Thursday, November 20, 2008


Being in the hospital is stressful in so many ways, but one of them is trying to be your own advocate. Take this seemingly small issue: Ever since I got my Hickman catheter inserted in June, I've been instructed to flush the line or lines with heparin immediately (meaning, within about 10 minutes) after using it for something else (like chemo or blood draws). The heparin prevents the lines from clogging up. If they clog up, I'm screwed. I'd have to have this catheter removed and a new one put in, which would be a major ordeal. So I'm really vigilant about taking care of it at home, and I've been having to speak up for myself here because some nurses tell me it's not hospital policy to do that. (One nurse told me there's a shortage of heparin, so they're being encouraged to use saline locks if they plan to use the line again in a couple of hours.) Nonetheless, I want my heparin, and I want it now! I don't know how many times I've had to assert myself on this. And I always feel like I'm coming across as the "difficult patient."

So one of the nurses - a very nice guy, but we had the heparin discussion tonight - started talking to me tonight in what started to sound increasingly like a lecture about how we can't control the little things, and how sometimes we just need to let go and be calm. He said some other stuff, but by that time, my head was simmering, and I asked him to give some time alone (which is actually how I do deal with my stress). Of course there are many little things I can't control, and I don't try to. I don't complain when they wake me up every four hours to take my vitals. I try not to complain about the every-six-hour needle pokes for blood draws. I tried to be patient Tuesday when I waited for the better part of the day for them to tell me when they were going to drain my lungs. This chest tube has hurt so badly, but I've been trying to be a nice, patient patient and to thank people for the things they do for me, etc.

I need to be able to take charge of certain small things that affect my care - but I'm well aware that I am "not very healthy right now" (as the nurse put it), and that the biggest things are things absolutely outside my control. Like the results of tonight's PET and CT scans, which I should hear tomorrow. I am dreading them with all my heart, ever since Dr. S. told me this morning (woke me up standing at the edge of the bed - freaky!) that he thinks there will be more tumor growth where the fluid was. If that turns out to be the case, I don't know how I'm going to bear the news. So far, I feel like I've been managing not to sink into a mire of hopelessness. If I find out I now have a new slew of ugly tumors growing inside my lungs - if things are taking off faster and faster, what then? It overrreaches my tenuous hold on coping with cancer. It makes it harder for me to trust in my body or to believe that my body will carry me through more and more time.

This week has thrown me and my spirits in ways I never imagined when I checked in Monday. Of course I have to take care of my damned catheter. I can't let go of everything. That would be giving up completely.


Suzanna Catherine said...

Thinking of you and sending good thoughts for your test results.

Alex said...

Sometimes dealing with nurses is the hardest part of a hospital stay. Keep standing up for yourself, because there are so few things you can control right now, and you need to feel in control of something.

Good luck with your tests tomorrow. Sending positive vibes, and best wishes.

LutherLiz said...

I think it is wonderful that you are keeping up and demanding the things that are important to your mental and physical well being. Don't worry about being difficult if it means you are being proactive about your health.

We are still thinking about you and praying for you.

sara said...

Over from L & F. I am keeping you in my thoughts and prayers that you have good results from your tests. I'm sorry about having to deal with the nurses and feeling like many things are out of your control. I can't even imagine how difficult that would be. I was just recently in for the last two months and am now finally home - and I found the loss of control one of the most difficult things to deal with. I hit lows that I didn't know were possible. But my stay was nothing compared to what you are going through. I will keep you in my thoughts and I hope things turn around soon.

Agape said...

{{{hugs}}} of support and sympathy. I know very well what you are talking about with the hard on top of the real issues on your mind. God Bless you and give you strength. I think of you and your beautiful family often and remember you in my prayers.

Sarah P said...

I wish I was there to shout for you. Just imagining your frustration makes me angry on your behalf. I am praying the results are ok for you, and that God will grant you the grace you need to deal with them.
Lots of love and warm cuddles.

Jessica Griffith said...

You are totally doing the right thing by advocating for your care. Is there a way your doctor can order the heparin flush in your chart? You should not have to waste energy fighting with nurses.

Sending a hug for you...

Amy M said...

Hi Emilie - You are doing the best you can given the circumstances. It's been a long, tough week for you on many levels. Keep on fighting with the nurses and doctors. It's your body and you have control over a lot of things.

Good luck with the tests and with receiving the results. We'll be here praying for you.

Hugs from across the pond.

Almamay said...

Sending you love first and foremost. I have discussed the same thing with my therapists in the past. How do you behave like a good patient whilst getting what you need and want? (Answers on a postcard).

When my mom was ill we had an unspoken team approach. She was the good cop whilst I was the pushy-won't-take-No for an answer bad cop. Mom would have preferred to have been more of her own advocate but the ends justified the means. She got what she needed with bad cop (me) pushing and the nurses were nice to her. She was afterall, the person who was having the needles put into her and needed it done gently.

Monkeymama said...

I'm sorry that this is so stressful. I think that male nurse was out of line - having control over your something that seems like personal hygiene is so very different than trying to control every tiny aspect of your medical treatment.

Your past year has required strength in so many ways. I wish that battling your care providers didn't have to be one.

Marketing Mama said...

I'm thinking of you, too. One thing you could do - at anytime (although day shift is best) and ask for the nurse manager. Then explain your concern over the flushing and that you need her to help get her nurses on board with that. Also, they want to know when nurses are giving you a hard time. Believe it or not, all the hospitals I know of actually care about patient satisfaction --- if you speak up to a manager (not necessarily a nurse) I'm fairly certain they will want you to be happy with your stay.

