Payton’s battle with PDE…after the diagnosis

Christy here. I just want to thank everyone for their kind comments on my previous posts.  Before continuing with the details, I feel a warning and another disclaimer is in order. As you may guess, Payton’s fight has not always been easy, and cramming a bunch of issues from the last 5 years into a page or so of text makes it seem even more intense. But if you think about it, this only makes her survival even more of a miracle. We know there will be a time when it will be in her best interest to say goodbye, but we know without a shadow of a doubt (and Dr. Podell agrees) that now is definitely not that time. Payton isn’t just living, she is thriving! She has such a zeal for life and long stretches of “normal” pug life, so please remember that the moral of this story is hope and overcoming obstacles.

If you haven't read the previous posts this series [diagnosis and medication/treatment], please check them out.  Ok, getting back to Payton’s story…I left off bringing her home after seeing Dr. Podell for the first time. 

It was great having her home. We had hope that we could take on this nasty disease, but as Dr. Podell warned, it was going to take a while for her little body to get used to the drugs. I’d say for about the next 3 months she was very lethargic, sleeping almost all the time. She would grab a toy and want to play, but ended up just taking it to bed realizing that she didn’t have the energy. Then slowly she began to get her spunk back! She wasn’t the high octane puppy any more, she had mellowed and slowed down, but the expressive, loving personality was still there. In fact, I don’t think there’s been a time in the last 5 years that Payton hasn’t shown a drive to fight and live. She is my hero.

Since her diagnosis, she has had only an average of 1 relapse (of varying severity) per year. The first one was the worst. Only about 6 months into treatment, she started the stereotypical PDE circling and then started having cluster seizures (ones that start and stop quickly). After that, things were going so well I thought we’d never have to use that Diazapam (aka valium) stuff again. One of the mildest relapses was a constant twitching of her left back leg. Throughout all of these problems, Dr. Podell has been there for us and adjusted her medications to successfully fend off the disease. In fact, she has such good stretches in-between issues, that it’s easy to forget that she’s sick.

Over time the disease has left lasting scars, some of which we deal with daily. Her left side is gimpy having taken the brunt of the seizures. She is blind and deaf on her left side (although her right side isn’t much better), and her left legs have nerve damage like Walter the Miracle Pug. In fact, thanks to Walter's mom, Heather, we are looking into making our own Pug Ugg. Payton's low/compromised immune system makes her prone to infection and cancer, and she has become a very slow healer. She’s had a handful of bladder infections and one nasty fever ridden sinus infection over the years, and it took a lot longer for an eye scratch/lesion to heal. Our vets always say, it should be nothing, but with Payton, we better check into it further.

She still goes through periods of shedding, but not as often as most pugs, and her hair doesn’t grow back at the same rate so there are long periods where she is fairly bald. As a result of the buildup of the drugs in her system, she developed calcium deposits on her skin that look like scabby blisters. At first, they flared up like wildfire and had to be treated with nasty smelling DMSO (something used at U of I in the horse stables), but fortunately those have kinda gone into remission. Also because of the drugs, she had to have her gall bladder removed. Boy was that scary! Luckily we were already in Chicago for one of her routine, quarterly check-ups. Payton didn’t show any signs until it was about to burst, so we caught it just in time. Told you she was tough! Anesthesia is always a risk with her, so it was not fun waiting for the results of her surgery. At the same time, Payton had a weird mole-like lesion on her side that we had removed and analyzed. Turns out she developed a rare skin cancer.

This pic shows off Payton's bald chest and some of the calcium "scabs" on her belly

Here's what the skin cancer looked like - the red ring only lasted a few days and part of the "mole" fell off before the biopsy.

 Despite all of these issues, for the first 3 years since her diagnosis, we were extremely lucky that Payton did not have seizures in between relapses - which we think is rare. On any given day, she looks and acts much like any other pug. However, about 1 ½ to 2 years ago, she started having single seizures that appear to be triggered by the extreme cold and by going “outside” as we call it. We have since purchased an indoor Porch Potty for use in the garage during cold months and nights. This has helped a great deal, but she still has these “bathroom” seizures once in a while. There is so much of the brain that is a mystery, so Dr. Podell thinks that something about the act of "going" (or even thinking about it) triggers or activates the part of her brain affected by the disease.

Around the same time as the onset of these “bathroom” seizures, Payton had a seizure that affected her right side. This had never happened before. We wondered if the disease had spread to the other side of her brain…was that even possible? A totally unrelated (non-PDE) incident on one of our trips up to Chicago would shed some light. For the first time after all these years of being sick, this was the first time that Payton didn’t want her food and she began to shiver violently in pain. We didn’t know what was wrong, and X-Rays weren’t conclusive. So, Dr. Podell had to perform another MRI. He took the opportunity to take another look at her brain. Turns out Payton developed a bulging disk in her back (the reason she was in pain). Since the surgical fix for a bulging disk was not an option for Payton (surgery itself and the risk of infection are too great), we had to hope it would fix itself. We had to restrict Payton’s activity and she is no longer allowed on the furniture, but it worked! And as for the PDE, well, the MRI showed it had indeed spread to both sides of her brain. But so far, it has not had additional impacts on Payton’s life. In fact, oddly enough, it’s been in these last few years that Payton’s personality and energy has come back more than ever! She wants to play a lot more and is always up for an adventure or another vacation to Chicago.

Whew! I think I covered all the relevant events. Hopefully this has helped you all to get a feel for what Payton’s battle with PDE has been/is like. As warned, I talked about a lot of serious issues, so I want to remind you that Payton has a great quality of life and is happy – despite the disease.

The great news is that all of these relapses and related issues probably add up to only a couple of weeks of “bad” days out of nearly 5 years. Again, she’s as happy, playful, and loving as any pug you’d meet. In fact, you’d be hard-pressed to notice she’s at all sick if you met her (well, aside from the balding spots!). So if you ever find yourself in a similar situation (and we hope that you do not!), don’t give up. With the right treatment, patience, love, and prayer, you could enjoy a much longer, quality life with your baby than you might think.

If you have any questions, please feel free to ask them in the comments section, or contact us privately via email. Although we are here to shed some light on this disease and answer any questions you may have about our experiences, please, please make sure to consult your own vet if you have fears that you or some dog you may know is ill.

I’ll be back with one more post next week. I’d like to continue “keeping it real” and talk about what a dramatic impact this has had on my husband and I. Payton’s PDE diagnosis has changed our lives in so many ways.

Love,
Christy (and Payton)