Some advice when dealing with a medical condition.

[kitkatz]

A few thoughts about surviving dialysis or any medical condition:

So...
Knowing that the medical community is run as a business I have learned a few things...

The patient needs to be knowledgeable.

The patient has to gain knowledge and be able to ask questions of the doctors they are involved with.

Keep a log of names of doctors, procedures, who did what and when, that way when you meet a new doctor you have records handy and can discuss names and dates knowledgeably. (wish I did this)

Join a support group.  Be careful. Find one you are comfortable with. Use it for support and information as you fo through the medical things. Ask questions.  Know they are support, not God's truth.

Search  for information on the internet but only as you can take it. When is too much stop looking. Take a break from info overload.  Process what you know.

Do something fun for yourself everyday. A joke, a smile, a game, tea, chocolate, whatever makes you happy for a few minutes.

Know that people act weird around someone who has an illness. Sometimes friends are not around anymore because they do not know how to deal with it. 

Do not allow the illness or its treatment to become all consuming in your life. It is going to take up parts of your life and sometimes it feels like it has become everything, but know these things are not your life.

Pray every day.

Let little stuff go. "In the end it is all small stuff anyway." Little stuff can cause great grief, sometimes you have to let it go.

Being beyond tired is a place you may feel you are often, rest...take time to let your body heal.

Above all:
One second, one minute, one hour, one day at a time.

[YLGuy]

Great advice.  I know I have fallen prey to some of the things you have warned about.  I think we all do to some extent.

[Lexxtech18]

A few thoughts about surviving dialysis or any medical condition:

Search  for information on the internet but only as you can take it. When is too much stop looking. Take a break from info overload.  Process what you know.

This one I need to follow a little better. I'm bad about looking things up online and then thinking the worst. I guess with all the information now literally at the click of a mouse, it's hard not to get caught up in things and let your imagination run wild. I'm a worrier to begin with so that's just not a good combo!

[cariad]

These are fantastic tips, Kit! Thanks! I don't pray, but I do try to practice keeping my mind as positively-focused as possible. I also try to exercise a bit everyday - you can build up strength and energy levels even with the most modest of starts so long as you keep up the effort regularly.

[geoffcamp]

Great tips!!  I tend to spend hours reading and searching the net. It can be overwhelming.

[deniferfer]

Very very good tips. I totally agree with keep a log of your medical history. I can't remember half the things they have done to me or when. I think I was there for most of it.

One thing I would add ( i think you didn't have it) Keep a good or heck not so good sense of humor about it all. Sometimes we just have to laugh instead of cry. 

[Bajanne]

Great advice, Kitkatz

[MooseMom]

I would add two more:

1.  Be the captain of your own ship.

2.  Get a fax machine.

[jbeany]

One thing I would add ( i think you didn't have it) Keep a good or heck not so good sense of humor about it all. Sometimes we just have to laugh instead of cry. 

A warped sense of humor is the best survival aid you can have!

Stop comparing your health to some vague time in the past.  Focus on now.  If you are trying to get back to "normal," you are going to be in for a perpetual series of disappointments.  Deal with problems, fight to improve your health from the current status, but don't expect any treatment to be a magic elixir.

Acknowledge that you have right to mourn what you've lost.

If you hear any medical person use the phrase "ALL patients do/have/are..." realize that some amount of BS is about to follow.  We are not pushed out of molds or cut out with cookie cutters.  You might react differently to a treatment that doesn't bother 99% of other patients.

Be aware that you might have to fight, and fight hard, to get the individualized treatment that you need.  Doctors are human, and they like the easy, familiar way just as much as anyone else.

Don't be afraid to say NO.  You are the patient - you outrank the docs when it comes to making your own medical choices.

Trust your instincts.  No one knows your body better than you do.

[MaryD]

I would add - keep your wits about you!

This morning I had a CT scan.  Although my request slip was clearly marked "No IV  iodine", the guy who was organising me for the scan told me that my kidneys were OK, and there was no reason to avoid the IV.  He reckoned he had checked my lab results and my kidney function was OK.  I must have told him 3 or 4 times I was on dialysis and had been for over 12 months.  He asked where did I do my dialysis.  I told him at home.  Apparently if you do it at home your kidneys must be OK.  He was quite bullying in his approach.  I won out in the end, but he obviously still thought I was just trying to avoid having an IV put in.

