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Hey there Maura and Ms Sunny!
Just wanted to check in with you and to really echo everyone else’s advice.. Please do not give up hope! We all understand the utter fear that comes with this disease. I was literally despondent for a week to the point where my mother came to my house and was trying to force feed me bc I hadn’t eaten in four days at all (and that doesn’t happen with me lol). Steve’s gums were WHITE for days and he couldn’t really walk either. The first night they let him come home and his very first urine was wine-colored. Rushed him back in and was told he had the more severe of the hemolysis types… Flash forward to today almost 3 months (crazy!!) later and Steve’s PCV is 44-45%, he’s getting his energy back, his gums are bright pink and the only thing in his way is me and my finger in his mouth all the time! Lol! He’s still on pred and has definitely had some of the issues – when he first came home he would stand up to go outside and immediately potty all over my feet – but by and large, he’s done so well! Tbis disease is a nightmare and our warrior pups fight the fight of their lives with it.. But it can be done!
I also have to stress asking and asking about the anti-clotting meds. First thing Steve’s specialist did when we switched to him was add BOTH aspirin and Lovenox (ultra low dose heparin) for anti-clotting because it carries the most morality with IMHA.
Stay strong and hug your baby! The nights are admittedly the scariest but Sunny will see you through!
Lots and lots of hugs!
Xoxo hope and Steve
Maura, it really sounds like the tech is confused. It sounds like the tech thinks you’re worried that Sunny has Evans Syndrome, which is when not only the red blood cells are targeted by the immune system, but also platelets. This is not what we’re concerned about. In IMHA, when the red blood cells are targeted, the cells are damaged and then become “sticky,” and will stick together and form clots very easily. If there are spherocytes present (abnormally shaped red blood cells; the shape is a result of damage) or auto-agglutination (when the technician or pathologist can actually see the red blood cells clumping together on the slide) this indicates a higher risk of clotting. Hopefully the labs will have information about both, but if they don’t, you can ask the specialist when you see him or her about both of these and express your concern about the risk of clotting.
The learning curve on this disease is very steep; when Ashki was first diagnosed I was floundering and felt completely out of depth. You’ll get there. In the meantime we will help you by telling you questions that need to be asked.
One thing I forgot to tell you earlier — regarding the muscle weakness — like everyone said, it does get better. Ashki weighs 59 pounds and was initially also on a higher dose of pred — 40mg twice daily. He is now down to 30mg once daily, we had to wean him more quickly due to some kidney side effects. He still has hind end weakness, though not as bad as it was, and his face is still thin from the muscle loss there too. I am confident that as we continue to wean both will improve.
Many hugs —
tamara and ashki
Hi Maura
This is difficult to get your head round at the beginning – I didn’t understand what on earth was happening either! I found it terrifying & I have a medical background, so don’t think this is at all easy to understand. Worzel didn’t need anti-clotting meds but I could not see why not at the time – because I had read that most dogs do need them, I was worried sick. He had a very rare form of the disease, just to add to my confusion! This meant he had no intravascular haemolysis (no spherocytes or agglutination) taking place BUT the majority of dogs DO have this. That is why we care about getting the right test results.
Tamara has explained things beautifully & it’s really hard for you if you can’t get hold of the blood results. Don’t worry – just ask (politely insist!!!) for a copy next time. Great to hear they will be reducing the pred too – I’m sure when you have a good talk with the specialists, they can explain things to you a bit more. If you are unsure about anything at all, just ask on here. Keep positive, Maura – you are doing a wonderful job of looking after Sunny girl & I know you will do everything you can for her – you’re a brilliant Mum.
Keep us posted!
Love & cuddles to you all
Sheena, Worzel & Ollie xxx
Hi Maura and Sunny,
believe me i totally understand that you feel you know so little. I was there a couple of years ago and I honestly felt so stupid and uninformed. it was a steep learning curve, but i learned from the people here and my incredibly patient vet who never made me feel stupid. I think it should be part of a vet’s job to give us the information so we understand it, but some of them are not very good at this or don’t see these cases enough to understand it themselves. I think this is where forums like this are a lifesaver!
