Patient Relations To The Rescue! (Definitely Something To Be Thankful For)

Do people die from medical red tape?

When I was discharged from the hospital, I was told that I needed to make a follow-up appointment with my GI doc within two weeks of my discharge – my GI doc who I didn’t see while I was in the hospital – I mean this to say that if she had seen me, I’d feel better about taking an appointment at a later date.

I called to make the appointment and was told that my doctor couldn’t see me until February. February?!? It’s November. I can pretty much guarantee that if I don’t get seen until February, I will end up back in the hospital before then.

The person I talked to was not only unhelpful, but also just plain rude (can you say nurse on a power trip?). I wasn’t trying to buck the system. My discharge papers clearly say that I need a follow-up appointment within two weeks. The last time I was in the hospital, they made an appointment for me with my primary care doctor a day later.

My boyfriend gave me some tips for strong-arming them into giving me an appointment (or rather, the proper language to use). Although I’m not very good at this type of thing. Something about not biting the hand that feeds you… So I called again…

The person I talked to was definitely more helpful than the first. But the best they could do was an appointment a month from now with the PA that works with my GI doc.

Of course I took the appointment. I’d be a fool not to, especially considering that I am still in pain and my gut is not working properly.

I remember how shocked I was when I first got sick, and I was told I would have to wait from November until January to see my rheumatologist for the first time. At that point, when I had from nothing to cancer, I honestly wasn’t sure I would be alive that long to make it to that appointment. I’m dead serious here, no pun intended.

I don’t particularly like that the ER has become my first line of defense. But at this point, if that’s what I have to do to get someone to take my symptoms seriously, then that’s what I have to do.

Anyway, I’m usually a person who follows rules and goes through the proper channels, but not when they are so obviously at the expense of what little health I have left. My boyfriend suggested that before he stepped in, I should contact patient relations.

I didn’t even know such a thing existed, and their offices are hidden in the annals of the hospital. But they were actually able to get results, and in a much faster manner than I. The person dealing with my case said the following: 1) The appointment should have been made for me by the discharging unit, 2) He wasn’t sure why GI is giving me such a hard time about getting an appointment, and 3) That all clinics should have built-in slots for exactly this purpose.

I mean, come on, I’m not the first chronically ill person to be hospitalized, and I certainly won’t be the last.

So I got a call this morning that I can get in to see my GI doc in two weeks. I was told that I should be prepared to wait. Guess what? They could have given me a day and no time, and I’d go and sit there and wait the whole day if I had to.

Certainly part of this is piece of mind. I know there is something going on, and I want to get a clear picture of it. I don’t want to end up back in the hospital, and I want to make sure that this problem is dealt with more aggressively than it was before I was hospitalized.

It always frustrates me when I am unable to get results for myself and have to rely on someone else. But GI was just being ridiculous, and causing me quite a bit of stress, no less.

We’ve all had negative doctor/nurse experiences. I think it comes with the territory of being chronically ill.

If you feel that you have been disenfranchised or treated unfairly, you should see if such a resource is available. I’m not sure that such a mechanism exists in private practices, but I suspect they do exist in most university/teaching hospitals.

I guess there are competent, helpful people still left in the medical bureaucracy, which is definitely something to be thankful for.

Happy Thanksgiving, Everyone!

Benlysta: Here We Go (Again)

Last July, I wrote a post airing my skepticism about the new drug, Benlysta. And several of my readers agreed with me.

Given, the news about the drug over the past several days, I find myself writing about it again, and singing a similar refrain.

I would love to be hopeful. I would love to be jumping up and down right now, and bouncing off the walls. But I’m not. After surviving my second lupus-related hospitalization in a little over a year, I am seriously questioning the efficacy of any and all medications at the moment.

I read a very interesting New York Times article that is at best equivocal about the benefits and risks of Benlysta.

Another interesting thing is that the stock of Human Genome Sciences, Inc., the maker of Benlysta, dropped yesterday after the FDA hearing, due to concerns expressed about the safety and efficacy of the drug. And Benlysta would be the first drug ever to make it to market for the company.

