SUNDAY UPDATE: Again, Miss Phoebe Gets Well

I knew I named this blog properly! If there's one thing our Miss Phoebe does consistently throughout her life, it's survive, get well and thrive. It's been a busy 4 days but I wanted to update everyone who reads the blog.



That's a photo of Phoebe, begging for more food, just an hour ago. Clearly, feeling herself, again!

Phoebe came home last Wednesday night and she was super unstable. Essentially, dogs with Idiopathic Vestibular Disease (IVD) have to completely re-learn their senses of balance and proprioception without the use of their inner ear. This takes quite a bit of time. Dr. Mlekoday told us to expect this to really show improvement in 72 hours with a more complete resolution over the next 2 to 3 weeks, and that's exactly what's happening.

As I said, on the night we brought Phoebe home (the night this happened) she was very unstable. Sitting propped up on her front two legs was really challenging for her. If she ever tried to shake or twist herself to scratch or lick herself, over she would fall. But the next morning, her balance had already really improved. Michael stayed home with her that day and he even noted by midday how much better she was doing. By the time I came home from work, she was walking around and appeared to be much more steady. However, that evening (day 2) she became very tired and as she tired, her balance gave way to more falling. She was still having crazy nystagmus.

But with day 3 and 4, she tired less and less and her nystagmus calmed down. Her appetite has been very strong throughout this whole episode. Last night she actually tried to chase Charlie around the living room and this morning, she jumped up onto the couch! Getting down is still pretty dangerous for her, so we're helping her with stairs and up/down jumping. Still, knowing her, she'll be back to normal jumps/landings and stairs in the next week. She's just amazing.

I'm posting a link to a short video in 3 parts: Phoebe's Recovery from IVD The first part is her the night she came home from the hospital. She had just finished eating her dinner and was trying to shake and lick herself. In the middle part of the video, you can see her on day 2; the nystagmus was still very active. But the last part, on day 4, was taken today, just a few hours ago. She can pee and poop without assistance for balance. She can run around the yard and do what she wants. It's been a hard 4 1/2 days for her-- for us all-- but she's surviving and getting better each minute.

Again, to everyone who has asked after her, emailed, called, text-messaged, it's been an amazing display of support and we appreciate each and every one of you!

xo

Mid-day Update

Phoebe seems to be stable, according to Dr. M.

She had some breakfast, but needed help eating. She's still super wobbly, but she's not panting anymore and she' not trying to stand up. Her labs were 100% normal. So was her X-ray.

It's too soon to tell but, for now, Dr. M is leaning towards believing that this is Idiopathic Vestibular Disease, and NOT a brain tumor or a stroke. This is the best news we could have hoped for!

Phoebe is being monitored constantly and they're checking for signs of deterioration because, usually with a tumor or a cerebrovascular incident (like a stroke) we see pretty rapid changes in the vitals and lab values. So far, none of that is present.

They're going to monitor her for the next few hours and, as of now, the plan is for us to take her home and confine her to a small space where she can be contained and safe from hurting herself. It's going to take some serious nursing to get her back on her feet, walking and such, but Dr. M thinks that a few days at home should be enough.

If we notice that she's not improving or if we feel that she's getting worse, then we'll bring her back into the city to see a Neurologist who can do an MRI.

But for now, this is the best news we could have ever hoped for.

Thank you ALL for your messages, texts, emails, comments on Facebook-- knowing that we have such a great support network rooting for us and for Phoebe makes all of the difference.

Phoebe is not well

When I went into the dog's bedroom this morning, I found Charlie up and pacing around. I thought it was simply that he had to pee really badly. I went to pick up Phoebe out of her bed as I always do (because she can't go down the stairs, so we carry her). As soon as I lifted her up, she lost her balance and wobbled over onto her left side. She couldn't straighten her head out. At first, as I was carrying her down the stairs, I thought that this was a vaso-vagal response; Like what happens to us older folks when we suddenly stand up, the blood pressure to our heads doesn't keep up and we get light-headed. I thought, "I moved too fast for her" but she'd normalize in a few seconds. But as we came downstairs and I put her on the floor in the kitchen she couldn't stand up. Try as I might to help her right herself, she kept falling over. Finally, beginning to panic (because this is looking like a stroke) Michael said, "take her off the slippery wooden floor and bring her outside." So we ran out the back door, put her on the grass, and while she peed, she could barely keep from falling over. Michael had to hold her up.

