There's no place like home

[apetty]

I have posted on here before about this issue so this is kinda of an update, but I don't know.... I attempted to reinitiate dialysis at Davita after taking a 3 month hiatus from dialysis entirely, because I truly believed that continuing to dialysis the way I was being made to do it was going to kill me in short order.  So I started back at the clinic I initially started out with in Augustv2015 when I  began dialysis with the caveat agreed with my doctor that I would only do incenter dialysis if I was on the waiting list to start HHD training. 

I show up. They tell me I have to be compliant for three months before i can start training.  This is unacceptable to me and I am refused a meeting or even a conference call with the doctor supposedly making this order.  I eventually call the network and they stonewall for about a month.  Finally, yesterday I get a call from Joyce (and I truly believe she is actually trying to help me) that after weeks of being stonewalled by Davita herself that the FA at my clinic and the FA at Berkshire have been trying to get a hold me for over a month to schedule a home assessment.  I tell her that's wierd because if I had gotten a call it would have certainly shown up on my phone and the only call I have gotten from Davita was from their RX program.  So anyway, I am instructed to contact Davita within 24 hours to schedule a home assessment.  I try to call before my doctors appointment today and leave a message.  Go to Dr. Gold. He says he will talk to Dr. Biggs and get back with me in a couple of days.  3 o'clock rolls around and I still haven't heard anything.  I call my clinic and get the FA there.  She is polite and cordial on the phone but tells me I need to call Wanda Greene at Berkshire.  I hang up and call Wanda.  Leave a message.  Call Janice at the network to tell her the good news (I should have waited for the shoe to drop before I did that, but live and learn), Wanda calls me back while I am leaving a message.  I call her back directly. 

She answers the phone and I explain who I am and why I am calling.  She is silent for a while, I get uncomfortable and then she starts brow beating me telling me that she has been trying to get a hold of me for over a month and I tell her she must have gotten my phone number wrong because I haven't received a call or a message or anything... the whole conversation she keeps this adversarial tone and everything I say she snaps back at me like I am hitler killing the baby jesus. 

Then she accuses me of lying to her when I try to explain that she is wrong about me only doing incenter dialysis for one day, explaining that I started incenter after I came home from the hospital back in August and continued up until December.  She then tried to say that I am too ill to start training, and I am not... I was a lot sicker while I was doing dialysis.  I was hoping that the extreme symptoms I was experiencing when I decided to stop going in December would have been alleviated when I attempted to restart in March but it wasn't better it was worse, and that I was open and tried to communicate with the facility administrator and my nephrologist my issues preventing me from continuing to do something I believe will cause my imminent death. 

She then accused me of using "litigation language" and when I scoffed at this idea and told her that I can barely afford to feed myself that I could not possibly afford even a retainer for an attorney even if I wanted to she then goes into, "this isn't about the money", I shot back, it's Davita, everything is about money. 
She then proceeds to tell vague things that will keep me out of their program like comorbidities, when I ask about the specific comorbidities that would keep me from the home program she tells me she doesn't have the list in front of her so she isn't going to lie to me... blah blah blah.

She's like do you have someone that can be your care partner and do six weeks of training, I say yes, I have two, but have been told that care partners don't necessarily have to do the whole six weeks, i let that go though.  Then she goes into a diatribe about how its imperative that they be able to reach me at all times... I explain that I have a land line the same number for 8 years, and a cell phone I have had for 4 and that I never received a call from her or from veronica. 

Then she sets up a penciled in date of May 30 to do my home assessment.  She will call me back next week if her nurse can do that day and time, that she won't say yes or no on the message but to call her back.  I say I will.  She then goes on to say that if I am approved that there is a waiting list a thousand miles long and she might be able to get me in the program sometime around Christmas.     

It isn't till I hang up with this See You Next Tuesday that I realize that May 30 is memorial day... and that this will buy them at least two weeks to play their little games.  Well played though.  well played. 

Oh, she also tells me that I won't be able to see Dr. Gold in his office anymore that I have to use their doctors...who are in the same group as Dr. Gold, but still... isn't this a flagrant conflict of interest?  Is there a single nephrologist out there who isn't the medical director of some clinic?  Why do I have to use their docs if I can see a nephrologist at his office once a month?

