Saying Goodbye

Epi4Dogs Foundation Inc.’s mission is the advancement of science and education relating to EPI (Exocrine Pancreatic Insufficiency), yielding useful insights and positive outcomes in better managing EPI in dogs and cats. Our goals are to support and/or collaborate with veterinary EPI research and researchers, and to promote EPI awareness by educating the general public, pet owners, pet organizations, rescue and shelter organizations, veterinary schools and veterinarians.
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Toy_Story_PupBuzz
Member
Posts: 20
Country: Australia
Pet name: Buzz

Saying Goodbye

Post by Toy_Story_PupBuzz » 30 May 2019, 10:47

I just want to take this moment to say thank you to everyone who has helped us on our EPI journey. It has meant so much being able to communicate with people who understand what we have been going through. Unfortunately our EPI journey is finishing here. It is with deepest sadness and a very heavy heart that I let you know our beautiful Buzz has been diagnosed with stage 4 Gastric Lymphoma. My heart is officially broken 💔 Below is a run down on our story..........

Where do I even begin? I am so mad, angry, frustrated, upset, exhausted…..the list could go on but I think you get the point. This is going to be a long post but if you can read through to the end, I ask that you do because I have learnt the hard way and would hate for you and your beloved pet to be subjected to the malpractice of treatment Buzz and I have received from the vet we had been going to. I will be writing to the Veterinarian Registration Board of Victoria and am going to be seeking legal advice, but I feel this needs to be said and I need to get this off my chest.

For people who love animals and dedicate their lives to looking after them, why on earth would they continue to treat them if they have no clue what they’re dealing with. Why would they not refer you to another vet or specialist who knows more on a certain condition? If anyone has the answers, please let me know. Buzz was diagnosed in November 2014 when he was 2.9 years old with EPI (Exocrine Pancreatic Insufficiency) and we had him stable for 4 years. He was eating, he was maintaining his weight and he was healthy other than the obvious health condition. The first sign Buzz showed of going downhill was vomiting. The vomiting was spasmodic and there was no real routine to it so we just thought he may have had an upset stomach. When we realised Buzz was throwing up multiple times a day and started to go off his food, we did what any concerned owner would do and we took him to the vet. This was October 2018. Up until this point Buzz had been on 2 x 25,000 Creon capsules (pancreatic enzyme supplement) morning and night, meaning he was having 100,000 worth of Creon. It was working until something changed and it wasn’t. So we took Buzz to the vet and without any testing, upon asking for them to do a blood test and/or x-ray/ultrasound, he was diagnosed with pancreatitis. His Creon capsules were bumped up to 5 x 25,000 morning and night, making the dosage 250,000 per day. He was given tramadol for the pain and Cerenia, an anti-nausea drug, to stop him from vomiting. It worked until we were told to wean him off the Cerenia and he started vomiting in full force again. Now he had chronic diarrhea to. So we went back to the vet and was told that we infact needed to keep Buzz on the Cerenia long term and were to raise the Creon to 7 x 25,000 capsules morning and night, meaning the dosage for the day would be 350,000. By this time I was starting to feel uneasy with the amount of medication I was going to have to give Buzz but I continued to trust our vet, because you know they know best. Looking back know I wish I had questioned them more.

