DPCA nationals

the talk of the town is Dr. Meurs, who has announced (And presented at nationals) that she has discovered one of the genes that cause DCM - her test is commercially available and we can now begin the long process of weeding out one of the known genes of DCM.

It's sent the dobe world into a tailspin (as all things do- this community is nothing if not a little reactive, maybe like our dogs, HA!) - do it, don't do it - tell, don't tell - who to breed, what to breed, breed at all -

it brings up good questions, hard questions, easy questions, and just more and more questions.

I'm hopeful with the test - the presentation (which can be seen here:
http://www.ustream.tv/user/DPCA/videos

was really rational and level headed - she did not advocate eliminating any dog that has the gene, but instead using breeding practices to gradually, over the next few generations, eliminate the gene by breeding practices.


she also heavily cautions that this is almost definitely not the only gene, and there is unknown influences that cause the incomplete penetrance.


of course the next thrill was dr. estrada presenting the stem cell info (also at the archived video site) - did a very nice job of explaining what rah went through!!!!!


so much hope in the midst of so much stress.

i just had a clients dobe puppy diagnosed with juvenile DCM at 3 months old. this poor family and this poor dog - she's from kimbertal and is very sweet, but this is heartbreaking.

sadness

the second dog to have stem cell implantation died yesterday - he had gone into congestive heart failure a few weeks ago and he was released yesterday in the arms of his family at the U of Fl.

there's so many feelings about this - not just feeling sad that he's gone, and so terribly bad for the owners because i know what this feels like, but so much nervousness. nervous that does the stem cell treatment do nothing? is rah not going to be helped?

we don't know how much or how long they have, ever. we dont know how long rah would have without it, or how much time dog#2 had without it - we can't say. its so much unknown, and i know and accept that to some degree.

but it makes me sick and sad for all the right reasons, and some very selfish ones - because i want so very badly for this to be some miracle. for everyone, but the ultimate in selfishness is that i want it to be MY miracle. rah's.

the news is GOOOOOOOOOOOOOD.

rah's holter results are in- brandon called me today and i almost died because he did call right as i was about to step into surgery- i thought immediately something was wrong, he's NEVER called before, almost always emails!!! but the phone call was GOOD! we're down to only 89 vpc's!!!! he had 2 bigeminal beats, no trigeminy, everything else was gravy!! 6 months ago this dog had 5000 vpc's in a 24 hour period and now he's at this - and unbelievably it's still going down (this is 10 less than last time - only 10 less, but it's still less and i believe he did have one trigeminal beat)

so we're off the hook for three more months... and his heart is stable. it's almost good. better at least. he ate a plate of brownies tonight and had to have vomiting induced, it's never a dull moment...

i feel sick

it makes me physically ill to hear of another doberman i "knew" dying of cardio. this dog was rah's age, diagnosed 5 months before him with questionable values and his recheck one month after rah's diagnosis showed definite changes. he was medicated, and today the owners found him in the yard, dead.

it makes me ill for so many reasons, but some of them are so very selfish. im sad that anyone has to lose a dog to this disease.

but part of me constantly compares - is this dog worse than rah? better than rah? how long are they getting? what drugs are they on? is the dog doing well? and try to make some sense of everything to figure out just how long i'll have.

this dog was definitely not worse than rah. his holter 10 months ago had 14 VPCs and 4 months ago he had 26 VPCs. single, lone VPCs.

rah had 5000.
down to 1000, and now down to 100. but a dog just dropped dead (that had significally better holter parameters) of a fatal arrythmia.

sometimes im just so scared, so terrified.

its just not fair.

RIP kheper. it's never long enough.

oh the fun never ends

so rah survived a tooth pulling, he survived stem cells -

WILL HE SURVIVE DAILY LIFE?

rah aspirated water last weekend with a near drowning secondary to black doberman bitch on top of him while "swimming"... in other words, between him biting constantly at the water and berlin jumping on him, he breathed in a lot. he ended up with mild pulmonary edema secondary to inflammation from the water disrupting his lovely surfactant in the lungs and mild aspiration pneumonia. (we wont talk about what the cat did that same night... im going to ask for new animals!!!)

and of course today he runs around my fathers backyard and tries to get in the water (but doesn't really succeed thank god, since he cant get OUT of the pool) but he rips his pads up.

