Since the death of my friend SallySue’s dog Bentley (affectionately known as “Mr. B”) from Immune Mediated Hemolytic Anemia (IMHA) and my Dog Dylan’s subsequent attack of Autoimmune Hemolytic Anemia (AIHA; a specific form of IMHA), I have been unable to write much about anything, so I thought that maybe writing about Mr. B. and his struggle for life and SallySue’s struggle for love and some of the choices we all go through, might help me understand why. There is no doubt how much she loved her Bentley and there is no doubt how much I love Dylan and there is no doubt how far we and many of our friends will go to save our dogs from a complicated and deadly disease such as IMHA. But how we each approach it and the choices we make and why we make them the way we do, can be very different and has caused me a great deal of emotional stress lately as I find myself unable to help others. The words I need to write for support are just not easy to find and by the time I do, the relevance has often passed and any opportunity to help has been missed. So much of what I write is left unfinished lately, as truly expressing my thoughts and intention has not been easy and while I fight for Dylan, I have little else left over.
Mr. B. was diagnosed with Immune Mediated Hemolytic Anemia back in the summer (2011) and I met Sally, Mr. B.’s loving guardian, on a discussion board where she appeared with a plea for help, just like the rest of us. I will never forget how hard she worked, day in and day out for Mr. B. and how hard he fought all along the way. Such a cute dog; but like all of the dogs I have seen fighting these deadly diseases, he was truly a tough dog and not just a pretty face (which he certainly was too)! They don’t give up; they fight as long as we want them to. The day that she chose to end his suffering and let him die peacefully in a beautiful place on a beautiful day, I was desperately trying to provide answers and options to what was going on that might be causing his crash after finally seeing some success in his treatment. But in the end, I too knew Bentley had been through so much and at some point, as their loving guardians, we may have to decide to let go in order for them to find peace.
Bentley, like all dogs that battle IMHA/AIHA, was treated heavily with steroids, immunosuppressants, antibiotics and more. For many dogs the initial anemia is not stopped and in some cases it takes a long struggle to stop the slide and begin to see a positive outcome, as was the case for Mr. B. In all cases it is a constant battle of ups and downs, little successes followed by stressful changes for the worse, side effects, infections, clotting or bruising, who knows. One never knows the correct balance or dose of drugs to use, or what is the “correct” treatment as there is really nothing simple that just works. There is constant stress, both physical and emotional. How to balance the deadly effects of the disease with treatment and the toxic stress that are a direct result, is an impossible problem with no good solution. It is a battle of Love and Death!
One thing I know is true: We don’t give up! I would never, ever say that Sally gave up. To the contrary; she worked endlessly and tirelessly to save him, but at some point she had to decide where and when Bentley would pass on. She did it for him. She did it out of love. I know; because I watched her fight for him. I have never met him and yet I miss him dearly. I only new him through the love of SallySue and how she showed her love for him through her tireless effort. She did everything she could. I am so sad for her loss. But I know it was the right thing to do, because there is so much more to it than just raising and lowering drugs, adding drugs… The side effects of treatment result in incredible stress and at times there is no choice as the body can no longer fight under the conditions present, caught between the disease and treatment.
Since starting to write this over a month ago, my Dog Dylan suffered her second attack of AIHA and I have faced my “Love and Death” scenario once again. I knew when she was diagnosed that I would not put her through the suffering of side effects that she had been through the first time. That was a trip on the roller coaster I could not bear to repeat, having seen the true cost. Neither of us could suffer through the paralysis and muscle loss caused by prednisone and everything else that came along with it. The new plan was that lower doses would be required and despite all the fear around me, the choice was clear to me. She would die from anemia and not from the side effects of prednisone if it could not be stopped with lower doses. To some degree this is the same choice I made the first time, as we chose not to go to emergency for transfusions. Not an easy choice to make even though I love Dylan dearly and would do anything for her. Saving her at any cost is not something I consider to be in her best interest necessarily. To me there is so much more to consider.
Like with SallySue and her sweetheart boy Bentley, I remember my Jagger’s last good day in 2009 the best and it was one of my favorite days of all time with her. A beautiful warm and sunny February day, just like she loved. Green grass to run and play fetch on in the sun; a happy dog day! One last day of happy prancing and then hugs goodbye after her suffering began again. There was no saving her and out of my love for her, I knew the only solution was to let go. No more tests were needed. No more solutions would come. We might learn more about the problem, but in the end there was no solution even if we knew the cause. This was an easy choice to make as the stress and suffering were obvious, despite how sad it made us to do so. Leaving this Earth with such love and beauty, seeing Jagger happy, playing on the beautiful green grass in the sun was so much better than seeing her die in an examining room, or maybe not being with her at all.