During this time, I reached out to the epi4dogs foundation in America and started realising that maybe I shouldn’t be trusting the vet as much as I was. For one thing, it was mentioned that if he did have pancreatitis his Creon shouldn’t have been increased and he should have been tested for it yet the vet diagnosed it without doing any testing. The head of the research foundation was shocked to hear what our vet was telling us and asked if I would be willing to trial a couple of different things. They also told me to push for blood tests for specific things. So I did a bit more research and wrote down all the test I believe he needed. The vet was still saying no to an ultrasound/x-ray but they finally agreed to doing a full blood work up when I was firm in requesting bloods. We made the appointment; I listed the tests I wanted done and $800 later the tests were done. Mind you they went ahead and did the TLI test again. What I found out later was that once an animal has been diagnosed with EPI the TLI doesn’t need to be tested again yet the vet did this test again. Wouldn’t you think that the vet would have mentioned that it didn’t need to be done again yet they were happy to proceed with it costing us around $250 for that one test. When I found this out this is when I began to question everything, they were telling us. We were told to up his B12 injections from monthly to weekly and to increase his Creon capsules to 10 x 25,000 morning and night, that’s 20 capsules per day totaling 500,000. The reasoning of the vet was “why was Buzz on such a low amount? New research shows that newly diagnosed dogs are trialed on 10-15 capsules of Creon morning and night”. I took this information back to the epi4dogs foundation and they couldn’t believe what the vet was telling me. I didn’t up his dosage anymore as Buzz was struggling with having 7 capsules put down his throat morning and night and he was beginning to vomit again even on the anti-nausea medication. I also found out that the vet had prescribed the wrong Vitamin B12 formula and when I questioned the vet on this, they stood by their reasoning that it was the right one. I was done and I decided to try new things with the recommendation from the founder of epi4dogs. We swapped the Creon capsules for Pancreatic Enzyme Powder. We swapped his weekly B12 injections to B12 capsules daily and we put him on a prescription diet of Hypoallergenic food. Within 3 days his bowel movements were the best they had been in the 4 years since diagnosis and he was eating!! Bowel movements are crucial when looking after an EPI animal, it tells us so much about what’s going on with our beloved animals. I was so excited to finally see something working again. We managed to drop the Cerenia to every 2nd day and Buzz was doing ok until he wasn’t anymore. One morning I woke up and he looked like skin and bones. It was like he had lost all this weight overnight, just like when he was diagnosed with EPI. It was then I decided I needed to find a specialist and hopefully work out what was going on. Through the help of the epi4dogs foundation and my own research I found a specialist, but they weren’t close by. This didn’t bother me as I was running out of options with local vets. We needed a referral, so I made an appointment with our vet to let him know what had been going on and to get that referral. That day my heart broke because when I weighed Buzz it read the lowest he had ever been, even when he was diagnosed at 16.9kgs, that day when I weighed him he was 16.3kgs and I just wanted the ground to swallow me up. I went into the vet with a newfound courage and let him know that I hadn’t followed his advice of bumping the Creon up to 10 capsules morning and night and that Buzz was doing better than he had been in the 4 years we had had him stable. The weight was the only issue now and I felt we had run our course with a standard vet and wanted to seek out the help of a specialist. Our vet was a bit put off by the newfound confidence I had but wrote the referral and said all the history and notes would be sent to the specialist. That appointment was on the 10th May, giving us enough time for everything to be sent to the specialist before today so that she could have a good idea of what had been going on over the past 7mths. I finally felt like we were getting somewhere.

This brings us to today. We made the long journey into Nth Melbourne to find out that the vet had not sent through Buzz’s history or any of their notes which was promised. All the specialist had were his original test results from 2014. I just wanted to burst into tears because she had nothing. She even rang the vet this morning asking where the information was and still had nothing. Apparently they had tried to contact my vet twice to see where the information was and my vet still hadn’t sent it. Luckily, I had his most recent test results in a message I had sent to the president of epi4dogs and was able to show the specialist those, which helped. Two things that really stood out to me about this specialist was that she was completely shocked at the amount of Creon my vet was prescribing Buzz and when I said that he had research to prove this new finding she said “please show me this research” and eluded to the fact that the overdosing of the medication could have been the cause to Buzz going downhill. She also knew about the epi4dogs foundation and was glad that I had been in contact with them. Without any history being sent I tried to remember as much detail as I could and with the recent test results I was able to show her she was thinking that Buzz probably had gut disease on top of the EPI and this is exactly what we were thinking also after discussing with the president and founder of epi4dogs…..so we were on the same path. She also suggested medication and steroid options that epi4dogs had mentioned so I really felt at ease and comfortable with the plan we were making. She said Buzz’s physical exam was good just that he was skinny, and we needed to get to the bottom of that. We were going to trial no Cerenia to see if the food had been the improvement or if it was just masking things as Buzz was still quite drooly which suggests he is still suffering from nausea and the anti-nausea drug was stopping him from throwing up. The specialist agreed that the Vitamin B12 formula we had been given was indeed the wrong one and that for it to work he would need 10 times the amount we were giving him to be affective. So, she wanted to do a blood test and a urine sample which would involve putting a needle into his bladder and taking a sample with the assistance of the ultrasound. So I agreed to this thinking nothing of it but thought it unusual when she returned without Buzz. She said he was the perfect patient and didn’t worry about the needle at all and while she was there with the ultrasound decided to do a sneaky look at his stomach. It was noted that the lining of his stomach was thicker than it should be and he had to large masses either side. She said it could have been inflamed lymph nodes but in saying that lymph nodes should be 5mm in diameter and these were 3.5cms each causing her to query something worse and without saying it I knew she meant cancer. The only way we could find out what the masses were, was if Buzz was sedated and biopsies were taken of them. That’s when I rang Mum in tears not knowing what to do. To do the biopsies it was going to be give or take $1200 and we didn’t have that. It also seemed like wasted money because if we did the biopsy and found out it was cancer; we don’t have the money to be able to afford treatment. The specialist also mentioned that if it was cancer, they wouldn’t be able to remove all of it being in the lymph nodes and the prognosis would be a maximum year from diagnosis with 20% of dogs making 2 years after treatment. Anyway, thanks to my beautiful Mumma loaning us the money we went ahead with the biopsy and should have some results tomorrow. Whatever comes of these results we will have a better way of knowing how to move forward. It is a lot of money to spend to potentially not be able to do anything but without spending that money we didn’t know how to proceed.

