Waving wildly from Phineas! (Update)

[Sparrow]

Glad for the update, was wondering how you were making out. Thank goodness the storm was less aggressive than they claimed. Good to hear things are the same with Phinman, and no worse. Thinking of you often...

[Angel7292]

Super long cardiac checkup info from yesterday. It's very detailed. I find that if I put all my notes in one place, I can always refer back to them. Bear with me... this is a complex issue. Trust me, it's a lot... I wouldn't blame you for passing over this post. LMAO

Well, I guess I'll pass on the Phineas update. There is some good news, some bad news and some 'just' news. It's a fatal disease, how positive can it be, right? You're not dead yet, so that is the upside to every cardio visit.

I was doing ok yesterday and only cried once at the cardio's office. At 3 AM this morning, the awfulness of it all had me up and just boohoo'ing into his furry neck. It was a rough morning for both of us.

You go to cardio and with his diagnosis, it's never a "Great, things are improving!"... it's a "he is still stable". The cardiologist tempers her responses to your questions and gives you the current status of his heart disease with great caution. She tries not to give you too much hope, but not to also make it seem so doom and gloom too. At least, not yet. It's a monotone type conversation.

So... he is stable today. He will be stable until he is not. That's the cold hard facts. One day he will be well, and then one day he will not. Stable.... that is his current status per the cardiologist. Trust me, I accept that with glee, but as she reminds me, that may change at any time.

See, the problem is, they don't really have a lot of info on the pre-clinical phase of DCM. Pre-clinical meaning, disease is present, but without symptoms. It can last days, weeks, months and even years. It will stay pre-clinical... until it's not. There is a lot of unknowns and every dog is different. Phin has a lot of things against him and with him being an oversized dane, isn't helping that heart of his at all.

Ok.. so nuts and bolts... I don't understand everything but I'll pass on what I do get. I'll start with the good news.

While DCM can affect both ventricles, but it's primarily the left ventricle. The measure it to see if is a normal ventricular size for a dane (less then 6.0 cm) or if it is dilated. Phin's non-DCM echo (baseline in 2013) showed he had a LVIDd measurement of 5.3 (excellent for a dane!). Back in August, he was diagnosed with a LVIDd measurement of 9.0 cms. Yesterday, his LVIDd was 6.85cm. Cardio noted on his report that while his left ventricle dilation was considered significant, it has improved.

Pimobendan, the med Phin takes, is a heart muscle support drug. Cardio says the med is doing exactly what they want it to do. How she figures that, no idea. I'll take it though. Any good news is GOOD!

Other good news is that she considers him stable. The difference between the echo from 4 months ago and yesterday isn't drastic at all. While he HAS had some negative progression (will get to that in a minute), she thinks the two echos were pretty comparable and she thinks he is in similar shape now, to when the last echo was in august.

The disease HAS progressed though. I prayed so hard to hear "no change"... but yeah, that didn't happen. According to cardio, it's not dramatic.. it's just the disease progressing. It is the expected progression. Yes, I do realize it could be much much worse. I just want to halt it right where it is though.

Let's see... He went from having a MILD central mitral regurgitation to a MODERATE central mitral regurgitation. A mitral regurgitation is an abnormal reversal of blood flow from the left ventricle to the left atrium. He now has a trace tricuspid regurgitation. Yep, a new leaking valve.

The crappiest news of it all..... I will try my level best to explain this that makes sense. I don't fully understand it, but will give you the best thing that helped me...

They measure something called LVFS%. It stands for Left Ventricle Fractional Shortening. Seriously? It's crazy trying to understand this shit...

In cardiology, the performance of the ventricles are measured with several volumetric parameters, including fractional shortening. FS is a measure of the heart's muscular contractility. If the diameter fails to shorten by a percentage, the efficiency of the heart in ejecting blood is impaired.

The jist of it is..... it is measuring the efficiency of the hearts ability to pump the blood out. Ok.... normal for a great dane (giant breed) is FS% 28-30. Anything less then FS% 20 is considered serious myocardial disease. The basic 'scale' is 30 for normal in a great dane and 0 .. well, that would be certain death. You don't have to get to 0 to be dead though. A dog can die at FS% 18. There is no magical number. Every dog is different. I'm only telling you this # to help you understand Phin's condition.

