uncaring doctor

[aniawoman]

I am the care partner for my husband's home hemodialysis, and I go with him to his monthly appointments at the clinic.  Recently, I have been discouraged by having made a couple of bad sticks in a row, and when we were at the clinic last Wed, I mentioned this and expressed my disappointment in not having been able to establish buttonholes.  As a backstory, I should explain that our training at this clinic was very poor, and instead of being taught proper cannulation and then being guided in establishing buttonholes myself, I was asked to observe while no fewer than 4 nurses/techs "established" the buttonhole before I was allowed to try it myself.  Long story short, my husband wound up having to have a venogram and has some stenosis, although his fistula was created by a top surgeon, and everybody at the clinic praised it until they messed it up. Of course no one wants to admit they did anything wrong, and so now the blame is put on the surgeon (who is not affiliated with this clinic) and on my husband for having veins that roll too much.  So we are stuck (no pun intended) with sharps.  Back to the last visit -- when I said I wished we could have done buttonholes, it was because I was feeling particularly stressed and needed some reassurance.  Instead, the doctor gave me this manipulative response about "I have seen things" about how buttonholes can lead to infection.  I should let you know that before I retired, I taught epidemiology and health promotion to nursing students. I think I can handle proper infection control.  In our clinic, the majority of patients are around 3rd grade educational level, so this sort of implied threat that something really bad would happen may work for them, but all it did to me is depress me because I knew the doctor was not listening to me but to some stereotype of a patient/care partner she has in her mind.  The clinic rotates doctors, so although she is not my husband's nephrologist, we encounter her about every third or fourth visit, and to make matters worse, she is the head doctor for that particular facility. She has pulled other manipulation scare tactics, one of which was about sodium -- we have followed a very low sodium diet for 35 years because we HATE salt -- and without going into details, it made us so scared that we didn't eat a thing at the large and expensive anniversary party our daughter threw for us. I'm sorry that this is rambling, but I am so depressed by the way we are treated in addition to everything else I have to deal with.  We can't change clinics because my husband's ESRD is caused by complications of an indolent lymphoma, and his oncologist, who is excellent, is affiliated with the same university as this clinic.  At least the nurse is good.  And thanks for letting me vent.  Sometimes I just need to be listened to and told it will be all right.

[cassandra]

I'm sorry to hear this aniawoman. I also understand that your husband has to stay at this clinic. Are there any patients at this clinic who do have buttonholes?
I also would want to advise you to start listening a bit more to your self.


Lots of love, luck and strength, Cas

[Marilee]

Thank goodness that you have other (hopefully better) doctors cycling through. If you only have to tolerate her 4 times a year, maybe that's something you can work around. Do you have a way to communicate with the other doctors between clinic visits in case you have questions or issues? For example, can you email them or call them? I'm just trying to see how you can continue to get decent care despite this one doctor.

[MooseMom]

Now, just you listen.

The vast majority of doctors talk to patients like they've only completed the third grade because they cannot fathom that anyone other than themselves have more than two brain cells to rub together.  So just you ignore that doctor because you KNOW you are intelligent and capable.  Don't let her make you doubt yourself.

The irony here is that she assumes you don't know what you're talking about, when, in reality, SHE is the one who doesn't know what she's talking about!!  She doesn't know anything about you and your capacity to learn!  You're going to be OK!

[iolaire]

Sorry.
1. See if you can find someone/center you can trust even if it means going a little farther. Hopefully being on home HD that is an option since you don’t need to go into the clinic as often.
 - You might be with a center and dr for many years so be somewhere you trust if you have options.
2. If you are in US and still on private insurance make sure you let them know you are unhappy as you are a cash cow until forced to move to Medicare as primary.  If you need your concerns to be addressed the time to do it is when they are relying on the huge private insurance payments.

Re my response above - sorry I didn't see this so most of my response doesn't make sense in light of it:

We can't change clinics because my husband's ESRD is caused by complications of an indolent lymphoma, and his oncologist, who is excellent, is affiliated with the same university as this clinic.  At least the nurse is good.  And thanks for letting me vent.  Sometimes I just need to be listened to and told it will be all right.

But yes things will be all right - hopefully a few months from now this round of stress will be in the past. 

My only other suggestion is to just setup the buttonholes on your own at home.  Maybe let the nurse know that you feel the buttonholes didn't get a chance to be established because of too many cooks in the kitchen.  Ask the nurse for the buttonhole supplies in addition to the sharps and give it a go out of sight (or just order them on the internet).   

[cattlekid]

This I completely agree with.  It's a sad state of affairs in the US but if it applies to you, use it to your advantage.