Your vets know more about this disease, but there is NO ONE that knows Sunny as well as YOU! I totally agree with Sheena, YOU are brilliant! (I can just hear her saying this in a lovely British accent:)) You picked up that Sunny might be hypothyroid, that is a lot of insight right there. This could actually be the underlying problem. Ha it ever been addressed, has Sunny’s thyroid been tested? Dr. Dodds recommends soloxine for most AIHA dogs. Either because they were hypothyroid before the disease or because the prednisone can damage it and they will become hypothyroid. Some vets don’t want to test an AIHA dog because they say the prednisone will influence the outcome. But honestly in mho if the dog is low in thyroid it does not really matter why and it should be supplemented. Dr. Dodds recommended to do this with my dog without even testing him, but I hesitated, thinking, NO not an other drug. We tested him and sure enough he was low. I think supplementing the thyroid made a big difference in his recovery and I think you should bring it up at your next visit to the vet.
Again Maura, the vets know a lot about this disease but you will learn about it in no time because you want to to help Sunny. Be confident that you can beat this together! i don’t know where you got this 20% survival rate, I just hope it was not from your vet. I have never read that and PLEASE get it out of your head as quick as possible. It is a long and rocky road, but remember: YOU are brilliant and there is no reason why Sunny should not get better!
Best wishes,
Brigitte
Brigitte, Tamara, Hope, Sheena, Vally & ALL
I will have Sunny’s labs on here tomorrow. We did not go to er clinic today but rather will see the specialist tomorrow. Is there a fax # for the forum where I can send the results or should I type them in?
I am trying hard to get my daughter ready for the beginning of 8th grade and trying to stay strong emotionally.
I will know so much more wed afternoon. I have so many good questions to ask the vet now because of all of you. I am worried about clots now too so I will be Sunny’s advocate.
Sunny gets terrified on the 40 minute drive to this clinic. I hope my husband and daughter will come with me and nurture Sunny to stay calm.
I will let the forum know the results.
Thanks so much,
Maura & Sunny
Maura, Bingo is the same in the car. It takes about 30 minutes to drive to his specialist and for the first 15 minutes, he’s shaking like a leaf. My 91 year old dad sits beside him and Bingo will put his head into dad’s lap (he never normally does this). He then eventually stops shaking and puts on his martyred look with his head dropped and his nose almost touching the ground. At the vet’s, I put him on the scale, he slinks off and quietly walks over to one of the chairs and hides under it until his vet comes out, when I have to get down on the floor and slide him out. All the other dogs in there (except the ones who are currently going through some serious illness) jump all over their vets and the techs. Not Bingo. He just scathingly watches everything from his hidden fortress under the chair. Nothing moves except his eyes. If any other dog dares to come near him, he doesn’t move, he just starts to growl at them.
With the test results, if you can scan them into your computer, you can then use the Urgent Advice up the top and attach them. I’ve put the link here:
https://www.secondchanceaihadogs.com/urgent-advice/
That then gets emailed out.
If you can’t scan them in though, as you said, just type them into a post.
Very best of luck tomorrow and hoping for some good results. Don’t panic if there’s been a bit of a drop. The results can vary for lots of reasons like how much water they’re drunk, how stressed they are, how hot it is. It’s big drops or constant drops that are the things to watch out for.
Lots of love Vally & Bingo
Hi Maura,
I’m just jumping in tpo echo everybody else’s here, and also sending you lots of positive vibes for you and Sunny. Everybody’s right: the medication takes some time to kick in, we have to be patient – while also tryng to cope with our own feeling of helplessness. My Bilbo was diagnosed on August 8, and I’m learning as much as you are right now, thanks to everybody’s help and advice here. Keep us posted!
Anne
Hi Maura
Wishing you loads of luck & crossed paws/fingers. We always have lots of vomit in our car – Worzel is guaranteed to throw up (you say barf?) & shake like a leaf the whole time!
As Vally says, small variations are nothing to worry about. Post your results on the urgent advice if you can (or on here if it’s not possible – we don’t mind!). Scaned documents are better because we can see the comments on the tests as well as the numbers, which can sometimes give us good information on what is happening.
Love Sheena, Worzel (the Puker) & Ollie xxx