Calling All Activists...and everyone else, too!

On Friday, December 12th, we received a call from the UC Davis Transplant Clinic. After eighteen years, the Liver Tranplant program is being shut down. The reason depends on who you talk to. One person told me it was funding - the economy. In the Sacramento Bee, the excuse was the drop in transplants over the past year, which has an effect on Medi-Care funding and the surgeon's ability to maintain their skills.

Whatever the reason, dozens of patients are being left out in the cold. Each facility has their own set of standards that must be met by the patients before they will be listed for transplant. Regardless of what stage in the process, all of UCD's patients are being told they need to transfer to one of the three remaining centers in Northern California: UCSF, California Pacific Medical Center (San Francisco) and Stanford (Palo Alto). The closest of the three is 76 miles from Sacramento.

Dennis was due to be listed following his next appointment, on December 21st. Another gentleman, interviewed for KXTV 10 News last Friday, would have been listed the same day. It is very likely that they will have to complete the same scans and tests again before being this close to receiving their livers again, if they can survive that long.

Now, here's where the activism comes in. I would like to ask each and every one of you to help me. I want to let the Director of the UC Davis Liver Transplant Program know that these aren't dollars they're cutting, they're lives. These are men and women (and children) who have lived up to their end of the bargain. They've been poked and prodded and tested and scanned, over and over again, even when they were too sick to get out of bed. And for what? Because the easy money made doing boob jobs and face lifts is more important than people's lives?

Sorry, I know I'm ranting and raving, but I get a little bit emotional about this.

So, how about it? If you can write a letter, fantastic. An e-mail? Perfect. The more people who question this closure, the better.

Here's the info:

UC Davis Transplant Center

Attn: Dr. John McVicar, Liver Transplant Program Director

2315 Stockton Blvd.

Sacramento, CA 95817

e-mail: transplant@ucdavis.edu

Even if you don't know Dennis, there are at least a dozen or more people waiting for listing that may be helped by your efforts.

When It Rains, It Pours

If bad news really does travel in threes, it's time I packed up my family and headed to an undisclosed location.

We were hit with a major blow on Friday. Lab results confirmed that Dennis is still carrying around the infection that landed him back in the hospital last month. What does this mean? Lots of things. First, we're back on the grueling routine of antibiotics - dialysis for five hours every other day, then a trip to UCD for another hour. This will go on for several weeks, most likely, depending on how he responds, but there is always the possibility of (ugh) readmission to the hospital for further procedures to find and eliminate the source of this bug that just won't go away.

Of course, this puts our transplant dreams on hold...again. The next appointment, December 22, still stands, and there's always the possibility that he will still be cleared by that date. Still, we aren't holding our collective breath - no point in setting ourselves up for another disappointment. The hardest task now is to keep his spirits up enough to continue this never-ending battle.

Meanwhile, my mom took a fall earlier this week. After resisting my repeated requests to see a doctor, she finally realized things weren't right yesterday. She's now in the ICU at UCD (here we go again) with several fractured ribs and a blood pressure that's off the charts. It's not that serious, really. The ICU is more of a precaution, something they do primarily because of the age of the patient, and I just learned from her nurse that she'll be transferred to the regular floor later today because she's doing so well. No word yet, of course, if she'll be allowed to go home or to a Skilled Nursing Facility, but we'll cross that bridge when we come to it.

I'm starting to wonder what I'm going to do with the 22 lb. turkey that's resting in my refrigerator right now...

Stirring It Up

The following (in red) is the meaty part of an e-mail I wrote recently, regarding a nurse who missed a dose on one of Dennis's meds and lied about it (!!!). This was written at the request of the Nurse Manager, who brought the issue to our attention, and has since been passed on to the Manager's boss and the nurse in question, too. I'm hoping she loses her job, if not her license. There's no telling how many other patients she's put at risk with her careless approach to her job.