Also part of your patient bill of rights is that you can choose NOT to have care from certain nurses if you are uncomfortable. So if you don't want that guy again, you just have to tell the nurse manager that you don't want him assigned to you. It's your right, and not enough people know that or use that right.

I'll be thinking of you today. Hugs to you.

MrsSpock said...

I distinctly remember in nursing school that it is important to give a patient as much control over the small things- because the big things are uncontrollable. I'm sorry some of your nurses seem to have forgotten that. I do not perceive you as asking too much at all.

Here is what I suggest to avoid constant battles:
Ask your oncologist to write an order- "Please use heparin flush only when using Hickman catheter". A direct order from the physician has to be obeyed- and they will have to answer to him, not you, if it's not done. You have a very good reason for it to be done, and that is avoiding more pain and another invasive procedure. If you explain to him what's going on, I have no doubt he will write it.

When you get your results, is Steve going to be with you, I hope?

You will remain in my good thoughts today.

kristine said...

That is some great information that MIssy has given (Missy, I'll have to remember that as well)
Emilie, you should be proud of yourself for standing up for yourself like you are. There are so many people who just sit back, bite their tongue and let everything happen - I'm glad you're not being one of them - even if it seems as though you are being a "difficult" patient. Do what's right for you!!
I'm thinking about you... always

Shannon said...

I absolutely agree with what the others have said here, Emilie. You shouldn't have to be fighting with nurses about this. I love MrsSpock's idea of having your doctor write an order for the heparin -- that sounds like it could work.
Whatever news you get today, Emilie, I have faith that you will be able to cope. I can completely understand why you would feel that the worst news would be too much for you to bear, but I know that if that should happen, you will find even more strength and courage within yourself.

I am praying for you and thinking of you.


battynurse said...

I'm sorry the nurses don't seem to be helpful in your situation. I know that myself I have seen most hospitals do the regular saline flush of ports but not the heparin. However if this is something important to you, ask the doctor to write and order that a heparin flush is to be used after all med administration and blood draws. Then it goes on the medication administration record and should for sure get done. The alternate side is that if there isn't an actual order for this, technically the nurse couldn't give you the heparin although they should explain it as such. I hope that you are able to continue to advocate for yourself and that they listen and take into consideration your routines as much as possible. I hope your stay isn't much longer and soon you will be home again.

Lisa said...

Just sending good thoughts out to you. I'm sorry you have to go through an increasing amount of frustration and pain. I hope things resolve themselves positively soon and you're back at home with your boys!

Susanne said...

Em, it would take too much "comments" space to express my own experiences with the medical system, how you can never get a clear answer from someone. I realize things like "why did you get cancer; will it be cured?" have no answer. But it sucks, and all to familiar, to be "jerked around" with issues such as whether you'll get your heparin.

It almost reminds me of a bureaucracy, being told one thing here, another thing there... Em, you almost have to confront it like a bureaucracy. True, maybe the nurse hinted for you to relax. But he was wrong in not recognizing that the frustration and tension, the "last laugh, is on THEM, the "bureaucratic agency," and not you.

Again, your greatest power is to recognize people like the nurse for who they are (in this case, a bit bureaucratic), and go from there.

Aunt Becky said...

So glad you're speaking up for yourself. So many times, nurses (I'm a nurse) get so caught up in policy that they can't be bothered to think outside the box.

Stay strong and be as difficult as you need to be. WITHOUT remorse.


Sue said...

Do what you need to in order to take care of yourself. If controlling the small things is all you can do, then go for it. I hope the nurses will be able to support you on this. I completely understand your frustration - I would feel the same way if I were you. Hang in there.

Piccinigirl said...

I think standing up for yourself is crucial for your emotional health. If your physical health is out of your control then your emotional you have to hang on to.

I write all this and what I want to say is that I'm here, thinking of you, praying, hoping for good results. I know what I WANT to say, but cannot find the words to convey how much of my heart is really with you and wishing I could take all this away. It seems that at the moment I am incapable of "small talk", I just want you better.
I just wish I knew how to get that emotion to you.

Marie said...

Emilie, we don't know each other, but I've been reading your blog for several months now. We have a blogger friend in common (Peace Garden Mama). I don't really even know what to say, but feel compelled to write. You have been such an inspiration; your strength and tenacity amaze me. I went through a very similar ordeal with my mother last year, and reading what you are going through brings it all back. She too, had the chest catheter and it was misery for her. Standing up for yourself is difficult enough on a good day, but even worse when you are sick. I think that sometimes, it's okay to not be positive; besides, it's impossible, really. And I would bet that you are tired of hearing people tell you to "think positive thoughts!" Anyway, I'm praying for you, your beautiful family, and that the test results are good. Take care, God bless.

Madwoman of Preserve Path said...

I'm hoping that the sunshine of a new day is helping you to feel a little more hopeful this morning. How frustrating all of this is. Know we're holding your hand and walking this path with you. Don't give up, don't give in. Do ask questions. You have to have some role in your care, whether or not it makes some staff feel uncomfortable. It's your body, after all!

All of that aside, I hope you get some good test results today and can go home and enjoy Thanksgiving with your family. Prayers for you.


Jo on the go said...

What's "difficult" to one person is "assertive" to another. Take care of you. Much love and good thoughts...