AIHA or IMHA

 Friday visit to OSU

We took our other dog Domingo with us.  I took a big bottle of Milk Thistle.  We got in to see Cyclops.  She was happy to see us.  She got a chance to visit with Domingo which was really nice.  

Our medical student who has been so great finished her rotation here and she was on her way out to go to a school in New England to do an externship with Horses.  So it was sad because Cyclops really liked her.  The doctors wouldn't let us give Cyclops food. It was like callie said, they want to control her intake and know exactly what is going on. 

We visited for about an hour.  She is no where near normal but still holding good at about 25.  While we were there we met another IMHA dog and her owner.  It was a big Yellow Lab.  She got sick around Thanksgiving so has been at this about 2 weeks longer than we have been.  This dog seemed to have plenty of energy.  

Right now its monday morning.  I am suppose to hear something from OSU at any moment - whether or not to come pick up Cyclops.  I'll post later today.  I see a lot of posts since my last one that I want to reply to.  Especially the nice tribute post.  So I'll be back ASAP to respond to all of you.. thanks as always for your well wishes for Cyclops.

 Callie.. I will call you tonight.  Things have been a whirlwind with work and trying to keep up with just normal household issues - I will call you either this afternoon if I don't get Cyclops or this evening if I leave to pick her up.

Yeah -- HOW DARE YOU have a ***REAL LIFE***??????

*big huge chuckle* -- it's not just the folks here expecting "replies" (yeah, there are times our hands shake just checking back to see what's going on *grin*) but when you have a sick dog like this EVERYTHING goes amok!!  And your dog has been sick during the 2 busiest weeks of the year when everything HITS and nothing is normal, etc.

So take a deep breath -- it's all good and holding at 25 is GREAT.

p.s. FWIW -- I had been taking Billy his homemade food (*yes, I WAS driving 3 hours to take him food I kept on ice!!  JUST cos I was trying to make sure he ate!!*)

Because I know so MANY of the vets up there, and cos the TCVM vets all encourage home-made diets I'll never forget the day Dr. Goldkamp very kindly said to me "Um .... can I ask you to feed him a good quality canned diet until we get him STABLE and producing blood?  Because that way we can rule out 'owner errord'd and we will know -- absolutely and for sure -- that diet isn't a cause of anything??  I know it's not your preference but ...."

Yep, I caved!!  I even fed him (gag yuck) Science Diet!!  (canned only) But you know -- when you get folks trying THIS hard to make sure your dog survives ... you DO just about any thing you possibly CAN do to ensure that everything goes as well as possible.  You just plain gotta! 

And then sometimes the flood gates of "normal stuff" that you've been holding back "til the dog gets better" just plain blow off their hinges.  I surely DO understand!!

Boo hoo about your favorite med student moving on.  I'm glad Cyclops is holding her own.  I bet she was so happy to see you and Domingo.  Will keep the postive vibes heading your way.

calliecritturs

Yeah -- HOW DARE YOU have a ***REAL LIFE***??????

How did he manage time for THAT???  I'm so glad to read she is doing pretty well and I'm really hoping your next post says she is home in her own bed with her friend at her side. 

Lori

SO HAPPYTO HEAR THAT YOURGIRL IS DOING WELL. I NOW THAT SEEING YOU AND HER FRIEND DIDHER A WORLD OF GOOD.

 ON A SAD NOTE, A GOLDEN ON ONE OF Y GOLDEN RETRIEVER FORUMS WAS SENT TO THE BRIDGE TODAY.  ANGELO WAS ALMOST 14 HAD HAD BEEN DIAGNOSED NOT ONLY WITH AIHA, BUT ALMOST ANOTHER IMMUNE DISEASE THAT COMBINE IS CALLED EVANS SYNDROME. THIS IS AN ESPECIALLY HARD DISEASE, HARDER THAN AIHA, SURIVAL RATEEXTREMELY LOW.BUT ANGELO WAS DIAGNOSED ABOUT 4 YEARS AGO AND HE SURVIVED.  HE LEAD A GOOD LIFE THIS LAST FEW YEARS,BUT OLD AGEFINALLYAUGHT UP WITH HIM-----LIFE EXPECTANCY FOR A GOLDEN RETRIEVER IS 10 TO 12 YEARS--AND HIS REAR END GAE OUT ON HIM. 

ANGELO WAS A TRUE INSPRIRATION TO ALLWHO FOUND THEAIA GROUP, HE GAVE THEM HOPE AND EVEN IN HIS DEATH, HE STILL CAN GIVE HOPE BECAUSE HE BEAT AIHA, HE JUST COULDN'T BEAT OLD AGE.  IT WOULD BE NICE TO SAY A LITTLE PRAYER FOR ANGELO AT THE RAINBOW BRIDGE. 