[Rerun]

Start the day with that prayer.

       

[jbeany]

I would add - keep your wits about you!

This morning I had a CT scan.  Although my request slip was clearly marked "No IV  iodine", the guy who was organising me for the scan told me that my kidneys were OK, and there was no reason to avoid the IV.  He reckoned he had checked my lab results and my kidney function was OK.  I must have told him 3 or 4 times I was on dialysis and had been for over 12 months.  He asked where did I do my dialysis.  I told him at home.  Apparently if you do it at home your kidneys must be OK.  He was quite bullying in his approach.  I won out in the end, but he obviously still thought I was just trying to avoid having an IV put in.

You go, girl!

[Lexxtech18]

I agree! Definitely you have to have a somewhat morbid sense of humor to keep your sanity in this sort of life. Absolutely. It's okay to lose sight of things and get down on yourself every once in awhile, it comes with the territory. But don't take life so seriously all the time. Laugh things off, hell just laugh as much as you can! 

[Riki]

2.  Get a fax machine.

I have one... only plug it into the phone line when I need to, though..

If you hear any medical person use the phrase "ALL patients do/have/are..." realize that some amount of BS is about to follow.  We are not pushed out of molds or cut out with cookie cutters.  You might react differently to a treatment that doesn't bother 99% of other patients.

I wish doctors would figure that one out, instead of letting us show them how wrong they are, and suffering for it..

[geoffcamp]

I have on other thing to add!   FIND YOUR VOICE!!  If the doctor tries to walk away before you are finished say HEY!!  I'm not done yet. Same with dialysis staff if you have them!!  Command respect (in the nicest way possible) and you will get respect back.

[cdwbrooklyn]

I'm impressed; this is what I like to hear. Execellent advice from everyone who posted.   

[MooseMom]

I have another one.

Don't waste your time and energy anguishing over the fact that no one "understands" ESRD.  It is not their fault if they don't know their potassium from their phosphorus.  How many of us have encyclopedic knowledge of ALS or Huntington's?  If it is so important to you that they "understand", then it is up to you to educate them.  Just because they may not "understand" doesn't mean they don't care.  However, if they DO understand but STILL don't care, well, that's another thing entirely...

[Cowdog]

I keep a dialysis journal. Just a small notebook (about 3" X 5"). Get 3 treatments or 1 week on a page. Record weight in, volume pulled, weight out, BP out, KTV, Time on, Machine number, Sticker info (me or whoever helps me out) by needle position. Art and ven pressure & pump speed.
Any Dr discussions. Any additional appointments /procedures in the margins. Fistulagrams etc.
Special notes - loss of friend -special staff leaving - extra good/bad day ... etc

Gives me the ability to go back for specifics whenever a question arises.
Particular example - I asked Dr if in my position what would he do that perhaps I was not doing. He said only additional thing he would do is run extra 30 min on Sat. Said since I work on Tues & Thurs he would get additional cleaning on Sat. I started doing that. Then after a couple of months staff said I couldn't run extra any more because Dr was mad that I wasn't following prescription. Next time Dr came around I challenged him. (I had already found the page in my book where we had the discussion and he suggested the extra time.) When I reminded him of the conversation with the date he suddenly remembered and changed my Sat prescription to 4.5 hrs.
Staff seems to be more attentive when they aren't exactly sure of everything you are documenting. I have been asked "Is my name in that book?" I grin, nod my head and say "Yep".

I'm the Head coach on this team.
I listen to team mates thoughts/suggestions.
Seek advice from those trusted few.
Final say is MINE!!

[Riki]

good idea, Cowdog.. something else to add to my dialysis bag..

[deniferfer]

Keep those that support you close.  Don't be afraid to have a bad day around them cuz they are the ones that are going to be there for you and won't judge.

Also there is nothing wrong with have a good scream in the middle of a empty room. It can be freeing!!


Remember people will say and ask some of the dumbest things. Don't get mad, try to educate them or check it up to they got left olny with their own thoughts.