Wednesday, December 15, 2010

(Almost) Everything You Need To Know About Surviving Your 1st or 101st Hospital Stay: Written By My Sister, Angela

(If you would like to share this with others, please link to it on your blog rather than reposting it. Thank you for understanding how protective I am of my sister's legacy. :-)

Joshland Note: I recently rediscovered a book that Angie started writing when she was in junior high school, circa 1991. To give you some perspective:
  • George Bush was the president. Not "W", but his pop.
  • "Operation Desert Storm" was in full force in Kuwait.
  • The Minnesota Twins won the World Series in a classic against the Atlanta Braves.
  • Grunge music exploded onto the scene, with bands like Nirvana and Pearl Jam leading the way.
And here was 14 year old Angela penning what, as of today, was one of her legacies to her family, friends, and the CF Community. It was more of a manual of sorts. A "how-to" guide of CF hospital survival, if you will. She was wise beyond her years, well spoken, witty, and willing to share her story with the world nearly 20 years before the internet, blogs, and social networking were the norm. While she never got to finish writing her book, what she DID write transcends cystic fibrosis. It has the power to help anyone who has ever had a chronic illness or life altering condition. Angela wanted to guide her readers through something she knew far too much about: Being a patient. The stage is yours, Angie:



SURVIVAL RULE # 1: IF YOU DISAGREE, DISAPPROVE, OR HAVE ANY DOUBTS WHATSOEVER (ABOUT WHAT IS HAPPENING WITH YOUR HEALTH CARE), THEN ASK AS MANY QUESTIONS AS YOU WANT.

Those darn interns. You know the ones I'm talkin' about. Those "Junior Doctors" as we'll call them, who come into your room and act like God. I don't know about you, but there have been a few times, no, make that A LOT of times, when I have wanted to tell them a thing or two. I actually HAVE a good deal of the time. If you do have to tell them a thing or two, be firm, but don't come across as a jerk. I've come across as one a few times and it doesn't help things at all. Remember: it's YOUR body. Not theirs or your parents. YOURS. Survival Rule Number 1 applies to all types of doctors, residents, fellows, specialists, surgeons, etc... Also remember when it comes to dealing with "Junior Doctors", if you want to speak with someone higher up don't be afraid to ask. It's YOUR choice.

SURVIVAL RULE # 2: NEVER LET ANYONE DO ANYTHING TO YOU UNLESS YOU'VE BEEN TOLD IN ADVANCE BY THE DOCTORS.

We've all been through it time and time again. Just as you feel that tinge of relaxation coming on, someone comes into your room, smiles that ever-so-fake smile and stupid looking smile and then says to you sweetly "It's time to draw some blood." or "Don't worry, it's just a small shot." Oh, Puhleeease. Give me a break! NEVER LET (THE HOSPITAL STAFF) DO ANYTHING TO YOU IF YOU HAVEN'T BEEN TOLD WHY IT NEEDS TO BE DONE! If you are the parent of a patient or a patient who is able to answer for yourself, you have the right to know every detail.

SURVIVAL RULE # 3: WHEN YOU ARE BEING POKED (WITH A NEEDLE) FOR AN IV, BLOOD TEST, OR ANY OTHER REASON, MAKE SURE THEY KNOW THE "GROUND RULES".

AND...


SURVIVAL RULE # 4: IF THE FIRST PERSON CAN'T GET THE JOB DONE AFTER TWO TRIES, TELL THEM NICE, BUT FIRMLY TO GET SOMEONE ELSE.


These, for me, are the most stressful parts of a hospitalization. In fact, I used to just call hospitalizations "Getting IVs". "Getting poked" is no fun for anyone whether you are 60 days old or 60 years old. If you are in a teaching hospital (a university, for example) that means the "Junior Doctors" are either fresh out of medical school or are a few years out of it and are on their internships or residencies. This means they need to use you to get first hand experience doing their jobs, so it'll most likely be a "Junior Doctor" who wants to put your IV in. Mind you, this doesn't mean that they are the best at putting IVs in. It just means they get the first crack at it.