BAD DOG. bad bad dog.

ok, worse owner. rah is officially going to live in a bubble.

bad bad me!

it's been awhile - i think at the last update we were waiting for rah's holter results -

well the holter results were GREAT - he had 93 VPC's during that 24 hour period, which is a significant drop from the prior holters - they were on a downward trend, but this was the lowest yet!! he started at 5000 in february, dropped to about 1000, then near 500... so under 100 is great!!! of course, no definite claims for stem cells since he's also on medication, but im going to sit here and think it was both of them :)

bad news came when rah fractured a tooth at the very end of may - and about 2 weeks ago, it started to abscess. i'd been watching it and agonizing over it for the weeks in between, but once i saw pus it was time to do something. i scrambled all over the place, trying to locate a facility that had both a boarded dentist as well as a cardiologist on staff and rah ended up at upenn having his tooth pulled - and he's done marvelously! they were great with him there, very open to my input (thankfully since im such an anal retentive owner, but come on my dog is a scientific marvel!) and he handled anesthesia just fine, no bleeding (since he's vWD affected too)...

so here we are, recovering - he's allowed to start retrieving tomorrow again post-sx and he wants his life back to normal - he says where are the toys?!?!?!?!?

waiting on the holter...

well, rah had his first recheck last thursday - i know im late reporting... but... it was GOOD!

rah's echo showed improvements in ALL areas - his heart shrunk!!! all the values were better than his original diagnostic echo in february, and he was on the table for over an hour to get all the views they needed- and he didn't throw a single VPC!!!!!!!!!!!!!!!! that's HUGE.

his holter was mailed out to florida a few days ago and hopefully i will have the results in the next week or so - and we can go from there. but i am incredibly hopeful - the cardiologist warned me that the improvement isn't expected to be seen in the first month, but more over the long term - but this is GOOD change in the first month and i hope it continues over the next rechecks.

on a bad note, i may have a problem again sourcing one of his meds as its off the market and now the compounding pharmacy is having problems getting materials. so i bought 5 bottles of it to tide me over and animerge has a bottle on the shelves that i am having lydia hold onto as an emergency.

but im hopeful - this is the first time i think ive felt hopeful about this in a long time.

first recheck!!!!!!!!

Today is Rah's first recheck with the cardiologist after the stem cell implantation - we hit a few snafu's because the holter monitor that was shipped last week (that i had hoped to have done already and ready to ship back) hasn't actually arrived yet - problematic only because it has the disk that we need to transfer the results of todays echo on to mail back with the holter. hopefully GSVS has a disk we can transfer results to...

and maybe its a blessing in disguise because it's been unbearably hot these past two days - in the 80s and 90s - while i want to stress rah during the holter and get a true test - i really dont want him to have to wear the neoprene vest during that time frame because he's having virtual heat strokes as is just running around in the yard (he's always been heat intolerant - well, he doesn't temper himself and then realizes its too hot and humid to be stupid and then he takes 20000 hours to recover in the house - has done this since he was a puppy!) ... so maybe its for the best that he didnt get holtered. hopefully the weather will break just a bit (pray for temps in the 70s??) so we can holter him next week.

rah has his one month recheck next thursday with gsvs... his holter is in the mail from florida for me to put on when it gets here.

of course, the most wonderful (insert sarcasm here) part is that he fractured a tooth sometime this week. i am so not thrilled with this. so very not thrilled and i really dont know what to do about this.

the paranoia sets in

rah is acting just a slight bit off. did a few things odd for him... and im getting worried. nothing says CARDIO...

but this am when i went into the basement to do laundry, he didnt follow me down. now, he usually comes - did he not come because its the morning and hes SUPER LAZY In the morning? is it because he's feeling out of sorts because he has no playmate since berlin is on crate rest and he has no one to wrestle with?

