You need a better PCP, one who is skilled at collaborating with other doctors! Sheesh! But I have had similar experiences with my dad. His PCP has "forbidden" him from going to other doctors. What ego. Unfortunately in my small community there are very few good PCPs. I hope you can find one. They are out there. Lukkiirish's suggestions are a good place to start. Find people who have gone through post stroke care in your community and see if they have any PCP suggestions. Sometimes though, a good PCP is just not out there. The key is just finding a GOOD DOCTOR. It is often odd who that might be. My dad's cardiologist is his best doctor, but unfortunately he only visits our community monthly. A lot depends on how good your hospital is and how good at collaborating the teams there are. In my community the situation is dismal, so I feel your pain.

I think I generally agree with the above --- a pharmacist can tell you now whether they see any issues with continuing the medication or not taking it until you can get with another doctor for DH. If you need an answer form a doctor and cannot get one, I would ask again and explain that a dismissal is not good enough and they would not be satisfied with that kind of treatment if it was their spouse or parent. If they say they don't know, ask them to contact the other doctor and get back to you before the end of the day. You need an answer. And if possible, confirm your question in writing. They are less likely to blow you off then because they know you have a written record in the event of a problem.

I would ask around -- nurses and folks who work in doctors' offices or other medical facilities are some of the best to ask for referrals. There are also online ratings, friends, neighbors, co-workers. You need a new PCP who will at least be active in coordinating care. It's possible but less likely you will find that in a specialist, but ideally you would get both who will work together. I saw coordination of care with my parents in their final years -- their PCP specialized in geriatric care. I think those who deal with elder care are more likely to need to coordinate care and deal with more complicated situations. I can't say my dad never was told he needed to talk to the specialist about a question, but he didn't get blown off either.

Be persistent, be patient, persevere.

Is there a patient advocate at the hospital? You may be able to hire a professional advocate or at least have a consult to put you on the right track.

So sorry you're in this situation. Hope you get the advocacy you need. I have no idea what will work as I'm having a terrible time finding a good doc. Mine (new to me) ordered a PSA test with my annual blood work (I am a woman).

Lukkirish - I finally received a call back from the PCP nurse and she said DH should be taking all the Rx's he was prescribed prior to the stroke. Well, that's not accurate since he was taking previously on a blood thinner. I will follow your advice and call my pharmacy and ask them to review his file for any interactions. Thank you for the words of support and advice.

Pink - He is forbidden to see other PCP's? Not only is that is egotistical but sounds a little sketchy - small town or not. I would love to find a good doctor for DH. My allergist is my good doctor. Now that you mention it, I will call him to see if he has a good referrals.

Lascatx - The people in my age group, 40-something, don't really have any experience with strokes. I need to ask my older family members but they are so worked up over this incident it's hard to have a calm, rational conversation with them right now. I would love to find a specialist but am not even sure where to look. I'll probably start with the hospital that specializes in strokes, like Lukki suggested. Also, I'm glad you mentioned elder care. My mothers doctor missed her glaucoma, instead having her get cataract surgery. They realized their mistake only after she complained that it didn't fix her vision issues. I'll have to ask if she's seeing a geriatric specialist.

Mimou - I hadn't thought about hiring an advocate. I didn't realize that was possible and will look into it. I can get intimidated in the face of authority and falter at questioning their actions. I can see where a advocate would really help.

Delilah - I hope I don't offend you but...that made me laugh out loud. The cats jumped! Your new doctor is either a genius yet to be discovered or in need of some serious help. Good luck on your hunt.

I also agree with Lascatx, you may want to consider letting the medical staff know that their dismissal is not acceptable though it may not matter, with the way medicine is set up now, most physicians don’t want to step outside of their specialty “box”. I answered earlier on my phone while at work, but have been thinking about your situation all day, I hope your husband will be ok. I happen to work in a lot of clinics and most of the physicians have a group of specialists within their hospital network that they refer their patients to, so his previous doctor may have a name for you. Also, you mentioned that there is a hospital in your area that is better equiped to care for stroke patients. Most hospitals have a “concierge” type center where you can get help with arrangements for care as well. That actually may be the best place to start.

Jennifer, my heart really goes out to you. I’ve been in similar shoes with no knowledge (at the time) of what or how I was going to navigate the best options for my husband’s care. I can guarantee you that in short order you will no longer be intimidated by what seems like authority. The best thing that you can do is question anything and everything that doesn’t make sense to you and if the professional you’re seeing doesn’t appreciate the questions, FIND SOMEONE ELSE. Try not to think of the medical staff as authority but instead as people who are working on YOUR team to make sure your husband gets the best care possible.

Lukki, thank you for the pep talk and the reminder that I need to view things from a different perspective. His care should be a team effort, especially with so many doctors involved. DH and I are both slightly stunned that our doctors don't see this and don't appear to be willing to work with each other. Tomorrow mornings agenda is to call my pharmacist and the hospital that specializes in stroke, KU Medical Center. I don't think I'll call the offices that dismissed me, not yet anyways. I highly doubt they'd really care. I just need to move on from them. Oh, you have me fired up now!

