information was given to them and the rounding nephrologist and dietitian spent very little time going over their lab information with them. 

While your initial strategy may have been more than they are used to dealing with, I think you were on the right track with some of your points.  You should be getting lab work done every month, including the vital information on albumin, Kt/v, phosphorus and potassium levels.  These numbers are vital for you to understand a) how well your treatments are going and b) how much your diet is helping or harming you.  Without this information, I can definitely understand how frustrating it would be to be able to stick to the renal diet and take binders without understanding how these behaviors affect your numbers, and how the numbers affect your body and ultimately, your lifespan.

Do you have a nephrologist outside of the dialysis center?  I found that the in-center nephs are overworked and too busy to discuss things with patients, and the dialysis center itself is not  a conducive environment to having a detailed conversation.   You may want to seek another nephrologist who is willing to take the time to have a comprehensive discussion with you, not just the 2-minute drive-by in-center.

Secondly, have you given any thought to the possibility of doing dialysis at home, either through home hemo or peritoneal dialysis?  It may give you back your sense of control that it looks like you are looking for.

Finally, even though this is not a popular sentiment here, I agree 100% that a fistula is a monstrosity.  I am 30 years younger than you and was livid that I had to have a fistula.  I would suggest looking into the concept of buttonholes when it comes time to use your fistula.  The buttonholes are supposed to prevent the ropy-ness that comes with a fistula.

[Traveller1947]

Hi Gerald,  I saw by your introductory post that you've been through some difficult health struggles and come through them stronger.  ESRD isn't exactly like that--there's no way around having to give up at least some control.  Learn as much as you can about all this and insist on a copy of each month's lab report in hard copy.  If you're still producing urine, a 24-hour sample will tell a lot about your kidney function too.  Many beginning dialysis patients still produce urine, but it isn't quality urine, so to speak.  Fluid restriction is a fact of life for a dialysis patient, less so if you're still producing urine.  But if they're having to remove large amounts of fluid at each treatment, you're either drinking too much or your dry weight is too low.  You can address either of these possibilities without confrontation.  As for diet and binders, the consequences of the build-up of phosphorus and/or potassium are too terrible.  Keep your diet as well as you're able, that's the best advice I can give you.  All the best to you in your journey.

[Gerald Lively]

Cattlekid & others:

Elder Gentleman?  What you mean is old fart.
Monday I get the fistula.  Wonderful, as they used to say in the military just before they gave you twelve shots for various unheard of diseases.  Tomorrow I do another blood test (another in a series of 100 such tests - more or less) and an EKG.  They want to kniow if I am still alive before inserting any plastic/bionic devises.  And, yes, I do demand information by being aggresive.  I stand a full head taller than the Doctor, so I stand chest to chest and gaze down upopn his poor soul.
I shall prevail.
gerald   
 

[Gerald Lively]

Whamo;

I do not think I am in denial.  I am fully aware of where all of this is going and the extent of my cooperation covers what I must do.  Otherwise I want answers.  If you have read my history you know that my coping skills are intact.  All decisions are mine, all decisions I make are based on solid information, if I can help it, and, isn't that why we are all here?
gerald

[Riki]

I agree completely with finding a nephrologist that you can trust.

I was greatly spoiled when I first started dialysis.  I was 12, and the pediatric nephrologist that I was placed with was, and still is, a leader in his field.  He would come to see me early in the morning, usually before my parents arrived, and he would explain to me, in a way that I understood (remember, I was 12) everything that was going on kidney wise, and I was able to explain everything to my parents when they arrived.

I now have one of those drive-by nephrologists (this one drives by on a motorbike) who came to this province a few years ago and took over.  His first order of business was to cancel all clinic appointments for hemo patients.  I actually miss that visit, every 3 months, sitting down with the nephrologist, and one of the dialysis nurses, going over everything, and deciding if anything needs to be changed. We don't do that anymore.

[fearless]

Riki, i can relate.  While on PD, i had the opportunity to sit with doctor, nurse, dietician and go over all lab results AND any old question I felt like asking!  I think the doctor enjoyed meeting with his patients this way, because it really feels more like patient care.
Now, with in-clinic hemo, people pop by while I'm hooked up and buzzing away, and there's really no time or environment for lengthy questions.
There is a care-plan meeting once a month which I'm able to attend.
My doctor retired and I'm feeling very out-of-touch with my own care now.   

[bleija]

i do this once a month, go in get my vitals with my PD nurse,  talk with the neph, go over my meds, my treatment, how im feeling, any questions i have, he then tells me im too pretty and young to be on dialysis and asks my status with transplant, then i go see the dietician who gives me a copy of my labs, and we go over what i eat, what to avoid and such, thn i seethe social worker for money issues and such.... it great i love my clinic

[fearless]

bleija,

that sounds a little weird to me.... "too young and pretty to be on dialysis" ?  I guess it's OK if you're old and ugly? (I'm sure I'm just misinterpreting that, but anyway - NOBODY should be on dialysis! 

[bleija]

hes just joking, hes extremely professional, and german, so i love the accent