last night at training it took me telling him like 12 times to get a drink of water before he would, and he was all freaked by his crate??? and it looked like he wouldnt put his head down - but later on he went right over to drink his water no problem. he trained just like normal, no issues. no signs of pain. no lethargy. wanted his cookies no problem.

and im convinced that his breath is different. this absolutely could be because for the past month he's eaten NOTHING but kibble for the first time in his life - he's got gas, he poops more, and his teeth are dirty, so its not inconceivable that his breath would smell right? its everything i can do to not stop at the clinic before i leave today to run bw on him before i go to the conference to make sure hes not in liver or kidney failure though.

see, this is the part i hate. the staring at your dog like something could go wrong at any moment. waiting for the other fucking shoe to drop.

12 days post-SC

its been 12 days since rah received stem cells - and i think its clear they gave him the cells of a very very very bad dog!!!!

he's doing fine - great, even. he's evil. he's light chasing up a storm, he's chewing up pillows (and lydia's blanket), he's being a butthead.

he has experienced absolutely no negative side effects from the stem cell treatment/procedure that i can see whatsoever, not even any clipperburn from where they shaved him

(and his student made sure they only shaved him a very little bit!)

his new medication schedule is a killer - he's on mexiletine every 8 hours, so that really screws with being away from him for any extended period of time. my life now revolves around making sure my cardio dog has meds every 8 hours - bye bye social life (did i have one before hand?) - compounded by the fact that there are OTHER meds being given as well...

8 am - sotalol, mexiletine

1 pm - atopica

4 pm - mexiletine

8 pm - sotalol, benazepril

midnight - mexiletine

yeah, it's great. the biggest stretch i get is the 8 hours that we are generally sleeping and doing morning things... but he's worth it!!!!!!

so, for now - im hopeful. he's doing well. for the moment, i feel that this dark cloud is slightly further away - it's still hanging around, but for now im going to pretend it's not there.

homecoming!!!

just got the call to go pick up the blueberry!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

done done done!!!

i got the call at 1:15 that he was done and out of surgery, waking up and everything went well. i pretty much started to cry right then and there in the middle of panera (down the road from the vet school, where i was camped out with lydia).

he only threw one VPC during the procedure and had some "rah" things to deal with (leave it to rah to be abnormal!) - he had some weird anatomy and a brief episode of a-fib but all in all, they consider it a success! he was awake and doing well and i will get another call tonight to report on how he's doing.

so, i hope to pick him up tomorrow, but he's doing well right now and i can breath at least a little bit... i miss my little (big) boy a lot!!!!!
__________________

Rah is waking up from the procedure !!!!!!

sitting in panera... waiting...

dropped him off at 8 am this morning. the vet student on his case is amazing, she's very sweet. she has corgis, i will have to send her something special - this has to be her last rotation and she will be a great vet, she cuddles rah up and she handled him well, including around other dogs that reacted towards him :)

he had his pre-op check yesterday and shocked the shit out of all of us - TOTALLY NORMAL yesterday. echo was NORMAL. no vpc's on the ecg or during the echo - for almost an hour my dog was VPC FREE???? the dog whose holter 2 weeks ago was worse than ever now had an hour of his life that he didn't throw a single arrhythmia???

the cardiologist (who is fucking adorably cute by the way, of course im down here sweating my ass off and my hair is frizzing in the 10000% humidity ) actually considered that i may have brought him the wrong dog? and that we never had the right diagnosis to start with - pulled out his old records and confirmed that 1) this was the dog with DCM and 2) he did have it ...

he gave me the option of whether or not i could do the study. i was afraid he was going to say rah COULDNT have the procedure because of the results... but he said it was up to me. lydia says she thinks if i was local they would have said no - but because i drove down from NJ they werent going to turn me away. but knowing he was looking better than ever (and knowing its just a snapshot, but its a frame of mind!) calmed me a bit...

