Thursday, June 18, 2009

Commonplace Medical Care: Good Enough?

Once a month I go to an oncologist’s infusion center to be given a medicine called Tysabri. I have no idea where they got this ridiculous name, because it has no resemblance to the generic, Natalizumab. I will readily admit Tysabri is better than Natalizumab. But they are both pretty darn bad.

Tysabri is a relatively new treatment for Multiple Sclerosis. It came out in 2004 with a lot of promise. Studies were showing it slowed the progression of MS by 68% over a placebo. That is pretty awesome. There was one tiny little hiccup. Three people on the drug developed an opportunistic infection called progressive multifocal leukoencephalopathy or PML. PML is a brain infection that is almost always fatal. It was for these three people. And now it is up to eight.

'Fatal' is one of those funny things that you just can’t reverse. Even though they didn’t have to, Biogen, the company that manufactures Tysabri, pulled it off the market. People who had been on it freaked out. They were better on it. And now it was gone.

After a year of research and damage control, Biogen re-introduced Tysabri. With a ton of restrictions. Because of the potential of a fatal illness, doctors were to only consider Tysabri as a last resort drug. Only if a patient could not tolerate or did not do well on the other MS therapies would they go on Tysabri (I fall into this fun category). They had to be registered with the Biogen Tysabri program. They had to complete a questionnaire every time they had an infusion, to determine if they had been on anything that might have suppressed their immune system even more in combination with the Tysabri. These questions were to be asked before the infusion. The infusion, through an intravenous line, was to be every 28 days. There should not be a gap in the treatment schedule. People who were on Tysabri when it was pulled and then went back on after it’s reintroduction were having allergic reactions. It appeared this was something you could not be casual about.

So this is what is on my mind once a month when I go to the oncologist’s office for my infusion. Opportunistic infections. Compromised immune systems. Death.

Ha ha. I’m just kidding!! lol I only think about death.

I went for my Tysabri infusion yesterday, to the same oncologist’s office I have gone to for two years. I really like this office. The first infusion center I went to was also an oncologist’s. They treated me like a cancer patient, doing an exam and blood work at each visit. I questioned the need and was told “This is the way we do it." I objected and was told it was their way or the highway.

Hello highway.

I love the place I go to now. Even though they have kept some of that 'chemo protocol' that drives me nuts, they are good natured and flexible. As opposed to obnoxious and bullying at the first place. The doctor I see (albeit unnecessarily) is very friendly and pleasant and we always have a nice chat about all sorts of things. I love the nurses, who are really, really kind to all the patients. They are just wonderful in a million ways.

On to my issue.

I have been feeling and looking like absolute crap since my shoulder surgery 6 weeks ago. My body has puffed up like the Michelin Man. My legs and feet especially are bad, with my feet oozing out of the straps of my sandals. I'm in constant pain. But no one knows why this has happened. Or what to do about it.

My Physical Therapist is awesome, practically standing on her head trying to come up with a modality that will make a difference. But she doesn’t know what’s wrong. My surgeon? Well, he is Dr. Wonderful, so Be Still My Heart. But he is starting to look just the teeniest bit frustrated that I am not better. When I don’t get better, I have to keep coming back. Keep coming back? That is a failure. In some way, some part of the process has failed and who wants that in their face? He suggested it is an immune response that is causing so much pain. I am totally on board for blaming my body. I specialize in self-loathing. But that is a guess and a guess is the best he can do. He did load me up with pain killers, but they barely touch the pain. I am probably habituated to them now.

But back to the infusion. So I am already feeling like crap. At every appointment I have to get my blood drawn because Tysabri has also been found to be associated with liver damage. (Malignant melanoma too, woo hoo!) The phlebotomist is a very pleasant woman who has long, claw-like acrylic nails, otherwise known as Bacteria R Us. She either doesn’t wear gloves or keeps the same single glove on that she had when I come in the room, from the last patient. I say nothing, because that is the way I was raised. So she is a major danger to me, an immunocompromised patient, and all the other fragile chemo patients she sees ever day.

But I don’t want to get her in trouble. Or make her mad at me. So I keep my mouth shut.

I drag myself into the treatment room and climb into a recliner that is so big my feet don’t reach the floor. It is a large room, probably 50 by 30 feet, with a glass wall divider. There are six recliners on one side of the wall (the Quiet Side) and about 12 on the other side, where there is a television that is always blaring an unutterably bad movie. The ‘Quiet Side’ is a joke. Everyone has someone with them and, naturally, they talk to each other. Because everyone is talking, they have to raise their voices. Some are talking on cell phones. There is a constant cacophony.

