Showing posts with label medical journal articles. Show all posts
Showing posts with label medical journal articles. Show all posts

Wednesday, October 01, 2008

Carmella's Medical Miracle-Part Two Completed!

Carmella has now had the NDV injected into the Foramen Magnum (the area at the back of the neck just below the skull). Everything went according to plan and she has not had any adverse reactions.

This morning Dr. Muller came into the room after we had spoken with the nurse assigned to her about the medical miracle, and you could tell that he was excited about the prospect of doing something that few vets have tried in the course of their entire career.

Often veterinary medicine in private practice can become rather mundane and routine. There are only so may rabies shots, spayings and neuterings, routine check-ups and common injuries you can take care of before it all just runs together, and so this day was filled with wonder and possibility.

Dr. Muller was beaming from ear to ear as if he'd known us for a long time, greeted me, and shook my hand. Carmella went right up to him and jumped up with her front paws on his white coat, sensing that he was one of those few who really "got" her and the value of her life. The nervousness she'd shown in the taxi on the way over seemed to melt away and was replaced by the current state of hope and anticipation that filled the air. At first he seemed a little unnerved by her exuberant and unabashed entrance into his personal space but soon he forgot all that and reached over and petted her. Carmella has a way of doing that without even trying. Her spirit shines through with the intensity of a thousand suns to transcend the confines of species.

"So she is having myoclonic jerking in the right front leg?"

"Yes, and some now in the left back leg too" I replied.

The vet opened the box containing the NDV and looked over its contents. I told him that the bottle contained B1 rather than LaSota strain and relayed what Dr. Sears had said last night indicating that the different strain should pose no problem and it should work just fine.

"Hmm. Dr. Norwood told me verbally that the company sent him LaSota strain."

"Yes, I thought it was until I looked at the print magnified. It really had me worried there for awhile, but I'm glad it's not going to mess things up."

"True; it shouldn't be a problem. I read your blog and you've done quite a good job of documenting all this and put alot of time and research into it. I think all these doctors are just afraid of trying something so new and there is a risk of death anytime you go into the spinal area, but I believe in this instance the benefit is worth the risk because these dogs invariably will progress to disability and die if it's not done. Then there is the issue of all the supportive care and the cost of that, and the special needs for the rest of the dog's life."

"Exactly."

"And the point is well-taken that there's alot more Distemper out there that's not being addressed simply by prevention." Dr. Muller held up the bottle of dillutant and commented on the intense blue color. "This looks pretty nasty. I wonder what's in here? Probably food dye, but I just wonder if that could cause a reaction?"

"Yes, I wondered that myself and was a little shocked when I saw it too."

"I hate to put this into the CNS." He paused holding it up to the light and pondering. "I bet I could just use saline solution instead and that would be kinder."

"That makes sense to me."

"Yes, that seems like it would work well instead of this blue stuff." His ability to think outside the box and trouble-shoot was something that had been missing in the other vets I'd spoken with over the past nonth or so. Where others backed away he was instead thinking of ways to solve those particular weaknesses in the equation. This was just the kind of ingenuity needed.

He asked whether there were any instructions included as to how to mix the two and I said that it didn't appear so. He noted that some of the print on the bottle seemed to be in French. Then he went about calculating out loud the proprtions of saline that would be needed and how best to mix it with the NDV, returning the scary-looking blue stuff to the box. Then he looked over the instructions he got from Dr. Sears and I handed him my copy that I'd printed out. There appeared to be a few discrepancies; possibly one was written later than the other or there were two variations which could be followed interchangeably.

"If there's anything you aren't sure about be sure to call Dr. Sears before you get started just to make sure. He's very nice and says he's willing to give as much back-up as you need. He's retired so he's most likely home most of the time."

"OK."

"He did tell you that you shouldn't expect results immediately..."

"Yes."

"Really we're looking at 4-6 months before we're going to see restoration of the myelin."

"Yes, we talked about that last night."

"I think it will go well. We have ultrasound here so I can see where the needle is and make extra sure it's in the right place."

"Oh, good. That makes me feel alot better. As long as you're skilled enough not to hit the spinal cord then I think it will be smooth sailing."

"The needle just needs to go in about this far" he showed with his fingers "and as long as you don't go in at an angle then you're alright." He seemed to be replaying it in his mind as a trial run, something which many athletes, musicians, and other talented people do to prepare for major challenges ahead, and a very useful brainstorming technique.

Then he and the nurse took Carmella to another room and he told me that he'd come out to the waitingroom to let me know how it went.

I must have read just about every magazine in there. I think it was around 10:00 or 10:30 when I saw him open the door leading to the back part of the clinic.

"Mom?" he said. He was smiling, so I knew the news was good. I jumped up as he motioned me in. "She did really well. No problems, no shock." I followed him down a hallway to the left and into a little room where the same nurse was who had spoken to me earlier. They were just getting Carmella up off the table and she seemed to scramble up with a start, somewhat disoriented. They put her down on a blanket on the floor and her IV came out in her struggling to right herself. The nurse asked if she should put another one in and he told her that it probably wasn't necessary and if she needed more fluids they could always do it again later.

