Patients participating more in their own care

[Nancy]

A while back Joe's doctor was talking about a new idea which would provide interested patients with their test results at the time they were released, so they would get them at the same time as the doctor. I'm not sure if it is in place anywhere, or is just being discussed as an idea. I believe there is a movement in some fields of medicine to get patients more involved with their own care.

In light of Ross's echo result problems, it sounds like something to think about.

What do you folks think about that idea?

 

[Ross]

You know I'm all for it!

 

[LUVMyBirman]

Hi Nancy,


Wonderful idea. Just so happens I call for a copy of all of my test results and lab work. My doctors are happy to involve me. Even entrust in myself conveying the results to them when they do not have them handy. I am sure they double check. But it gets them back on track faster.

I think in a round about way..... to interested and educated patients, it has been going on for a long time.

What got me involved in the first place.... was not having the records from my childhood highlighting the valve disorder. My mother keeps EVERYTHING! You would think this would be of importance, LOL.

There is always that possibility we will also relocate again someday and switch doctors. So, I have what we call
"the binder of life" for each family member.
Works great for us.

 

[Birky]

Own care

Own care

I have come to the conclusion that you have to be your own advocate when it comes to health care. I had tremendous care when I had the surgery but there was some slipups once I got home with the surgeons office and our local hospital. The PA who discharged forgot to give the nurses some information on tests I was having after I went home. Went for the pro-time, potassium, blood count and magnesium on both Mon. and Wed. The hospital here forgot to fax them to the surgeon and I had go to the ER 5 days later when I went out of sinus rythym. Normally the Dr.'s office would call back in a few hours and advise you with the adjustments. My INR was really low, hardly any potassium or magnesium which he said helps control the heartbeat. Needless to say when I went back to the local hosp. I wanted some answers why this wasn't done. Of course, the buck was passed but the bottom line, someone was too lazy to take the time to do it.

The Dr. really chewed out the PA for not following up. After that if they didn't have the results by noon they were calling me to see where they were.

Sorry to be so long winded but this has become somewhat of an issue for me. It is hard when someone was playing with my life. I am just so glad that I didn't have a stroke or something. I was in the hosptial for 4 days for the last time.

 

[Peggy in Alaska]

I am all for getting more involved in my own care. Since I will be having surgery in Minnesota, I will be a long long way from home. I wonder how long I will have to stay in Minnesota? When will I be able to fly home? Can't imagine driving that distance. Who is going to do the follow-up check-ups when I've been referred out-of-state? And I will want to be recovering quickly so that I can go back to my job. Can you lose a job for a medical leave? I work for the feds. so maybe I am protected, I don't know.

 

[Georgia]

As many of you know, I got a letter from my pcp inviting me to find a new doctor because he and I disagreed with the way he prescribed coumadin. Best thing he could do for me. Now I don't have to sneak around and not "hold" when my inr's 3.6 or whatever. Have a much better doc who thinks it's pretty good for someone to know something about her condition.

I think that in these days of fragmented medical care and constant upheaval of the md's providing care under certain hmos; and then companies changing hmos, we bloody well better take control of our medical care and history. It's imperative to get copies of important stuff. And the recent privacy rules require labs and hospitals etc to provide us with our records.

And if the docs and nurses don't like us asking questions, tough. The more demanding we are the less likely they are to need their medmal insurance. They should thank us. They should have classes in high schools so kids can be proactive in their health care.

And that's what I sez.

 

[Nancy]

Don't be shy, Georgia

 

[fyrfytr]

Nancy,
I agree 100%, and I think that forums like this also help out a lot. At least it has helped me with information that I haven't had before. I just wish Drs. would remember they work for us and not the other way around.

Dave
________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical 27mm


ps, I got my St. Jude card today.

 

[ALCapshaw2]

Don't be shy, Georgia (Nancy)

Look who's talking, VR.com's biggest patient advocate

I'm all for giving lab and test results to the patients ASAP.
I hate having to call and wait a week to get results out of the Cardiology Center!

'AL'

 

[Nancy]

I'm not sure it how it would work, but I don't think the doctor would be passing on the lab results, I believe that the patient would get them from the lab or some kind of direct access. But I could be all wrong, it wasn't a long conversation, just an interesting one.

 

[epstns]

Hey, Peggy. . .

Hey, Peggy. . .

Peggy, I know there are regs that protect employees and their jobs when they take medical leave. I also know that in federal service the regs are taken very seriously, so I believe that you will be well protected. (Wife is a career fed) Just be real sure that you find out in advance what you need to do and what your rights and privileges are, and do whatever is needed to ensure your job when you return.

