O.T. - A different kind of question

Ed1937

Sometime today I will be going to the place where one of my daughters goes for kidney dialysis, and I need to speak with the person who has responsibility for how things are run there (the top boss). But I'm unsure of what the title of that person would be. Would it be "administrator"? Or something else? I want to make sure I talk to the right person.

She had dialysis Saturday, and stopped by my place on her way home (she drives herself). She told me she got sick during dialysis, and her phone was very high - 200 plus over 100 plus. She was suffering from aphasia. It was her blood pressure. She still has trouble with speech. She was bad enough that I called for an ambulance, and they took her to the hospital. Blood pressure was 227/127 when she arrived. Yesterday morning it was confirmed that she had a stroke.

So they had to have known in dialysis that her BP was that high, otherwise she wouldn't have known it, and they allowed her to leave, and drive. So I will be raising hell today at the dialysis center. Who should I ask to speak with?

M1

Ed, I think I would ask to speak to the charge nurse and ask to see what her blood pressures were during dialysis. Hard to know if there was something they should have seen that they didn't....I know you must be very upset and I'm sorry this happened to her. End-stage kidney disease is a bad thing, lots of vascular complications.

harshedbuzz

Ed-

I am so sorry, that sounds terrifying. You did right by getting her to the hospital. How is she today?

I would ask your daughter to think about her next steps before you go off on anyone. Assuming she is a competent adult, she may have strong opinions about her next move and doesn't want you going all Papa-Bear on them. If she wants to consider litigation or if this is the only game in town, you raising hell with anyone might be counter-productive. If she's no longer able to act on her own behalf and you are her POA, then your next conversation should be with an attorney.

HB

Sandias

Hi Ed. How is your daughter's condition now? What is her prognosis? Is she expected to recover fully from the stroke? Will there be some permanent damages? Time is of the essence after a stroke happens. If discovered andtreated right away, there's a good chance there won't be permanent damages.

I am angry for your daughter and for you. However, before you go barging in and demanding to speak to the top guy/gal that runs the place who could be just an employee for a corporation, you had better be prepared. If you don't have MPOA,or on HIIPA for your daughter, they most likely won't talk to you and will have you escorted out if you make a scene.

I recommend you speak to a reputable Medical Malpractice attorney right away to get his/her advice. Record keeping is crucial.Timing is crucial.

I'm praying your daughter will recover fully from the stroke.

Jo C.

Ed; I am so very sorry, what an awful thing to have happen; I can well understand your anger. I so hope your daughter is doing well and recovering well. In my professional life, I was not a dialysis nurse, but the following is some information that may be helpful.

Think about this before you sally forth to confront the situation as there could be legal implications; also you would not be given information from the dialysis center due to HIPAA issues. One question would be, what would your daughter want to be done? I would at least probably report this to the state since it appears it may be a lapse in quality of care. There are difficult issues with dialysis and many of them being vascular; the patients are very complex. If it appears the patient may possibly have been put at risk that caused a significant negative outcome requiring hospitalization that potentially could have caused a permanent disability or could possibly even have been fatal the state will take action; however, one would need to know more.

The Indiana Department of Health oversees and inspects Dialysis Centers for the state. (I think I recall you may be in Indiana.) Here is a link re that department:

https://www.in.gov/health/cshcr/acute-and-continuing-care/end-stage-renal-disease-facility-esrd-certification-program/#:~:text=The%20Indiana%20Department%20of%20Health,for%20Medicare%20and%20Medicaid%20Services.

A person to make a full on complaint to would also be your daughter's Nephrologist if daughter permits you to do so. A Nephrologist would also be the Medical Director of such a dialysis site, but they are usually not physically present; this person may be your daughter''s Nephrologist or not - it would be good to know. I would also want to know if he/she is owner or part owner of the dialysis center which is not unusual. If there were explainable circumstances, the Nephrologist could outline them, but again; HIPAA would be guiding that if your daughter has not signed a HIPAA Waiver with your name on it.

There would have been a Nephrology Nurse or perhaps even a NP or PA who oversees the entire center each day, but that person can change from day to day. Technicians usually run the actual dialysis process. Question is; who was the individual who took your daughter's vitals and deemed her stable for discharge by herself? The patient's record will show this but you will not have access to that.

When it is able to be done, if your daughter feels it is an issue, I would want a signed consent from my daughter to obtain a copy of her records - that will show what the staff had documented on her dialysis stay and discharge as this could have legal implications and you do not want records to possibly be altered in anticipation of possible state inspection or even legal action.

Here is some information from the National Kidney Foundation re how to make complaints re dialysis centers:

https://www.kidney.org/atoz/content/dial_billofrights

The next explains the usual dialysis care team at dialysis centers:

https://www.kidney.org/atoz/content/dialcareteam

The most important thing is that your daughter will fully recover. Having a state inspection based on your complaint will mandate the center address problem issues based on what the inspectors find. If you do decide to go to the center if your daughter consents to this, be careful of what you say - I personally would not inform them that I was going to make a formal complaint to the state or to an attorney; this would only put them on notice to clean up their act and adjust records if they can. In most medical centers, including hospitals, such a complaint would cause the patient's record to be flagged as a potential "legal" issue whether it is or not; it is also usually flagged for the Quality Assurance Department to monitor. Don't know whether or not the Dialysis Center would follow the same sort of oversight or not.

