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Re: [FH] New Member - Restrictive Cardiomyopathy

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  • Jo
    Hi Hun, Here is my experience with RCM. My Ellie was diagnosed when she was 16 with severe RCM, after going in to CHF. The specialist said he had only ever
    Message 1 of 8 , Aug 21, 2013
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      Hi Hun,

      Here is my experience with RCM.

      My Ellie was diagnosed when she was 16 with severe RCM, after going in to
      CHF. The specialist said he had only ever seen 1 case worse, and the
      particular kitty only lived for about 6 weeks from diagnoses. I wasn't
      ready for my princess to leave me that quickly, turned out she wasn't ready
      to go either. I kept a diary of her resting and active heart
      rates/respiration rates, so I knew what was normal for her, as normal for a
      regular kitty was no longer in her range. Once I
      had a base rate of what she was happy and healthy at, then I could know when
      she went outside her "normal" range.

      We live in a very humid sub-tropical area, so it seemed logical to me that I
      needed to keep the atmosphere she lived in as free from humidity as possible

      She was an inside only cat which helped. I kept her in a permantly
      Air-conditioned house. In winter it can still be quite humid here, so I
      would run the air-con in dehumidify mode. I noticed that if for some reason
      I was late getting the air con on for the day, her respiration rate would go
      up.

      The only meds I gave her was Lasix and at times Potassium depending on her
      blood results. She took 5-10mg Lasix twice a day. I adjusted the dose
      depending on her resps and overall appearance. Weighing her was also
      important, often
      excess fluid could be picked up with an increase in her weight. That and
      accelerated breathing and some lethargy usually meant I would give her an
      extra one off dose of lasix. It was easy to use weight as an added guide
      for Ellie as she was only tiny and weighed about 3kg on a 'normal' day.

      We did try a potassium sparing diuretic, but she couldn't tolerate it, make
      her puke, so we stuck with the lasix regime.

      All during her illness she ate well and other than a little bit of extra
      sleeping, was pretty much the same kitty she had always been.

      She survived for nearly 3 years - and almost made it to her 19th birthday.
      It was obvious when it was time for her to be helped on. She lay down and
      stopped eating, drinking and toileting. I gave her 48 hours to be sure,
      but she made it obvious she wasn't getting back up, so we made that last
      trip to the vets.

      Our specialist was very surprised that she made as far as she did. Every
      checkup we would go in and he would just look at the both of us and shake
      his head. He was surprised she made it as long as she did, and pretty much
      said it was her will to live, as her heart really should have failed long
      before it did.

      I firmly believe that keeping her climate controlled was instrumental in
      keeping her alive and happy for so long. Being really aware of how she was
      and adjusting meds was also important.

      I'm not sure I have much more insight.

      Kitty hugs for you and Wendy
      Jo



      -------Original Message-------

      From: bspringsted425
      Date: 22/08/2013 6:44:19 AM
      To: feline-heart@yahoogroups.com
      Subject: [FH] New Member - Restrictive Cardiomyopathy

      Hi everyone. I just joined the group because 2 days ago my 11 year old cat
      was diagnosed with Restrictive Cardiomyopathy. I have done a lot of my own
      research on it, but I also like to know personal experiences too. There seem
      to be endless personal experiences of HCM to read about, but I haven't been
      able to find any at all about restrictive cardiomyopathy.

      I know that every single case is different, but its hard to accept this and
      deal with it when I can't even find out much about it.

      I took my Wendy to the vet two nights ago because she was having trouble
      breathing. She was alert and active, but she was taking deep but short
      breaths. In the bigger picture there didn't seem to be anything wrong with
      her, but I knew immediately that the breathing was an emergency. Two months
      prior to that I had taken her in for senior blood work because she had been
      losing weight, but that all came back normal. I guess I should have been
      mentally prepared for this because I knew the weight loss was odd, but I
      took comfort in the good blood work and didn't think beyond that at the time
      So the other night they drained fluid from around her lungs and heart and
      then she spent two nights in an oxygen tank. They ran a bunch of tests and
      Restrictive Cardiomyopathy was diagnosed. I was able to take her home today
      but I still have some questions that maybe some of you could answer since
      the vet's answers weren't entirely clear. Plus, I admit that I am so
      overwhelmed by this that I'm sure I didn't completely absorb every single
      thing the vet told me.

      Basically, she is now on three different medicines - Enalapril, Furosemide
      and Spironolactone. I was told that her heart rate is normal today, but that
      her heart is still having trouble pumping. Thats the part I don't understand
      - wouldn't that make her heart rate abnormal?

      When we first got the diagnosis, I thought that we were going to have to
      euthanize her, but the vet seemed to think that there was still life left in
      her and that she didn't seem like she was ready to die yet. My husband
      agreed, but even though she is my baby and the thought of losing her
      devastates me, I was the only one who thought that we SHOULD put her down.
      The thought of her suffering is more painful to me than the thought of her
      dying.

      Anyway, right now she's sitting a my feet as I type this and her breathing
      is still a little harsh - which the vet knew but apparently since her heart
      was functioning better thats why we could take her home.

