RE: Good notes, pay off!!

[Guest guest]

Jill:

Thanks for your insights into this---very valuable stuff here.

I have tried to keep my records up-to-date over the past 3+ years, but now

realize that I don't have the records from my last surgery in January. I

need to ask the hospital for that info.

If I may add something to what you said (it's not a criticism, just a fact):

keeping track of this only works for a patient if SOMEONE ELSE does it for

them. By definition, we're so zonked out at times (post-op, hypo, med

adjustments, etc.) that it would be impossible for us to do it on our own.

As you well know, there are plenty of people who don't have an advocate

(like has you) to keep track of everything that's going on. Perhaps

you could write a brief follow-up note? I'm asking you to do this so that

the newbies (or people who are alone) don't feel the added " pressure " of

feeling like they need to start a notebook on top of everything else they're

dealing with.

Does that make sense?

Again, I think the idea of a notebook is great, but it really should be the

responsibility (esp. in the early going of diagnosis and treatment) of

someone else---sig. other, parent, spouse, other family member. If patients

(esp. newbies) think it's their responsibility to keep notes, that might be

too overwhelming. It would have been for me. In fact, my wife came along to

every doctor's meeting early on---she took notes and had a list of questions

for the doctors. If it had been up to me, I would have (a) forgotten to take

notes, ( forgotten to ask questions.

Well, I've gone on longer here than I had anticipated, Jill. I hope you

realize that I'm NOT being critical of your suggestion---NOT AT ALL! I'm

just concerned that some thyca patients might read what you had to say and

begin to feel overwhelmed (or discouraged, because they don't know how

they'd get a notebook going in the first place).

Anyway, if you feel comfortable adding a little postscript to your

suggestion (based on some of my comments), I'd appreciate it. Otherwise, I

might say some of this myself. But I think it might " play better " with the

group if it came from you.

Glad to hear that 's doing well---hope her next round of bloodwork

turns out great!

Best wishes,

Doug

> Good notes, pay off!!

>

> Dear Group,

> From time to time, we bring up the subject of keeping notes and collecting

> records and reports. I just wanted to stress this, to those who are new

> to

> the world of doctors, hospitals, and tracking all the information.

>

> I've kept a copy of every lab report, surgery report, and pathology report

> that's been done on (my 22yr old daughter who has thyca). Whenever

> a

> procedure is done, I make myself a note to request a copy of the report,

> about a week later. When she was in the hospital, after her TT, I kept a

> record of everything that was done to her, or given to her in IV's, shots,

> pills, etc....making note of the time it was given, dosages, the effects

> of

> it, etc. Here are just a few ways it's paid off for us.

>

> 1. By keeping notebook out and visible (while in the hospital), and

> writing down everything, it shows the staff you care and want things

> explained and checked carefully. I bend over backwards to NOT make it

> look

> like I'm checking up on them....but just that I'm " fascinated by it all " .

> But THEY know a record is being kept, and they seem to be more diligent.

> They also seem to take more care in explaining things to , and

> involving us in the program.

>

> 2. Keeping the notebook handy, is a great way to pass on information to

> others who are helping with caregiving. When my hubby would relieve me,

> he

> knew all the important info was in the notebook. So if asked, " When

> was my last anti-nausea med? Can I have more? " He could just look in the

> notebook, and give her the answer...rather than trying to track down a

> nurse.

>

> 3. Keeping a notebook will help show patterns that you might not realize

> are important, until later. Example: had a big problem with

> nausea,

> after her TT. They kept trying to stop it, using pills, shots, etc.

> Every

> time it stopped, she'd start feeling human again, but then, it would start

> up, again. I was keeping notes, and finally, after 48 hrs, I looked at my

> notes and saw an amazing pattern.

> Nausea

> Pill (didn't help)

> Shot (stopped the nausea)

> Started feeling better

> New dose of antibiotic given in the IV

> Nausea

> Pill (didn't help)

> Shot (stopped the nausea)

> Started feeling better

> New dose of antibiotic given in the IV

> Nausea

>

> If I hadn't kept the notes, I'd never have figured it out. But it doesn't

> take a rocket scientist to see that it was the antibiotic that was setting

> her off. I noticed this, 48 hrs after surgery, after two days of her

> throwing up and then being totally knocked out with the antinausea meds.

> It was when the doctors and nurses were scratching their heads and

> wondering why this young girl wasn't recovering better, and able to go

> home, like other folks. I asked the doctor, " Could we stop with the

> antibiotic? I think it's causing the nausea. " He said, " Naw, the

> antibiotic shouldn't be doing that. " I said, " Look at these records. "

> He

> said, " Ooops! Let's stop the antibiotic. " Duh!

