A thought about paperwork

[Desert Dancer]

I've been following a conversation on IHD's Facebook page and I've found it rather disturbing. I've not joined in because I don't want to come across as some scolding know-it-all, but it's really been bugging me and one particular comment I saw there today has prompted me to comment here.

It has to do with flowsheets and various other paperwork for home dialysis. It seems there are a lot of folks out there who find it a bothersome waste of time and either don't do them at all or just make them up to keep their clinic happy, without taking actual readings for things like BP. The comment in question went something like this: "Why the heck do I need my blood pressures from four months ago? What good does that do me?"

As someone who is currently having issues with hypotension of unknown etiology I can tell you that my blood pressures and weights from FIVE months ago have been absolutely invaluable to me, along with all the other information I've logged on my flowsheets. This disease takes many courses and wreaks havoc on every system of our bodies. Many problems cannot be seen or traced to a source without a backlog of information to mine. It's like standing with your nose an inch away from a wall covered in busy wallpaper: if you stand too close and try to focus your eyes on the wallpaper you can't make any sense of if. It's only when you step back that you can see the pattern. It's the same way with flowsheets.

In my particular case, I have every flowsheet and RO log for every treatment I've ever done. This enabled me to go back to December and see what my weights and corresponding blood pressures were from then to now. I'm able to log that info into an Excel spreadsheet - along with other pertinent info - and turn it into a graph, making the patterns therein crystal-clear. Having that information let me prove decisively to my clinic that my dry weight and fluid balance were not the issue, thereby forcing them to move beyond that as a scapegoat and actively look for other answers. It allowed me to determine that my BP problem began less than two weeks after my parathyroidectomy. It allowed me to establish the fact that I can't stop my atenolol because my heart rate shoots up, and if I'm asked to stop it again I've got written proof of why I should not. I can - and do - track and log my hemoglobin readings from my own meter onto my flowsheets and use them against the clinic's readings to bolster my arguments for why my Epogen should be held (again).

The same goes for the machine readings that need to be recorded. It may seem ludicrous to have to record every machine reading, every treatment, but it's your early alarm system that the machine may need maintenance or repair. If you don't log those numbers or - god forbid - don't do the tests themselves regularly, you may know something's out of whack but you'll have nothing to back you up in that assertion. You won't be able to establish any kind of pattern. As with most things, if something's not in writing it doesn't count.

This is aside from what I consider a secondary issue: the legal requirements for clinics to provide proof that patients are being monitored at home.

So long story short: flowsheets are one of the most valuable tools you have as a patient. Use them! Use them with the understanding that they give you so much of an advantage in managing your own health. There are so many different ailments connected with both this disease and the process of dialysis; having all that information to pore through can lead to dead-ends, sure, but they can also provide clues and sometimes solutions. However, if you don't have the information to begin with you've got no logical place to start looking for answers.

Just my 

[MooseMom]

I agree with you absolutely.  I have copies of every single one of my lab reports for the past seven years.  I have a copy of every piece of correspondence, every test result and every prescription during that time.  I have referred to this wealth of information on many occasions.  If you have a chronic disease, it is unreasonable to expect anyone else to keep close tabs on your condition.  That's just madness.  But some people chafe at the very notion that there are certain requirements and duties imposed upon them.  I'm little Miss Compliant.  Actually, it gives me control, and I like that.

[KarenInWA]

A very well written post, DD, and I could not agree more. I never did HHD, and I admit, I haven't been keeping track of my BP or fluid input/urine output, but you made a very good point as to why I should do that! (I had a transplant back in Nov, and most recently a nasty hematoma-induced injury most likely caused by a biopsy. Yes, I learned my lesson on that!) So I am now in recovery mode - again. I know about the thread you speak of, and I agree with everything you wrote. I'd take your advice over one of theirs ANY day!!!

KarenInWA

[MooseMom]

I am not on Facebook.  Is the group on IHD's fb page vastly different from that which posts here?  Or is it pretty much the same people?  Do posters have the same conversations twice, once there and once here?  How does that work?

[monrein]

DD...you are 100% right on the money in my opinion.  I think it has something to do with having lost control through ESRD and feeling that by NOT doing some of the things required that one is taking back some control.  I think it's an immature response even though I understand the feeling of being overwhelmed by all the hoops and loops and things that kidney patients must go through. 

[jeannea]

I saw that thread as well. It bothered me too. I asked why you wouldn't want to do them but didn't get an answer. I did PD and always did my flowsheets. Yes I would occasionally miss a BP reading but I didn't make up numbers. I would use my flowsheets when I had concerns and the doc would look at them before giving advice.

I recently got a transplant and there are different records to keep for that. I have to go to clinic every week for a while and they always look at my sheets. The info is important.

I bet if you asked these people if they were in the hospital should the nurses write things down or not because when you leave the hospital the info will be old, they would want accurate records kept.

I just don't understand refusing to be involved in your own care. I met people at PD clinic who also refused. I guess you're right they're trying to get some control back by saying no. It just seems to me like a childish response. I got some control back by making sure I was getting the best care possible.