I was completely freaked out. This is neurologic.

We rushed the boys into the house, grabbed our packed bags and jumped into the car. We took the drive to Manhattan to her internist, Dr. Mlekoday, who manages her Cushing's Disease and 45 minutes later, we were in the office. They rushed her back, took her vitals and did a physical exam.

Dr. Mlekoday came in to talk to us. Here is the differential diagnosis as of 8:45 AM:

This might be Idiopathic Vestibular Disease; a fairly common condition in older dogs wherein, suddenly and for no apparent reason, they have an inner-ear phenomenon that causes them to suddenly loose balance, have nystagmus (eyes rocking left to right) and tracking of the head and neck to one side. Essentially, the world is spinning for them and they can't keep balance. If this is the case, they will monitor her today, give her fluids, keep checking her heart rate, pulse ox, and respiratory rate to see if there's a change. Ultimately, she should start to be able to stand, then eventually to walk (against a wall for support) and lastly, after a number of days the head-tilting will resolve and this whole episode will be a thing of the past which, interestingly, never seems to repeat itself.

However, given her advanced Cushing's disease, her history of inexplicable weight loss over the past year (and even more this morning) it's not looking good. Phoebe has had every test and we cannot figure out why she's losing weight. The fact that her Nystagmus is NOT left-to-right, but wobbly in a figure of eight pattern, points to something more severe. It could be infectious, though her blood tests have been normal. It could be the pituitary tumor (the Adenoma in her brain which causes the Cushing's) having grown to a size where it's now pushing on stuff, causing these symtoms. It also could a stroke.

I asked about doing an MRI. Right now, given her severe neurologic presentation, they think it's very dangerous to sedate her (which needs to be done for an MRI) and, frankly, we won't gain much information that would affect treatment from an MRI. I asked Dr. Mlekoday what she would do. She asked me, "Would you consider doing brain surgery on her?" I said I would not. She's too old, she's been through too much and that would be a cruel thing to put her through at the end of her life. She thought that was the medically sound and compassionate choice.

So, for now, we wait. They're doing X-rays, labs and physicals every 2 hrs, and watching her constantly.

More updates to follow...

Happy 13th Birthday, Miss Phoebe

Today, May 10th, 2011, is Phoebe's 13th Birthday.

Well, actually, it's not. As she was a shelter rescue, we don't know her actual date of birth, so we celebrate her adoption day as her birthday. 12 years ago today, I went to the CACC in East Harlem and adopted an abandoned, abused and left-for-dead Chihuahua Mix named "Fee-Bee" and she was "just under 1 yr old." We kept her name (but changed the spelling) and brought her home to her new life with me and my first dog, Blackie. It was a rough start-- she had no rules. No discipline. No house-training. And she was AGGRESSIVE! After a few weeks, I broke down. I actually contemplated surrendering her to a no-kill shelter because Blackie and I couldn't handle how awful and disruptive to our lives she was. But something clicked in me-- I couldn't do it. She picked me. I was hers. I needed to see this relationship out.

Two years later, she was turning 3 and things were just starting to get good with her. She was behaving well, integrated into our family and then, out of nowhere, Phoebe got very sick. Deathly so. An inexplicable flare up of IMHA (Immune-mediated Hemolytic Anemia) landed her in the hospital for 2 weeks. Three separate Myoglobin transfusions and a lot of ICU-care saved her life. We started Chemo and then kept her on steroids for a year to suppress any flare ups. It cost me more money than I actually had at the time, and landed me in some serious credit card debt. Lots of people told me that I was nuts for spending this much effort and money on "just a dog". And, a sick dog, at that. But it worked and, thankfully, Phoebe hasn't had a flare-up since. That "investment" has paid me dividends for nearly a third of my life now in kisses, fun, and a wonderfully firecely-loving best-friend.