> Sure enough, that was the end of the nausea, and she was ready to go home,

> in a few hours.

>

>

> 4. The information in #3, really paid off this year, when she had

> surgery,

> again. This time, I looked at my notes, and told the doctor, " We need to

> be sure she is not given XYZ antibiotic...which made her so sick, last

> year. " So, he used a different one. AND, I had my surgery report, which

> showed they never pre-medicated her for nausea, they used a long tube for

> breathing (which can also cause nausea and a sore throat), etc......So, I

> discussed all this with the anesthesiologist, and she was able to make a

> much better plan of attack.

>

> After the anesthesiologist left the room, looked at me and said,

> " MOM! How in the world did you know, last year, to keep all those notes???

> That's incredible! You even had the names of the drugs, and it really

> paid

> off! " The best news to me, was that SHE noticed, and now, I'm sure she'll

> keep her own good records, in the future.

>

> still had some nausea/vomiting after surgery, but only for a couple

> of hours. And if I'd really been on the ball, I probably could have

> avoided that, too. They pre-medicated with Zofran (good stuff!)...but the

> surgery was a 7pm, and she didn't get any more of it until 11pm when she

> finally asked for it. That dose stopped that vomiting, totally. I think

> I

> should have insisted on more, as soon as she started the nausea...or as

> soon as it was allowed.

>

> 5. Keeping your own files of all the reports, can really save you time

> and

> trouble. Having that surgery report, a year later, helped tremendously.

> And many times, it's helped to avoid the long wait for one doctor to have

> it sent from another doctor's office. It's so handy to say, " Oh yes, I

> have a copy of it, right here. "

>

>

> Keeping a notebook, or gathering reports, is a lot like taking

> photographs.

> When you're there, and enjoying it, you think you'll remember it forever.

> Why take a picture? It's hard to know WHAT to photograph, because you

> don't know what little tidbit will be important to you, ten years from

> now.

>

> With medical records and notes, it's the same way. You THINK you'll

> remember it all. Or you'll think, " I just want this behind me. I don't

> WANT to remember it! "

> But you never know when you'll need it. And you don't know what part of

> it

> will be important. So, my advice is....do as thorough a job, as possible.

> The worst thing will be, that you'll have a stack of papers you'll never

> need. Wouldn't THAT be a great problem?

>

> Hope this helps someone.

> Jill

>

>

>

>

[Guest guest]

Doug...

You silly boy!!!!

Gotta watch that " TO: " line, or else you risk being a cyber human, and

sending the wrong letter to the wrong spot.

Good news is...It's totally obvious that everything you said was meant

constructively. I have no problems with it having gone to the group,

first. And I totally appreciate the insight.

What you alluded to, but didn't really say, is that I'm the

caregiver/supporter, not the thyca survivor...so everything I say comes

from a little different angle. THANK YOU for pointing out how this could

get confusing to others who are the thyca survivor and facing it all from a

different perspective. You're so right!

Very simply, I'll re-state it, this way:

" If you are the thyca survivor, and are inclined to keep records and can

start the note keeping or record collecting, then do it....and then pass it

along or enlist the help of others when you go through times when you can't

keep it up, yourself. HOWEVER, if you are not inclined to keep notes, or

are too overwhelmed to focus on this aspect of your care, then try to

encourage someone else to do it for you. "

Doug, you asked if I'd write a followup note, so the newbies wouldn't feel

the added pressure of feeling like they need to start a notebook on top of

everything else they're dealing with. The comment, above, is as close as

I can come to that. I hope it helps.

It brought out a bit of the " rebel " in me, when you wrote about who's

responsibility it is, to keep notes and records. What I'm about to say, is

something I feel strongly about...and have done websites, conference

speaking, and workshops on.....so don't take it personally. It's a stand I

take, often. I say it brought out the " rebel " in me, because it's a

nickname (the RLS Rebel) I've given to myself, because of the way I deal

with my Restless Legs Syndrome. While others with RLS complain of being

victimized by the RLS beast, I've come back and taken the position of

responsibility for my health, and for being empowered against a seemingly

overwhelming and progressively worsening obstacle. I believe that except

in cases where we are totally incapacitated, we need to retain

responsibility for our health, record keeping, research, and medical

decisions. That doesn't mean WE have to do all of this, ourselves...but

it's our responsibility to insist on it being done, even if it means we

delegate (i.e. get the help of spouses, friends, or loved ones), or hire

others (i.e. doctors), to do the work we need done.

