Episode 77: Clarity After Hep C Cure

Harvoni kicked Hepatitis C's ass. By the time of mid-treatment, a month and a half after starting Harvoni, there was no sign of HCV in my blood. My post-treatment lab tests gave the same result. My gastroenterologist says he has been amazed at how well his patients have done under this treatment. It's kind of a miracle.

That being said, I keep expecting to see a lawyer's spokesperson on late-night TV asking whether I took this drug and then listing all the "adverse events" (nice euphemism there) that crop up long after the treatment ends. THAT being said, I'm hopeful those effects don't show up for 20 or 30 years, just as HCV hides in one's system that long, seemingly without symptoms.

Of course, I'm an optimist, and I'm hoping taking Harvoni was safe and my cure will be permanent without such "adverse events" appearing some day.

So . . . how has being cured of Hepatitis C changed my day-to-day health?

The most phenomenal result of treatment thus far is how clear the world became once that nasty little virus had been vanquished. I can remember driving on the interstate and looking at the beautiful Appalachian mountains that drew me here and the sky behind them and thinking, "Wow. Everything is crystal clear," almost as if the world had been washed and buffed and polished and was shining again.

"My" mountains and the interstate--though not on
the clearest of days, unlike the clarity inside my
brain, now cured of Hepatitis C!
Photo by my pal Lisa Sheirer

Brain fog is a common symptom experienced by those living with Hep C. (Here's more on the symptom from HepatitisC.net--https://hepatitisc.net/living/hepatitis-c-symptoms-brain-fog/.)

After some thirty years with HCV, the virus had so clouded my brain, both in my visual perception--I was truly in a fog--and in my thinking that I sometimes thought I might have early-onset Alzheimer's. I now know that wasn't and isn't the case. Not only is my visual perception clear again but I am mentally clear as well (with the occasional senior moment nearly everyone my age--58-- experiences).

And I must say that this new clarity is a pretty awesome thing.

I have no doubt that all patients who have been cured of Hep C and its accompanying brain fog experience the same joy when clear sight and thought are restored. I know, as a person whose mental life has always been rich--if muddled and confused for the past few years--this change has given me new hope for my future. Both my livelihood and leisure time involve mental processes such as reading, writing, researching, and daydreaming (or, rather, thinking up new ideas for work projects and for writing stories and essays). The cure has returned to me a long-lost ability to focus that is so important to what I do and how I "see" myself.

I do still have foggy days, but they are few and far between--and that improvement alone is invaluable to me.

As Gary Zukov says, "The characteristics of an authentically empowered personality are humbleness, clarity, forgiveness, and love." It's difficult to have the other three--or much else--when you don't have clarity. Throughout those years when my cognition was hazy and cost me two jobs I loved, I felt neither authentic nor empowered. I felt as if I were a shell of my former self. I'm beginning to feel whole again. Authentic. Empowered. And, damn, that's nice.

I'm trying to keep my posts shorter, so I'll continue this report next time. In the meantime, here's to seeing and thinking clearly!

Episode 60 : Laporascopic Hysterecomy After-Pain and Poor Patient Education

Those of you who know me know that I (unfortunately) spend most of my time on The Mary Dell Show discussing my various chronic illnesses (neurogenerative disease, liver disease, heart disease, ad nauseum). Today, however, I want to discuss a slightly more acute situation--surgery.

Last Thursday I had a laporascopic hysterectomy during which my uterus was yanked out through my vagina.

"Laporascopic" surgery is a less invasive surgery than the old cut-'em-up hysterectomies. My doctor explained that I'd have two small incisions in my abdomen through which the ovaries would be removed, and the rest of the kit and caboodle would be, as I said, yanked out from below.

"Do you have any questions?" Dr. V asked.

I didn't have any questions. I'm a medical librarian, and in my hubris I thought, "I've got this."

I'd already done the de rigeur quick overview on the procedure on one of my trusted sites for overall medical information written for the patient (listed at the end of this article). I'd heard a lot about laporascopic surgery while working at a non-profit health education agency over the years, and I never heard much or anything about post-surgical pain.

Here, now, is a real-life example of how reading or hearing about something does not necessarily prepare one for an experience like this.

I'd figured with the minimal cutting involved, this hysterectomy wouldn't be nuthin'.

I was wrong.

Don't get me wrong; I've no doubt this new, less invasive surgery is light years better than the old way.

But it ain't nuthin'.

Neither the doctor nor several nurses I saw told me about a couple of possible issues that might follow the surgery. On Day Two, my shoulder started to hurt like a muv, as my brother used to say when we were kids. Later that day, my rib cage was so tender it hurt to breathe. The pain was worse on my right side, and I wasn't sure whether it might also concern my liver, since I do have chronic liver disease.