When I took Phoebe home from the hospital, I was cautioned to adjust my expectations about her longer-term survival. They told me that (at that time) IMHA in small-breed dogs typically flares up again, and again and is often fatal. At that time, she was 2 years old. I was cautioned that there was a 50% chance she wouldn't live 2 years to her 5th birthday and that she had a greater than 85% chance of not surviving 4 years; essentially, past her 7th year. But, today, Phoebe is 13 years old.

The steroids Phoebe took to control her IMHA put her at risk for problems later in life. Just before she turned 9 years old, Phoebe was found to have acute-onset Cushing's Disease. This was, almost certainly, due to the prolonged steroid use. At that time, we made a choice to go with an "experimental" therapy-- Trilostane (you can read more about it in a previous blog post. At that time we were warned (once again) that average survival for a dog her age with Cushing's Disease was 2 years. Well, it's now 4 1/2 years since her diagnosis. She is now over half a year on her vegan diet and her lab values are better than they ever have been. Once more, Phoebe is beating the odds and not just surviving, but she's living with grace, joy and love.

There are so many lessons that Phoebe has taught me over the past 12 years, it's daunting and impossible for me to try an list them all. I will say this though; her life is a daily reminder to me that:

* Statistics are about groups of individuals, but are not necessarily pertinant to an individual.

* There is always hope, so never give up. You never know when a stray carrot will fall from the counter.

* Life is too short to hold on to grievances. Run, play, chase your tail (or your brothers' tails) and make the most of today.

* Just because it's freezing outside, doesn't mean you can't dance in the sunshine.

* Never miss an oppotunity to snuggle up with the people you love and take a nap.

As George Elliot has infamously said, "It's never too late to be what you might have been." In Phoebe's case, she's living out what she "might have been". She is now a happy, healthy dog who lives to a ripe old age, surrounded by love and the people (human and non-human) who she loves.

Ouch! It's my back!!!

Phoebe was really acting sickly last weekend... terrible panting, respirations up to 35-40 breaths/minute. Very scary stuff. We had no idea what was wrong. I called the emergency/on-call vet and she talked me through it and explained that this was panting and NOT respiratiory failure. She had us come in the next morning and we did. She said that Phoebe was probably just rough-housing too much with a young puppy and hurt her back. She gave her Metacam (an NSAID) and within 24 hours the panting was gone and Phoebe was back to 100% normal.

Big scare.

They did blood work which was Normal. In this video, you can hear the vet's voice mail to us about Phoebe's blood work. I spoke with Dr. Mlekoday the next day and she confirmed that this was probably a lab glitch (because the sample was more than slightly hemolyzed). Still, to be 100% sure, we're repeating blood work in 2 weeks.

Medical Update

It's been nearly 2 1/2 years since Phoebe was diagnosed and started treatment for her Cushing's Disease. Though there have been necessary dose adjustments with the Trilostane that she's been taking, he numbers have never been better.

We've been spending most of our time and focus, over the past year, on Phoebe's older brother, Chandler. Chandler was diagnosed this past March with Malignant Melanoma. In no time, it spread throughout his body. Despite our aggressive and best medical efforts, Chandler passes away from his fight with cancer last month on June 11, 2009.

We did a blog for Chandler: http://chandlersuch.blogspot.com/ We did this for us, for our friends (to have a place to check during the day for updates, without having to come to us to repeat the same info over, and over, and over...) but moreover, we did it so that someday, some other doggie-Mommy or Daddy will be searching for info and will see what we did/didn't do with Chandler. Hopefully, it will give them a sense of comfort, guidance and a sense of not being so alone in this scary process.

Given the lack of information about Canine Cushing's Disease (which is not repetative) I decided to rededicate myself to this blog after over 2 years since starting it. Hopefully, I can add more information to the wealth of reliable info on the web and help someone else.

Phoebe's Story

My dog, Phoebe, is going to turn 10 years old next month. It has not always been a certain thing that she would. When I adopted her at only 10 months of age from a kill-shelter here in New York City, Phoebe was badly abused and left for dead. After months and months of living in a loving home and supportive environment, she became less combatitive and aggressive, and her true, warm and loving nature came out.