 Picked up Cyclops

Here is the scary thing.  She is on the generic cyclosporine.  The cost is about 250.00 a month vs 800.00 for the real deal.  The vet is very aware that it may not work.  She said that out of 8 dogs 1 dog did not respond to the generic.  By cooincidence, the dog that did not respond was that yellow lab that I mentioned during the visit I made on Friday.

 Her dog takes twice the dosage as Cyclops. I'm not sure if that means twice 800.00 or not.  

I know there is a good chance this isn't going to work.  The vet gave me the rest of the brand name cyclosporine that I had alrady purchased - she said that if Cyclops either vomits or gets diahreah then I should switch to the brand name and then get her back to the hospital to determine what to do next.  

We are tapering her off the prednesone and in 6 days she'll be on cyclosporine only.  All this seems very scary.  I am giving Milk Thistle.  The vet asked that I keep all things the same for 2 weeks to make sure that anything I do won't be mistaken for a reaction to the cyclosporine.  To me that seems reasonable.  She didn't seem to have a problem with the TCMV but wants to make sure things are at least holding steady.  

I think that if she reacts to the generic it will be in the next 2-3 days.  Assuming she stays healthy then I take her to my vet on Monday for a CBC and Chemestry which they will fax to the hospital.  Then we will know better what direction she is heading.

If you guys remember I said I thought I could swing 4000.00 total.  Today I hit 3000.00 for everything from the first day of diagnosis to present day.  I am saying this because I want anyone in the future who might benefit from Cyclops's story to know what they're in for. If Cyclops lives a normal life it will have been worth it. 

Honestly I'd get in touch with the TCVM vet -- I talked to Dr. Goldkamp yesterday, and I know Dr. Xie would be able to vouch for the work that UF at Gainesville does with IMHA (and there is a TON of it) in that the acupuncture and herbals actually augment the regular drugs -- they don't inhibit it.  They'll also be able to calm down the liver in a *big* way.

Glad she's home -- and I know how scarey this is.  We had decisions like this too -- I mostly went with UF's recommendations but I was like a bulldozer that i wanted to use the TCVM.  Even tho they have vets on staff there who are certified, use it and actually more vets **teaching** it on staff -- it's not universally accepted.  So Dr. Goldkamp had to be *convinced* as well. 

But as soon as she saw Billy was making blood hand over fist she stopped objecting really fast.

Good luck -- and p.s. -- it's not as easy as simply $800 X 2 because of the increments of the pills -- but it's safe to say it's at least $1200 for them (best guess).  Depends on exactly what the dose is.  Wean off will be heck tho.

GratefulDawg

 Picked up Cyclops

YAY!!!  Keep up the good work Cyclops!!

It is a long, expensive and emotional road, I know what you are saying, Mike. 

Lori

Glad she got to come home with you!!  I hope she does ok on the generic stuff.  The prices are obscene.  I hope her count is good on her next check up.  Give her some belly rubs from me.

GratefulDawg

Today I hit 3000.00 for everything from the first day of diagnosis to present day.  I am saying this because I want anyone in the future who might benefit from Cyclops's story to know what they're in for. If Cyclops lives a normal life it will have been worth it. 

It's hard to believe that it has only been 3 weeks since she was diagnosed. I remember when I first found this site and you had asked how much I was told that treatment for Nikko would have costed. I could have hit that $3000 mark in a week or so with her. Mike, you were right about the demographics and the cost.

Cyclopse was my first connection to IMHA after I lost Nikko so I think about her often. She has been a fighter for the last 3 weeks and I know a lot of people are pulling for her. I have told my co-worker's about IMHA and about this website and Cyclops and her battle. Now I am asked daily how Cyclops is doing!  Please give her a big hug for me. My fight with IMHA was much shorter, I can't imagine how hard this has got to be for all of you trying to fight this battle daily.

I just found this site while doing some research on this IMHA disease. I am so happy I found it! 

My dog is only 4 1/2 years old and was diagnosed with this disease on Saturday. I was devestated and I am still struggling .  I am 26 years old and I have no children... she is my kid.   She was fine last week and Thursday I noticed she wasn't her spunky self and wasn't eating. I just figured she was tired and didn't like her food anymore.  Then early Saturday am she had thrown up in three different areas of the house and it was a lot for not having eaten in 2 days. When the vet opened I called and asked for them to see her immediately. I had to wait until 10am for them to see her, and while we were waiting she went to give me a kiss and I noticed her tounge wasn't pink, it looked kind pale.  When the nurses came in to check her they pulled up her lips and that is when I saw her gums... and they were white.  I knew something was really wrong then.

