flash forward

Another regularly scheduled appointment with my cardiologist in April following a regularly scheduled pacer check… Except this time I probably shouldn’t have waited to see the doctor.
I explain to the cardiologist that I’ve been feeling pretty crappy since I was sick in December – just haven’t ever really bounced back from that. I’ve been on a particularly downhill slide for the past month or more – more tired, exhausted after work, sleeping with 3 pillows, waking during the night, exhausted when I wake. I take 60mg of lasix daily, and some days, it feels like I’m eating chicklets instead of a diuretic. Abdomen bloated. I have little appetite. I eat a few bites, and I’m full.
He says that I am describing heart failure. I sigh. He states that I need a cardiac catheterization. I sigh again.
He says, ‘Tuesday.’
I say, ‘This Tuesday?’
He says, ‘Yeah, why?’
I say, ‘I have clients.’
He sighs and simply says, ‘Follow me,’ as he nearly runs to the scheduling desk, with me following at a distance.

The person who schedules calls me into her area – she hands me a booklet “Your Cardiac Catheterization.” I look through and retort, “Have you ever noticed how these things always have pictures of old guys? What on earth am I doing here?”
She tells me, “You need to check in at 5:30 on Tuesday.”
“In the morning? Oh geez…”

So I go,.and do the catheterization. I’ve become a baby about pain/being awake during these things, but there aren’t any pain meds I can have during procedures, since I’m allergic to Fentanyl now. It was pretty painful and upsetting, but it is done.
I have to have another echocardiogram, and then the . CRT device will reprogrammed. At least another 1-2 weeks of feeling like this. As it stands now, I am barely pulling myself through the day.
Doctor said that he is cautiously optimistic that they will be able to improve things for me. I think I will leave it at that. I did ask what would happen if they couldn’t, but I am not going to believe that until/if it happens.
So if you are a prayer, now would be a good time. I am officially getting scared.


playing catch up…

The September 9th surgery for Left ventricle epicardial lead placement was successful. The pain was another story entirely. A 11/10 and quite actually, off the charts. And I have a very high pain tolerance much of the time. That continued for most of the month of September, and much of which is a blur of pain, pain meds and tranquilizers. Not the best September I’ve had, but all in all, it was to be the beginning of better things.
Pacing at 95% then 100% and holding. There were actually days in late October when I felt good – I could walk more than 20 steps and not be dripping sweat. I was optimistic and looking forward to returning to work in November.
Work began November 2nd, and everyday I was there for about month was pure joy. I loved being up, out and getting back to some semblance of my old life again. 20 hours a week seemed a little silly, after all, I had worked far more than that all my life, but this was a different time – different rules. A starting over of sorts.

And then, after Thanksgiving dinner, came the flu – I can’t remember when I had been that sick. Fever, coughing, barffing, diarrhea – the whole shooting match. And I was flat-on-my-back sick for more than 10 days. I saw my gp 3 times in the course of two weeks. She prescribed Cipro – an antibiotic. It seemed like a good idea – until after the second dose, I developed blisters in my mouth. No more of that. Then she prescribed prednisone, given that I had a cough that was hanging on and sounding very bronchial. I still didn’t feel any better, but by that time, I thought all of this would just have to run its course. I went back to work too soon, but I rationalized that I needed to get up and get moving. I had a regularly scheduled appointment with my cardiologist and an echocardiogram. My blood pressure was sky high as was my pulse – something on the order of 140/110 and 130. Not good. My cardiologist thought I was in active heart failure again. I saw him again after he got the results of the echocardiogram. In the meantime, I decided to take one of the leftover antibiotics I was prescribed and tolerated briefly over the summer when I was diagnosed with what was thought to be MERSA and ended up being Steven’s Johnson Syndrome. Within 48 hours, I was feeling remarkably better. And I was off the prednisone.
The follow-up appointment with my cardiologist yielded what I felt was disappointing news – 10% improvement in heart function post biventricular pacer/ICD implant. I don’t want to be greedy or seem ungrateful, but I was really hoping for better…
My cardiologist said within 10 years, he doubts there will still be “human” heart transplants. Less rejection potential with a “machine” – that was definitely a plus since that will likely be the eventual course for me. I left the appointment feeling somewhat disheartened, but resolved to make the best of the situation.

infectious disease doctors and allergists/immunologists, oh my…

Last week was challenging. Monday was a 5 minute appointment with the infectious disease specialist who was summoned to id an antibiotic that he felt comfortable with me taking at my next surgery.
The dr was more of a jerk than I remember from our first appointment – that said, I am pretty tired of all of these people, so it may just be me. Still, he didn’t seem to even remember me from our previous appointment. He started by telling me – over and over again – that he isn’t convinced that I had SJS, as I didn’t have ocular involvement.

After I left this – yet another 5 minute appointment- I thought about the appointment with the surgeon. Clearly that appointment was not the shortest on record. I was mistaken. This one was shorter AND more annoying.

SJS is not only diagnosed by ocular involvement, but the need to make sure that one will not be sued is certainly a factor in most everything these days…

So that appointment ended with a prescription for an antibiotic that he felt was a reasonable choice. Literally 5 minutes.

The week was spent without antihistamines and concluded on Friday with skin prick tests for numerous antibiotics, betadine, lidocaine and hibiclens. No reactions to any of them. In some ways that is good; but it points strongly to my autoimmune disorder as the source of the SJS reaction. We may never know what actually triggered it.
Before I leave the allergist/immunologist appointment, he informs me, with something of a smirk, that the hospital diagnosis that was recorded for the reaction I had was simply “hives.”.