Dr. Muller showed me the vial of cerebrospinal fluid he had withdrawn for the antibody and strain tests. It was milky and somewhat thick, about the consistancy of shampoo. He remarked that he had no trouble getting it and I asked about Carmella's shaved neck where there was a small dot on the left side at the top. That was where he had stuck the needle and he explained that they figure a triangle in order to mark the area to go into. Her bare neck made her look much like a Hare Krishna.

I sat down with her on the floor and she started to crawl into my lap and whine. He'd given her some morphine and it was beginning to wear off. He did not want to give her any anti-inflammatories because the process by which the Newcastle Disease virus vaccine works requires an immune response so that the cytokines in Carmella's brain and spinal area can locate and then kill the Distemper virus. The immune system is thereby put on high alert, turning up a few notches in order to create the power necessary to eradicate it completely.

The NDV in effect acts as an irritant to the dog's immune system in much the same way that sand acts in an oyster except that rather than encasing the virus the way an oyster forms a pearl around a grain of sand it just bombards it. This immune storm takes place within a 24-48 hour period after the injection is given into the spinal canal.

Certain events during that period such as seizures can happen until things calm down again and the virus is gone, so they are keeping her overnight for observation. They have an ICU much like hospitals have for humans. The nurse assigned to Carmella showed me where they would keep her. There were about two rows of cages one on top of the other, and Carmella was placed in one on the upper deck. Across from there was an area with desks and there must have been 15 staff in that room all looking at charts, documenting, monitoring, and taking care of the dogs. I was glad to know that there were people there in that room 24 hours a day in case of any unforseen emergencies.

At the end Dr. Muller told me that he'd leave instructions for the vet on-call for tomorrow and that he or I could call him at home if we needed to. The nurse wrote her name and the other vet's name on our paperwork and explained that if I didn't hear from them by 10:00 tomorrow morning to call and have one of them paged so I could find out how she did overnight. Since the cost of the cab over there was huge I asked if it would be alright if I picked Carmella up later in the afternoon if I could get somebody I knew to bring me after she got off work, and she said that would be no problem.

I looked in on Carmella one more time before heading home and reached in between the bars and petted her muzzle with my finger right near her whiskers and she gave me a wide-eyed look as if to say, "You're going to leave me here?" I told her I was coming back to get her tomorrow. I instantly was tempted to change my mind and take her home then, but figured I better not in case she had an emergency in the middle of the night and I had no way to get her to an emergency vet fast enough. I walked out hoping that maybe she would get some sleep and that it would soon be tomorrow and she'd be over the worst of it.

Her hospitalization required that I pay half the bill in advance which was about $200. I put that on my CareCredit.

The house feels empty without Carmella here and I hoped that people were not bored logging on to watch the Carmella-cam without Carmella. The kitchen seemed overly still and vacant with dog toys and cushions strewn around on the floor.

I was beginning to get very drowsy and develop a headache from lack of sleep and the rest of my body had begun to ache also. If I didn't have an autoimmune disease myself I would have thought it was sympathetic pain to what Carmella was feeling. I at a late lunch, put an ice pack on my head, and went to lie down. Finally the pain subsided and I did get some sleep.

I called Dr. Norwood's office to give them the good news, and sent an e-mail to Dr. Sears. I also asked where he got the Distemper strain tests done, as Dr. Muller had said that Antech labs only does the antibody test. He'd mentioned to me in the office that we might have to send it off to a University vet school and I told him that was alright with me. If Carmella's information could help other dogs then it was worth it.

Before Dr. Muller said goodbye he asked if he could keep the remaining part of the bottle of NDV because he has another dog he'd also like to treat with it that is just beginning to develop neuro symptoms.

I really hope he and Dr. Norwood do collaborate on a paper about Carmella's recovery. Somebody has to be the first to get this cure into the medical journals, no matter how small a story. It will be nice if this happens in Dr. Sears' lifetime. He deserves to see this put on the map while he can enjoy the accomplishment, and if no more dogs and their owners are left out of luck because there is something written up, then all this work will have been worth it. Carmella is a testament to its effectiveness, and that is a beautiful thing.