Remember, normal is LVFS% 28-30 for a great dane. Phin's baseline echo in 2013.. he was very normal at 28. In August, when he was diagnosed with DCM, his FS% was only 13.8. Yesterday, his LVFS% was down to 10.5.

Cardio said to me when I gasped... "it's only 3%!" Yea.. 3% wouldn't be a big deal if we were talking 3% out of 100! We are talking 3% out of 30! I specifically asked her what LVFS% would put us in dire trouble since he is now only at 10.5. She said there was no specific number. That they don't even look at the numbers until they are treating end stage. That there is so much unknown about the pre-clinical phase of DCM, she has no specific answers and every dog is different. We will know we are in trouble when he develops congested heart failure and we will treat it from the numbers at that point.

The thing that scares me the most was discovered. A dog with DCM is predisposed to having an arrhythmia. It's just an irregular heart beat caused by the electrical pulses in the heart muscle. However, great danes are at a high risk for developing an arrhythmia. It is the cause of sudden death in dogs with DCM. One second they are here, the next they are gone. You can't give CPR and revive a dog from this condition. You would actually need to shock the heart back into proper rhythm. An arrhythmia can develop for many reasons, but a poor functioning heart makes you a great candidate for an arrhythmia. Being a great dane, just makes it worse. In August, one of my sighs of relief was that during his EKG, there was no noted arrhythmia. That didn't mean they weren't happening, but one was not captured at that time. It was yesterday. A single ventricular ectopic premature complex. Just one. As cardio said... if you find one in just a few minutes, there are more. How many more? We can only guess. Phin goes back in a couple weeks and we are going to do a 24 hour holter monitor on him and see what is REALLY happening. It will record every beat of his heart for a 24 hour period and that will give us a clear picture of what is going on. It could be nothing... it could be very bad news. Dunno, but we are going to find out.

If you read this far and are very confused... here is the summary...

... left ventricle dilation shows some improvement
... left ventricles efficiency to pump the blood out has declined.
... central mitral regurg has worsened.
... has a new tricuspid leak.
... a single arrhythmia was detected.

There are other small changes up and down, but nothing to discuss.

We will go back in 4 months and do an entire full cardiac workup again (EKG, echocardiogram / ultrasound and blood pressure check). Obviously, we will go back if he shows any symptoms or trouble. Cardio says we can wait 6 months, but that ain't happening. Four months is my max allowable time to not know what is going on. As of now, the plan is to continue on the Pimobendan and carry on until something happens. Of course, we are going to do the holter monitor and the results might change things. We will just have to see.

Trust me, if you think this is a lot for your brain... you should see my brain. I have spent the last 24 hours comparing every echo he has had, every measurement and every difference and trying to understand exactly what is happening and the 'why'.

This is very tough for me because I have micro managed his health so much his entire life, and I want to do the same with this. Both cardiologist Phin has seen, have mentioned that I can't manage this heart disease like I did with his allergies, or illnesses or spine injury. I can't fix this. I can't help him heal. I can't control it for him. I can't do anything. I feel so helpless and I can't heal him and I struggle with that. I promised him at 10 weeks old, cuddled in my arms, that I would do everything I can to give him the best and longest life possible. His life is slipping through my fingers now... like sand... and I can't stop it.

I... can't.. save .. him. *sigh*

Over the last four months, I've struggled coming to terms with what is happening. It hasn't gotten much easier, but each night I tuck him into bed, I am grateful for another day we had together. We needed that checkup yesterday, but it brought back all those bad feelings and internal panic that I'm losing him. This is just never going to be ok...

If you read all this... my gosh.. you are a trooper! Phin loves each of you for all the kind thoughts, messages and prayers. If he could, he would snuffle each of your ears, and give you many kisses. <3

P.S.... Phinny sent his DNA blood sample to NC State Veterinary Hospital for the Great Dane DCM study. If your dane fits within the parameters, PLEASE submit too. They are looking for samples from danes with DCM and older danes without. I know the page says 9 years or older, but I know they are taking samples from 8 year olds too. Here is the link: https://cvm.ncsu.edu/genetics/great-...ardiomyopathy/

PLEASE contribute a sample if your dane fits their needs. Hopefully, one day, Phin's DCM and contributed sample helps make it possible to genetically identify the cause for DCM and how to avoid it in future great danes.