so i dropped him off this morning at 8. definitely cried. they saw him yesterday in all his light chasing glory. he smells like fish from swimming in carol's pond. we gave them all his annoying deedle dude toys that sing when he chomps them and she said he could have them once he recovers. everyone in the hospital loves him and the receptionists and other students were already calling him when i walked him back in there today because he's very recognizable (besides the fact that he's the stinky dog) - when they walk him down the hallway (ok when he pulls them, since no one could figure out his heel command and he doesn't respond to heel!!!) he goes up to everyone and stands next to them until they pet him, then moves on.

i got the call at 11 am that he was being wheeled into fluoroscopy to start the implantation - first they are sedating him mildly and putting the implating catheter/port in, awake. then they knock him out and test the location of the catheter (coronary sinus), blow up the balloon and cut off blood flow for 10 minutes or so while they agitate the endothelium with saline and then inject the stem cells. he should be getting that right now.

they have an emergency/critical care doctor (that was actually a resident that i went to vet school with!) in there as well as a boarded anesthesiologist the entire time. he will recover and go into the ICU overnight, the entire time being on telemetry (an ECG unit that will display his heart rate/rhythm onto a display in the center of the ICU so the techs/drs can visually see it at all times) and hopefully come home tomorrow. he's on leash walks and no horseplay until he gets home friday.

im waiting for the call that he's awake. because he's affected they have to hold off for 30+ minutes once the jugular implant/port is removed. im nauseous. people keep calling about other things and i wish they would stop because i think its the vet school!

the person im staying with down here has the property from heaven. 19 fenced in acres, including some for her horse (that rah is terrified of, by the way). a pond (now muddy). the entire fence is fully dog safe, so the dogs can be entirely free. she left all the trees on her property so its all natural. she has a full agility ring set up with all contact equipment. the dogs hike all day long run wherever they want in the woods. rah's actual love is that her water bowl outside is a running bird bath with a fountain in it - he spends hours in front of that fountain playing with the water, they fill it 10-15 times a day because of him.

still waiting... .

Dropped rah off at the vet school this mornin for the procedure. Feel so nervous and stressed. They should be stArting in two hours or so

preprocedure update

im here in florida


everything is going great - rah and berlin (and bunny) are in heaven here - having TOO MUCH FUN - our hostess carol is very gracious and berlin has taken a hankering to her husband!!!! the property is amazing and the dogs may want to stay in FL even though its hotter than hell here and humid to boot.

the dogs have been running around on fenced in acreage, swimming in ponds, hiking trails and being dogs.

im exhausted. rah had his preop visit today at the vet school - when they brought him back they said, IS THIS THE RIGHT DOG? they said "we have to talk about the echo" ... so i sat down and they said his echo was perfectly normal today!! and he didn't throw any VPC's at the visit... but we have documented evidence that he's got DCM, he's just in a very stable place right now, today.

they gave me the option of doing the study or not. i was afraid he was going to tell me rah wasn't ALLOWED to do the study!! i opted to keep him in the program and rah will go to the vet school bright and early tomorrow morning as planned for his stem cells - he will spend the night and be released wednesday afternoon.

im feeling much more secure about the entire procedure - both because he appears to be more stable than i had thought he was (though i know this is just a glimpse) and because the doctors there are just so amazing and i feel that the protocols behind the implantation are sound (and i know the ECC doctor that will be in the operating room as well!)

im still nervous, but im in a better place. its been so lovely having the past day or so with him running around and so happy - today he fetched balls with the chuckit, hiked and ran with the girls, did some agility, chased bugs and spent probably 2 hours playing in carol's water fountain.

i know the stable echo today doesnt mean he will absolutely be fine tomorrow. but its an improvement over where he was - and he's throwing less VPC's. its some improvement. somewhere. im trying not to be too hopeful.

the amount of crap my dogs need to travel to florida is ridiculous. i havent even started packing for ME and im at three bags already for the dogs...

