Another week, big improvements!

We've come quite a way in the last week. Last Thursday, we spent the entire day at the doctor's office looking for mysterious infections to explain the pain and discomfort Caren couldn't seem to shake; this Thursday, Caren had dinner cooking when I got home from work! Considering that last week walking to the bathroom was still a death-defying event, cooking a meal is our equivalent of walking on the moon!

After all the running around last week to get the CD-Rom with Caren's CT Scan in the hands of her surgeon, he still didn't get it until Monday afternoon. I'm so glad I paid the extra for overnight shipping! We had our suspicions that we were not dealing with an abcess, mainly because by Sunday she had been on the Levaquin for 5 days and was feeling considerably better, but it was still good to have the surgeon offer his assessment of the scan.

Most of his concern regarding the presence of an abcess disappeared when he read the Radiologist's report which stated that: "...the small and large bowel appear normal." It was apparent fro mthe get-go that this guy had no clue what he was looking at! I'm really not sure which part was worse, the fact that he thought the small intestine attached to the rectum was "normal" or the fact that he "saw" a 4.5 foot long organ that didn't exist. If a highly trained, experienced medical professional can see a phantom colon, I'll stop wondering immediately how sightings of Big Foot and the Loch Ness Monster continue to occur! Further proof that reality is based primarily on perception (not fact) and people see what they want to see.

Caren still can't lift the kids, but in many ways, life is returning to normal. We'll probably have at least one more week of help during the day; maybe next week she'll give it go on her own.

The only outstanding medical issue we can't seem to resolve is her clotting factor. It's been a month now and we still can't get her coumadin dose therapeutic. Her surgeon has been altering her dose every Tuesday and Friday since she left the hospital with limited success. I honestly don't think we've had two consecutive sets of lab values even close to each other. Now, with her surgeon on vacation out of the country for 2 weeks (oh, I know, great timing right?), her primary care physician has agreed to follow her INR. Not that he isn't capable of reading the lab values and making up a dose for her coumadin, which, by-the-way, is anything but scientific. As far as I can tell, it's completely made up on the fly. However, a PCP is just not used to contacting patients at home in a timely manner, or maybe it's just our particular primary doc. Which brings me to my last thought for the day.

Our primary care physician has a nurse that works for him as his primary assistant. On one hand, I've never gotten any "warm fuzzies" from her, on the other hand, she's never been outright rude to me either. My best guess is that she's one of the brilliant clinicians that got into medicine without the benefit of actually liking people. It may sound preposterous, but there are plenty of medical providers that manage patient's without the slightest degree of empathy. Who knows what motivates them, but I can assure you it's not the ceaseless plight to make people feel better! So this nurse clearly falls into this category, maybe she's the President of CWC, Care without Caring! (Note: I do not have any knowledge of this group actually existing, although if it did, there would be no shortage of charter members)

Caren had her blood drawn yesterday morning and was waiting all day for the doctor to call with the result and subsequent dose for her evening coumadin. All of her lab work is entered "STAT", meaning the results are available later the same day rather than a month later. She waited until after 4pm, knowing that the office would close at 5pm and the entire staff, docs and all would disappear until Monday. When she called, she had the pleasure of playing 20-questions with the CWC President, before having to say, "There's no need to be RUDE!" After that, Caren got her dose and the conversation ended rather quickly. It just confuses the hell out of me that someone would go through all the training, pass all the exams and choose to work in a people-oriented, service industry without even the slightest inclination to be polite on the phone with a patient. Maybe she should move to the OR where the patients are unconscious!

Are you kidding me?

In an eternal effort to eradicate every possible dull moment from life, Caren spiked a fever on Tuesday evening. In all honesty, her health has slowly declined since seeing the surgeon last Friday. At first we thought is was just the harrowing trip to Mt. Sinai that had wiped her out.

After nearly 8 hours of traveling for the follow-up appointment, she spent almost 48 hours recovering. Saturday and most of Sunday last weekend was a complete wash. In retrospect, we now know that it was an infection getting a handhold and carefully deciding where to set up shop. She continued to feel run down through Tuesday when it really hit the fan.

There I am proctoring my summer class' final exam and up pops an innocent IM from Caren: "I have a 101.5 fever." Here's where my initial dismay over the fact that we have signs of an infection turned to near rage as I find out that the symptoms of her urinary tract infection never actually went away! Oh yeah, I can see you sitting out there, rocking back in your chair saying, "what does he mean, the symptoms never went away?" Well, let me tell you that I was as surprised to get that tid bit of information as you are! Caren, staying true to the stereotype that medical professionals make TERRIBLE patients, decided that the whole, lack of urinary output, pelvic discomfort and painful urinations, WASN'T THAT BIG A DEAL!

Ok, I'm past it, just needed to get that out of my system...thank you all for receiving my rant, I'm better now. Oh, wait a minute, I knew there was something else that fired me up about the whole situation...I had to threaten to call the surgeon my self before she agreed that informing him of her symptoms would not be considered annoying. She didn't want to pester him! Somehow, I thought that, maybe, just possibly, he might be interested to hear that a post-surgical patient, who happens to have a single kidney, was experiencing signs and symptoms of a urinary tract infection, including a fever higher than 101! On a side note, I've recently learned that 101 is some magic number in medicine. A fever less than 101 to a doctor is kind of like a solid "C" student to a teacher, their there, but certainly nothing to write home about, but I digress.