An oldie but a goodie pic from Christmas last year...

[Erin B.]

I don't know why but I'm just now seeing this. You did a really good job explaining everything. I'm just sorry you guys have to go through this. Thank you for the update and adorable pic You guys are still in my thoughts

[Sparrow]

Well, I came here specifically to check on how he was doing and found your newest update. Sorry I'm "late" in responding. I think of him and you often. I wish there was something I could say but I know from recent experiences of my own that there really just isn't. I'll keep checking back. And I'll look into the blood sample thingy. Rupert will be 9 in June.

[Angel7292]

Hey Y'all! I hope everyone is doing well. I sure do miss y'all so very much. Wanted to stop by and give you an update on Phin's current status. We are 1.5 weeks away from SIX MONTHS post-diagnosis of DCM. That makes my heart leap with joy!

We did a 24 hour cardiac monitoring on Phin about 1.5 weeks ago. We were looking for PVC's. We already knew he was having an issue with arrhythmia's, because we saw it on his EKG in December. The question was.... how bad is it?

Premature ventricular complex's (PVC's) are often the cause of sudden death. The woofer is here one minute... and just gone. You can't even perform CPR to bring them back. They literally would have to be shocked back into rhythm. Great danes are high on the list for this problem and you throw in DCM and you've really increased the risk of sudden death from an arrhythmia. It's just facts... nothing you can do really.

Ok... Over 24 hours, Phineas had 110 single PVC's. Going into this, we knew that it had to be really bad before we would treat the problem. See, anti-arrhythmia medications are very harmful to the dog. First off, it can and often will accelerate the heart disease. It can cause new heart problems. And it can also cause the heart to beat irregular. You have to be very cautious when you throw anti-arrhythmia's into the mix. As of now, we aren't treating them.

Some reasons for the none treatment AND how much of a risk is it for Phin to die suddenly - the nuts and bolts as it was explained to me:

Research shows that as long as they are *SINGLE* PVC's... meaning 1 ventricular ectopic beat out of place at a time, is not often the cause of sudden death. Consider how many times his heart beats in a 24 hour period. A normal heart rate for a dog is 60-140 beats per minute, depending on dogs size / age / etc. A total of 110 irregular beats in a 24 hour period actually isn't a shit ton. It COULD cause him to die suddenly though. Don't mistake that. However, 110 irregular beats isn't a whole bunch in the grand scheme of things. It could be way worse.

Phin's were SINGLE PVC's.... he had ZERO couplet PVC's (two in a row).. ZERO triple PVC's (three in a row) .. and ZERO runs of them (many in a row). He also did NOT have multi-focal PVC's.. meaning the irregular beats did not originate from different sites in the heart. All extremely good news!! These things he didn’t have ARE the things that increase the risk for sudden death. He had none.

He had 110 SINGLE PVC's that were not multi-focal. Again, he could die suddenly and without warning from an arrhythmia. Period. However, having only 110 single PVC's is considered low risk for sudden death. He is having them, but it isn't an emergency situation. It will be something we just have to watch and re-do holter monitoring in the future to reassess where we are at, at a later date.

To put this in perspective: Prior to the monitoring, cardio said to me, she'd only consider treating him with an anti-arrhythmia if he were having upwards of 500 a day, but at least 250. Or if he was having couplets, triples, multi-focal, etc. So with this information in hand, we will NOT be changing his treatment at this time. We will be staying the course. The risk to treat is considerably higher then to just leave it as is.

As an overall whole, Phin is doing well. Thus far, he has no symptoms of his heart disease (Thank God!) and tolerates his heart meds very well. We are 5.5 months since his occult DCM diagnosis and we fully intend on keeping him around as long as possible. Some danes have done well long term, others haven't. It is all a guess. We are hoping for a long life still.

As long as nothing happens, we will be taking Phin back to cardio in April, when he turns 7 years old. 7 years old!! Can y'all believe that!?! We try to remain positive but cautious because we know that this can all change overnight. His heart is going to give out at some point, and we will just keep praying and hoping it's not for a very very long time.


XOXO

[Sparrow]

Thank you again for the newest update. I'm glad things are staying the same for the most part. Love that big boy. Prayers and hugs for you.<3

[Angel7292]

Phin says... "Hey Y'all!"