Every time you get "poked", the odds are that it's going to hurt. Maybe not a lot, but I GUARANTEE it's not going to feel good. Make sure you tell them the "Ground Rules":


  • They get 2 pokes.
  • No digging in the vein to their little heart's content with the needle.
  • Put the tourniquet on the sleeve of your shirt.
  • Do not take the needle out with alcohol.
  • If they don't get it in within their two tries, they have to find someone else.

You may get resistance from the "Junior Doctor", who may say things like "Just let me try one more time." or "If you wouldn't have moved, I would have gotten it!" Of course, it's up to you if you let them try again, but use your best judgment. When you ask for another person, request someone with a lot of experience. Remember - don't feel bad if you ask for someone else because it's you or your loved one that is going through the pain.

SURVIVAL RULE # 5: BRING THINGS THAT MAKE YOU FEEL AT HOME, AND NOT LIKE YOU ARE IN A COLD, STERILE DUNGEON.

Being in the hospital can be depressing enough and those boring rooms don't help either. Here are some of the basic, but comforting things to bring with you:

  • An afghan or a special blanket to put on your bed.
  • A stuffed animal, favorite books, movies, or music, your own pillow from home.
  • A family album and a picture of your pet (if you have a pet).

Everyone has different things that make them feel good inside and the more you bring with you, the less scared and homesick you'll feel.

SURVIVAL RULE # 6: GIVING IS THE BEST MEDICINE OF ALL

Sitting in the hospital can be very boring. No, let me rephrase that: Sitting in the hospital IS very boring. That is where practical, fun gifts come in. I'm not saying flowers and gifts aren't nice, but they can be expensive. The kind of gifts I'm talking about are kind that make the patient less starved for the real world. Here are some suggestions that I'm pretty sure will brighten the day of that special patient in your life:

  • Bring a favorite movie or TV show to the hospital and watch it with them.
  • Bring a favorite game to play. Make a favorite meal, bring in something from their favorite restaurant, or bake them a treat.
  • But the best gifts of all are frequent calls and visits from family and friends!

Love,

Angela

Joshland Note: This was her rough draft with some very minimal editing done on my part. Reading it makes me smile because I know that if she had decided to blog, it would have been AMAZING. Not only was she a CF expert, but she was so tuned into all facets of the world: politics, medicine, philanthropy,...you name it, she had an educated opinion on it. I don't know many people who started watching CNN at twelve years old. Meanwhile, her grown up brother writes about his moments of juvenile delinquency and plays with a puppet. Can you say...different? What if we would have blogged together?! She'd have been the news and I'd have been the human interest piece (I use that term very loosely). What a team we would have made! Welcome to AngieTown and Joshland. :-)

I agree with every word of this story, except the part about "not being a jerk." You don't have to be a jerk, but in my lifetime with cystic fibrosis, I've learned an unfortunate truth: Occasionally, being a jerk is the ONLY way certain medical professionals will listen to you. Normally I am not a jerk, but I do challenge my doctors, nurses, and RTs, etc... because that is the only way I can protect myself and it's only way they will EVER get better at their job. That includes both their skills during medical procedures and in their bedside manor.


I was relieved to find out during my last hospital stay that the Vascular Access Team at the U of MN coincidentally instituted Angie's "2 poke rule" into their code of ethics some time ago. Angie had terrible veins and even after getting a porta cathe (permanent IV line), she still struggled with blood draws and needles. The tears would start at the mere mention of them. It's getting better, my sweet sister. :-)

You want to know why I do what I do with the puppet? Yes, I do enjoy creating those videos, but the real reason is because there are kids that have to deal with things like Angie did all the time. I want them to smile, if only for a moment.

You want to know why I let the "Junior Doctors" beat my body to smithereens when I go in-patient or have tests/procedures done? It's because I never want another kid, whether it's a 1 year old or a 17 year old, to go through what Angie went through. Granted, things have improved by leaps and bounds in the past twenty years, but those new doctors and nurses still have to learn on someone. I wish there was a better way to have medical professionals learn their craft other than making mistakes and accidentally hurting kids. It's not their fault, but I just hate it.