medical bag for the dogs.
toys for the dogs. collars. bowls. medications. leashes. change of collars. YES THEY NEED CHANGES OF COLLARS. clothes for the dogs (cool coats, since its florida and hot).

heaven help me if i can even FIT my crap in the car.

havent heard from florida. im nervous. nervous nervous nervous.

rahs latest holter results showed that his heart is actually worse. he spent about a quarter of the day in bigeminy - every other beat was an arrhythmia. this obviously wasnt good.

it was all i could do to hold it together on the phone - i got off the phone and broke down. the day was hard enough with people saying goodbye to him and me trying to stay brave, and today is rah's 4 year "got day" - i adopted him 4 years ago today. this process, this disease, is such an emotional rollercoaster - and to hear the cardiologist say the words "go for the stem cells, because this is now or never - the disease is advancing" just made me want to vomit.

this is my dog, this is my heart and soul. i would trade anything in the world - my job, my car, my career, every ribbon, every title, every future show - to have him survive this disease and die at 12 years old from old age.

i'm confused about where to go from here and i contacted florida and im waiting to hear from them - we are supposed to leave in 48 hours and i havent changed his meds so i hope everything is still on from here. because of my schedule i cannot just change things and reschedule so easily.

this has me tied up in knots. im so excited, in a small part of me, and im trying not to let myself be hopeful. but part of me is so very scared.

for his got day, i bought rah one of his favorite fuzzy mice. rah also got three deedle dudes from lydia - THE most annoying toys that she hates and she will only let him have IN florida :) he played in the yard for three hours and got to play in the pool and he's passed out on the couch. ill take him to class in an hour so he can do some dumbbell retrieves, he had ice cream cake yesterday and will have banana cake tonight.

the anxiety sets in.

we leave for florida on saturday - so in 4 days. i am still waiting for the holter results from the cardiologist - im going to call tomorrow if i havent heard from him.

im starting to get really nervous. thursday is rah's 4 year "got day" - that will be four years since i brought him home.

im full of such anxiety that im making the wrong decision for him - that im going to take him there and this will be the last thing i do for him. so much of this is left over anxiety from what happened with bowie, i know. but i can't help it.

im full of such hope, but at the same time im full of so much fear that this will go horribly wrong. im full of these horrible terrible thoughts that im going to say goodbye to my dog next tuesday morning and that it will be the last time i see him. and that thought makes me want to email the vet school and just tell them to cancel the entire procedure.

but what other choice do i have?

the angry part

one of the hardest parts of this diagnosis for me is that i have a lot of anger in regards to this entire thing.

im angry for so many reasons.

im angry i have to go through this again. first it was bowie. living through almost three full years of the disease in occult (maybe longer, i just caught him when we started screening), almost making his deal of making it through vet school with me, and then dying 2 days after surgery. then losing mya to heart disease a few months later. and now i have another dog with heart disease.


and im angry that other people never seem to get dogs, or dobes, with heart disease, and i have another one.

im angry that he's so young - for some reason it would be easier, or at least more appropriate, if he were 9, 10 or 11 and had DCM - it would be easier to accept his eventual demise (because lets face it, this will kill him) from this god awful disease then, rather than at the younger age it's going to take him.

im angry that i do the screening, i do the right things for this dog. he gets no vaccines. he gets exercise. he's thin. he eats raw. he gets the best there is of anything and everything. and yet my dog, even caught early, has the worst damned "occult" cardio you can have? his "occult" cardio is the type where you need to be worried about him dropping dead suddenly - doesn't feel so occult to me.

im angry i even need to worry about him dropping dead.

and yes, im angry that people actually say to me, do you worry about that? YES I WORRY ABOUT THAT!

im angry that other people have healthy dogs. and i dont.

im angry that other people have dogs with occult dcm that isn't as bad as rah's. isn't that terrible?

im angry that rah may never get to accomplish all the things that we wanted to accomplish with him - not because he doesn't have the potential and the desire, the will and the ability - but because we probably simply won't have the TIME. TIME is the limiting factor.

easter sunday was 4 years ago that i lost bowie.
Bowie's Modern Love, RN CGC

links

similar info to my last post:

http://www.dpca.org/PublicEd/PEC/PECGeneticCardio.html

http://www.veterinarypartner.com/Content.plx?P=A&A=2496

http://www.vin.com/proceedings/Proceedings.plx?CID=WSAVA2002&PID=2530

dilated cardiomyopathy

before we go any further, there's going to need to be a "what is DCM" kind of post so that all the future phrases, abbreviations, and things i talk about will make sense. sort of a 'whats what'. its your decoder ring!

