Question about Setting a plan

[Conniebear]

Hello guys I am new to this. I am a Current cargiver to my husband who is only in his late 30's and dealing with CKD. Can I just say a couple of things about this disease. I don't know how many people will agree with this post or get mad at it.

So for startes I would have to say I hate that how none of our doctors like to work together as a team. You have one who won't talk to one another and or get a plan together. I don't know if it is me who notices this or if anyone else has had to deal with this. I think my biggest gripe is if you are a cancer patient you get a whole team and get a plan, not for us. We were thrown to the wolves on a lot of things. I wanted to know how did you guys get everyone in the same room and or same page but work togehter and not by email and or playing phone tag. I feel like this is just happening to us.

Please help with any advice.

Connie

[Hidden]

Hi, and welcome.

You are correct about your observations. I can only tell you what I think should be done. Since you are writing for your husband it will have to be his decision. Have you ever heard the phrase, "You're fired!" Forget the user, that's not where I'm going. Your husband has the right and frankly the expectation, regardless of his insurance coverage, to find a doctor(s) to treat him who will offer him the best medical advice they have and then accept his decision, and treat him accordingly. Any physician who is unwilling to follow that directive from your husband must be replaced with another physician who will abide with your husbands' wishes. It is so critically important for your husband to put together a Care Team of people that will follow his wishes. It can be done. I've done it.

To date, I've replaced four primary care physicians, one cardiologist, one hematologist, one nephrologist, one endocrinologist, one rheumatologist, one urologist, and one internist. Every member of my Care Team including a dentist, pharmacist, retinal specialist, optomitrist, a general surgeon, a vascular surgeon and their staffs are all on board with my being in charge of my health. It's my life, my health and therefore, MY CHOICE.

Also, to legally protect your husbands' wishes have him prepare two documents. One is an Advance Directive and the other is a Living Will for Healthcare. All of my physicians have asked me if I have one, and when I travel I have copies with me to be sure that anyone I encounter for medical services will have them at hand.

Best of luck.

[Jayhawker in reply to Hidden]

Very well stated!

I've done exactly the same. The third ophthalmologist was a keeper. I'm moving to a fifth general internist and a third nephrologist later this month. (Part of these shifts are due to a move I made last summer.)

I also won't work with doctors who don't communicate with one another on a regular basis. I haven't been able to get them in the same room at the same time but I have been able to get them together as a team via video conference technologies. They just do this 1-2 times a year. But that's a good start.

And, like Mr Kidney, I'm 100% in charge of my medical care. I arrive at every appointment with my renal panel data and data from other tests that have been performed. I also have blood pressure readings. (I'm not in dialysis yet.) I bring 3-5 questions. We spend the second half of every appointment focused on patient education. I can't take care of myself effectively if I don't understand my medical condition and it's progression.

I'm a female patient. It seems as though many of my doctors are not at all used to working with a female patient who is this actively engaged in her medical care. But I am single; live alone; and I'm the last person living in my immediate family. So, they've pretty much got no choice but to work directly with me🐶

This patient advocacy piece is critical. I have just approached my doctors with the expectation that they will work closely together. Anyone who won't join my team or isn't a good team player gets replaced. I do have good relationships with the doctors on my team and their staff members.

Marj

[TheOther_MrsRobinson]

Hello there ConnieBear !! I am caregiver to my husband who is turning 41 this year, and i couldn't agree more with what Jayhawker and Mr_Kidney have already stated so perfectly. You, besides youre husband of course ( and as caregiver, sometimes for youre husband when he's overwhelmed ) HAVE be in complete control and the highest & first advocate for his health. Its not only our right, its for our SURVIVAL. We switched our whole dialysis center last year because our previous center stopped putting the patients first during a transition, and my husbands health actually IMPROVED. Although he goes to a Fresenius center, our Nephro is under the same medicine enterprise as our now PCP, who We also switched last year and that has worked out well because they BOTH believe in working as a team. We live in Baltimore, and have switched ALL of our doctors, including mine, under Johns Hopkins medicine group. All of our records are now in the same place, and NO one makes a decision without communicating with the other first. It truly is imperative that you and hubby make that clear from the GETGO. It may be rough at first finding the right fit, but it truly is well worth it and necessary when you do. Thanks for sharing your story with us !

[cs65 NKF Ambassador]

I have kind of the same issues with my doctors. My nephrologist, cardiologist, gynecologist, oncologist and surgeons are all with my local hospital system, however my primary care practitioner is with a different hospital system and my transplant center is a third hospital! My PCP complains that she doesn't get bloodwork or doctor's notes from my nephrologist as she does with the others (we're still working on getting at least the bloodwork sent over). She has helped me tremendously in coordinating all the specialist referrals I have needed and does a fine job coordinating my care. My first nephrologist here was very helpful in getting me in touch with the transplant hospital. Sometimes you just have to cobble it all together, I guess!

[Gotthecall_123]

No,not at all im from Canada the health

care here is totally different than the states but ive talked to many people with similar stories what i tell them is you have to Advocate for your husband like crazy do the research Call umtil you drive them crazy be a pain in their asses😬 dont take no for an answer stay💪Have 🙏and good luck😝

[pdbetterhalf]

Conniebear, you are not alone!! You are the best advocate your husband can have because often the doctors, nurses, PAs, etc., will assume that the patient's not thinking straight if they are not feeling well and are sometimes more willing to accept your observations. I have found that to be true in working with my husband who was just switchd from at-home PD to in-center Hemodialysis. But emphasis on the "sometimes"--I pointed out that my husband's condition was taking a quick dive in the hospital once and it took them hours later, after a shift change and a nurse that saw him the day before noticed the drastic change in his condition, before they took action. You have to be his voice when he cannot speak for himself.

[mhawk123]

I agree that if you can set up your doctors within the same health system, their computers will be connected. If not, do like I used to do, get copies of everything so that you can present the medical record copies to the physicians needing the results. I praise you for being his advocate and partner through this process....Keep the faith!