I'll leave you with this final thought: Personally, I don't love a ton of visitors when I am in the "The Joint". If I'm in there it means I'm in rough shape and things are happening to me that aren't so pleasant to anyone's five senses, and possibly the sixth one. That being said, I do appreciate the phone calls and emails. My dear sister was right, contact with the real world is a very good thing. What a pleasant and much needed surprise it was to have internet access while I was in there for my recent stint. As I said before, Angie would have loved things like blogging, Facebook, and the internet. It certainly helped me pass the time. You can read in her own words how lonely she was. I think of that every day of my life. I hope after reading this you will take a moment to make a phone call, send an email, or hop in the car and go visit the the people you care about who are cooped up in that "cold, sterile dungeon" or even someone who might be feeling lonesome at home (CF or not) . Take time to send them some love instead of mowing the lawn or doing the dishes. Those things will always be there to do. People unfortunately aren't as eternal. Only in our hearts.

Angela,

Today marks 17 years since you passed away. As I say in many of my blog posts, there isn't a day that goes by where I don't think of you and wish you were here.
I know this isn't quite a published book or a movie, but at least your dork of a brother can share your message with a few people and teach them something very important about life: It's much bigger than just their little corner of the world. I love you and I miss you with all my heart and soul.

Love,

Josh

13 comments:

  1. I'd given anything to spend the day quoting Clue with Angie. :) Much love and a few hugs, Colleen

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  2. Josh you are such a good brother for posting this! Not only does it help Angies legacy live on, but it helps patients, families, friends, and even medical professionals understand and grasp a little better what a hospitalization feels like. I loved reading this and I wish there was more! Thank you, thank you, thank you for posting this! =) Bless you and I am praying for you.

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  3. Have I ever said how proud I am of my children? I will love you both "forever...and ever...Hallelujah, Hal-le-lu-jah..."

    Love,
    Mom xoxox xoxox

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  4. Josh,

    I agree wholeheartedly with NikkiPea's comments and just want you to know that I recently found your blog and am moved by many of the post here. Your sister sounds like she was such a joy to be around and I know it is very hard on you and your family this time of year. I'm certain you do her proud and my hope is that you find much peace and love throughout the Holidays.

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  5. Thank you so much for sharing this with us. Angie sounds like someone I wish I could have known. And I know that if you guys had a blog I would love to read it :)

    I just went through my very first cf hospitalization and although it wasn't fun and I got poked a bunch for random blood draws. I am happy to say the IV and the PICC went in with one stick. I don't know how I would have managed had it been multiple sticks. Angie is truly a hero.
    I'm sorry she can no longer be with you, you are a GREAT brother :)

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  6. Josh, I don't even know where to begin. What a beautiful testimony.....thank you so much for sharing Angie with us all. She is so very, very proud of you. BIG hugs and much love today...

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  7. Thank you for sharing this with us! We're our best advocate!

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  8. I love how you honored Angie in this post. I know "anniversaries" can be really difficult. I know you have been thinking about Angie a lot lately. Bug Hugs!

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  9. Love it! That's so cool that you have that! Very special!

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  10. Josh, I've been thinking about Angie all day. I LOVE that you published her survival guide on-line. Its so cool that all these years later, she got to participate in this whole internet phenomenon. Also dig the "Angie" font! I know she's proud of all you're doing. Keep it up! Love, Uncle Brian

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  11. First of all, I'm amazed that she wrote so incredibly well at such a young age!

    I've often been told that I have an old soul. I think that it's common for people who deal with CF to be "wise beyond their years". It seems to age us in ways that aren't necessarily pleasant or fair. Angie was no exception, it seems. She certainly was wise... and quite hilarious!

    My hospital also has the two-stick rule, by the way. ;)

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  12. I was very moved by your post Josh. It's truly a beautiful way to remember your sister, and share her with those who never met her.

    Her survival tactics are going to be stored on my handheld for referal and to share with friends and family.

    http://super-bronch.blogspot.com/

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