Demanding patient

[cday]

I thought you might be interested in a conversation my husband had with the cardiologist that oversees his cardiac rehab. We were initially talking about having a stress test that could emulate 7 METs (tennis playing level).

Cardiologist: Are you the sort of patient that demands a lot from his doctor?

Husband: No, not really.

Cardiologist: You should be. You need to make sure you tell them what activities you want to get back to. Many people only need to rehab to a walking fitness level. You are wanting to return to a much higher level.

My husband and I think that many times we get rather pat answers from the PAs and nurses (maybe as it should be) -- but they seem to be made without critical thinking. For example: nurse telling him to exercise more to raise his HDL even though they knew he was very active already -- I laughed and said, "He would have to quit his job to exercise more than he does now!"

I hope it will be different when we meet with the cardiologist -- otherwise, I will be looking for a different doctor.

So, we should all take charge and be a demanding patient. I don't know if I even know enough to be demanding, but this site has already given me a list of many questions to get answered. Thanks for sharing your stories and experiences.

 

[Nancy]

I quite agree with you. Everyone needs to be a strong advocate for their own health and those loved ones who are not feeling too well.

I became a very strong advocate for my husband after his health started to interfere with his ability to advocate for himself. He was a very tough guy when he was feeling well.

It was the most difficult thing I have ever done. I was brought up to be polite and "nice". Nasty and incompetent doctors and other medical personnel forged my attitude, it was become "demanding" or watch my husband suffer or even die. Once you do something strong, the next time it will become easier and easier with each subsequent "strengthening exercise".

Yes, there will be some who will dislike you, and yes, there will be some that will hate you. Some doctors will try to get rid of you as fast as possible.

This is all to the good, because the ones that are left will be the best of the best. They are the ones who are not threatened by a strong advocate and they are the ones who will listen and do the right thing.

I can truthfully say that being a strong advocate probably added at least a couple of years to my husband's lifespan.

Along with this goes educating yorself the best you can by reading everything you can get your hands on regarding whatever ailment is at hand. You cannot communicate with medical people unless you have some kind of understanding of what you are talking about.

If they are not talking about you behind your back, you are not strong enough.

 

[lance]

Very well stated

Very well stated

Good for you Nancy. Your comments are right on. I think I need to emulate your outlook and actions.

 

[Nancy]

You would be surprised at the number of medical professionals that complimented me on being a strong advocate for my husband, many were right in my corner.

Of course, you wouldn't be surprised at the number who probably wanted me to have a prostate exam

 

[Blanche]

Nancy's my mentor!!!!!!

Nancy's my mentor!!!!!!

I agree with Nancy and I practice what she preaches. I have learned so much from this dear person since I came here many years ago. I already had a head-start on being my husband's patient advocate after he had several strokes in 2000. One stroke was quite serious.

When my dear one had his strokes, I chose to stay with him in hospital around the clock. If I had not made that choice, I am positive that I would have become a widow and he never would have left the hospital alive.

After one very bad night, I saw that the medical staff was not doing what they should have been doing for him. And, the doctor on-call would not talk to me, I decided to act. The next morning, I arranged to have him transferred, by ambulance, to another hospital that specialized in strokes.

Since that time, I have accompanied him to all of his doctors' visits. When he is hospitalized or in physical therapy, he is never alone. If I am not with him, his dear friend, my dear friend, or his son is there on the spot.

It is MY JOB to be demanding. Not too long ago, a doctor said, "Who do you think you are?" I told him that I was my dear one's personal pit bull. And, I arranged to have that doctor removed from my husband's care and replaced with a different doctor who praised my "demands." It did help that I had a medical power of attorney.

THere is a very good book that you might want to read. It is avaliable at on-line bookstores. My Public Library also has copies. The title is, "How to Get Out of The Hospital Alive." It was written by a medical doctor after he had a hospitalization for a serious condition. I highly recommend the book.

Disclaimer: I have no association with, nor have I ever been associated with the author of book I have recommended. I do not receive a commission. As a matter of fact, I can't even remember the author's name.

I hope this was of some assistance to you. Please contact me by PM if I can be of any assistance.

Kind regards,
Blanche

 

[pamela]

When my son was in the hospital he was in no condition to understand the neccessity for the painful and frequent dressing changes and surgeries. Drugged into oblivion most of the time and in fitful slumber the rest of it, his concern was to do whatever he needed to, to save his arm.