There are two types of stroke, ischemic and hemorrhagic. Ischemic is due to a clot, while hemorrhagic is due to excess bleeding. It is very important for whatever doctor/pharmacist/nurse you talk to to know which type your husband had since the medication recommendations would be very different.

Jennifer, you did not offend me at all! You needed a laugh, but I was not trying to make light of your predicament.

Do you have concierge medical practices in your area? In a concierge practice, doctors severely limit the number of patients they see. A patient pays a "membership" fee to get immediate attention from the doctor. Some practices guarantee you will see the doctor the same day you call with an emergency. The doctor oversees treatments from all other specialists attending the "member" to ensure the patient's problems are not mishandled and passed off as your husband has experienced. The kicker is the "membership" fee is not covered by healthcare insurance and the member must submit their bills to the healthcare insurer as the doctor does not. I have a friend who had multiple medical issues and nothing was getting resolved. One year's membership got everything turned around.

http://www.kansashealthsystem.com/neurosciences/stroke-center/our-doctors

Suggest making an urgent appointment with your PCP, bringing in all his medications and getting in writing what he should be taking. If the PCP is not sure, they should be contacting cardiology, neurology, or neurosurg to confirm.

Your hospital discharge paperwork should have listed any & all medications he should be taking.

Good luck.

Navigating the maze of the health care system requires tenacity and knowledge, and indeed, as lukki says, not for the fainthearted. In your case, a health advocate may resolve these issues than traveling solo. This link offers an explanation of services and helpful contacts:

https://www.ahrq.gov/patients-consumers/patient-involvement/health-advocate.html

Best wishes!

They are called PRIMARY care because, in theory, they are overseeing, coordinating, and managing your overall care. Your PCP should have received from all the consultants their recommendations addressing each of their bits of turf. He/she should also be able to access the discharge summaries or sign off notes from the hospital to see what each recommended. If he doesn't know or can't find the information in the paperwork/records, he should be making the effort to contact the specialist himself.

Also, I thought it was a NATIONAL standard of care (and regulatory requirement) that on discharge, in the discharge instructions given to you, each of your pre-admission medications are reviewed and instructions given whether to stop taking, change the dose or frequency, or resume/continue taking -- along with all new medications prescribed in the hospital. The only exception would be if they somehow didn't know about this medication, or perhaps if it is a medication that needs to be stopped for an interval during recovery but should be resumed later -- but the discharge paper should tell you to contact such and so MD for followup on that.

I'd be looking for a new PCP. I am amazed at the responses from the office staffs of all 3, each passing the buck. (I give the discharge nurse a break, she really wouldn't have the means to know or find out for you now. That instruction needs to come from an MD.)

I think going to the stroke center is a good idea, although I wonder if you can get plugged into a new provider for follow-up, having already been through another system (some systems can be odd about that).

I'm responding several days late, so I hope you have had good luck with your calls.

I'm always amazed that the hospitalist would change my mother's medications or dosages, without a complete understanding of why she could not take them or take them in that way. And just now, when she went from hospital to rehab, the rehab was going over her meds with me that they'd received from the hospital, and the list included things she hadn't taken in years. The hospital had gone over the list with me when she had arrived, I gave them her current list, and no discrepancies came up. I don't know what happened.

On a side note, after my son was in the same hospital a couple of weeks ago, we got a denial of benefits from the insurance that we had 5 years ago. That was NOT the card I presented when he was admitted. Sheesh.

Good news! We tracked down and re-engaged one of DH's previous PCP's. DH really liked this guy but the doctor left our network after frustration with the hospital. He is considered out-of-network for our insurance plan but it's a small price to pay for trust & confidence. We met with him yesterday and we have high hopes. He was familiar with our assigned doctors and was not surprised by our hospital experience. And he's completely on board for a new neuro & cardio team.

I did some research on concierge and direct primary care options. I really like the concept and will keep these options open. Filing my own claims would be a learning curve but certainly achievable. Personally, I don't find the membership fees to be exorbitant, especially considering the level of care they provide. That said, I am not 100% comfortable with it yet and need to do some more research.

The pharmacist talked me through all of DH's meds and there are no interactions. As for the discharge papers, yes, they did list his medications and the nurse went over them with me. It wasn't until I got home and starting filling all his pill boxes that I realized something was off. We'd verbally been told by several doctors and APRN's that certain prior medications would be stopped. The discharge papers still had them listed, though. I just needed someone, anyone, to confirm he was supposed to take it.

I have a renewed appreciation for caregivers.

-J

bpathome, Good thing the rehab facility checked with you! I hope your mother and son are OK. As for the insurance piece, my hospital has that down to a science ($$$)