The Vet came in and looked her over and told me that she thought she might be anemic, so she said she wanted to do a blood test and it would be about 20 minutes.  So, I was thinking ok, some iron pills and she'd be okay.  They called us into one of the exam rooms asked us to wait and that the vet would be in shortly.  I swear I heard her take a deep breath before she came through the door, I knew at that moment it was going to be bad.  And it sure enough was... IMHA and the vet suggested that she go to The University of Georgia for a transfusion immediately. Her hematicrit level was at 12%, and she felt that was the best place for her to go. Then she told me that it would cost between 2-3k dollars.  I totally do not have that, and I felt the life fall right out of me. I just started shaking and I didn't know what to do or how to think clearly.  The vet wanted to run more tests and said she would call me, to get some coffee and discuss with my family what I wanted to do.  I started calling everyone to get some kind of perspective and help.  I don't think I've cried so much in my life.  I finally decided after much discussion that the transfusion seemed to risky at that time ( I was given a 50/50 chance that she'd make it through the procedure); so I opted to keep her at the vet over the weekend where the vet would give her the meds she needed to see if they would stop the immune system and the vet would check on her and her blood work. Teenie needed to rest and not move around or be disturbed, so having her at the vet instead of home seem to me to be the best option. She called me twice a day with updates. Dr. Wise is the best.

It was a really rough weekend. I work overnight so needless to say Saturday I din't get any sleep and had to go in at 10pm and work til 7am. I fought back tears all night and morning and when I thought that I had stopped, when I got home from work and she wasn't at the door to greet me I lost it.  The flood of tears came.  I started feeling an overwhelming sense of guilt that had I brought her in on Thursday when I noticed that she wasn't herself, she wouldn't be so bad off. I also noticed (since she is paper trained) that her urine was real dark about a week prior to all of this. I just thought it was from her food, the protein and her not drinking enough water or something.  WhenI started researching the disease I saw it was a symptom. I felt that I aided in killing my dog. I saw her urine.. I noticed it looked funny... though I did nothing.

It is now Wednesday morning, and yesterday when I went and saw her she seemed better than she did on Monday. Though she wasn't really eating and the vet was concerned. So I brought all kinds of different treats she likes and some soft food I bought for her when I noticed she wasn't eating.  When I called yesterday afternoon for an update they said she had been eating and seemed in better spirits and would probably be able to come home today (Wednesday) as we had discussed since her levels went from 11% to 18% in less than a week.

So, overnight I have been researching this disease and found this site, and I cannot tell you how helpful it has been. I am sooooooooo glad that I am not alone, because when you hear that your loved one has this disease you totally feel that you are and you feel helpless. Especially if you are not financially set.

If I do get to bring her home I am REALLY scared that I will make her worse. I am asking everyone that is in this forum for advice and suggestions on how to help take care of Teenie when she comes home. And what I need to look and watch out for so it does not happen again. I NEED HELP AND ADVISE!!!!!!

Thanks for taking the time to read all of this. I know it was a lot.

I'm so sorry that you and Teenie are going through this horrible disease.  Please, please don't carry that guilt about taking her in sooner.  You did exactly what the normal, loving dog owner would have done.  You noticed and noted different changes but they didn;t seem serious at the time.  I don't think anyone without prior knowledge of this condition would have done any differently.  I will add Teenie to my dogs that I am praying for and I hope you can find some help here.  As you can see there are several people with extensive experience with this and they are so willing to help you as much as they possibly can. Sending healing and comforting thoughts for you and your precious dog.  We all love our dogs like family members and totally understand how devastated you are.  Hugs.

 Scott

8 years is just not enough time to be with your most loyal friend.  I'm glad you got a chance to be with at that time.  I was very worried about Cyclops when a vet I did not trust wanted to keep her for 3 days.  I insisted on taking her home against medical advice right after her transfusion.  My gut told me that these people were not all that interested in saving her and that if she was going to go I wanted her to go while I was with her.  I really do not know if I have another day or another week or month with her.  I know by all the stories of people that things can look good one day and the next day its over. 

Shanny could have been born and ended up being owned by someone who just neglects their dog or even worse abuses the dog.  Shanny could have ended up in a shelter somewhere.. but he was lucky enough to have a very comfortable life with you.  I keep telling myself the same thing about Cyclops. I think she has really enjoyed her life.  And even if she lived a normal life span of 12-15 years it would still be too soon.  

Thanks for posting about your dog.  I really believe that we all help each other and I think that people who have not even heard of this discussion group will one day find it and might get some help from all of our talks.  

 sandra - how many mg of milk thistle and how many times a day?  just trying to see what everyone else is doing.  i am building up to what callie said earlier about 5x what the bottle says is a normal dose. 

i know what you mean about starting to neglect your own health over the dog.  i am diabetic and my sugar has really gone out of control since this has happened.  i'm trying to do better.  wish you the best!

 callie

i am going to get in touch with that vet today.  i think that i will make an appointment for next week after her CBC.  if the CBC is showing that the cyclosporine is doing ok then I don't see any reason why not to try the TCM.  I just want to respect the vet at OSU who is well aware of the danger of the generic cyclosporine and wants to make sure to catch things very early should it either not work and she regresses or should she have a reaction to it.  

believe me i am taking your advice and using it whenever i can and as soon as i can.