Okay, then, back to the Web--a quick and dirty Google search: "laporascopic hysterectomy rib pain."

Bam.

Common side effect of abdominal laporascopic surgery, I'd learn. What the doctor didn't mention, and I hadn't picked up on in my reading, is that the body is pumped full of carbon dioxide (CO2) after the patient is put under. This gives the surgeon more room to get to the target organs without nicking anything else in the process, since the CO2 blows up the abdomen something like a balloon and spreads the innards apart.

Apparently, some post-surgical procedures are done to suck as much of the CO2 out of you as possible, but they don't get it all. And it sits there in your abdomen and starts making your body hurt in fairly predictable ways.

I actually did track down patient information from one clinic that mentions the potential for chest, shoulder, and abdominal pain after a laporascopic hysterectomy.

I wonder why, in my case, neither the doctor nor the nurses mentioned this possibility. What if I hadn't felt comfortable doing a quick Google search to find out why it was happening? Couldn't that pain and difficulty breathing been frightening for someone with heart disease? I mean, I have heart disease (cardiomyopathy), but mine is very mild. Still, it's disconcerting when one can't breathe.

Perhaps the health care professionals, in all their wisdom, don't want to put ideas in a patient's head, thinking that if they don't know it's a possibility they won't feel it. Well, that's bogus. I didn't know, and I definitely felt it.

It just amazes me at this point in health care that something so frequent that it's nearly to expected is not mentioned in the patient education done before a routine but serious surgical procedure.

Other than that, I can't really complain about the care I got, though I hesitated to go to the hospital in the small Appalachian city near my home. A friend had recently had a botched surgery to fix a hernia there, and other patient stories abound about the place's quality, or lack thereof.

In the end, though, I opted to stay local. In my next episode, I will discuss the factors leading up to that decision when you're Down the Rabbit Hole in today's health care system.

By the way, it's now Day Six after the surgery. The shoulder pain lasted only one day; the under-ribs pain ended after Day Four; and now I just have a sort of ache or cramp in my lower abdomen. The pain pills take care of that, but I don't feel like dancing a jig, I can tell you that.

I'm still amazed there isn't more patient education on the pain to expect after a laporascopic hysterectomy. This pain is acknowledged in the medical litereature (for doctors), but I haven't found anything about it in the patient education materials online.

Yet the fact that it's real can be attested to by the numerous patient forums in which this problem is discussed. This is just one more example about how the patient comes last in today's health care. Patients are left to find this information out from other patients--not necessarily the most informed source.

With all the talk about patient-centered care, this should NOT be the case, but that's the problem right there: it's all talk; "patient-centered care" means little to nothing in the actual delivery and reception of health care except in the individuals who inherently bring this orientation to their delivery of care. Many times, these individuals are nurses, but some doctors also show this trait. What's clear is that it isn't something the entire system focuses on to any real degree.

But you'd think they'd come up with complete patient care information for something as routine as a laporascopic hysterectomy.

Episode 2: Polycythemia on my Mind

So you'd think having lots of red blood cells would be a good thing--extra virility, right?  Kind of like Viagra for the blood?

Apparently not.  A few months ago my hematocrit--i.e., red blood cell count--began creeping up.  Yet one more symptom in my fifteen-year battle with chronic disease.  I won't go into all the particulars now, but future shows will certainly discuss primary aldosteronism, an adrenal disorder, and hepatitis C, the kind Naomi Judd had when she quit her singing career in the belief she was dying.  Yes, I'm blessed with both of these as well.

But today it's polycythemia on my mind, and blood tests happening out there right now in blood lab world, as mine had to be sent away because they're so specialized.  (I live in the sticks.)  I'll learn the results on August 24.  In the meantime, I can't help but search for answers on the Internet, considering I am a medical librarian, among my other job hats. 

Episode 1: Anxiety and Me

One of my favorite books as a child was Robert Louis Stevenson's A Child's Garden of Verses, and one of my favorite poems in the book was "My Shadow."

He hasn’t got a notion of how children ought to play,
And can only make a fool of me in every sort of way.	10
He stays so close beside me, he’s a coward you can see;
I’d think shame to stick to nursie as that shadow sticks to me!

Okay, well, maybe the verse doesn't translate well in a blog.  Robert was quite the spoiled little brat, wasn't he?  But he was wonderful.  Of course, I've known about my shadow for as long as I can remember, including in a Jungian sense, but it amazes me that I have only at this relatively advanced age recognized that a certain shadowy coward called anxiety has made a fool of me in every sort of way, staying close beside me, throughout my life.