Dewey, the Dachshund

[Brigitte]

Good morning Marla!
I am pretty sure that most of us did not understand a lab report before our dogs were hit with this disease. Even now I only get parts of it and am amazed how Patrice and Sheena are able to explain things. In Sheena’s post you see some terms highlighted in blue. If you hover over them and click it will give you an explanation. How cool is that! Patrice and Sheena have done an incredible job to do this and help people understand. This is of course an other reason why it is better to communicate on the forum instead of private emails.
You are not the only one that has problems with their vet when they come to them with this disease. Most vets are not familiar with the treatments because it is fairly rare. There have been major developments over the last few years that might not be known to these vets. We see it here all the time that vets give up because they don’t see a solution or are not willing to learn more. I was lucky that the second vet I went to (the first did not even take blood from my squirmy dog and sent me home for him to die!) was exited to work together with Dr. Dodds. She admired her and I know she learned a lot from her. So maybe you should ask around if any of your doggy friends know of a more open minded vet. If you would not be comfortable with your own doctor, you would change to someone else so why not change Dewey’s doctor?
How is Dewey today? Does he eat? Drink? Is he tired, moving around? I hope his tail is wagging! Sometimes we get too carried away by the numbers on those lab reports and are down when they go down a bit. Of course those numbers are very important, but they are not the only thing to look at. It is just as important to look at your dog and see what he feels like. Dewey is probably more tired and his whole body looks different than before. But you will see the “old” Dewey come back slowly.
Please keep us in the loop, because we all care!
Best wishes,
Brigitte

[Tamara]

Hi Marla, my name is Tamara and my boy’s name is Ashki. He was diagnosed over a year ago, on 30 April 2014, and he is just now getting to a normal PCV — his recovery has taken a very very long time and lots of patience and digging and reading. We also had to look for a new vet and switch vets, as our original vet just wouldn’t respond to my concerns or work with Jean Dodds as I wished. I am so thankful I switched, and I wish I had done it sooner as Ashki finally really started to improve when we switched vets and the new vet made some changes based upon my concerns and questions.

Ashki’s IMHA has been mostly in his bone marrow, and he has never really been regenerative, but he has recovered, so don’t let anyone tell you that if Dewey is not regenerative that he can’t recover because that is simply not true and Ashki is the proof of that.

Ashki was in the teens for a very long time, and even dropped again and needed another transfusion. Then he was in the teens again for a long time, then in the low twenties for a long time, then in the upper twenties, then finally in the 30s. It continued like that, very slow, ups and downs. Those drops just drove me crazy, I would just be heartbroken when he would drop, but now after a year I no longer panic when he has these drops as I know they are part of the process.

I know how awful this is, I was just terrified and completely stressed out and not sleeping. Everyone here — the core team of moderators — kept me sane and gave me such good advice that helped Ashki recover and helped me cope.

Sending you and Dewey big hugs — let me know if you have any questions about Ashki’s illness and recovery.

tamara and ashki

[Anna]

Hi Marla,

I am so sorry you are going through this! It’s been a while since I have been on here but I thought I would send you a note of encouragement. This site saved me from feeling so alone. My Jackie was diagnosed last November and was very ill for 4 months. She lost a significant amount of weight and was very depressed. She had 2 blood transfusions and was not responding to treatment for months until my vet recommended me to an internal med specialist where she was diagnosed with Pancreatitis as well. At that time, I was literally a day away from putting my sweet baby down because she was so miserable (and I had spent so much money!). Then, all of a sudden the next day she picked up her ball for the first time in months and started to play a bit!! I was over the top excited since I had been crying for weeks every day! It has been 7 months and Jackie is 100% back to normal! She has been off all meds for a few months as well. Please don’t give up hope! I almost did and am so glad I didn’t or else I wouldn’t have my spunky baby! Good luck, we are thinking about you!
Anna and Jackie

[admin]

Marla e-mailed me:

Hi
I just emailed Dr Long with all the questions that you told me to ask! So now I wait!!
When asked if there was any agglutination in his blood he said no everything looked fine. I’m sure that doesn’t help you but came to Mind again when I read you email.

Dewey seems quite sleepy today? Is this considered normal or am I starting to jump the gun and start worrying again!

I will let you know ASAP once I hear from Dr Long.

Marla

My reply:

Hi Marla

Looking forward to hearing the answers – if he said everything looked fine regarding the agglutination, that sounds really good & that DOES help. You know, Dewey doesn’t have enough oxygen going round because of the anaemia, so being tired is quite usual. Worzel was certainly not able to do a lot at this stage – he just lay on the settee & on the bed – I had to help him onto the bed & into the back of the car etc as it was too high for him to jump up anymore. He would pop outside to do his business, then back on the settee again. I think it really takes it out of them. Obviously, if Dewey gets really bad & very sleepy to the point you are unable to get him to wake up properly or he seems much worse, that would be a vet visit. I do think it’s just the disease & the drugs.