Most importantly.... Phin turned 7 years old last week!! I honestly wasn't convinced he was going to see his 7th birthday. He did it! And we are aiming for his 8th birthday with hope and a prayer!!

Long, but some interesting tidbits included. Read if you want.. or just wave hi back to Phinners!

So Phin went to the cardiologist today for another echocardiogram re-check. We were so happy to see our favorite cardiologist is back from maternity leave. She is very patient and explains things in a way that makes sense. She also is very understanding of my anxiety and need to micro manage his heart disease. She is very realistic in her prognosis and delivers it in a way that makes sense to me. She does like to tell me that my dog lived to be 7 and that is amazing for a great dane. Nooo... hell nooo... Many danes live well past 7 without issue. Yes, I know his he is a senior great dane at 7 years old, but he is still just a baby to me. Pfftt... gonna wash her mouth out with soap. LOL

Sooo... Good news / not so good news.. The differences between the past three echos vacillate back and forth. For example, his original left ventricle was dilated to over 9 cm back in August, but the meds got it down to 6.85 cm in December, but it's back up to 8.5 cm today. I asked her what the difference was and she said the original improvement was the body responding to the news meds. Not so much anymore. His FS%, that I explained in detail from his last visit, was 13% back in August, 10% in December, but today it is 15%. So what got better last visit, is a bit worse this visit. What was a bit worse last visit, is a bit better this visit. Pre-clinical DCM is very confusing, they know very little about and it can change in a flash. You can have a dog die fairly suddenly, or they can last months to years in a pre-clinical phase.

There are other minor changes, good and not so good, but nothing to really be concerned about. The above numbers are the important ones. I did ask her what the hell is going on and she said there are day to day changes that could effect these numbers, the medicine, the heart is changing with the disease and also the different vets can measure slightly different.

The end result....... HE IS STABLE! His disease is considered overall stable. He *is* still pre-clinical (occult DCM).

The thing that makes me breath a HUGE sigh of relief for today is.... his left atrium measurement. With DCM, she says that a left atrium measurement is a significant predictor of impending cardiac death. Obviously, he can die at any time and of course, an arrhythmia can change the whole game. However, in the realm of heart enlargement / heart disease, a left atrium measurement is very important. As of today, his left atrium measurement is NORMAL... Yeah, normal! She also said something about the left atrium and left aorta being the same size and that being a good indicator too. She said once she sees left atrium enlargement, your starting to see trouble.

There was no arrhythmia noted today during his visit. We know they are there because of his holter in January. She reviewed his January holter with me and she said she was unimpressed and sees nothing alarming ... at this time. All excellent news.

For now, we are staying the course. I once again asked her if there was anything we could be doing more. She said there wasn't. We had a pretty extensive conversation about the life expectations for Phineas, quality of life decisions and that we are doing the most aggressive thing possible. While we can throw a little bit of this or that med wise at his bad heart, the truth is, his Pimobendan is the only drug shown to really improve the situation. We are already doing everything. It's out of our hands at this point.

We will take Phin back in August for another echocardiogram and we will also be repeating the holter monitor at that time. Of course, if he develops symptoms between now and then, we will go back before August. Otherwise, he is in great shape. He is doing well with his heart disease.

There is one little thing that has come about that we are looking into. I highly doubt, so does my vet and cardio, that this is the case BUT... something interesting has come up that needs to be looked at. I'll explain:

DCM is generally a genetic heart disease. It runs through a lot of giant breeds. It's the nature of the giant beast. However, DCM can also be caused by a taurine deficiency. Cats for some reason are prone to a taurine deficiency. In dogs, it can happen. Goldens apparently have issues with this for some reason. Taurine is just an amino acid that is found in meats, fish and dairy. It's needed for heart and brain and other muscles. Anyway, some animals are taurine deficient and this actually can cause DCM.

When Phin was diagnosed with DCM, we all knew it was genetic. I always knew about taurine, but I honestly gave it zero thought because he eats a very healthy diet and that included good quality grain free food. I was not going to chase a taurine deficiency because I have a great dane that is pre-disposed by breed alone to developing DCM. We always knew it was possible, which is why we took preventative cardiac measures.