Wednesday, September 17, 2008

Carmella Still Waits for Medical Procedure


Today was down, then up, and then down again. I decided to try Dr. Brantly in one last attempt to appeal to his sense of social responsability, but it turned out he had little, relaying through his receptionist that he would never feel comfortable injecting Newcastle vaccine into the spinal canal (apparently even if not doing so was going to end up killing her). He'd come closest of any of the ones I'd asked, but it seemed as though his initial mindset only got increasingly closed as he ruminated about all the "what ifs". The trouble is he had no alternatives to offer, so who was he to be dead set against this method if it was her only hope. I suspect, knowing this, he offered up a lead at the University of Florida Veterinary clinic, saying maybe they'd attempt it. I made the long-distance call and gave a run-down of Carmella's situation to a woman in the small animal clinic who in turn took down mine and Dr. Sears information and said she'd have a vet call me back by around 5:00 PM. In fact it didn't take near that long. There was a bubbly woman on the other end who sounded hopeful, so I assumed it was good news. Wrong again. She reported to me that all the vets in the neuro department "don't do that", and that "they know nothing about it" stating as others had that it was "still experimental". Well, duh! Of course they'd never heard about it and of course it's "experimental" because nobody has given it a chance to be published. That's why I gave them Dr. Sears' contact information, so that they could find out about it, but did they even call or e-mail him before dismissing this treatment out of hand? No. Well, sorry, but that just doesn't pass with me. Nobody can spreak intelligently against doing something if they won't take the time to investigate it first. That just means that they want to remain ignorant. They sure didn't get their degree in veterinary medicine by having the knowledge pop into their heads by osmosis! They had to put some effort into learning the material. They'd have been kicked out for sure if they came into their professor on the day of an exam and whined, "I don't know anything about this so I'm not doing the exam." They'd have been told pretty fast to get their ass into the library and start reading, and start doing the homework and going to class, or get out; that they don't give honorary degrees in vet school. That kind of obstinate clinging to ignorance is something I cannot tolerate. When I was in college we were expected to back up our argument if we were going to disagree with something, and that's how it should be. In order to really do that one must have some leg to stand on based in logic.

Absence of data or lack of precedence does not immediately render any hypothesis invalid, and it justifies the furthering of study, not the abandonment of it.

I asked the woman on the other end of the line just how we could make this not experimental, and she was not particularly forthcoming, but finally said that they have a seperate research department and that I could speak to them. OK, now we may be getting somewhere, I thought. She did not know the number but had the operator transfer my call. Instead it was picked up by the live answering service who had just come on shift and they did not know the number to connect me to, so I'll have to see if I can find contact information on the website or call tomorrow.

We are pretty much back to square one.

I wrote Dr. Sears and let him know that this turned out another dead end, said we needed him to do conferences, and for some vet, any vet, to publish something.

If Dr. Norwood could at least publish Carmella's experience with NDV in the body that would at least provide one citation that could help legitimize the second half as I am approaching vets. You'd think the way vets are reacting that I was asking them to commit criminal acts, not an act of heroism.

In fact, it is indeed criminal to fail to act in a life-threatening circumstance. A disease is in effect a "natural disaster", but when there is something that can be done to intervene but those who are able do not, that is the true definition of negligence. Does this fact escape those who can but do nothing? Does this not bother their conscience at all?

Maybe they think Carmella is just one dog and they think it's OK to let her languish, turning their attention to those they can easily save by risking nothing, that in the grand scheme of things her life is just not that important to go out on a limb for, but the fact remains that they are aware of the gravity of the situation and they know that this will not go away and that more white matter in her brain is being sacrificed each day they look the other way, and that this dog and this owner have feelings. Would it be OK with them if doctors sat there and let this happen to their wife or child? I don't think so. Maybe they believe that being that attached to a dog is silly and overly sentimental, but if we start picking and choosing whose life is worthy and whose isn't then who is to prevent that kind of calousness from coming home to roost when the grim reaper decides to knock on our door?

These guys keep thinking worst case scenario, but what if this not only had no adverse effects, but was a glowing success, just as it was in the body? What if Carmella went on to live happily ever after once the procedure was completed? Not all "what ifs" have to be negative.

We as a society and as a species must base our lives upon possibility, not be ruled by trepidation. Fear is only useful in the short-term, but it can keep us stuck if it becomes a way by which we live our lives from cradle to grave.

I believe that The Creator did not give us a brain and the technologiy to use it in order for us to choose to ignore that which has been provided. Medical discoveries are a beautiful thing and we should embrace them, not stay trapped in a free-floating fear of progress based on what we don't know. Knowledge is power and with power comes inevitably, responsability. Maybe that is the real crux of the matter; responsability. If we remain ignorant we can always fall back on that ignorance to avoid responsability, but that is to live like Peter Pan refusing to grow up and meet the world head-on, hiding in illusions and creating walls to hide behind.

To believe that the outcome of going outside our comfort zone is always going to be bad is to have a very negative world view. Sometimes trying new things can really add something valuable to our lives. You know what they say, "Nothing ventured, nothing gained." If the answer does not live within the lines then if we want it we must be willing to go outside them to get it.

After a long dry spell I made a sale! (I am getting it ready at the crack of dawn), my Click Beetle bracelet with a really cool Chevron bead in it.


Carmella was restless again today. I let her outside several times in the back yard to run around. When her legs work she is very graceful, like a jackrabbit darting through the thicket, and at times I can almost forget that she is still living with a monster inside her Central Nervous System, one which will ultimately bring her to her knees if it is not stopped in time. For just a short time I am lost in the moment as she glides like a raptor across the landscape, and then she falls, and I realize where I am.

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