Please let us know how your daughter is doing and what happens with all of this.

J.

Ed1937

Thank you for the quick replies. Yes, I'm more than upset because she could have run into a crowd of people, killing several. Thanks for bringing me back to ground level. It's too easy when upset to make simple mistakes.

We are not litigious people. I had a stroke in 1995, and in the year 2000 I actually had another doctor tell me she felt that the hospital was responsible for my stroke because they overdid it with an angiogram (I think that's what it's called), which lasted way longer than it should have, because they were having a hard time getting into a carotid artery (after TIA). The doctor actually encouraged a lawsuit, which astounded me. I refused to do that because they were trying to help me. It's not like they were high on drugs or anything else.

She always signs a HIPPA form for me, and I would be surprised if she didn't do that for dialysis. But that's a good thing to consider.

How quickly things change! I just spoke with her. She sounds great, with no aphasia, and she says she feels normal. And a different doctor came in to tell her she did not have a stroke! It was all due to high BP!! She was not able to finish the MRI because she is claustrophobic, and they were considering trying again because they only had limited information. Not sure now if they will do that or not.

Again, thank you!! All appears good, at least for now.

Quilting brings calm

Possibly a TIA then rather than a stroke…. Or simply the high blood pressure I guess. I’m definitely not a medical person.

I wish I had any advice about whom to discuss this with other than her own doctor.

Jo C.

If they do not want to sedate her for an MRI, perhaps she could have one at an open MRI setting which may be much easier for her. I too cannot tolerate an MRI - I never knew I was claustrophobic until one day I had an MRI scheduled and HOO BOY! Embarrassing, but very real. Ah well.

You are a good Dad, Ed. You are there for the kids when they need you and you have a LOT of them! How is it working out with Michael by the way? Any luck on residences for him as yet? Hope he is maintaining well.

J.

White Crane

Dear Ed, I'm so relieved to know she is okay. That must have been terrible for both of you. You are a wonderful and caring father.

Caro_Lynne

Glad to hear your daughter is doing well! No matter their age they are always our babies.

Several years ago I (and google) self-diagnosed myself with ocipital nerve damage; had all the symptoms. Went to doctor to request MRI in order to confirm my diagnosis. Turns out my BP was 230/129; my doctor was shocked I did not have a stroke and was not in the ER.

Ed1937

Thank you all again. They didn't do another MRI. They have a nurse in ER who only works with stroke patients, and she was seeing my daughter every so often, although she was not her regular nurse. She told me they didn't have enough information from the MRI that was done, but one doctor told my daughter that it was negative. I have not been able to talk to her doctors, even though I've spent quite a few hours there. So I still have questions that may never be answered. It's possible she may be released today, depending on the results of an EEG.

Jo, thanks for asking about Mike. When he was in the hospital the last time, they gave him an injection that was supposed to last a month. He has been a much different person since then, and I wish they would have tried it before. He is due for another injection in a few more days. Difference between night and day.

Nothing new in way of a place to live, but he is much less agitated about living here now. If something comes available (an apartment), he might take it. For now, everything is as good as I expect it to get. No real problems. Thank you again.

Ed1937

BTW Jo. Have you ever been in an open MRI? From everything I've seen and read, they are not really open, as you might think. I had an MRI 2 years ago in what they call an open MRI. I was in there for just about an hour for my pancreas. Not a huge difference from typical MRIs. I kept my eyes closed the whole time so I wouldn't freak out. That thing is still pretty close to your face. Not fun. I was reading not too long ago that there is 1 actual open MRI in the U.S. I think it's in NY.

Jo C.

So very good to hear about Mike; that is awesome and must feel heartfelt wonderful for both of you.

No; I have not been in an open MRI machine - there are multiple different kinds of them. Our DIL who cannot tolerate a regular MRI had one done in an "open" machine and said she was not closed in and it was fine with no problem.

If I have a CT Scan, I have no problem with being put through the "donut," but have a friend that cannot tolerate even that.

I think that sometimes in some of these diagnostic machines; even x-rays, surfaces are very hard and some diagnostic tests can be lengthy, that can cause significant back discomfort/pain and that can also be a problem issue for the poor patient.

Come on Star Trek diagnostics! Remember those from the program and Dr. McCoy know as "Bones?" If only . . . .and they could cure pretty much anything with a wand passing over the body or simply lying on a table with nothing touching but an overhead light . . . . and I want to go into the Holodeck and be anywhere from any time that I wish . . . and of course, Data the android and Captain Jean Luc Picard could come with me.

J.

Joe C.

Ed, Sorry you had to deal with another scare but I’m happy to hear that your daughter is did not have a stroke & that you son is doing better. You have certainly had more than your share on your plate. Hang in there my friend!