The bottom line is that I was right! (There I said it) Caren called the surgeon and within the hour was on Levaquin. We hoped that that would be the end of it, but oh how wrong we were. Yesterday afternoon, after 2 doses Levaquin and absolutely no improvement, I convinced her to email him and see if she should see her primary care physician up here. He called a short time later and gave the OK.

Fortunately, we were able to get a 9:30 appointment this morning; fortunately because of what was potentially discovered and for how friggin long it took! At 9:30ish, Caren was peeing in a cup at the lab, figuring that a UTI would be proven, beyond a shadow of a doubt, the Levaquin would do it's job, and soon we would be back on the road to recovery. After leaving her deposit in the lab, we reported to the third floor of what can only be described as a colossal medical associates building. I should remind everyone that Caren hasn't seen her primary care doctor in a while, so we knew we were going to have to catch him up on the latest developments. If only I could have gotten a picture of his face! It went something like this:

"So I had a colectomy last month and instead of spending 5 days in the hospital, I was there for 11. And while I was there, I had a massive urinary tract infection, that they put me on IV Zosyn for. Oh yeah, did I mention that they found a clot in my hepatic portal vein?"

I was watching his face at this point in the interview and his eyebrow nearly jumped off his face!

"And when they did the initial surgery they saw a polyp on my gallbladder and they took that out too." I think he actually shuddered, as in he had a momentary loss of voluntary muscle control. But, being a true professional, he recovered well and, without missing a beat, turned to me and asked, "How have you been?"

He was good, he took it all in stride. It helped that I've known him since I was a teenager and he is well aware of our medical backgrounds. He reminded us that coming into the situation at this stage means that he has to rule out EVERYTHING! And so the testing began. We went back to the lab for urine cultures, blood cultures, a CBC, I think they even stuck a swab in her belly button to be safe. I was afraid they were going to attempt to swab me, but my "Don't Fuck with Me" tattoo must have been visible through my flowing locks of golden hair (hey, a guy can dream right?), so they left me alone.

In addition to having every surface of her being, both inside and out, combed for a microbial presence, he wanted to have a CAT scan done to rule out anything in the abdomen. So, after spending two hours drinking two humongous bottles of "Creamy Vanilla Smoothie" barium, that, incase you were wondering, tasted NOTHING like cream, vanilla or smoothie, Caren got her scan.

About 45 minutes later, we're in an exam room 2 floors up and I hear him say something about abcess and my head started spinning. I remember thinking, can this get any worse? The Radiologist saw what he thought could be an abcess in her mid-pelvic region; the exact area where she continues to have pressure and pain. I wanted to thank him personally for being as vague as was humanly possible, but it was probably safer for everyone that I steered clear. Our primary care physician told us that we needed to see a surgeon, but we could choose whether to see a local doctor or go back to our original surgeon. We were actually able to get her surgeon on the phone from the office and let him know about the findings.

Clearly he wasn't happy to hear the words "abcess" and "mid-pelvic area" spoken together regarding one of his recent surgical patients. He did mention that Radiologists often have difficulties reading scans of J-Pouch patients, and it wouldn't surprise him at all if the "abcess" turned out to be part of Caren's newly re-arranged internal parts. He was cautiously optimistic when he instructed us to overnight the CD-ROM with the CAT Scan results to him. He wanted to see the scan personally before he jumped to any conclusions. So we wait. Caren was researching what they'll do if it is an abcess, but had to stop when she read about drainage tubes in places not meant for drainage tubes.

He'll have the disc by noon tomorrow and we should know more by later in the day. When we know more, you'll now more. Sorry for the lengthy post, there was a lot to report and the kids are at my parents house tonight. When given a topic and the time, I write. I'll update everyone tomorrow.

Catching Up

It's been about a week since I posted anything. Not surprisingly, it was my first week back to work. I had actually forgotten just how busy real life is! Fortunately, Caren's mom was able to get some time of of work to spend the week wrangling the kids and keeping tabs on our patient.

The week brought minimal, but certainly not imperceptible, improvements for Caren. She spent more time up and around than she did lounging in bed, that's for sure. She's still a little slow on her feet; to get an idea of her gait, try to imagine someone doubled over with gas cramps trying to walk across a bed of hot coals. She's kinda crooked, but up on her toes, with a bit of a waddle. I only dare offer that image because I know, beyond a shadow of a doubt, that if she was to read it soon, I can out run her with one leg tied behind my back...and I have a very comfortable couch!

Her diet has continued to diversify. We haven't gotten too adventurous, but she did eat some salad yesterday. This was the first green, leafy meal in a decade. For the most part, we focus on simple, tasty meals that are easy to wrap up and re-heat. Her appetite ranges from a few bites of pasta to a whole cheeseburger and sweet potato fries (Ok, I realize there is nothing simple about that meal, but it was special request. Who am I to deny a woman a cheeseburger and fries?).

Her INR (clotting factor) has continued to be about as stable as Mel Gibson's long-term job prospects. We're working with the surgeon to find a dose of the Coumadin that gets her therapeutic without turning her blood into cool-aid. But, after our follow-up appointment with him yesterday, he seems to think she's well on her way to full recovery. His actual words were, "You look great!" Patience and perseverance will get us to that all important moment when we actually feel like it was all worth it.

I'll post some more on the follow up appointment next. I captured the highlights of the time with the surgeon in that single sentence above. Unfortunately, the trip was anything but uneventful.