[Fabkiwi06]

 

How frustrating! Is there no other center you can get to? Can you get your original nephrologist to have a meeting with you and the center?

Hang in there and good luck! Just got to get that training and you'll see so much less of them.

[apetty]

There is Fresineius.  I am going to try them... since I was rudely told that I would no longer be able to use Dr. Gold because "he doesn't go to that facility" even though Dr. Gold is the MD at the brand new facility down the street. 

Is that even legal?  I should be able to keep whatever nephrologist I see fit not have it dictated to me.  I'm so sick their crap. I was just absolutely blown away by how HOSTILE this lady was.  She obviously went into the wrong line of work because she had absolutely no empathy what so ever.   

I get it, Davita just built a huge new facility in South Tulsa, and they need bodies to fill chairs... I would rather die at home than die at a place that I hate and been forced into going to. 

On a lighter note my lab work was better than it was last month, which I have only had one dialysis treatment since December 16 2015.  My K was on the low side of normal, my phosphorus was in check, and my eGFR went from 7% last month to 8.8% this month.  The only thing higher was my BUN at 56....  so hopefully I won't even need dialysis till Christmas.

[Charlie B53]

It's ALL about the money.   They can say anything they want, but it all boils down to the bean-counters control most everything.   Many staff have that beat so deeply into their skulls they are completely brain-washed and will near physically shove any potentially 'difficult' patient to get them to succumb to the standard they are wanting to impose.

You area a problem child.  I like you.  You have an attitude much like my own.   Ask me nicely, give me a reasonable explanation without obvious lies and I will try hard to help and comply.  Try to force me or lie to me and we WILL have nothing but problems.. Your choice.

Unfortunately the deck is stacked in their favor.    They have the equipment, and training, that YOU need.   PITA, but though you are getting by alright for now, that won't always be so.

Clinics are somewhat like mini-hospitals.   iF A dR IS NOT 'ON-STAFF' (I hate that capslock button)  If a Dr is NOT 'on-staff',  he has NO privileges there and cannot write any orders.   Anything he says or does must be co-signed by a MEMBER Dr before it can be acted on.

This sucks.   This is another way they can grab all the money.  They do not share well with others.

All this sucks big time.   Like it or not you need to realize that you need to play this game as if your LIFE depends on it.  As it does.

How can you 'act' as the perfect model compliant patient, long enough to get that training and get that machine YOU NEED.   Once you are plugged in at home they can pretty much go fly a kite.  ( I have a whole bunch of them in the garage).

I'm not telling you that you have to permanently change yourself,   Only make it appear as if you have. OU want.  There is a method to your madness, sugar always catches more flies than vinegar.  Or so my Gramma taught me.

Take Care,

Charlie B53

[apetty]

My concern is that I am a tiny person and I have congestive heart failure, I go through IDH crashes that start 20 minutes into the therapy when they are set on dialyzing me at  300-400ml/minute, my body does not handle the fluid shifts very well.   Sometimes I come in I have a blood pressure as high as 260/180 mmhg and at the end my blood pressure will be 70/40, those are the extreme episodes.  Frankly, I have had a great amount of anxiety about doing dialysis since I was dialyzed in the hospital last November and they tried to remove 4kgs when I had come in under my previous post dialysis weight.  I know that I almost died.

I am in a power struggle, I would be compliant if I could.  If you were to offer me $10,000.00 dollars to do a treatment I probably could manage to do one, that's how terrible I feel afterward.  I am certain that if I was able to do their compliance shit that I would be too sick or dead by the time I would start training. 

During the four months I was on dialysis I was hospitalized 3 times and in the ER more times than I can count, the 5 months I have been out of dialysis I haven't even been to the ER or the hospital one time.  I have been able to live my life and not spend it a washed out zombie wasting away on the couch.

Thanks you all for your advice and support I would go mad if I couldn't talk to people who know what it is like. 