Ms. X ,
Whatever your intentions were in missing and falsely recording my husband's Factor VIII dose on Sept. 28th, I would like you to understand the ramifications of your error.
My husband has been hospitalized for more than half of 2008. On several occasions, I was told that he would not survive. He was transferred out and back in to various ICU units no less than three times due to internal bleeding. Three times. Each time, there was no guarantee the bleeding would stop, he was too weak to withstand surgery, and I sat at his bedside and waited for him to either recover on his own or die. I watched the nurses administer dose after dose of Factor VIII, knowing that without it, there would be no chance of his survival. I'm guessing here, but I'm pretty sure you can't imagine what that feels like, no matter how many times you've seen it in your years of nursing.
Factor VIII is liquid gold. The gallons given to my husband over the past few years have depleted our medical insurance to the point that he is now dependent on public aid for his coverage. I know that the pharmacy doesn't mix it until it's needed, and I know they don't just send it up with the other meds and assume that it will be handled properly. I also know that there is no such thing as a leftover dose in a refrigerator. Further, your statement that you "had a ten minute conversation" with my husband is laughable. My husband has been on the edge of encephalopathy for the past five days and hasn't had a ten minute conversation with anyone, including me. You didn't give it to him, you faked the records, and you lied about it - it's that simple.
When we leave our loved ones after eight or nine hours at their bedsides, we expect them to be in good hands. We believe it when we're told that they'll be watched over and taken care of, that they'll get their prescribed medications when they're supposed to, and that they'll still be there when we come back the next day. We also expect the doctors and other nurses to be able to look at a medical record and know that it contains true, factual data - not just what should be there.
Through your negligence, you've given the wife of a very sick man something more to worry about.

I'm sharing this here for a couple of reasons: First, it lets all of you in on what we've been going through these past few weeks and explains pretty well why I haven't been here! Second, this illustrates the desperate need for quality nurses in our healthcare system. Don't get me wrong, we have had some amazing, wonderful, fantastic nurses over the years! There are those, though, who don't belong there and are clearly just collecting a big, fat, union-protected check. Shame on them, and shame on our system that allows half-ass-ed-ness (is that a word?) in one of the most important professions on the planet. Don't get me started again....

Meanwhile, Dennis is back home again. We have a TON of appointments. In addition to dialysis (which is now starting at the hideous hour of 7:00 a.m.), he has to have anitbiotic infusions at UCD three days a week, along with appointments with three different services within the next two weeks. Again, we're on hold with the transplant indefinitely, but the doctors assure me that the labs are stable and nothing is urgent right now. Phew.

On a totally, completely unrelated subject....is everyone out there registered to vote?

A quick one...

As Thumper's mother always said, "If you can't say something nice, don't say nothin' at all". Heeding Mrs. Rabbit's words, I've taken a few weeks off.

Dennis is back in the hospital for another one of those short-stay adventures that has morphed into something more lengthy. I'll spare you the icky details, except to say that he has an infection the size of a football in his abdomen that has pushed his left kidney back about four inches (it's true, I saw the CT) and could potentially cause way more damage than I'd like to think about if it were to get into his bloodstream. It's self-contained, at the moment, and will hopefully stay that way until the antibiotics (three 0f them) take hold or the surgeons decide to "go in and get it".

If this were me, or any average, healthy person, going in and getting it wouldn't be a huge deal, other than the fact that it's surgery. With Dennis, though, every decision made be a doctor has to be carefully considered, weighed for the possible good & bad scenarios, etc. He's been living on Davis 12 (one of our regular haunts) since Thursday, waiting for the team to make their determination, which will hopefully happen today.

Meanwhile, the juggling act continues. I am a hospital-dweller by day, mom/maid/house painter by night. Finally finished the bathroom that I started the last time Dennis was in the hospital. And if anybody needs about 1/3 of a gallon of Lemon Bliss, let me know.

If you happen to be attending the Elk Grove Great Pumpkin Festival on October 4 & 5, be sure to look for the really big kid in the Cosumnes Fire Dept. uniform. Erick will be "on duty", passing out flyers and generally schmoozing with the locals as a part of his ROP Fire Tech training class.

More news as I can think of it, or make it up, whichever is more interesting. Keep those cards & e-mails coming in!