The thing that makes me angry is that if my vet had listened to me and performed an ultrasound, we would have known this sooner. The thickening of the lining hasn’t happened overnight and who knows if we were able to catch it back in October, we may have been able to do something to prevent getting to this point. We may not have been able to change anything, but we just don’t know how things could be now because our vet stuck their head in the sand and didn’t do proper research on his condition. I have no idea where they were getting their research from, but they have stuffed up big time and now my beautiful boy is paying for it. I rang the vet today while Buzz was having his procedure done and asked why the results hadn’t been sent to which the vet nurse said that they had been sent 5mins before I phoned. I questioned why they hadn’t been sent sooner seeing we had been there specifically for the referral and to have his history sent and she couldn’t answer me. All she did was sympathise with my frustration and said she would pass the information on to management. All I know is I will never recommend this vet again after what they have out us through.
For someone to make such a big mistake it makes me wonder how many other animals are suffering because of wrong treatment. If there's one thing you take away from my post let it be trust your instincts because if I had done that we may never be facing what we are now.

-----------------------------------------------------------------------------------------------------------------
These last 5 years we have done everything we could to keep Buzz stable, this even involved not having food in the house so that we could purchase his medication, and now when he really needs us we are unable to help. With chemo costs upwards of $8000, sadly we are unable to afford the treatment Buzz requires which means we will be starting palliative care. This will involve giving him steroids and anti nausea medication to help with the pain and nausea. Sadly though without intensive chemotherapy we will be lucky to make 6 weeks with him. It doesn't seem fair and it's happening so fast. How do you say goodbye when it feels like you don't have time to even process the information.
Buzz.jpg
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Danielle and Buzz from Australia.
Buzz was diagnosed with EPI when he was 2.9 years old after dropping 6kgs in what seemed like overnight.
His TLI score came back at 2.1 and his B12 levels were 124.
Current medication 7 creon tablets morning and night, 1/4 tsp Tylan powder morning and night, 1/2 Maxolon morning and night, Vitamin B12 injection once a month. Current weight is 19.9kg

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jilbert57
Staff
Posts: 659
Country: United States
State: Washington

Re: Saying Goodbye

Post by jilbert57 » 30 May 2019, 11:01

Oh Danielle my heart breaks for you and Buzz. Sending you hugs and one for Buzz.
My name is Jill and I live on the Hood Canal in Washington State. I have two dogs: Kiya is an aussie/blue heeler and is 13, TJ is a 4 year old Jack Russell. They keep me on my toes.
Mickey and his pancreatitis brought me to Epi4dogs.com site in 2012 to help manage it.

Mickey, Jack Russell. Chronic Pancreatitis. Dianes enzymes, 1/8t 3x/day with meals.
6/1999 - 8/2014

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Jean
Staff
Posts: 650
Location: South Liverpool
Country: United Kingdom - England
Pet name: Kara
My name: Jean

Re: Saying Goodbye

Post by Jean » 30 May 2019, 11:14

Danielle, I am more than sorry

I have just lost Kara, and there are no words,Just love across the miles, I hope that sharing this horrible situation in some ways helps

Please take care, we are here for you to vent and share

Love

Jeanx
My name is Jean we live in Liverpool in Uk

My Kara born 21 July 2009 diagnosed with EPI by cTLI test August 2010 TLI = <1...folate 14 Cobalamin 408, shot down to 94, b12 injections every other day

Lowest weight 39 pounds

We use Panzym enzymes, Tylan and Chemeyes b12 capsules

Sadly, on 10th May 2019, we lost her to DM


Jeanx

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Madelon
President
Posts: 601
Location: Nashville, TN
Country: United States
State: Tennessee
Pet name: Doc