Too often we are overwhelmed by our medical conditions, and turn our lives

over to the medical professionals and expect them to " fix " us and be

responsible for more of our life and health than is possible. Today, with

all the various medications, all the options, all the variables, and all

the patients who have so many unique variables of their own....I believe

it's more than any doctor would want dumped in his/her lap. And it's more

than any spouse or parent or friend would want to assume responsibility

for. The person who needs to retain responsibility, is the

patient...whenever possible...and again, even if it means delegating tasks,

or just thanking and encouraging someone for " taking over " for a while.

We need to stay actively involved in our health care. This doesn't mean

dictating to our doctors. It means teamwork with our doctors. One way or

another, we need to educate ourselves, so we can do our part to help the

doctors' remedies work for us. And we need to give good feedback to the

doctors, so they can make good decisions about our care. If a thyca

patient is seeing an endo, an ENT, a surgeon, a primary care doctor, etc.

etc.....who will take responsibility to keep all of them informed, on the

same page, etc, if it's not the patient? Remember the case of

having one doctor order a CT with iodine, and then her endo didn't notice

it and almost started her RAI too soon? YOU, the patient, or a helper that

you designate, has to stay on top of things, and if you can't, then

definitely, get someone to help you.

If the patient is a child, then of course, a parent would do this for him.

But as I pointed out with , the goal is to instill this sense of

responsibility in the child, so he/she will take over and make sure someone

is always keeping good records. A year ago, when she was first diagnosed,

begged me to not overwhelm her with all the thyca information. She

just wanted to believe what everyone was saying, " It's the cancer you want

to have. It's easy. Rip out that thyroid and take a pill every day. No

problem. " She asked me to research it for her, and keep records....but she

didn't want the responsibility to do it, herself, and she didn't want to

know, all that I was learning. That's fine. (Of course, last week, when

she whined that her salivary glands were killing her...she was sure glad I

had emails saved from this great group, with answer to how to get them to

relax.) At least, she was making sure the research was getting done, on

her behalf. Now, finally, I see doing what she's seen me

do...pestering doctors for results, demanding written copies, questioning

orders from the doctor, etc. She wanted, so badly, to turn it all over to

me, but now that she sees how many mistakes can be made, and how much

trouble can be avoided, and how I'm not always there with her, when the

doctors or nurses do their thing...now, she's doing this more and more, on

her own.

Sometimes, we are definitely overwhelmed and physically exhausted, and

cannot maintain responsibility. But more often than not, I think it's

human nature to avoid taking responsibility at times like this, and wanting

someone else to take charge. I remember feeling this when Mom had her

stroke, when my grandmother died of congestive heart failure, when my dad

died of lung cancer....I did NOT WANT TO BE RESPONSIBLE!!! I wanted

someone else to take charge, keep the records, and tell me when to show up.

But they didn't. Again, in all these examples, I was the caregiver, not

the patient. But I learned my rebel attitude from these patients. My

mother has refused to let go off her right to control her own therapy and

medical decisions. I do a lot for her, but SHE is the responsible one. My

dad stayed " in charge " of his own care, until his last 24 hrs of life.

Yes, Mom and I were his record keepers and caregivers, but he demanded it

of us, and made sure we " did our jobs " taking care of him. And my

grandmother insisted on dying in her own way, after clearing up her

affairs...with my help, of course...but she delegated every step of the

show. Maybe that's where I got this from. They trained me well. LOL

Doug...I know you liked the notebook idea, and it even reminded you there

was a surgery report you needed to go retrieve. We're on the same page,

here, and I appreciate your support and feedback. Please excuse me, for

getting off on my soap box. It's one that when/if I'm in a position that

you all have been in, of being diagnosed with something overwhelming, I

know I'm going to have a hard time swallowing. LOL I even have a hard time

following my own advice when I'm up during the night with a relentless RLS

attack. It's so hard to practice what you preach. LOL I know there will

be times when I'll want someone else to take responsibility, too. And I'm

going to have to ask myself whether I'm just being reluctant to take charge

and wishing things were a whole lot easier, or whether I really need that

help, which I might. And if I do, then I'll delegate, or hope someone will

just take over.

The important thing, is the idea that it's important that SOMEONE keeps

good records and notes. The idea of who's responsibility it is, is just an

interesting one to consider. It's a tough call. Definitely get help

whenever possible. But always try to retain responsibility for your own

health. When those dear people say, " If there's anything I can do to

help....let me know. " Recruit them!!!!! But due to confidentiality laws,

with something like asking for records, it's usually the patient that has

to do it, unless you have their power of attorney. Often, when I'm told

they can't give me information or records on , I have to lie a bit,

and say, " Yes, I'm ...and I want my records. " Of course, that's easy.

What's tough is when I try to get my husband's records....with a low

voice, " Yes, I'm Steve...and I want you to send me my records. " LOL

Take care,

Jill