I hope you have been on the site to read all the wonderful messages people have been sending you – please do read them as soon as you get a chance – everyone is on your side – there is some great advice from other people who have been in your position too.

Love Sheena & the boys xxxxx

PS I am going to put your message on the site – everyone is waiting for news from you, lovely lady.

[Alyssa]

There seems to be a lot of private conversion going on so I am not 100% sure what is going on with poor Dewey, but I just wanted to post after I’d read the vet frustration!

Marla, I am in a very small town. Hot Springs, arkansas. Not as small as some, but only about 35k people, I consider it to be pretty rural. There are only a few vets here. The vet I landed with first when Sassy got sick, did very well in the initial treatment & emergency care.

Sassy needed 2 transfusions in total, however I find it strange now that I was able to do two – I know for a fact it wasn’t blood typed! My old vet told me they didn’t do that until the 3rd one. So she had two untyped whole blood transfusions from the clinic boxer. Just seems real odd looking back when everything I have read people say says absolutely no untyped transfusions after the first one.

Anyway – Sassy was crashing HARD, 30% Friday, 9% Monday, transfusion, 9% again by Thursday, another transfusion, and this is when she started to stabilize. After a few weeks of treatment, I started having disagreements with my vets recommendations & unwillingness to consider “Internet research”, she had never heard of dr. dodds and started getting very snippy with me when I kept disagreeing with her treatment plan (wanting a 50% reduction, absolutely no chance sassy would ever come off that dose, recommending things like Trifexis…), eventually I went totally against her directions and cut Sassys dosage on my own down by 25% and not the 50% she wanted, and I had ENOUGH. I started calling EVERY vet I could locate in this small town and called literally everyone, even speaking to different drs in the same clinic. I had one last number left, and each time I called my first question was “have you treated a dog with AIHA?” followed by, “what is your treatment protocol?” followed by, “have you heard of dr. dodds?” this last lady I talked to – yes to all those questions, and outlined a treatment plan she uses that is pretty much in line with what dr. dodds recommends.

EVERY other vet in my town, EVERY single one, hadn’t heard of dodds, and I feel was following an outdated protocol of huge reductions all at once, then lifelong maintenance on Prednisone with no option of coming off it, not up to date on never vaccinating again, certain meds that can’t be used weith AIHA, etc. I almost lost hope – I was so scared to do this alone – but I found someone. It was a lot of work, I was on the phone for a very long time. And I felt “bad” for leaving the vet that saved Sassys life. But in the end I had to do what was right for Sassy, and I didn’t feel that this vet was, anymore. It’s a tough thing to do, and it’s very scary. But please if you are not happy with your vet, call EVERYONE! Even ask to speak to multiple drs in the same clinic. Check google, check yellow pages, check everywhere for numbers – don’t just go by what you think is there – I had no idea this last vet existed!

Good luck with Dewey and prayers to you.

[Marla]

Hi Alyssa!
Thank you for sharing your story with me! I appreciate it!!
I don’t have a problem with my vet at all. He is always available to talk to me whenever I need and always steers me straight on what is happening to Dewey. He never makes me feel like I’m bothering him and he seems to genuinely care for Dewey’s well being. I just get frustrated because I want something to work immediately and what I am learning from everyone is “one step forward, two steps back”. This us a scary disease for me since it’s so new to me. But I’m learning lots from all these special caring wonderful people on this forum as well as Dewey’s doctor. Thank you for taking the time to care and post about your own experience! I would love to hear more about Sassy’s recovery.

[Brigitte]

No, no Marla! It is two steps forward one step back! In the long run you WILL move forward. We all know it takes patience but there will be improvements. You will learn to appreciate the small triumphs. Be it that Dewey is getting just a little pinker, a tiny bit perkier, being interested in a toy, barking at the cat, what ever… Eventually Dewey will be himself again, you just have to believe in that.

Best wishes,
Brigitte

[Alyssa]

Marla,
Great!! I am glad you are happy with your vet and it’s not as bad as I was interpreting from older post! I feel so much better after switching vets & having this new dr, I don’t feel hopeless. It makes a huge difference to have the right vet that you are comfortable with! I will share Sassys story with you and hope that you can gain some hope from it. We are still in treatment & fighting but everyday is a blessing and we are doing well.