One of the nurses comes over to start my IV. No blown veins, so only one stick today. Yay! We chat, she hangs a bag of Benadryl and within about five minutes I am dozing uneasily. The Tysabri gets hung while I am snoozing.

Funny thing, I never remember them asking me the questions on the questionnaire that are supposed to be asked before the Tysabri is given. Hmmmm…

I wake up after about an hour. I haven’t had any lunch, so I eat the blueberry muffin I brought with me. Within a half an hour, I start to feel kind of queasy. A requirement of the process is that my blood pressure is to be taken before, during and after the infusion. Yesterday it starts at 134/84; next one is 145/86; the final is 160/90. I ask her if I should be worried. What I really mean is “Could you please call an ambulance?” The nurse says, wow, that is really high! But that is it. I tell her I feel nauseous. She stops in her tracks. Oh good, someone is going to take care of me! She narrows her eyes and says what do you mean.

And I say “I think I ate my blueberry muffin too fast.” Because God forbid I inconvenience somebody by dying on their shift. She bounces off, back to the six million other things that need her attention. I am thinking there is a reason my blood pressure is supposed to be taken. Like maybe a change in BP is a danger sign? But that doesn’t seem to occur to anyone else.

These are people who are really, really good. They work hard. They never stop moving. They are nice. They are funny. I like them. But I am so lost as a patient, I feel I don’t exist. My body is not doing what it is supposed to be doing, it’s not healing and it’s doing weird stuff, but this isn’t really anyone’s priority. Protocols are left by the wayside. A potential side effect means the staff gets out late. Blood pressure creeping steadily up to dangerous levels? It’s brushed off as being caused by the pain in my arm. Because anything else means extra work for people who are already overworked.

The worst part is, this is not a solitary occurrence. This is an epidemic. Everyone you know with a chronic illness could probably tell a similar story.

It is hard enough being sick and in pain in the first place. It was not at the top of my career choices, but it is equivalent to a full time job. It is almost impossible to advocate for yourself when you are feeling really rotten. And people who do advocate for themselves? They are considered rude pains in the ass.


I don’t know what the solution is. Besides learning to speak up in a way that does not create defensiveness and animosity on the other side. But is that possible? Did I ever tell you that I did that once before with a doctor’s office? Their response: a certified letter saying don’t come back.

When I first started, I asked Dr. H how long I would be on Tysabri. He said “Until something better comes along.” So for now, I will just quietly haul myself in every 28 days. I don’t want to rock the boat. I don’t want to get a certified letter. I am just too darn sick to battle. I don’t want anyone who is taking care of me to be mad at me. I am already too defenseless. That is a kind of vulnerability I cannot withstand.



Lawyer Mom said...

Rock the boat! Just don't tip it over.

I think (not that you asked, and my mother's best advice, which I regularly break, is not to give unsolicited advice) you should TOTALLY speak up about the long-acrylic nail lady. For some reason I thought those had been banned in health care workers. They are bacteria warehouses.

"And people who do advocate for themselves? They are considered rude pains in the ass." Who cares if people think you're a pain in the ass? You'll be a LIVE pain in the ass which is better than a passive dead one.

You've clearly educated yourself on what's going on. So speak up, I say. Speak up!

I have a chronic condition, too, and I can't count the number of times there would have been a major screw-up if I hadn't said something. I'm sorry you're feeling so bad and it is indeed tough to advocate when you're feeling lousy. Take a friend with you . . . I'd come if I weren't in another state.


Anonymous said...

The doctor I see (albeit unnecessarily) is very friendly and pleasant and we always have a nice chat about all sorts of things. I love the nurses, who are really, really kind to all the patients. They are just wonderful in a million ways.
~I believe that(at times) can be as important as the medical treatment.
I was running a 6 doctor neuro practice when Ty came out & I remember the issues, but also the good it did...~Mary

The Mother said...

This is certainly an enormous area of concern for patients.

It didn't used to be like this, you know. (Sigh).

Docs bemoan the current state of care, too. But when they have hours of paperwork ahead of them every afternoon, it does get frustrating (on both sides of the scale).

And Lawyer Mom is right about one thing (well, more than one. USUALLY right)--you are your own best advocate. Stick up for yourself, and don't let the system (or the staff) push you around.

brokenteepee said...

Being in a similar boat you do need to politely request. Strongly request the care you are paying for. For you are paying for it whether through insurance premiums or through your social security pay ins that you made while working and are now covering your disability if you are on disability.

