Not getting the medical attention needed

[AshtonsMuse]

My husband is new dialysis, but I feel like he is routinely not getting the medical care that he needs.  It also seems no one is in charge, if we ask the nephrologist they deflect to the clinic, and vice-versa.  At the clinic, we only see a nurse practitioner, once a month.  I'm wondering if this is standard operating procedure or if we just have a crap draw of the clinic/neph.  My husband has been severely anemic since before Christmas and they have not done anything to treat it.  I assumed they were, but when I pressed them, I got told "well, he should be receiving iron via his iv"   Is he? No.  They started him on the IV iron after I complained.  I'm not allowed to be apart of his care once he goes back to the treatment room, so I have to do all the work to find out his condition on my own.  Meanwhile he has lost over 40lbs. in less than 3 months.  When I complain about that, I'm told its just water weight.  His skin is sagging and he fits into the clothes our teenage son wears.  Still just water weight.  Sorry if this has been covered in other threads. 

Thanks

[Charlie B53]

Individual Clinics do have differences and still need to be address whenever the Patient has questions about their care.

Labs done monthly to identify areas of concern.  Iron can be prescribed as a dailoy medication to be taken at home..  If iron gets too low then IV Iron can be administered.

His Neph should be seeing him EVERY month at his normal Clinic visits.

Complaints can be made to CMS.  Sorry, I don't have the contact information.  CMS is the huge gorilla that over-sees Dialysis clinic st oensure complience with Federal guidelines.  Complaints are taken VERY seriously.

Search this site for CMS and you should find plenty of threads to review.  All should have good information, many with contact information.

Stay active in trying to be informed of his treatment.  Family needs to take an active part in his care.

Keep asking questions.

[smartcookie]

You should be able to complain to the clinic manager.  And yes, the doctor should see him at least once a month, but the doctors in the main group here take turns rounding once a week.  Once a month, your husband's whole healthcare team should be meeting to go over his labs and treatment plan and any concerns in between meetings should be addressed by your dialysis nurse communicating with the doctor.  You can complain to CMS here https://www.medicare.gov/claims-and-appeals/file-a-complaint/complaint.html.  I would submit a typed letter to the clinic complaining about his care and lack of communication regarding his weight and anemia before submitting to CMS so you can have written documentation with dates to submit to CMS with your complaint. I am not sure how your facility handles complaints, but you should be able to talk to the clinic manager or social worker about any complaints. 

[PrimeTimer]

The weight loss might have been water weight. My husband's clothes got saggy on him, he went down a pant size. Think he needs to go down another size again. Also looks like he has lost some muscle tone. For anemia, they will probably either give him EPO or Micera (not sure about the spelling) along with the IV iron. There's a post on that I think under "General Discussion". Took my husband a few months before his hemoglobin got back up to an acceptable level. Maybe ask if they can give him a readout of his monthly lab report to take home for you to keep track of. Kind of mentally helped me to see his numbers from month to month and any trends. The dietitian at my husband's clinic is the one that gives him his monthly report, maybe your husband's will do that for you guys too.

[Michael Murphy]

I started dialysis at 330 pounds 4 years later I am down to 295.  I am not on a diet but  the weight loss, while not a bad thing in my case, is due to the side effects of hemo dialysis, along with the toxins you also lose good things like protein.  To be able to speak to the clinic and doctors have your husband declare you his health care proxy, with out doing that HIPPA stops medical personnel from talking to you.  Finally if you don't have complete faith in your doctor or clinic find one you do trust.








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[Simon Dog]

To be able to speak to the clinic and doctors have your husband declare you his health care proxy, with out doing that HIPPA stops medical personnel from talking to you.

It is also possible to grant a release allowing designated persons to have access to your records without giving them full health care proxy authtority.

[AshtonsMuse]

Thank you for all the helpful information.  My husband spoke to the administrator at the clinic and at his next treatment, things already seemed to improve, there was definitely more communication.  I'll have to check on the health care proxy, but I think it was just one nurse who didn't want to include me in his care, because I had complete access until she got hired.  I didn't know we were supposed to see his neph every month or that they're supposed to meet to discuss his treatment plan.  Can we be a part of that meeting or at least be notified of the results of it?  I'll be incorporating letter writing into my future communications so I have a trail of what's done.  I have confirmed he's getting IV iron for the next 10 treatments for his severe anemia and he's getting EPO.  When he was first put on dialysis at the end of Sept, his hemoglobin was a 6 and he spent 4 days in ICU.  His numbers came up before Thanksgiving to a 10 and then all through December the hemoglobin kept dropping back down to a 7. I would have thought that since he was hospitalized again for it, and that Nurse Practitioner (not the doctor) saw him both in the hospital and at the clinic, that they'd have put him on the iron automatically.  My bad for thinking that.  That's why I feel like there are gaps in his care.  I definitely don't have complete faith in the clinic or his nephrologist or should I say NP, since we have only seen the doctor once at clinic, and once at the hospital briefly.  I think they're probably good at what they do, just extremely overworked, because there are too many patients for the size of the clinic.