According to a Business Week article : “While the Food and Drug Administration advisers recommended approval of Benlysta yesterday, they raised enough concerns about safety that U.S. sales may be limited […].” Further, the article states that it“works well enough to outweigh risks of suicide, infection and cancer.”

I’m inclined to say, that’s all? That’s all we get? That likely wouldn’t have kept me out of the hospital. It wouldn’t keep me from having a throng of doctors. And would it minimize my medication regimen? Maybe. Maybe not.

What I really want is a cure. I don’t want to be sick anymore. I don’t want my number one job to be that of a patient. What I really want to be and feel is normal. I don’t want a powerful drug to create a veil of normalcy. I simply want to be. No matter how good this new drug is, it isn’t going to work for everyone. There will be side effects, which could potentially be worse than the disease, itself.

Overall, I feel like a lot of the story is missing. And I don’t think we yet have all the facts to make an educated decision about whether or not to utilize this drug if given the opportunity.

Medication decisions are extremely personal, and of course, need to take place in concert with medical professionals. But I do caution readers to remember that there are many players involved in this approval process, and I have to wonder if the patient is really first on the priority list when deciding the fate of this orphan drug.

I feel like I’m becoming a so-called lupus drug frequent flyer. I’ve been on plaquenil and prednisone since I first got sick. I was on CellCept (off-label), but it had limited efficacy. I’m on Methotrexate now, but I am questioning it, too. It seems like my body gets comfortable with drugs and they just kind of stop working. So would the same thing happen with Benlysta?

Again, I don’t want to get ahead of myself here. Right now, what I want the most is my pre-illness life back, and I fear that’s something that no drug will ever be able to give me.

So how do you feel about this latest news? Does it fill you with hope, fear, a combination of both?

Worst Date Night Ever (And It’s All My Fault)

Is illness always in bed, a third party waiting to get in on the action?

I spent this past weekend in the hospital with my boyfriend, spending from around 5 o’clock Friday night until a little after 4 a.m. on Saturday in the ER, and was admitted from Saturday morning to Sunday afternoon.

I had, had pretty severe pain in my right side for about four days. I do sometimes get a pain in the area of my right rib if I am having a flare, but this was not like that, and not in the same place. And the pain wasn’t getting better, despite me trying to nurse it. I knew that going to the student health center would be pointless because if they felt around and saw where I was tender, they would assume appendix and send me to the ER. So in a way, student health would simply have been an unnecessary step.

My boyfriend basically agreed that given my complicated medical history and medication regimen, the only real choice was the ER. So we put aside our Friday night (not) in favor of some time in the hospital, as if my BF doesn’t spend enough time there already, right?

As per usual, it wouldn’t be a medical experience for me if there weren’t some down right ridiculous moments. But that’s how I have to act in these situations, otherwise I think would totally go crazy.

I told the resident that for a body that is rejecting its own organs, it has certainly been good about keeping all the useless ones, too. She told me that was the best line she heard all day. No problem, I love to entertain.

So the running hypothesis was that I had appendicitis, which is what I thought, too. And that because I’m immunosuppressed, my body wasn’t acting exactly like a classic case. So I had an ultrasound, which ended up not even showing my appendix. Then I had a CT scan and was told that I did have appendicitis and would be having surgery. Then a few hours later the attending radiologist disagreed with the original reading of the CT, and that while I didn’t have appendicitis, I did have something going on GI-wise, especially since I had three doses of morphine and very little relief. I won’t give any more details – GI stuff can be downright nasty – other than to say that I have had some GI issues in the past, and that the problem got a bit away from me. I had been having some issues off and on for several weeks and kept saying that I needed to get in touch with my GI doc.

The resident asked how long me and my BF have been married (she obviously didn’t realize he’s only my BF right now). We replied that we aren’t married. She said that it was an awkward moment, and proceeded to tell me that the pregnancy test they did – standard operating procedure – was negative. And I said, well, it would have been a lot more awkward if you would have asked how long we’ve been married – and we said we weren’t – and the pregnancy test was positive. Maybe you had to be there, but it was pretty funny.