You hit the nail on the head about lying and my compliance, if you lie to me I can't trust you, if I can't trust you to tell the truth I am definitely not stupid enough to put my life in your hands.  If they would work with me just a little bit I am sure we could come to a consensus on what is best for me and that doesn't put them out too much.  I am not a "my way or the highway" person, and I am willing to put forth an effort if they will. 

I am not going to let this go.  I may have to find another way to get home dialysis but I will not do in center as a requirement for the "privilege" of home dialysis.

[Michael Murphy]

I currently go to a Fresinius site in NJ, and regularly use one in upstate NY which is also Fresinius. That said I would point out that most of the horror srories I have read concern Davita.  Start documenting your interaction with your clinic.  After you speak to a rep from the clinic state in writing what you have been told send it to them and ask for comments,  if you wonder about why you can't use your doctor call CMS and check with them. 

[PrimeTimer]

I'm guessing they want you to use their Neph at their clinic for liability reasons and one of their Nephs and a nurse that are trained in handling Home-Hemo patients. I don't think all are qualified. Of course I could be wrong about that. As for doing 3 months in-center first, maybe they want the time to establish your dry weight, any patterns in your labs and address any of your BP issues. My husband's Neph works out of several Fresenius clinics, including one that is very close to our home. However, not all of their clinics are trained/setup for home-hemo patients so he has to use one of their clinics that is a little farther away. It's worth it. At least he sees the same Neph at either clinic. Hope it works out for you. Sounds very frustrating but I would think it's good that you are showing them how serious you are about learning to do your own treatments. Your strength is admirable. Keep it up!   

[Charlie B53]

Have you considered PD?  Or is there some reason PD is not a good option?

The whole intent of PD is for the patient to do it all at home.  Only having monthly clinic visits for lab collection, check-ups, Q&A to be sure all is going according to plan, evaluate and update your plan if needed.

It will be three years for me near the end of this month.  So Far all has gone well.

The biggest problem with PD is you being a littler person.  Flooding your belly with 2 liters could be a problem.  Many smaller people had had to downsize their 'fill' amount, limiting the volume simply because the belly 'stretch' would be painful with a larger volume.   Not a problem, simply recalculate the number of cycles using the smaller volume, adding cycles until the total volume is used.   It has worked well.

Can this be an option for you?

I have heard that some Dr's make the decision for Hemo and never even tell the patient that PD exists.

Historically the PD cath exit site has been in the abdomen just above the belt line.    Mine is 'tunneled' up just off center of my chestexiting about level with the breast and midway between the leeft breast and dead center.   I usually tape it down but sometimes cut a small slit in the inside of a pocketed T shirt so I can poke it through and curl it up in the pocket.

I imagine ladies could contain it inside the bra cup or in that sort of pocket between the cups.   Hard to know for sure, I'm a 'Guy'.

Were you given the option of PD?

[apetty]

See I have done in center dialysis for three months.  I started last August.  I had a PD catheter "installed" last October.  I was so happy I had only one in-center dialysis left and then the next time I would dialyze would be at PD training set for Nov. 11. The week before I started to have abdominal pain and I had a garage sale on Sat. and had worked my ass off to get the spare room ready for supplies...Sunday evening I couldn't stand up to walk and was in severe pain, reluctantly I went to the ER. 

2 weeks and 2 surgeries later I left the hospital, sans catheter.  I was completely devastated.  This was at Fresinius.

The MD at that facility actually fired me while I was dialyzing in the hospital (the time they tried to remove 4 kg) because I was forcing him to answer the question why an AVF hadn't even been discussed with me.  I also had some hard questions for the episode that lead up to my PD catheter being removed.

Here's the episode.  So after they starve me for several days after I am admitted to the hospital and while they are deciding whether or not to do exploratory surgery, they want me to do dialysis before surgery, I tell them I am not doing dialysis until I get something to eat.  The surgeon finally comes to talk to me, he suggests that he go in and see whats going on and perhaps place the catheter and maybe secure it, then afterwards I am to do a dwell with antibiotics added to the fluid.  I say this sounds reasonable, and we are clear for surgery. 