Re: Saying Goodbye

Post by Madelon » 30 May 2019, 11:25

Danielle - I’m writing this through blurry eyes as the tears are flowing. I know how much you love your sweet boy and have done everything you could to help him. You were a great advocate for him. Unfortunately we sometimes never know why something like this happens but I have no doubt Buzz was sent to you because not everyone is up to the task of managing EPI. I can’t imagine the heartbreak you are going through. The time might be short with him but it will be filled with love. The hardest thing to do is say goodbye but it’s the most selfless and loving thing we can do for our fur babies. Sending you lots of hugs and prayers.
MADELON and Doc. DX EPI and SIBO: 5/22/2015
Test Results: (1st) 7/2014 = TLI 16.5, B12 894, Folate > 24; (2nd) 5/2015 = TLI < .4, B12 406; Folate >24; (3rd) 10/2015 TLI < .4; B12 >1000; Folate 14.4. Prior to DX: May 2014 (2mos) - DX coccidia/bladder infection; July 2014 (3mos) 1st EPI test = TLI 16.5, B12 894, Folate >24 - Dx SIBO not EPI; Feb 2015 thru May 2015 - weight loss only; May 2015 vomitted several times, diarrhea and eating poop. Regimen: 4 cups Sport Dog Food Elite Herding - Diane 6x 1tsp per cup; 1 WonderLab PetFactor B12 2x day; 1/2tsp Slippery Elm 2xday; Multivitamin; 1 Zyrtec 10mg 2x day; Salmon Oil

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Olesia711
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Posts: 914
Location: North Carolina
Country: United States
State: North Carolina
Pet name: Izzy

Re: Saying Goodbye

Post by Olesia711 » 30 May 2019, 12:01

Oh Danielle, i am so so SO sorry to be reading this...... my heart is broken for you. It is truly a travesty when a professional harms an animal ... What was done to Buzz is horrific.... and i hope you will report this to prevent such damage being done to others in the future.

Please know that although you can no longer "fix" Buzz, even if you could afford the chemo, but rather you can only make him as comfortable as possible..... i truly believe that they know when we care with all our hearts and do the very best we can by them...i am sure Buzz understands and feels your true and deep love for him. And sometimes... the chemo... although it does help many, some dogs just do not respond well at all to it.... and it is hard on them as they do not understand what is happening with the treatment...........

May you experience many gentle, loving and treasured moments with Buzz for as long as he is still here with you .................

Holding you dear in our hearts and surrounding you with much love,
Olesia and the entire Epi4Dogs Staff
Olesia, owned by Izzy, a 35lb Spanish Water Dog (SWD), Diagnosed at 1.5 years old - TLI results 1.3, Doing great 12+ years later! Once stable at 3+ months, was able to reduce enzymes to only 1/2 tsp of Enzymes (use EnzymeDiane's 6x) with each cup of food, but as she aged- -had to go back 1 tsp enzymes per cup of food. Fed various grain-free kibble+real meat, 6x pancreatin enzymes from EnzymeDiane., gave 1 tsp of coconut oil / fish oil daily .... until she developed Diabetes and she now cannot tolerate higher fat foods. Currently feed an 80% home-made diet of sweet potato, a lean meat/fish, 1/3 of a raw egg, fat free cottage cheese, fish oil+vitamins and bone meal with 20% Annamaet Lean & Grain Free kibble. This combo has regulated her Diabetes (takes Vetsulin) and EPI and is very well managed. In Feb 2013, Izzy developed a very serious condition called IMHA which she (thankfully) beat and is now in remission. This is when we discovered that she also developed Diabetes & Low Thyroid. Izzy was able to receive excellent care because of the generosity of folks on Epi4dogs! Izzy continues to wake up every day full of joy. I am not a vet. All of my suggestions/recommendations are based on personal experiences, observations, information gleaned from EPI researchers & pet parents alike, and EPI research. Please share with your vet everything we suggest.

Barb
Staff
Posts: 326
Country: United States
State: New Jersey

Re: Saying Goodbye

Post by Barb » 30 May 2019, 13:49

Danielle, I am so sorry that you and Buzz have had to go through this. I just hope that with your input, your vet can realize that his actions have caused immense suffering and that he can become accountable and amend his ways so that it never happens again.

You are now on a different path and Olesia is so right in telling you that our pups know when we love them with all our hearts and are doing everything we can for them. Being with Buzz and treasuring every moment with him is a gift to you and to him. You never lose that gift.....even if his physical form is not here.