In the thread, i do agree the nurse shouldn't have yelled at her. But she seems naive to think the transplant center won't view her as a problem when she refuses to take her BP and write it down after transplant. It's not that much to ask when you get the gift of life. Also she seems to think she can sue her way out of anything. No lawsuit can force them to give you a kidney.

[MooseMom]

DD...you are 100% right on the money in my opinion.  I think it has something to do with having lost control through ESRD and feeling that by NOT doing some of the things required that one is taking back some control.  I think it's an immature response even though I understand the feeling of being overwhelmed by all the hoops and loops and things that kidney patients must go through.

I can really understand this sentiment, but for me, it works in the opposite way.  I mean, keeping records and all that makes me feel like I have MORE control, if that makes any sense. 

[Poppylicious]

I am not on Facebook.  Is the group on IHD's fb page vastly different from that which posts here?  Or is it pretty much the same people?  Do posters have the same conversations twice, once there and once here?  How does that work?

I may be wrong, but I think most of the people that regularly post on there aren't the same folk who post here.  I think those who are more likely to frequent this forum only dip in and out.  I actually think DD should post some of this on there, but honestly, it's probably not worth the aggro! (Some posters - not from here - tend to get a little bit defensive and I get a high school clique style vibe from it, which we don't get here ...)

[MooseMom]

Poppy, I had no idea that there was such a different group on FB IHD.  That just feels really strange to me!  I don't know why; maybe it's the idea of there being a sort of IHD parallel universe, sorta like on "Fringe".

[Joe]

DD, I completely agree with you! I do PD and my log sheets are probably the most descriptive tool I have to get the whole picture about how I am doing. I would no more think of fudging my entries than i would think about not doing my dialysis  And you should post that over on the FB page, I'd hate to think some newbies would read that and think it's the norm for us PODs.

[monrein]

DD...you are 100% right on the money in my opinion.  I think it has something to do with having lost control through ESRD and feeling that by NOT doing some of the things required that one is taking back some control.  I think it's an immature response even though I understand the feeling of being overwhelmed by all the hoops and loops and things that kidney patients must go through.

I can really understand this sentiment, but for me, it works in the opposite way.  I mean, keeping records and all that makes me feel like I have MORE control, if that makes any sense.

Me too MM.  I also need to be totally clear on what every little (and big) number or reading or dial means.  Real control through information...also how does what I do or eat affect these readings and numbers.

[Chris]

I'm missing something since, 1. I did not hear the full conversation at the Chicago meet about that particular post and 2. I have not read it yet (need a link to find it).


I think I have an idea of what is going on, but not sure. I take it someone is not keeping track of their health and is having a......kanipshin fit(sp?) on why they should is my ingcling.

[cattlekid]

The person on IHD on Facebook is having massive problems with their home hemo nurse.  She is stating that the nurse doesn't look at the flow sheets, just throws them in a drawer when she is presented with them.  So the patient is retaliating by not doing the flow sheets. 

I see a lot of problems on both sides.  I am the first one to admit that I would not be happy in this situation either, I tend to agree that if someone doesn't hold up their end of the bargain (e.g., not reviewing the flow sheets and not providing any feedback), then I become loath to hold up my end as well. 

I've tried to impress upon this person that she needs to do the flow sheets if for no other reason than that's how the provider gets paid.

[paris]

I also keep every lab, note, letter, etc.   I like to beable to look back and compare.   With everything concerning kidney disease, being compliant is always the best path to choose.    This person needs to just fill in the sheet.  Do her part so no one can question her participation in her own care.   

DD, your post was perfect.  You should post it on the facebook site.

MM, there are many "oldies" on facebook, but to me it seems like mostly newer members who are not interested in a forum or long term relationships.   Just my opinion!           Thanks to those who come over to the forum and find what a great site this is and stay.   

Cattlekid,  you are sharing wise advice.  I hope she hears you and understands that she needs to do this.     

[Chris]

Wish they had it like that for incenter hemo so I would know what my numbers were and not go by those fricken smiley face stupidity stickers. I have done this with every lab since transplant and have most test also (x-ray, mri, ct, ect) in binders. I bring the binder with to my doctor appointment that have a relationship with my tx center ad to the tx center because sometimes they do not have that lab report or I can bring up a reading for comparison to prove a point either by me or them.

[del]

DD, I agree 100%.  My husband has been doing home hemo for 6 years and we have kept run sheets the whole time.  We have to send them to the dialysis nurse and they are put in a binder so that they can be referred to if there are any issues.  We also keep track of all bloodwork on a flow sheet.  This we keep for ourselves so we can see any connections between the lab results and what hubby is eating and if he needs to change anything.  We kept records of his lab results when he was in center as well.

We have both tried to learn everything we can about the machine - even when he was incenter. 

[MooseMom]

Keeping records just makes me feel safer.  To my mind, it's not really about compliance but, rather, it's about safety.  But that's just the paranoid me.