Later that afternoon, before surgery I have a cart with PD supplies rolled into my room, and two nurses put a "sterile procedure taking place, wear mask" sign on my door.  They are to do a fill and drain, and to show me the procedure, as they are disconnecting the safety cap on the catheter and preparing to do the fill Dr. AHMED *the Dr. mentioned above*  comes bursting in the room sans mask and starts belittling me about refusing dialysis before surgery.  I stand firm on my not doing dialysis until I am fed (cause I always get ravenously hungry during dialysis even if I had just eaten) and I can't be fed till after surgery.  So anyway.  We go on with the procedure... later that afternoon I go in for surgery and I come to in the dialysis ward and I ask if they had dinner ordered for me... when I find out that no, they don't have dinner and that it's too late to order dinner, I demand to be taken back to my room which the dialysis nurse respects this request.

I think it was the next afternoon, when I am transferred to another floor.  The nurses are awful rude to me and one of them comes in with a 2L PD bag and opens it in front of me, I notice that the bag is not labeled in such a way to indicate that antibiotics are added to it, and she doesn't add anything to the effluent in my presence.  I don't ask questions I am tired and loopy from pain meds anyway.  At about 1L I start to hurt a little bit and the pain increases as she hits 1.5 L (mind you I just had abdominal surgery the day before), she says orders are for 2L and continues despite my protestations that I was told that because of my small stature and size that I have never done 2L the most I had ever done was .75 and 1L.  I think I manage to get 1.8L in.  I spend 3.5 hours in agony I can't put words to.  I can take no more and the nurse won't come drain me, my friend grabs me a basin, I try to get the cap off but I can't and end up taking it of with my teeth, the fluid that drains out is opaque, yellow, purulent, but finally, a little bit of relief.  A couple of bitchy nurses come in, the RN, eyes wide, grabs the empty bag that she used to fill me with and shoves it at another nurse and says, "get rid of this", and quickly recaps my catheter.  That evening I am still in a large amount of pain... for some reason, I become clear what is wrong when I got up and struggled to the bathroom.  I get back to bed and beg to be straight cathed.  They drain 800ml of urine from my bladder.  I finally can get some sleep.  It was a couple of days after that I am told that samples were taken from surgery and tested and they tested positive for Serritia Marsecanes.  (Which I haven't got my medical records about that yet, I bet it wasn't from surgery, I bet they did a culture on the pus filled dialytic fluid, that being that I was fresh out of surgery and they gave those little microbes an all you can eat buffet of sugar with the dwell that would have been mitigated if they had added the antibiotics in like they were supposed to do).  Four doctors come to me while I am dialyzing at the hospital and tell me that my PD catheter will be removed.  I don't want to give them the satisfaction of seeing me cry so I just nod my head while turning it to look away from their smug faces, and stare out the window until they leave.  I am too tired to cry much, I call for more morphine.

Several days after that my catheter is removed and I am sent home a couple days after that.  I get into my EHR that has no surgery reports weirdly, or lab results for the Serrita Marsecanes.  I find a scathing report from an ID doc I have never met before (Dr. HEATHER BELL) saying because of my long history of non-compliance, smoking, several STD's (I had a trichamonis infection that must had laid dormant for years because I have had the same boyfriend for over 4 years and we hadn't had sex since I got out of the hospital in August), and a possible underlying undiagnosed pyschiatric disorder (that the 2 psych doctors I had seen every month for 10 years had somehow missed, saying that I had a flat affect, and limited verbal skills), that I am not a good candidate for PD. 

I hope that doctor comes down with a virulent case of eye herpes.

I am currently talking to Dr. Gold about trying PD again.  I told him I would do dialysis through my nose if it meant I could do it at home.  PD is the best option for me because I have had heart failure since 2010.

   

[cassandra]

O apetty I'm lost for words. I really hope for you that dr.Gold will get you back on PD.

Love and luck, Cas

[Charlie B53]

It is for Dr's like those that I have little respect for some of them.  Thankfully there are Dr's that have a bit of common sense and courtesy, repecting the patients right to be informed and have a part in making good decisions about their own care.

Those Dr's that just want to TELL you what THEY plan to do to youneed a different line of work.   As I wouldn't return, and I will tell everyone I know how they are.  When they have very few patients, they will go to work for a clinic where they can play god again.