2. If you are in US and still on private insurance make sure you let them know you are unhappy as you are a cash cow until forced to move to Medicare as primary.  If you need your concerns to be addressed the time to do it is when they are relying on the huge private insurance payments.

[Michael Murphy]

The selection of Clinic and doctor is crucial and it is not a life time commitment.  If you don’t trust the doctor and/or the clinic replace them.  Check with your Nephrologist you trust ask for a better Clinic.  Tell your Clinic you will go monthly to your Nephrologist and only alow him or her to change your orders.  If the clinic doctor interferes with your doctors orders contact CMS and file a formal complaint.  If it becomes unbearable go to a different clinic.

[Simon Dog]

There are good MDs out there.

My neph :

• Typically returns emails with a subject line "Advice needed STAT" within 5 minutes (by phone call if requested)   Longer for questions not time critical (his iPhone is configured to alert to emails).  His email address is "direct", not a managed system that goes to a handler/gatekeeper before he sees it.
  
• Writes orders outside his specialty if he can help.  Slip on ice on a weekend and need an X-Ray order?  Nephy to the rescue.  Ditto for various RXes not directly renal in nature.
  
• Booked a one hour 1:1 with him in his office after it closed to discuss a variety of issues.  Didn't even bill me extra.
  
• Made arrangements for some non-standard support equipment in the D room when I had to go off of home hemo due to an injury in the family.  All it took was "things would be easier if ...."
  
• Actually researches the medical journals when I email him a question I wish to discuss at our next visit so he can be fully informed.
  
• Proofread and assisted in drafting my letter of complaint to a dialysis facility I used when traveling
  
• Visited me in the hospital when he was NOT on duty and I was covered by another neph.  This was an off the books "no bill" in person visit.
  
• Regularly called the D unit in the big hospital where he does not work to check up on how I was doing when under another neph's care.
• Managed my post hip replacement coumadin monitoring and dosage.
• A friend I referred to this MD had an Rx problem with a pharmacy one night.  He was amazed the MD was on the phone with the pharmacist 15 minutes after he called the answering service.   I told him the doc took much longer than usual because of the time it took for the service to relay the message to him.
  
Plus lots more stuff.    My MD thinks he is a concierge doctor but doesn't charge the monthly fee.

[aniawoman]

I'm sorry to hear this aniawoman. I also understand that your husband has to stay at this clinic. Are there any patients at this clinic who do have buttonholes?
I also would want to advise you to start listening a bit more to your self.


Lots of love, luck and strength, Cas

Thanks, Cas.  That's a good question.  Not sure I can find out the truth, though, or if it would mean anything.  Right before we started training, the nurse trainer retired, and we were assigned a nurse who had never trained anyone.  She was verbally abusive to us both, and I complained to the company that runs the clinic but got no resolution (I was told by someone at the clinic that the nurse was best buds with the doctor over the clinic).  Since were the first patient post good trainer, anyone with buttonholes would have been trained by her, presumably correctly.  When we started out, I wasn't taught to cannulate until 4 weeks in, by which time we should have been ready to be launched ( I was supposed to have been taught cannulation from the beginning). . Instead of teaching me cannulation and then having me establish the buttonholes, the nurse had four other staff people doing the cannulation to establish the buttonhole while I observed. She then tried to train me on cannulation at the "established" sites, all the time muttering in the background about how she was sure I would never learn.  Despite my pleas with the head nurse, nothing changed until the trainer made a gross error on my husband which one of the other staff caught. Things changed fast then, but by that time, but the damage to my husband's fistula had been done.  Of course, the clinic staff will never admit to any wrong doing, so the vascular nurse dismisses my concerns in her infantilizing voice and claims that my husband's fistula is not appropriate for buttonholes (it actually is the kind that would do best with buttonholes, as it is hard to find enough straight places to stick each day).  If we could change clinics, I would have done so a long time ago, but the same people work at the other clinic locations that are affiliated with the hospital/medical school where my husband's excellent oncologist is.  Our new home HD nurse is excellent, but of course she can do only so much because the problem lies with people above her.

There are good MDs out there.

My neph :

• Typically returns emails with a subject line "Advice needed STAT" within 5 minutes (by phone call if requested)   Longer for questions not time critical (his iPhone is configured to alert to emails).  His email address is "direct", not a managed system that goes to a handler/gatekeeper before he sees it.
  
• Writes orders outside his specialty if he can help.  Slip on ice on a weekend and need an X-Ray order?  Nephy to the rescue.  Ditto for various RXes not directly renal in nature.
  