My husband fought so many battles for me which made things easier for me to just be sick but he went to the NJ state insurance board many a time to get results. And results we got.

It sucks to be sick. I am sorry. I hope it gets better but progessive disorders well, suck.

Valerie Roberson said...

It just makes me ill to think of patients going through that. Although even with my limited exposure to the medical "service" I shouldn't be surprised.
I do think you should speak up about Ms. Dragon Claws...That's just gross. But I also understand why you would hesitate...What a hard situation :(
You continue to be in my thoughts and prayers...Good luck with whatever you decide.

Much love-

Marie said...

Thank you everyone for stopping by and especially for commenting!

Lawyer Mom: You must have missed my wimpy subtext. lol I am too wimpy and too worn out to speak up. And last time I spoke up, the practice fired me!! Eeeeck! That was horrible, because I was so stupidly proud of myself for standing up to this misogynistic asshole ten years ago. But the laugh was on me because he told me to take a hike. But thank you so, so much for your encouragement! xoxo

Mary: You are absolutely right, and that is what has kept me coming back. And the T has done a good job. I am not doing so great right now, but I only have had one relapse requiring IVSM in the past two years. It is good to see you. :)

Mother: I know how hard you work, I really do. And I know what a nightmare the paper work is. It is a relief to know there are good physicians in the world like you.

I think for me the biggest thing is being the whole package. I have been very forthright in the past and stood up for myself. But I am a different person since I got sick. I still haven't entirely wrapped my brain around it. it feels like that is all I can manage right now, is trying to find my place in the world with a chronic illness. And it has left me with no other resources.

Pricilla:{{hug}} It does suck. Thanks so much for reminding me I am not the only one who deals with this.

Val: Thanks for your encouraging words too, sweetie. I am so grateful!

Well, you guys have galvanized me into action. So I am going to take the same time-worn steps that all cowards have down through the centuries: The Anonymous Letter. lol

Wish me luck!!

manju said...

Marie, you're no coward!

And I came by to tell yoy- you are tagged. See

Julie said...

The nails have been banned so do bring it up. It is your life. Rock the boat but from reading your posts I believe you can do it gently and not tip it over. Nurses are busy but your our first concern. So if your concerned about what is happening to your body make sure they are concerned as well. I tend to stop in my tracks and go back when a patient says, I really really feel bad and something is wrong. Ok, lets check you out again. It is always better to nip it in the bud then deal with a full blown crisis.

The med sounds like a necessary nightmare. I am sorry there are no safer alternatives for you. Your a brave woman.

Marie said...

Manju: Thank you my dear friend. {hug} I will stop by!

Julie: I know, those nails are a menace! I can't believe no one has ever complained before, either patient or staff.

Fortunately I was fine, but the BP and the queasiness were starting to worry me. I am such a neurotic nut, I was taking that ball and running straight to the morgue. lol I am going to talk to my neuro about what I should do if the BP goes up like that again. And I will ask him to have his recommendation/order put in my chart there.

Thank you for your kind and encouraging words. :)

Herrad said...

Hi Marie,

Blimey really upset and angry that you are being treated like that.

Take care.


Marie said...

Thanks Herrad!! Thank you for stopping by and thank you for leaving a comment. :)

Kath said...

I had to dash out to twitter to see where you are I was so appalled. Here in the UK th nails as described are DEFINITELY banned. Each group of hospitals has am "Infection Tzar" great name but they rul with a rod of iron. Sadly our results do not natch up to the intentiosn and I guess that uis what is happening to you. Do speak up.

I love your style of writing so articulate, coherent and informed. OMG I've used all my long words in one sentence ! I will continue to follow your blog.

ps Who iknow where they get the "trade" names for drugs. Maybe this means something in a foreign language (like blow your brains out !)

Marie said...

Kath, thank you so much for stopping by and for your Twitter follow. :) It is great to meet you.

Thank you so much for your kind words and for the long ones too. lol I am looking forward to hearing from you again. :)

Jane Turley said...

Woe is me for not having been here a while to support you:(

The folks are right about the nails - but look you don't have to do it face to face. Save yourself the angst. Most places (well in the UK anyway) have a suggestion box - slip a note in when no one's looking. (Might have more effect that way anyway - especially if you word it carefully, like your doing them a favour cos you know about the rules...) Alternatively, give her some nail clippers for Christmas:)

Marie said...

Jane (oh, I have missed you!!!), boy do I wish you could be with me. I wish anyone could be with me. boo hoo

The suggestion box is a good idea. :)