Suddenly, with no warning signs, Phoebe’s life was in danger. At only a few months past her 3rd birthday, Phoebe came down with an acute “attack” of Immune-Mediated Hemolytic Anemia (IMHA). After three weeks in the hospital, she was out of imminent danger. Phoebe stayed on oral chemotherapy and steroids for over a year. Even so, the prognosis for her age and breed was only 85% mortality within 4 years.

It is now 7 years later. This past February, when going in for pre-dental blood work (for anesthesia clearance) we noticed her liver enzymes were way off. We’ve always known that one of the longer-term side effects of prolonged steroid use could be developing of Diabetes or Cushing’s disease. After further testing, it was confirmed for us on February 17th of this year, that Phoebe had full-blown Cushing’s Disease.

Historically Mitotane has been the treatment of choice for PDH. Mitotane causes selective necrosis of the zona fasiculata and the zona reticularis of the adrenal cortex. An induction period and a maintenance protocol are required with the use of mitotane and there is a relatively high incidence of side effects. This is not a good option for a dog like Phoebe with a history of IMHA. Mitotane could very easily over-treat her and throw her into Addison’s Disease or worse- a relapse of IMHA which, with her (now) Cushing’s Disease, would almost certainly be fatal.

Trilostane is a new drug to the US market. It works in a completely different way. It is a competitive inhibitor of the enzyme 3-beta hydroxysteroid dehydrogenase. It works at the level of the adrenal gland to block the normal steroidogenisis pathway of pregnenolone to progesterone to cortisol, aldosterone, and androstenedione.

The use of Trilostane for the treatment of PDH has been studied and reported on in the last five years. The results of these studies have been uniformly very positive. Clinical results include a reduction in clinical signs such as polydypsia, polyuria, polyphagia, panting, increased activity level, improved coat quality and skin condition. Treatment with Trilostane results in reduction of both cortisol and aldosterone; although the reduction in cortisol was more marked than the reduction in aldosterone.

Phoebe is alive today because of Trilostane. While available by prescription for many years in the U.K. under the brand name "Vetoryl", Trilostane is not available in the U.S. (pending FDA approval).

We buy Phoebe her Trilostane from a compounding pharmacy. They are responsible, efficient, and they are one of the only such institutions that will provide Phoebe with this life-saving and life-sustaining medication. Without it, her liver would shut down, and she would die (either from the progression of Cushing’s Disease or, more likely, from a relapse of IMHA).

I bring a unique perspective to this issue, as I am not just the pet-owner of a dog whose life depends on compounded medication. I am also a board qualified surgeon who takes care of hundreds of human patients each year. I rely on the FDA to regulate the pharmaceuticals industry to make sure that when I prescribe my human patients a medication, I can rest assured that they are getting exactly what I prescribe.

In my opinion, The FDA is right to investigate and regulate compounding pharmacies to make sure that medications are not being bought and sold without a doctor’s prescription (like some of the internet “pharmacies”.) However, to deny Phoebe and the countless other human and animal patients access to life-saving medications simply because they are manufactured in compounding pharmacies is simply immoral. Sadly, it seems that the FDA’s motivation is not that they’re acting in the interests of the general public’s safety. Rather, it seems this recent push to ban compounding pharmacies is primarily driven by the greedy motivations of the private pharmaceutical companies, like Wyeth. It is in their financial best-interests to restrict access to medications from compounding pharmacies. It is also clear that it is in the best interests of patients (human and animal) like Phoebe who depend on these life-saving and life-sustaining medications to keep compounding pharmacies operational and accessible.

There is a saying that you cannot solve complex problems with simple solutions. You can’t end world hunger by feeding a homeless, hungry person. Similarly, if you try to address the issue of disreputable, irresponsible, internet-based compounding pharmacies that sell dangerous and controlled substances to strangers over the internet by categorically banning the entire industry, you run the risk of throwing the proverbial baby out with the bathwater. Patients like Phoebe will pay the price. This is a complex situation that requires a more involved solution. It requires regulation, investigation and approval of credible compounding pharmacies that give life-sustaining medications otherwise unavailable while shutting down the disreputable ones that prey on the public.