Soooo.... Remember the blood sample I sent to NCSU for the great dane DCM study? The doctor that is conducting that study says that a clincial association has been found between some grain free foods and the diagnosis of DCM. As of right now, it's only a clinical association. She actually listed a handful of grain free foods that have popped up enough during the DCM study to raise an eyebrow.

*sigh*... Phin has spent his life on the exact foods on that list. The exact foods they called out for a clinical association with DCM, Phin has spent his life eating. My heart just sank. It's big ones too, like TOTW, California Naturals, 4Health, Acana, Blue Buffalo and a few others. That doesn't mean dogs that eat these foods will develop a taurine deficiency and end up with DCM. Not at all.

In my heart, I know his DCM is genetic and not a taurine deficiency. However, I can't ignore this clinical association. My regular vet did some checking and we can test his taurine level. It's a bunch of hoops to jump through between types of tubes, 20 mins to spin it, chilling and freezing and getting the samples to the lab in a specific amount of time. And it's pricey... About $250! Cardio said we can either just throw a physio dose of taurine at Phin and see what happens, or we test to know for certain. We are going to test, because I have to know for sure. I'll get it done in the next couple weeks.

The prayer that should be sent is... please PLEASE let him have a taurine deficiency. Cardio says if it is, she can heal his heart within 6 months! It's truly as simple as a supplement that you can buy over the counter. Again, I know in my heart his DCM is genetic. While I will test to see, I'm sure there is no healing his bum ticker. There is a very small chance though, so we are going to test and see. I can't ignore it, but I'm also not getting my hopes up.

That's all folks...

Every day he is here with us, happy and healthy, we are blessed. Like cardio said today, we have to live today like it's the last, because it might be. It's the reality we live. On the other hand, I'm going to fight this disease to his last breath. We are just thankful he is still pre-clinical and doing as well. Next week is 8 months post diagnosis and we are looking forward to many many more months, even year(s) with him. Thank you for keeping him in your thoughts and prayers.

XOXOX

[Sparrow]

Glad for the update and if a miracle is to be had, I will pray every day for him. And Happy Birthday you big beautiful smush!

[Erin B.]

Thanks for the update, and happy birthday Phin! Wow, that is really something about the taurine! How cool would that be if that's all it was?? I'm keeping my fingers crossed for you guys!

[Sparrow]

Well, Rupert turned 9 on June 11 so I took him today for his blood draw and an echo. I'll be sending it to that study you mentioned when I get the result (probably tomorrow). How's Phin doing? Ever get the taurine results? I am sad to assume it wasn't what was wrong or we probably would have gotten an update sooner. Hope he's doing ok regardless.

[Angel7292]

*sigh*... Lightening didn't strike for us. We didn't win the heart lottery either. I tried my very hardest to not have any hope that Phin's dilated cardiomyopathy was due to a taurine deficiency. But there was that chance...... that tiny little chance, I could save him. I drug my feet doing this test because I knew this would be the outcome. It just makes it hurt all over again.

He not only doesn't have a taurine deficiency... he has a wealth of it. Normal reference range for whole blood is 200-350. Phin has 546 nmol/ml. UC Davis also considers anything greater then 150 NOT a deficiency. He has spent his whole life on grain free, and even moreso, he has been eating for most of that life the specific foods that were identified as being possible clinical associations.

We plan on submitting his bloodwork, DCM details and diet to the FDA, as well as Dr. Meurs who is doing the DCM study on danes. They wanted to know the outcome either way for danes that had a potential diet correlation and had DCM.

Phin's still pre-clinical and we are very blessed and lucky for that. He is about 2 weeks from his 1 year diagnosis date. How exciting! A lot of danes don't last half this long post diagnosis. But how bittersweet too. I am not blind to the fact that the clock is ticking. We haven't given up fighting!

We go back on 8/22 for another echo, ekg and blood pressure check. We will see how much progression has taken place over the last 4 months, at that time. We are probably going to re-do his 24 holter then too. I haven't totally decided yet. I'll update again after that visit.

Thanks for checking on him Lisa.. *hugs*... and thank you for submitting the blood sample for Rupert. Every sample helps other danes in the future!
xoxo

[Sparrow]

Yeah, that sucks. Still, am thankful he is still around to update on. Give him some of his favorite kinds of scritches from me. ❤️

[Angel7292]

Let me first say.... on 8/28/18... we are celebrating 1 year since his DCM diagnosis and is still kicking it's ass!! I had a bunch of new photos, but this stupid forum won't let me add them. Grrrrr...