Our hearts are with you and we are walking this path with you. Your love for Buzz lights the way.

Hugs,

Barb

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Sandie
Member
Posts: 7
Country: Portugal
Pet name: Sandie

Re: Saying Goodbye

Post by Sandie » 30 May 2019, 17:17

Dear Danielle,

I am new to EPI4Dogs, but reading your words brings back too many memories of the last months.

I lost faith in Veterinarians, and for many good reasons. Cora, Maggie, and Sandie - they all suffered from medical mistakes, and care that could - and should ! - have been so much better.

I was devasted with sorrow and guilt, until I met a Holistic Vet that told me that we all "make decisions based on the information we have at the moment". These are wise words, that I hope can help you, as they helped me ...

... like you, many times my instinct was telling me something was wrong, but then we are not supposed to know more than a doctor ... and also, it is very stressfull (and we can't afford to pay) to keep running from vet to vet, sometimes to become even more confused.

Maggie died from cancer about 3 weeks ago. I won't get into much detail, to keep this short, but, when all the conventional vets told me that all they had for her was sedatives / pain killers, I came across a veterinarian that has restored my faith in medicine.

Please know that, like Olesia stated, chemotherapy does not always help, in fact may not be recommended, as it has dramatic effects on other organs, like the kidneys - and can cause much suffering.

What this veterinarian offered was CBD, and Viscum Album, Milk thiskle, along with a special broth that Maggie was actually able to drink, vitamin C and Nutribound. CBD oil is by no means expensive, about 40 euros and the bottle had dozens of drops. I didn't even know this existed ! But it changed Maggie's life in her last days ... unfortunately I found this vet too late ... so late ... but Maggie still beneficted from this treatment for a short while. She had no pain, she was alert and calm and sleeping well, and she loved the broth ... it meant the whole world to me to see her this way, even knowing how terribly sick she was.

Please research this on the internet, maybe it can be something good for Buzz ... who knows ... if I can be of any help, even being so far away, by asking anything to this vet for example, please let me know.

Hugs from me, and Sandie ....

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Buttermom1
Staff
Posts: 9
Country: United States
State: Texas

Re: Saying Goodbye

Post by Buttermom1 » 30 May 2019, 19:10

Oh I am so very sorry..... You have done everything that was humanly possible. Please believe that. I know the pain and second guessing you’re doing right now. I really do. I also know that your pup only knows the love you give. So give all the love you can for the time you have. Hugs to you....
Susan

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Riley's Mom
Staff
Posts: 199
Country: United States
State: Virginia

Re: Saying Goodbye

Post by Riley's Mom » 04 Jun 2019, 19:44

Oh my heart is aching for you. Know in your heart you did everything for Buzz, and I believe these special dogs know how much they mean to us.
I hope you have some tender treasured moments while you love on Buzz.....
Elisabeth

Riley is a 10 year old Labradoodle. She was diagnosed with EPI in 2014.
She currently eats Taste of the Wild, I cup in the morning, 2 cups in the evening, each meal with 1 Wonderlabs B12 sprinkled over her dinner. Enzymes are EnzymeDiane, 1 tsp per cup of food, mixed in home made bone broth. No other supplements or meds at this time.
Riley currently weighs about 44 pounds, which is pretty heavy for her.

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TerryBin
Staff
Posts: 25
Country: United States
State: Washington

Re: Saying Goodbye

Post by TerryBin » 05 Jun 2019, 17:56

I am so so sorry to read this. You did everything you could and all you can do is love, love, love your pup! It is very difficult to say goodbye to our fur babies. We lost Taiko in April at age 12 1/2 and even that seemed too short of a time. Taiko had EPI but it was controlled and she died of other issues. I am so sorry you did not have longer with your pup. I know your heart is broken but let all the good times and memories fill those broken spots.
3 Shiloh Shepherd Pups!
Taiko was born 6 September 2006 and had EPI; she passed over the Rainbow Bridge 10 april 2019 NOT EPI-related.
Pharaoh born 24 November 2007 and has EPI.
Moku born 15 April 2014 and was dx with EPI in January 2019.
Hoshi born 6 July 2019 and does not have EPI
Taiko and Pharaoh were half siblings through their sire; their sire is Moku's grandfather through his Mom. Moku and Hoshi have the same sire.
Pharaoh and Moku use PancreaPlus tablets and receive weekly B12 shots at home.

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