I'm very sorry this is such a trial, with mostly errors.   I don't see a good solution within that facility.

Are there other Clinics within a reasonable commuting distance?

Are you tied to that community?   If me I would be seriously thinking of relocating.   But before you do you need to do a LOT of homework to find a Dr and Clinic that treats people decently.

Unfortunately my Neph is employed by the VA.  I don't think he sees anyone outside of the VA System.    Otherwise I can swear the DCI Clinic I go to in Columbia, MO has got to be one of the best.   But my opinion is Biased.  I've never been anywhere else.   What do I know?  Next to nothing, remember, I'm a 'Guy'.

[apetty]

Man I wish I could go to a VA doctor.  My dad is a vet and he has had to fight for quality care but he eventually got it.  They are even going to pay for dental implants.... which I think is something just short of a miracle.   

There is Fresineius and Davita around here but there is a Physicians Choice a thirty minute drive from here, but you better bet I am going to try them if I am forced back in center.  I got really excited when I saw that they offer HHD but when I called I found out they only offer PD and ICHD. 

You guys rock! 

[Charlie B53]

I wouldn't give up on PD just yet.   Many smaller people have had success with limited volume and increased exchanges.  IIRC there is evidence that shorter duration cycles are more effective as the higher difference in solution/blood drive the exchange of toxin faster.   

some that are doing as manageable as you are currently even limit the number of days/nights of treatment, not needed it every 24 hrs as most of us do in order to maintain acceptable labs.

Ask LOTS of questions.  Document, so you can refer back to them later.   Do NOT allow them to push you into something if there is still a viable alternative.

I am currently living in Missouri but I was Born in Washington.   My Momma and Grandma both were from Nissouri so I learned long ago you got to 'Show Me' why.   Telling me isn't enough, I want to SEE evidence.  Many times I will dig into it and find the root reasoning behind decisions.   As I rarely just agree with anything.      Could this be why many people think I am an A-Hole?

Just always keep in mind, that fake smile and outward appearance of acceptance may be necessary to get you what you want, and need.  Even though this could take a few months.   This may be a big job, very difficult to bite your tongue, but the end result, getting what YOU want, will be worth it.

Take Care,

Charlie B53

[apetty]

Thanks Charlie.... I think me and you are cut from much the same cloth in that regard... I often get people who think i am just being an asshole too.  I did ask Victoria if she or Dr. Biggs could give me one reason with proof that requiring me to do ICHD is beneficial to my health and safety, just one reason.... still waiting for that answer.

I called Wanda yesterday and told her that the day she scheduled my home assessment was on Memorial Day, that it wasn't a good day for me, why don't we reschedule it for July 4th or better yet, December 25.  She said she would call me back when she had a date and time she could come to my home... I plan to call her every flipping day to make sure she is not trying to call me and can't get through like she claimed she has been doing the previous month.  I live in Oklahoma and have been to Missouri many many times....

[Charlie B53]

I was in the musical 'Oklahoma' while in High School.  That's about as close as I've been to there.  lol

Well, that may not be so true.  I have driven here to MO from WA and back a number of time, every time I went straight across from Denver to St louis (almost) so somewhere along there I was pretty close, just a bit South.  But far closer than I am from here.

I don't doubt that life there is much like most anywhere else, it is what you make of it for the most part.   People are just people.  Good, bad, and indifferent.  You just try to identify which are which so you can avoid those you can, and learn to put up with those you cannot avoid.

I have to admit mid-West weather has it points.  Not all good, but not all bad either.   The humidity combined with the heat can be brutal.  I have to hid inside the house a lot, only outside for brief periods when it is bad.

I am not 20 years old and immortal any longer.  I once must have thought I was as I've done some very stupid things.   I try not to do much of that any more.

Study the system well.  Learn it so you can turn it around and use it to your advantage.   This could take a little time,  but that time is very well spent when you are investing it in yourself.

I have no doubt that you will be able to do this.  If for no other reason than to flaunt it to all those that have said you can't, to prove them wrong.