So we had great news at cardio yesterday. Great meaning, no major progression in his heart disease. There is NO fixing this, so any lack of worsening, is great news!

Here is the crux of what we learned:

His negative progression is very minor, and is within the left ventrical. His dilation is the biggest it's ever been. It was 9 at diagnosis, dropped to 6.85 with the start of the heart meds, then went up to 8.5 at his last echo ... and now 9.3. He's got a big heart... figuratively and literally. <3

His FS% remains basically the same - 14.2% now, was 14.5% last visit. I've explained it in the past and it's complicated. It's basically measuring the ability of the heart to pump the blood out - as a basic explanation.

The left atrium measurement is important too. Cardio says that most often - but NOT always - when you start to see left atrium changes, big problems are brewing. Phin's left atrium measures *NORMAL*!! That doesn't mean a shit storm can't take place, or sudden death, but usually she does see left atrium going wonky when things are progressing more negatively. So this is very good news!

The jist is......... while his heart has continued to enlarge, but the functioning of his heart continues to remain the same. The heart meds ARE working! <3 He is still in a good place for today.

We held off doing another 24 hour holter monitor until our full workup in December. We decided this based on multiple things. Such as, he has no symptoms pointing to an arrhythmia. Although we know for a fact he is having PVC's, his last 24 hour holter only 6 months ago showed they were very minor. He had NONE during his EKG this time. That is just a small snapshot of the big picture though. She would like me to purchase a home EKG machine (uses your cell phone!) to run a strip on him if he is showing any strangeness. He has been very run down and tired lately, and she would like to see what is going on when he feels this way. Otherwise, we will redo the 24 hour holter in December for a full picture.

While this is all good news, we need to keep things in perspective. IT IS ALL RELATIVE! DCM is going to take him from me. He will remain stable, until he is not. He will stay out of heart failure, until he doesn't. It can change tomorrow.

We are at his 1 year diagnosis of his dilated cardiomyopathy. This is big for a great dane. Don't forget, he is actually still pre-clinical (occult DCM)! We've been so blessed. We are praying for him to stay pre-clinical for a very long time. We aren't ready to let him go or give up this fight.

Thanks for following and caring for our giant doodle-dane. He sends slobbery kissers to each of you. xoxo

[Sparrow]

Glad for the decent update (even though I am late in replying). Here's hoping he stays the status quo. <3

[Angel7292]

Phineas went back to the cardiologist today to get a new echocardiogram, EKG and blood pressure check. The stress leading up to these cardiac checkups are so taxing on me. I just can't stop wringing my hands until I hear the results. Cardio walked in today with a huge smile on her face. The report findings are as follows:

Unchanged disease with no evidence of progression!!

Yes, we are doing a happy dance. Next week, it will be 16 months since Phin's DCM diagnosis. 16 MONTHS! And you know what, he is STILL pre-clinical. Hallelujah ..

Dilated cardiomyopathy is a son of a bitch disease. Congestive heart failure isn't something that takes months, it takes days at most... hours. So while we celebrate the good news, we remain very cautiously optimistic. We know what is good today, can be very bad tomorrow. But ya know what.... IT'S GOOD TODAY!

Phin only had a few irregular heart beats during the testing, and since we haven't noticed any fainting or dizzy spells, we are holding off Holter monitoring him again until his next echo. Normally, we are on a 4 month cycle, but Phin's cardiologist is pregnant again. While we will see the other cardio in her absences for emergencies or concerns, she would prefer we just wait to do the next echo with her again. That is 6 months (June) instead of the normal 4 months (April). We will repeat the holter at that time, no matter what.

For today, we are celebrating.... Phin's alive, doing well, about to hit 16 months since diagnosis, still pre-clinical, and no evidence of progression. Yeah us!
That is many blessings to count!

We are going to fight this fight for Phin, as long as he can.

He is still take Pimobendan and it's doing it's job ... Thank God!

Small print.... I hate celebrating, because I always feel like I jinx myself. I hope that isn't the case. We love our giant puddle face and couldn't imagine life without him.

Check out how white faced my old man is! He's black harl patches have whitened out dramatically.