Sassy was diagnosed on March 13th of this year. One evening, she didn’t eat her dinner. We weren’t that alarmed because she’d do that sometimes and eat later. But she didn’t eat later either. Figured she was just a little run down because I had just experienced a trauma myself & thought maybe she was reacting to my emotions.
The next day however she still wouldn’t eat and obviously didn’t feel well. We tried to get her to play that night, and she tried to, but when she went to chase her rope she banged her head on the table and looked so confused. My heart broke and I knew she really wasn’t feeling good, so I turned everything off and made her rest.
She was still drinking and alert so I wasn’t freaking out yet. But the next day, when she still didn’t want to eat, and I noticed she was hot on her ears and belly, I took her temp. It was 105. Immediately went to the vet. This was a Friday. Initial test showed she was slightly anemic (30%), elevated white counts and slightly low platelets. The vet thought it was a tick borne illness, started her on Prednisone & Doxycycline.
Saturday evening… something told me to look at her pee. I’d NEVER looked at her pee before. And I nearly broke down when I gathered it in a bowl, it was the color of dark iced tea. I called the emergency vet and went in, test showed it wasn’t blood so that meant it was the by product of destroyed blood cells, her PCV was slightly lower(27%) and the other numbers continued to get worse. But AIHA still wasn’t diagnosed surely at this point. We doubled her prednisone, and went home. Sunday was more of the same.

But by Monday morning I knew she was dying. She had severely crashed during the night, and wasn’t very responsive to us, and I just had this AWFUL feeling that she was about to die. We drove to the vet and Sassy peed in the waiting room, this awful brown-red pee on the stark white floors and it was just awful and I broke down and started crying saying she needed someone NOW and they rushed her back to test her blood and she came back at 9% PCV, 1xx PLT, white counts through the roof at nearly 70,000 and we did a full chem panel and x-rays and couldn’t find any reason for this. She was not on any meds, around any drugs/toxins. We were offered to try and transfuse her or put her to sleep. I was given very low chance that she would survive. We did the transfusion, started her on Azathioprine, did IV fluids/steroids/antibiotics/nausea meds/b12, and we decided to take her home after because it wasn’t a 24 hour clinic and no one would be there overnight and we didn’t want her to die alone. That was the hardest night of my life and I did not sleep, just watched her and prayed, prayed, prayed. Went back in the morning and she was at 19% and feeling a lot better. Went back the next day and she was 15%. Went back the next day and she was 12%, and she had stopped drinking at this point, when she had been drinking throughout all this. We prepared for another transfusion, and they did another test right before hand (about 3 hours later), and she was at 9%. I was given even less hope this time, but told she may just need time for the meds to work, and I was NOT ready to give up.
She had to have half the transfusion Thurs evening to keep her alive through the night and the other half Friday morning because it was so late in the day and we would of had to drive 3 hours to a 24-hour vet if we didn’t do it this way and I was sure that would kill her.
I can’t recall her numbers the next few days but by Monday she was 22% and we all felt it was her and not the left over transfusion. From here she started to rise slowly, whites took a long time to go down but she continued to get better.

Even though her numbers were improving, I still thought she was going to die. The massive amounts of meds were wrecking her body & spirit. It took me so long to get her to eat, and I had to hand-feed every bite of food for nearly a week before she started eating on her own. I had to crush her pills and syringe them into her mouth with broth because even the vets could not get her to swallow her pills (they tried for 45 minutes). She was rapidly losing weight & muscle. She was so weak and so tired. She was peeing every 2 hours. She lost muscle tone SO FAST… it was scary to watch. It wasn’t until about this point that I found this wonderful forum! I don’t know where we would be now had I not found this place. The ladies here are amazing and so supportive and I can’t thank them enough for the help & encouragement. You feel so alone with this illness. No one has heard of it before. It is a very scary, horrible, lonely thing to go through – it hits SO fast and hard. Sassy was literally charging through the house the day before she got so sick. Just. Fine, then nearly dead.

We’ve been lowering her pred and aza by 25% every 2 weeks, had a bit of a scare last week with her platelet count and decided to wait another 2 weeks for reducing again. But she is doing well. So well. Her PCV is 47%, and she is very happy, playful again, eating like a horse, and has gained back a lot of muscle. (Knock on wood as I type all this out…!!!). I never thought I would see this dog again, for so many weeks I watched her so tired and just not there & the first day she went outside and rolled on her back in the sun I CRIED and was just so thankful.

I’m praying for Dewey & you. This disease…. will test you. Make you question everything you are doing, especially when you see the state the meds put them in. But. You have to hold on, and know that the awful side effects won’t last forever. It’s easy to say but hard to do when you’re going through it.

Whew, I’m sorry, this is a LONG POST! It’s just hard for me to tell this story and keep it short, I guess. I feel like the feelings of hopelessness & fear are important to get across. You might feel like no one knows what you are going through, but everyone that has faced this monster knows. And we are all here for you. Don’t feel silly about any questions or concerns or ANYTHING.