This past March when my Dog Dylan was initially diagnosed with AIHA (March 19, 2011), she was so close to death I offered her the choice to let go two nights in a row, as she lay beside me anemic, without energy and unable to do anything. Rushing her to emergency for a transfusion, only to die along the way, or on the table was not an option for me. It was too late for that and I could not bear the thought of losing her anywhere, but in my arms. Was this selfish? Maybe, but knowing what I know about treatment, this was a time to decide. They need to be strong and determined for a long fight against the disease and its treatment and so this becomes the time when her strength to survive either shows, or it does not. If they don’t have the fortitude and the health to fight, then suffering will be what they spend the future doing and this is something I would choose to avoid for them. This is what SallySue chose to avoid for Mr. B.
Dylan was at peace at that time either way and both nights she chose to stay. I am grateful for every day and every second since that time in March. So much more than just simply “medical treatment” goes into our decisions. No veterinarian can make these choices for us and many times they are not capable of even understanding anything about our companions in this regard. Often their advice is so contrary to the truth of the situation and far from what really matters. Some cannot see anything other than the problem and their impotence. Saving face and the “easy out” is often their solution. A good veterinarian on the other hand, will understand this responsibility of ours and will allow us the freedom to decide. This is the choice I was allowed to make for Jagger. Having been through this Love and Death struggle with Jagger, I knew that with Dylan it was and is important that we be together through her illness and her death if that is the outcome. I cannot stand to see her die on some cold hard table in some emergency room and would prefer to say goodbye hugging each other here in my home.
I know as a guardian who has been through such an intense fight for life, like SallySue has with Mr. B., that our relationship and bond with our sick dogs becomes closer and so much stronger. The more intense the fight, the stronger the bond becomes. But our love includes our compassion for their situation and the decisions we make are influenced by that compassion. The love is so strong; it leaves us so empty afterwards when the fight is lost and that emptiness is often filled with doubt. But I know with 100% certainty that had there been another choice, or some answer to Bentley’s problems, SallySue would have made that choice and fought on, as I would have with Jagger. This was not a choice of giving up, but one of saving her dog. It was a choice of letting go so that Bentley could be at peace. This was a selfless act. Letting go is so hard and comes with great emotional anguish and doubt, but there should be no doubt after the battle that was fought on Bentley’s behalf. It was a super human effort, but in the end, we often have no say in what the outcome will be no matter how desperate we are, or how hard we try.
This is the problem I have faced with Dylan once again and spoke to SallySue in depth about. Yes I had a plan for Dylan, but in the end the disease would choose the outcome. I knew I had to use lower doses of prednisone to prevent her suffering and loss that would certainly occur again if I did not do so. But would the disease allow me to use lower doses? Would prednisone stop the attack and would it keep it at bay if I lowered prednisone even more to prevent the side effects Dylan was so susceptible to? Yes I had a plan and it involved aggressively lowering prednisone to find the lowest doses that would work. Serious risk was the result as we faced the possibility of letting anemia take hold and allowing her immune system to fight back, but I needed the disease to be held at bay at much lower doses than anyone other than myself and Dylan’s Vet felt comfortable with. I would rather have Dylan die then of anemia and AIHA, rather then have her suffer through what we knew would come if prednisone had to be given at the doses she had previously been given.
Although just about as helpless once again, everything was and is so much easier this time thanks to the experience and support that has developed around us since the first attack. I am no longer blind and guessing, although still not in control of anything. Our approach to use prednisone alone has left me empowered with a simple choice and a solution. A clear path, although a potentially deadly path for sure. This is unlike any other case I have seen since jumping on this grievous roller coaster of despair and hope. This is unlike my first AIHA ride.
One huge difference this time is that the bonds we form amongst each other as people with a common struggle is also quite amazing. Incredible support is offered day and night, no matter how serious the problem. So many unknowns; our vets and specialists guessing too and everyone comes to realize the value of sharing our experience. But in the end, there too exist serious differences in the choices we make and why and this is likely one of the big reasons for my inability to write. I always wish to say positive things and nothing has been all that clear to me lately. Choosing the words has become one of conflict. Facing the fight with Dylan and choosing such a different path has left me feeling unable to find the right words for others, despite knowing each case is so different and that my situation with Dylan does not necessarily apply to others.