And you know how sometimes long-standing advice can come and bite you in the butt, literally? You know how your mother always told you to make sure you are wearing clean underwear? Well, you might also want to make sure that if you are going to end up in the hospital, you aren’t wearing clean underwear that is bright yellow and says “I Love Boys” on it. Yeah, that’s all I’m going to say about that…

The rheumatology people were their usual crabby selves. My rheumatologist didn’t come to see me, but a few people from the rheum clinic did. When they came in on Saturday, they basically said that they felt my hospitalization had nothing to do with them.

I thought that was a bit ridiculous. Because in my opinion, I have lupus and rheumatoid arthritis first. Everything else is secondary. I never had anything happen to me like either of my hospitalizations before I became chronically ill, so to me, this has everything to do with them.

The rheum guy came back on Sunday, and said he heard that I hadn’t been allowed to take my Methotrexate – I was told that because it’s a chemotherapeutic agent, there were only certain doctors who could requisition for it – that whole thing didn’t make a lot of sense, but it was probably better that I didn’t take it. Anyway, in my head I was thinking: Now you care? Now this has something to do with you? Oh well!

I think you can learn a lot from being in the hospital. A few lessons from this latest excursion? It made me realize how much I try and fit into a day or a week. It also made me realize that I much prefer orange Jell-O to raspberry (although any kind of Jell-O tastes like food from the g-ds after being NPO for 34 hours). This is really important knowledge, no? And I think I need to have an “illness” bag packed so I can be prepared if this happens again. You know how pregnant women have a bag packed just in case? I think this probably works well for chronic illness, too, especially since it seems like a few day hospitalization is becoming a annual pilgrimage for me, unfortunately.

So I am, or rather, my illnesses, are a total mood killer. On the other hand, maybe this experience was a litmus test for our relationship. If it was, my BF passed with flying colors. He was pretty amazing.

He spent the entire night with me in the ER, after having gotten very little sleep the night before. He was really calm, which is what I needed, especially when it looked like I’d be having surgery very soon. He also brought me some clothes, a coat to wear out of the hospital since I hadn’t brought one with me, and he even snuck in some food for me when I was no longer NPO. He did this all of his own accord. And he used some of his connections to make sure that I was taken care of.

Aside from my immediate family, I’ve never had anyone take care of me like he did. What would I do without a doctor in the house? My boyfriend, the doctor, that is! I know I screwed up date night. I guess I’ll just have to make it up to him.

(And I am relieved to be going back to my normal role as a patient, the one who takes a bunch of pills and doesn’t always feel good, rather than the one that is confined to a hospital bed)

(And I still may need surgery, but I have to wait to get in to see my GI doc in a few weeks)

(And kudos to my mom for being awesome and helping me navigate the world of adult diapers made for someone the size of a baby elephant)

Running Out

Saturday morning I woke up, and went to take Methotrexate, only to realize that I only had two pills left. I take six every Saturday.

I panicked. I looked at the two pills and contemplated what to do next.

Not take any at all?

Just take a third of my normal dose?

As I started to think clearly, I realized that the CVS that my prescriptions are at is only a few blocks away. So I threw some clothes on and headed out. Luckily they were able to fill my prescription then and there, so
I waited eagerly to get my meds.

I honestly have no idea how this happened, and this has never happened to me before. I don’t think I have ever come up on short on pills at the moment that I needed to take them.

I know I have to let myself off the hook for this. We all make mistakes. And in this case, it was easily rectified.

But where is my head? I knew that I needed to refill my prescriptions sometime during this week, but didn’t realize that I would run out of something, especially Methotrexate, before I planned to refill them.

Has this ever happened to you?

Has it happened when you didn’t have easy access to your home pharmacy?

What did you do?

How important is it to take every dose exactly as prescribed?

There must be room for error, because patients, and even doctors, are only human. We can’t do everything right 100% of the time. It would be nice, but that’s not realistic.

So how do we become the masters of our health domains, considering that we can’t be perfect patients 100% of the time?