Nancy and all, I think the level of patient participation tolerated, invited, enjoyed (pick one) by a doc is a personal thing with the doc. My first cardio didn't seem pleased when I asked him technical questions he had not previously discussed with me. The second cardio (great guy!) not only actively discusses things, but also has often asked "Did you hear about...?" sorts of questions on treatment options being tested, etc. Even my pcp, whom I almost fired for not detecting my murmur, has become very open about discussing the technical aspects of my case management. I think it will always be somewhat specific to individual docs, and I think we heart and valve patients should do all we can to seek the docs who appreciate our interest.

 

[carlapv]

There has been some controversy over whether or not a Dr. can release someone else's reports or if you have to obtain the report from the source. It really is your doctor's call. I don't think there is any recourse for the doc if they release the information. Also Peggy, since you work for the feds, you are entitled to 26 weeks unpaid leave under the Family Medical Leave Act. They must hold your job or a comparable position at the same salary. Also you can request reasonable accommodations under the ADA and Section 504 of the rehabilitation act that would allow you to have flexible work schedules during your recovery. The Family Medical Leave Act applies to all business with 15 or more employees.

The disability movement has been very involved in teaching people to be their own medical care managers. We even had a federally funded project that provided training and support for patients and providers collaboration for medical management. It is amazing how stupid some in the medical community think we are.

Carla

 

[Nancy]

Know all you can, the good, the bad, and the ugly!

Know all you can, the good, the bad, and the ugly!

I think when you or a loved one have complicated problems, it really becomes a sort of partnership with the patient and the medical professionals. A good open relationship is very desirable.

The doctors see the patient only every couple of months or so. Your care goes on at home in between appointments. What goes on at home is a whole other scenario. If you don't know enough about your medical conditions, you will miss some very important clues that should be reported to the doctor early on. That's why I urge everyone to read all they can, even if it scares you, and even if some things do not apply.

I know for a fact that if I didn't do all the reading I do, and didn't act on some situations that happened at home, where there was no doctor or nurse, just Joe and me, Joe would not be alive today.

Feeling free to call the doctor when necessary is exceptionally important. Patients with complicated conditions have a whole different set of problems.

I surely don't want to be swinging out in the jungle all by myself with a seriously ill husband without a safety net. I have a Bachelor of Fine Arts degree not a medical degree, but unfortunately also College of Hard Knocks Masters degree.

Patients and their families can help themselves tremendously by participating in their own care as much as possible.

 

[Peggy in Alaska]

Thanks, Steve for your comments regarding my federal job. I have about 17 yrs. in so far and would like to be a career fed. employee. My boss [who is the chief judge of our court] is great and I know he will do whatever he can to make sure I can come back when I am ready. On the other hand, the clerk of court is the one who will tell my boss, "sorry, can't do this and can't do that" so when the time comes I'll be sure to do some research and get some things in writing before I leave for Minnesota.

Hi Carla, thanks for your reply. I think I have heard of the 26 weeks of unpaid leave with the Family Medical Leave Act. I will certainly look into the rehabilitation act and utilizing a part-time schedule when I first go back. This is useful information, thanks.

 

[Granbonny]

Peggy

Peggy

If you have the normal 5-6 days in hospital..I would want to wait at least 3 more days. maybe near the hospital. Then make sure your flight is booked good and order a wheelchair...you don't want to have to walk a long distance at airport. What type of valve will you get? Your Cardiologist in Alaska should have a Clinical nurse to help manage you if you are on Coumadin. If the weather is cold..you should find somewhere to walk..maybe a Wal-Mart, ect. everyday. Mall? Bonnie

 

[Peggy in Alaska]

Thanks for your comments, Bonnie. I think 2 weeks in Minnesota would be nice. Get an apartment maybe.

And cold weather is definitely a factor. If possible I will be sure to schedule this surgery during the summer months.

Also the suggestion of a wheelchair at the airport - What a good idea. But I am too young for a wheelchair!

I have been told that I would most likely get a pig valve. Was told they use the mechanical valves on the valves that have to handle more pressure or pumping, so I guess the tricuspid valve isn't one of those.

That's fine, I guess. I don't like the sound of Coumadin. I like my wine too much.

Don't have a cardiologist here. My cardio. doc and surgeon are both at the Mayo. Maybe after surgery I can get a local guy here to join the team.

 

[epstns]

Peggy,

Sounds like you've got a lot of things beginning to come under control. If you run into issues with the regs, send me a PM and maybe my wife will be able to help. She's a court administrator in one of the many federal courts here in Chicago.

 

[Peggy in Alaska]

Hey Steve: Thanks for volunteering your wife's help! Hopefully it will not come to that. Does she work for U.S. Dist. Ct.? I am with the U.S. Bankruptcy Court. I grew up in Madison, Wisc.

My brother lived in Chicago for many, many years after college. He was a CPA for a private firm. He moved to Seattle several years ago but still does his Chicago job my commuting and mostly computer internet.


Take care.