I am always wanting to provide support and say great things for each person to help them make the best choices, but my heart and soul are in conflict. I do things so differently and treat things so differently it seems. How and why I choose to treat the issues we have faced and how and why I make the choices I do seems to be unique to me. I don’t believe in keeping them here with me at any cost. No, for me there must be love and happiness in their life for them. There must be a joy for something and I know that for Dylan there certainly is. She is so happy to be here; happy to get outside, or up and about for breakfast and dinner; happy to bark and greet her friends, happy to wiggle her tail for anything she likes. What a joy it is to see and how excruciatingly painful it is to see lost. This side of life is so essential and the reason I fight for Dylan’s survival with her.
Since the battle is so incredibly difficult, especially for a dog of Dylan’s age, I also have chosen to take risk of finding and using minimum levels of prednisone (without fear) in order to reduce stress on Dylan to an absolute minimum as a primary goal. It is not simply good enough just to treat her the way every other dog is treated. She must get the best possible treatment or her happiness will be lost forever. After fighting so well for so long, it was Mr. B.’s sudden crash and loss of everything he had gained, the loss of his happiness and ability to enjoy life that were likely the biggest factors in SallySue’s final decision. A decision made out of love for her Bentley.
Dylan must get the best possible plan, or her joy will not be possible. She must not be treated out of fear and the true cause of her issues must be accepted. There is only one issue caused by AIHA, anemia, and all others are caused by treatment. Muscle loss and paralysis are not symptoms of AIHA. So many of the issues I see in other dogs are attributed to the disease when in my heart, I know they are a result of treatment. I consider side effects to be the true cause of many of the issues faced. A likely result of the stressful and dangerous drugs and doses we give our dogs and as a result I urge everyone to consider this as seriously as the disease itself. Do my pleas fall on deaf ears? Sometimes I feel completely helpless. More is not better. Minimal doses that produce the desired effect in every case are much better. This is my conflict.
Yes I know the drugs are necessary! Yes I know they may die without them! Yes I know that some dogs require more than others to stop the disease. And yes I absolutely know that no matter how we balance treatment and the disease that there may be no surviving despite our efforts. Yes I know some don’t respond to prednisone and many or most cases cannot ever be treated as I have treated Dylan, but to ignore what has happened to Dylan and to ignore that it was her treatment with high dose prednisone that was the sole cause of all her muscle loss and the simple fact that less prednisone was better for her, is unfair to many. To think she is just one unique anomaly is unfair to many dogs who are taking too many drugs, or whose doses may be far too high. Dylan would certainly be dead if I had not considered the drugs as seriously as the disease and certainly if I had not known that more is not better.
Higher doses of prednisone certainly suppressed her recovery during the first attack, as it likely does as well in many other dogs. Using lower doses not only stopped the attack faster, it left her stronger and in a much better position to fight back and become strong, which she has done quickly. More was not better! The risk was worth it! Dylan is back!
Even worse for Dylan and maybe others as well potentially, is the suggestion out of fear alone, that other drugs like cyclosporine must be used when in fact they may only complicate the picture in cases where they are not necessary. Drugs like cyclosporine being given because they are necessary is a good thing, but being given out of fear alone, maybe not. There is a negative impact of too much and too many drugs that must be considered. At no time did I want to add chemical stress if it was not necessary. The longevity and happiness of the remainder of Dylan’s life depend on making it through these attacks as quickly as possible and with the least stress possible. This is where my choices were completely unique it seems. I prefer minimal stress and minimal complications as a priority. As a result of this approach I have incredible clarity in how to treat each attack. No this approach is not possible for all dogs with IMHA, but it might be best for those who respond well to prednisone.
For SallySue and I, and many others I am sure too, it is the Love and Death of our dogs that can come to define our lives and the friendships we hold dear. In the end, the choices I make for the care and treatment of my dogs, or for the stress and suffering of my dogs and ultimately for the love and death of my dogs, may truly be unique to me and are my responsibility as their guardian. Although the choices others make are different from mine, hopefully they are unique to them and their dogs to provide the best possible outcome for them. I know their dogs are as special to them as Dylan and Bentley are to us. They all deserve every possible chance to be a happy dog again. These are not easy choices for any of us, but they are choices made with love, life and death in mind.
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