“Hives MY BUTT!!!” I exclaim. “Since when do they hospitalize people and put them on mega-doses of IV steroids for 3 days for hives??”

“Yeah. It doesn’t seem very likely, does it?” he says, continuing to half smirk and half smile.

“Hives MY BUTT!!!” I announce again, as if the second time would drive my point home further.

For as uncertain as the infectious disease doctor appeared to be, this one had approximately the same amount of certainty of SJS.
For whatever it’s worth, they can call it what they will now, it was hell and no place I want to return to.

The surgery is in 8 days. I am counting down the days…

in preparation for surgery #2

Today I saw the allergist/immunologist to see if the pre-surgical cleanser the doctor wants to use will be acceptable.
I kinda like this doctor – as doctors go – he’s smart. And I think he knows what he’s doing. And so I decided to ask one of those questions one just shouldn’t ask.

“Am I the most complicated patient in your practice?” I asked.

“Yes. Yes you are.”

And so we move on to the topic of Hibiclens…the pre-surgical cleanser…

He says, “People usually do ok with this. But a small number of people are allergic and have reactions.”

He says this matter of factly, and then he looks at me.

“And that will be me, no doubt,” I say.

He shook his head as if to say, “we’re not going there.”
Not today anyway.

Not that I have lost my positive attitude or that I don’t generally feel hopeful, but I am getting edgy in a way that I don’t care for. I am honestly tired of
all of this.

But it’s early yet! Next week, I have an ap
pointment with an infectious disease specialist to ferret out what antibiotic is left that I am not reacting to at this point, as I will have to have something following the next surgery.
Then back to the allergist/immunologist for skin tests for hibiclens and a few other things.

It is good that I wasn’t wed to the idea of resting next week.

Really cool medical jewelry!

In the midst of all of the health challenges I’ve had, I have had to start wearing medical id. I went through countless sites, looking for something that works for me – something that fits my personality and style.
I’ve found some medical jewelry that I actually enjoy wearing, and I want to share their contact information with you who read my blog.
Whether for you or a family member or friend, this is the coolest stuff I have found!
Take a moment and check them out!
Lauren’s Hope:

If the link doesn’t work, highlight and left click – and click on “Go to http://www.laurenshope.com” and you’ll be there in a snap!


The quickest appointment on record…

Last Thursday, at the cardiothoracic surgeon’s office…

“Have you heard of Steven-Johnson Syndrome?” I ask.

“I remember something about that from medical school – it’s a bacterial infection, correct?”

“No. It is a severe allergic reaction,” I reply.

“To what?”

“Betadine and bacitracin… We think. I will return to the allergist for confirmation, but in the meantime, what other options do we have?”

“Herbiclens (sic)… or alcohol.”

“Geez…,” I think… “Alcohol in an open wound. Now THAT sounds like great fun!”

We move from the exam room to his penthouse office overlooking all of the Bellevue area, mountains, etcetera…
I sit.

“Questions?” he asks.

“What are you going to do with the lead that is not functioning properly?”

“I’ll cap it and leave it. No need to remove it unless there is infection, and removing it is a far more complicated process.”

Fine with me. I’m not looking for complicated.

I ask, “How long will this lead placement last?”

“You really need to ask your electrophysiologist that question. I am just doing the procedure.”


“What is the recovery time?” I ask.

“Overnight in the hospital and then 1 week…”

HUH? NO ONE HAS SAID ANYTHING EVEN CLOSE TO THAT. OK… I am thinking this guy doesn’t get it. He clearly doesn’t get it.

But all of that said… He is among the top surgeons in the northwest. His staff loves him. They say everyone loves him. I wonder, why don’t I love him?

Perhaps, I am just UNenamored by medicine and the field of medicine. Perhaps I am just S-I-C-K of all of this and want to have a different group of people to hang with other than people who have chosen this line of work. Perhaps I just want my life back and wonder if that is to be…

This hasn’t been the greatest week. I have little energy, and it seems to be more depleted daily. I have nothing to give. Such a strange place for a counselor to find herself…

so here we are…

Last week, I met with the electrophysiologist/surgeon.

“What do you want to do?” he asked.

What do -I- want to do?

“I need to feel like myself again. I need my life back again. I need to get back to work.”

“We could leave this alone until the battery dies and then replace the lead and the pacemaker at the same time.”

You’re kidding?! Wait for a year and half and go through all of this then???
Nope. I don’t think so. Not when the pacer battery life is supposed to good for up to 6 years.

What is going on, I thought… And then, like a light coming on, I got it. I am the 5% that messes up his 95%. I am the failing grade. I am the one who will have to see a cardiothoracic surgeon to fix what he couldn’t. But under all of that, it made so little sense. Why would I wait to do this? The device isn’t working properly as it is… Intermittent isn’t functioning. It means sometimes functioning. Nope. I didn’t come this far to be satisfied with “a little better.” Nope.

So the electro/surgeon gives me the name and phone number for the cardiothoracic surgeon, and tells me that he thinks I am doing the right thing even though the risk will be greater given the Stevens-Johnson. HUH???? Now I really get it. And it’s not real reassuring…

The appointment is tentatively scheduled for Thursday, having been rescheduled twice already.

to be continued…

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