“Out, Damn’d Shot! Out, I Say!”

So I’m channeling Lady Macbeth here a bit. But notice that the title of this post says “shot” and not “spot.” You can probably tell where I’m going with this.

With the change in weather, I have been feeling pretty awful, like I’ve been put through the ringer, always under the weather – joint and muscle pain, headache, nausea, sensitivity to smell, sensitivity to fluorescent lights – I’ve got the perfect mix of lupus and rheumatoid arthritis going on right now. So I decided that before I “really” get sick, I should get my flu shot, which I did yesterday.

But I’ve been avoiding it, for obvious reasons.

It was this time a bit over a year ago that I got my pneumovax, and ended up in the hospital for four days with a cellulitis infection. Don’t recall? Read Adventures In The ER And The MPU.

Not that it means anything, but I did provide information to the Vaccine Adverse Events Reporting System about the incident. I didn’t hear anything, but a year later they sent me a form, asking if the patient had recovered or not. I did fill out the form, explaining that I had a reoccurrence of the original cellulitis infection, and that I suffered emotional trauma as a result of the experience.

Don’t believe me? I’ve been avoiding getting the flu shot like the plague. I have never been a fan of shots and needles, but after the events of the last few years, I’ve endured more needles than I ever thought I would see in my entire life.

But the thought of putting myself in the position of getting a life-threatening infection – while I’m trying to do something to protect my health – doesn’t really inspire me to go ahead with it. The whole pneumovax debacle may have been a fluky thing, but when something like that happens to you, it doesn’t matter what the odds are, it just sucks – and really tests your faith in the entire medical establishment.

I have a made a promise to myself never to have a shot administered at the student health center again – maybe this is irrational, but that’s the way it’s going to be. But can I really trust someone who works in occupational health? Have they versed themselves in the packaging material that comes with the vaccine before they give them or only after someone has a problem?

I also decided that I would get the shot early in the week, and not at the end of the week, like the pneumovax last year. That made it more difficult to do anything about it.

Now I really don’t want to get into a discussion here about the safety and efficacy of vaccinations in general. There are plenty of people who view all shots as bad and refuse to get any at all. That is your prerogative. It is mine, as I have done on a yearly basis since my freshman year of college (that was almost eight years ago already (and before I was chronically ill) – yikes!) – and especially since I became chronically ill – to make sure that I don’t die from the stupid flu. So please, no comments about how I’d be safer drinking Drano than getting a shot in the arm, or the like – unless you have personal experience that qualifies you to have such an opinion.

And speaking of safety, I’m sure you’ve all heard about the Methotrexate recall already. This definitely begs the safety question. My feeling about this, although I take the pill form of Methotrexate and not the injectable kind, is that I am safer taking this medication and the others in my regimen, than I am going untreated. That at least gives me some peace of mind. (And I’m saying that about the drug in general, not that I’d be safer taking a drug that is tainted with flakes of glass).

So I guess that’s my philosophy when it comes to the flu shot, too. I would rather know that I’ve done as much as I can do – which isn’t very much – to protect myself from getting sick than not and have to worry all the time.

Plus, because I volunteer at the hospital, everyone who is not vaccinated by December 1st has to wear a mask. And you all know how much I love doing that… So it’s not only in my best interest, but in the interest of the patients I come into contact with at the hospital.

I do realize, that, based on how little is understood about many immune-system related ailments, especially those that “flare,” that there is some question about whether to get vaccinated while flaring, or if vaccinations can cause flare symptoms. Whether or not you decide to immunize yourself is a personal choice, albeit not necessarily an easy one for those of us who are chronically ill.

Can I sleep a little easier knowing I got my flu shot? Not necessarily. But can I breathe a little easier and not cringe every time I am on the bus and someone hacks up a lung. Definitely. Doesn’t mean I won’t get sick. Winter is going to be a long road, just based on how I feel already. But it means that, in some small way, I did what I could to be a dutiful patient and protect myself, even just a little bit, from all of the disease-carrying vectors around me.