• Booked a one hour 1:1 with him in his office after it closed to discuss a variety of issues.  Didn't even bill me extra.
  
• Made arrangements for some non-standard support equipment in the D room when I had to go off of home hemo due to an injury in the family.  All it took was "things would be easier if ...."
  
• Actually researches the medical journals when I email him a question I wish to discuss at our next visit so he can be fully informed.
  
• Proofread and assisted in drafting my letter of complaint to a dialysis facility I used when traveling
  
• Visited me in the hospital when he was NOT on duty and I was covered by another neph.  This was an off the books "no bill" in person visit.
  
• Regularly called the D unit in the big hospital where he does not work to check up on how I was doing when under another neph's care.
• Managed my post hip replacement coumadin monitoring and dosage.
• A friend I referred to this MD had an Rx problem with a pharmacy one night.  He was amazed the MD was on the phone with the pharmacist 15 minutes after he called the answering service.   I told him the doc took much longer than usual because of the time it took for the service to relay the message to him.
  
Plus lots more stuff.    My MD thinks he is a concierge doctor but doesn't charge the monthly fee.

[Simon Dog]

When I had buttonhole training, the nurse started the arterial with a sharp.   She then said "OK, your turn" and had me start the venous.

6 years on the same fistula, and the ONLY puncture on the buttonholes that I did not do is that single time the RN made the first stick in my arterial.

[aniawoman]

Sorry, but hearing others' wonderful experiences makes me feel more depressed and inadequate.  I need comfort and reassurance right now.

[kristina]

I am so sorry about what you are going through and I wonder whether there is a chance that you could change the clinic?
The reason why I mention this is, that in "the old days" I happened to have very bad luck with doctors and medics who did not appreciate that I suffer from a very rare genetically inherited disease and they just could not bother to read-up on it and treat me accordingly medically. Long story cut short, my bad luck only changed, when I myself changed all doctors and all specialists and all medica and since then it has been much easier and I am not so desperately sad and depressed and misunderstood and mistreated any longer. Mind you, suffering from a rare genetically inherited disease, which also also caused "my" kidney failure, is still very difficult, but at least I "only" have to deal now with the difficulties of the disease and not with incapable doctors and medics.
I understand where you are coming from and I do hope you can find a better clinic and if not, could there be a chance to have a word with the head-staff-nurse or doctor at that clinic? Head-staff-nurses and head-doctors are often extremely understanding and very helpful...
All the best good-luck-wishes from Kristina.

[Charlie B53]

It is up to you to Take Charge.

Politely but Firmly remind the Clinic that they have the responsibility to TRAIN you to provide the care for your Husband.

If they fail to provide the training and assistance there are places to file complaints that will make them cringe.

It is essential for all of us to take charge of our treatment.  Whether it is at home or in clinic, we have to be aware of what is happening, and be involved with making every decision.

Look up cms.gov IIRC the government agency that oversees al dialysis clinics.  They have rules that all clinics must follow in order to stay certified to get paid.  Lose that and get put on probation.  Clinics don't like that.

[justagirl2325]

Aniawoman I feel like no one had more trouble with needles other than me.  And I feel like we had good training.   My husband was on HD for 3.5 years, home hemo for all except the first 5 months, and the months he had other medical issues or the times we could not get HD to work at home.  The first year and a bit he had a fistula and a catheter and we used the catheter at home because it was there and we could not get needles to work easy.  He could not see well enough to do it himself. Then he got cath infection and that had to come out so we were forced to do needles.  The nurses at the hospital hardly ever had problems.  If they did they would switch from a blunt to a sharp and everything was fine.  I should say I'm in Canada so buttonholes are standard on home hemo patients.  No infection problems with those ever.  But we had many nights at home where I'd get one needle in and could not get the other...sometimes we'd try 5-10 needles a night, he'd get frustrated and I'd cry and it was so stressful.  The nurse would just say give up and try again the next night (we were doing HD every second night.)  Sometimes that would work, sometimes not.  So if it wouldn't work we'd have a couple of days that we couldn't do HD and then be forced to go into the hospital and they'd stick the blunt needle right in, so frustrating.  About two years in the clinic gave us sharps (they weren't supposed to but they did).  And those worked so much easier.  Try one blunt first and if no go I would use the sharp in his buttonhole and it worked 90% of the time.  When it wouldn't work I convinced him to let me try a different spot and we created our own buttonhole.  But I did penetrate it once which caused his arm to swell.  It was ok the next day, no major damage.  It was only in the last year that needles became easy.  I think it was because his fistula was very matured by that point.  he's been transplanted and I hope I never have to do that again.