[Simon Dog]

It is worth having the patient sign up for on-line access to lab results.   I get this at Fresenius and I would be shocked, shocked I tell you, if DaVita did not offer a similar service.







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[Michelle2016]

As a patient, you can request to see a nephrologist instead of PA.  There is a big difference.  It's totally up to you if you want to visit him once a month.

[iolaire]

It is worth having the patient sign up for on-line access to lab results.   I get this at Fresenius and I would shocked, shocked I tell you, if DaVita did not offer a similar service.

DaVita does provide online access and email notifications if you sigh sign up. Usually the Wednesday labs are up on Friday around lunchtime.  They also do labs about every two weeks for anemia.







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[AshtonsMuse]

It is worth having the patient sign up for on-line access to lab results.   I get this at Fresenius and I would shocked, shocked I tell you, if DaVita did not offer a similar service.

DaVita does provide online access and email notifications if you sigh. Up. Usually the Wednesday labs are up on Friday around lunchtime.  They also do labs about every two weeks for anemia.

My husband signed up for the Davita online records, I wish it had more of his labs, but I can only find a handful of results.  Do you know where to sign up for email notifications?
Thanks

[AshtonsMuse]

As a patient, you can request to see a nephrologist instead of PA.  There is a big difference.  It's totally up to you if you want to visit him once a month.

I'll tell my husband, he would much rather see the doctor.  Thank you!

[Simon Dog]

My husband signed up for the Davita online records, I wish it had more of his labs, but I can only find a handful of results.  Do you know where to sign up for email notifications?
Thanks

Sorry, no, since I am subject of the Fresenius empire.    Fresenius does not have "email notifications", but on-line access to results.   They are usually available at the same time the MD can see them, however, they sometimes get screwed up after a trip (since the lab changes either my home clinic or MD and this breaks the linkage between the database and the patient portal).

[Michelle2016]

When you make Doctor appointment, make sure you want to make appointment with a doctor, not s PA.

[AshtonsMuse]

My husband signed up for the Davita online records, I wish it had more of his labs, but I can only find a handful of results.  Do you know where to sign up for email notifications?
Thanks

Sorry, no, since I am subject of the Fresenius empire.    Fresenius does not have "email notifications", but on-line access to results.   They are usually available at the same time the MD can see them, however, they sometimes get screwed up after a trip (since the lab changes either my home clinic or MD and this breaks the linkage between the database and the patient portal).

Thanks, I will just keep checking the online portal.  His latest pth and phos just came in and they're both lower.  I am relieved.  Not quite in range yet, but getting closer every time.  Still trying to get a grasp on those two evils. 

[iolaire]

My husband signed up for the Davita online records, I wish it had more of his labs, but I can only find a handful of results.  Do you know where to sign up for email notifications?
Thanks

At this page, found via the account link on the homepage:
https://www.davita.com/mydavita/account-settings
select "Privacy and Settings" and then the "Email" tab, in the first column is a checkbox for "Lab Results Notifications" and click save changes on the right side.

Yes, the labs you get through DaVita online are the standard labs they do frequently, it will not provide results for say a 24 hour urine test or the test to make sure the Hep-B vaccine is still working.  Honestly in three years these labs are basically all the lab work I get since my main problem is my kidneys.  I'm sure people with other problems get a lot of labs but most likely those are managed by other care partners.

For those that wonder here are the tests logged in the DaVita Health Portal (with history)
Dialysis session data
Starting Weight (lbs) /ending
Starting Weight (kg) /ending
Starting Blood Pressure /ending
Starting Pulse /ending

Labs
ALBUMIN
HEMOGLOBIN (tested frequently as needed)
CALCIUM CORRECTED
PHOSPHORUS
PTH Intact
OTASSIUM
spKdt/V Dialysis

Everything appears to be monthly except HEMOGLOBIN which can be every week at times. I believe they monitor it closely to adjust the medicine.

[AshtonsMuse]

Thanks for the info on the Davita site.  I went and made sure to check the email notifications.  Those are the same results my husband gets with the addition of cholesterol, which is always low.  I'm not sure why it's included as one of his goals.  Oh well, it's always "green" so I guess it's something in his favor.