DCM, or dilated cardiomyopathy is where the bottom half of the heart essentially loses its ability to pump because it stretches out - it simply can't contract enough any longer. for a bit, the heart starts to compensate by stretching out so that the body still gets enough blood - but eventually it just can't handle that - and eventually heart failure will develop, in which fluid backs up in the lungs.

in the *doberman*, this is a genetic disease - it's predicted that 50-70% (depending on what you read and who you talk to) of all dobermans will get this disease. in other breeds, this isn't necessarily a genetic problem - its just an acquired disease of old age. it can also be caused by some drugs/toxins (chemotherapy drugs for instance) or nutritional deficiencies. but nope, dobes get the dumb luck of just being PRONE.

the other aspect of this disease in the doberman is arrhythmias - faulty abnormal heart rhythms. these occur in DCM in the form of VPCs - ventricular premature contractions, where premature heart contractions start from the bottom half of the heart (rather than from the normal location - the sinoatrial node)and BEFORE a normal heart beat would start and , due to abnormal contractility of the heart.

which is why for this breed, screening is SO IMPORTANT - screening an asymptomatic dog, screening before you notice coughing, before you notice weight loss, lethargy, not wanting to eat - because for those dogs, it may be too late. we've come a long way with treatment, but for many dogs with DCM, this WILL be a fatal disease.

screening for this includes both an ultrasound of the heart - called an echocardiogram, as well as a 24 hour ECG (electrocardiogram) - which is called a Holter monitor. the echocardiogram enables the cardiologist to visualize the heart and see the size of the ventricles, and the 24 hour ECG enables them to actually see the rhythm of the heart over the course of the day and see if there are any arrhythmias - you can see how different the info can be. a dog can absolutely have dilation without VPCs, or VPC's without dilation and still have DCM with both!

there are a variety of treatments available - i won't pretend to know which is best because the course of treatment should be determined by your cardiologist.

there is no prevention for DCM - there are studies currently underway at a variety of vet schools and other institutions trying to find a genetic marker for the disease. all we have is testing and telling.

and here we have rah in his holter vest!

an intro

this is being started as a diary of living with a dog with dcm. rah is my second doberman with DCM, and my third dog with heart disease. the diagnosis came as a complete surprise - he was screened clear last year (last february) at 3.5 years old, and this february i screened him at GSVS in tinton falls with dr. goodwin where on his echo, we saw that he had some dilation but worse, he was throwing frequent premature ventricular contractions.

we did a holter on him that day, and the results showed that he had almost 5000 VPC's in a 24 hour period - he was started on sotalol and benazepril immediately. a recheck holter showed a decrease to just about 1000 VPC's, but dr. goodwin feels we can do better so he's added in mexiletine (aka the hardest drug on earth to get - we're having it compounded).

in an effort to help rah (and yes, i will do anything to help this dog), rah has been enrolled in a study at university of florida that will implant stem cells into his left ventricle in an effort to reverse the dilated cardiomyopathy. it's been shown to help in other versions of the disease, and in other species. his date of treatment is tuesday, may 4th.

rah doesn't know he's sick - he didn't ever really act it, though since starting medication he is certainly more active (and more annoying) than ever (so maybe he was).

this blog will be a journey - the ups and downs (hopefully more ups) as i mirror his training blog. ill go through the background of the disease, the emotions i went through immediately past his diagnosis, and for those following the journey you will get to see what happens with stem cells as well.

this is living with dcm.