I had to do the rest. I was there for every pre-op, every dressing change and as many of his med administrations as I could be. I checked his chart every morning and the nurses were very p*ssy about my doing so but there came a day when their drug count was off and they were trying to deny him his shot of dilaudid (a more distilled version of morphine) saying that they must have already given it. It turns out, that the nurse had actually duplicated the entry in the log and when I asked her about the times on the sheet, she noticed that one didn't have a time beside it. I have no idea what that implied, but my boy got his medication.

I made the doctors all stop and explain to us both every medicine change, every implication of his chart entries and all surgical results. It was more difficult than delivering him (believe me that wasn't easy -- my obstetrician apologized for the dangerous forceps delivery and for leaving me in labour too long to have a C-section). Last summer was also one of my most rewarding experiences since I shudder to imagine how his psyche would have coped with the amputation without the foreknowlege of its inevitability. It was my job to make certain there was continuity and quality in his care and to equip him for the loss of his arm and I like to believe I did that very well.

We need strong and fearless advocates. If you can't find one, you truly need to learn how to do it yourself.

 

[Susan BAV]

You would be surprised at the number of medical professionals that complimented me on being a strong advocate for my husband, many were right in my corner.

Of course, you wouldn't be surprised at the number who probably wanted me to have a prostate exam

I can display a strong advocacy for my family members but I haven't always been so brave in connection with my own medical care. I eventually learned to bring my husband with me to the important appointments; he likes to help "slay my dragons." Perhaps my situation is not so unusual though. Do you find, Nancy, that you were able to be as tenacious when you've had to deal with your personal medical issues? Would you mind to share your mindset in this regard?

And Blanche, that book sounds very interesting.

And Pamela, I think I haven't read your son's entire experience; I hope he's okay now!

 

[hensylee]

Nancy is right on target always. She has taught the member of this forum so much and we all thank her and honor her for her strong beliefs in Joe's successes. And yes, we all saw him reach the edge but so many times he was right back again. All due to his dear wife.

Always listen to what she tells us and learn from it. I think many of us are stronger and have become our own advocates because of Nancy and her 'never give up and never give in' statement.

 

[Susan BAV]

Yes, Ann. I too am regularly inspired by Nancy's zesty pep talks .

 

[MandyMV]

I have always been interested in science and medicine even though I went the liberal arts route in my career. However, all my nerdiness paid off when Ryan was in the hospital. He was so out of it and so sick that I took charge and began to ask a million questions until I got straight answers. If there was a medical term I didn't know I asked them to explain in layman terms. I let my shyness take a back seat in order to make sure he got the care he needed. Grant you at this point he had been misdiagnosed for 6 months so I was revved to go!

I would look up each ailment and all their treatments and any medical journal articles on the subject and have notes ready for the 5am rounds (they thought they could dodge me but I was there with my Starbucks!) For the first two weeks they thought I was a medical professional until they made the intern ask me and I said no, I am just someone who believes doctors are human and I don't want to risk any more mistakes. Luckily, my Italian Grandmother taught me how to be strong and not back down and on a few occasions the doctors were scared to come in the room because they knew if they didn't have answers they should come back when they did.

Oh and no offense to nurses but the night shift can kill a person...I continually caught them forgetting his antibiotics for his endocarditis. They would blame the pharmacy until I called the pharmacy to see if they had a back up and they said no they weren't even busy!!! Well 1 or 2 hours off schedule is not a big deal but we are talking 4 hours so needless to say his mom and I personally checked and reminded the staff of his treatments.

We continue to say to this day he would have been lucky to get out of there alive if he didn't have me or his family around all day. So shout out to all the family members who advocate for their loved ones.

As for myself, I still go to appointments myself but i have now learned to write questions beforehand and bring a paper and pen in for docs instructions or notes so I don't forget anything. I also now keep a document on my computer that lists all my medical issues, medical history, medication and allergies so that if I go to a new doctor I just hand them the sheet and they have everything without me having to try to remember. It is great sinceI moved and have all new doctors!

Sorry so long-just had lots of coffee

 

[Nancy]

Susan-

I am just as proactive with my own care. I have fewer problems than Joe did. He sometimes had 5 medical appts. per week, and he saw so many, many different medical disciplines. Hard to imagine. I went to every appt with him.

For the problems I have had, I have the best doctors, that I trust, and they are caring. I wouldn't hesitate to ask questions though, nor would I hesitate to push if I didn't think enough was being done.

I guess from the experiences with Joe, I pretty much know who is good in each field and who to stay away from.

 

[Nancy]

Mandy-

You made me laugh with this

"notes ready for the 5am rounds (they thought they could dodge me but I was there with my Starbucks!"

I did the same thing. I am sure they were groaning when they saw me