      So I guess I'm just looking for any personal experiences. I'm terrified that
      she is going to collapse and die right in front of me. That happened with
      another cat of mine a few years ago. He was only two and had been living
      with undiagnosed HCM. Seeing him collapse and die was so traumatic that the
      idea of seeing that happen to another cat again seriously sends me onto the
      verge of a panic attack.

      So if you've had a cat with Restrictive Cardiomyopathy were you able to get
      her to the vet in time to have her humanely euthanized? Or did you have to
      deal with seeing her die right before your eyes. I'm sorry if that seems
      like an odd thing to be most concerned about but its what scares me the most
      I absolutely don't want her to die if she still has life left in her, but I
      also can't bare the thought of seeing her die right in front of me, in pain.

      Also, while i know every cat is different, I'm curious to know how long your
      cat lived after diagnosis.

      I'm really glad that I found this group and I hope I'll be able to learn
      something or at least curb the panic attacks that I'm on the verge of. Wendy
      was my very first cat. I thought that I hated cats until my roommate brought
      her to me. Now I have 11 cats - I've been taking in strays and socializing
      ferals for about 9 years now. Wendy is the one who taught me what cats were
      really like. She's the one who showed me that they are the best pets and
      that they have unconditional love for their humans.And when I went through a
      very rough time in my life a few years ago, Wendy was the comfort that I
      needed during that time. I love all of my cats and will be devastated to
      lose every single one of them, but losing Wendy is my worst fear. She is the
      reason I went from not liking cats to a complete crazy cat woman! She's such
      an important part of my life so to know that she's dying right now is so
      hard to accept and deal with. I can't even imagine my life without her now.
      I wish that there was some definitive timeline to know how much longer I
      have with her, but I guess all I an really hope for is just some personal
      experiences.



      ------------------------------------

      Your reply will go to the author of this message. If you feel your reply
      will benefit the entire group, please change the "To:" line to
      feline-heart@yahoogroups.comYahoo! Groups Links




      [Non-text portions of this message have been removed]
    • bubbacat12003
      I sent my email directly to bspringsted earlier, so just so Wendy s person doesn t get confused, there are two Jo s on this list. I m not sure I realized that
      Message 2 of 8 , Aug 21, 2013
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        I sent my email directly to bspringsted earlier, so just so Wendy's person doesn't get confused, there are two "Jo"s on this list. I'm not sure I realized that before :-)

        Jo, too!







        -----Original Message-----
        From: Jo <itsbacchus@...>
        To: feline-heart <feline-heart@yahoogroups.com>; bspringsted425 <bspringsted425@...>
        Sent: Wed, Aug 21, 2013 6:13 pm
        Subject: Re: [FH] New Member - Restrictive Cardiomyopathy






        Hi Hun,

        Here is my experience with RCM.

        My Ellie was diagnosed when she was 16 with severe RCM, after going in to
        CHF. The specialist said he had only ever seen 1 case worse, and the
        particular kitty only lived for about 6 weeks from diagnoses. I wasn't
        ready for my princess to leave me that quickly, turned out she wasn't ready
        to go either. I kept a diary of her resting and active heart
        rates/respiration rates, so I knew what was normal for her, as normal for a
        regular kitty was no longer in her range. Once I
        had a base rate of what she was happy and healthy at, then I could know when
        she went outside her "normal" range.

        We live in a very humid sub-tropical area, so it seemed logical to me that I
        needed to keep the atmosphere she lived in as free from humidity as possible

        She was an inside only cat which helped. I kept her in a permantly
        Air-conditioned house. In winter it can still be quite humid here, so I
        would run the air-con in dehumidify mode. I noticed that if for some reason
        I was late getting the air con on for the day, her respiration rate would go
        up.

        The only meds I gave her was Lasix and at times Potassium depending on her
        blood results. She took 5-10mg Lasix twice a day. I adjusted the dose
        depending on her resps and overall appearance. Weighing her was also
        important, often
        excess fluid could be picked up with an increase in her weight. That and
        accelerated breathing and some lethargy usually meant I would give her an
        extra one off dose of lasix. It was easy to use weight as an added guide
        for Ellie as she was only tiny and weighed about 3kg on a 'normal' day.

        We did try a potassium sparing diuretic, but she couldn't tolerate it, make
        her puke, so we stuck with the lasix regime.

        All during her illness she ate well and other than a little bit of extra
        sleeping, was pretty much the same kitty she had always been.

        She survived for nearly 3 years - and almost made it to her 19th birthday.
        It was obvious when it was time for her to be helped on. She lay down and
        stopped eating, drinking and toileting. I gave her 48 hours to be sure,
        but she made it obvious she wasn't getting back up, so we made that last
        trip to the vets.

        Our specialist was very surprised that she made as far as she did. Every
        checkup we would go in and he would just look at the both of us and shake
        his head. He was surprised she made it as long as she did, and pretty much
        said it was her will to live, as her heart really should have failed long
        before it did.

        I firmly believe that keeping her climate controlled was instrumental in
        keeping her alive and happy for so long. Being really aware of how she was
        and adjusting meds was also important.

        I'm not sure I have much more insight.

        Kitty hugs for you and Wendy
        Jo



        -------Original Message-------

        From: bspringsted425
        Date: 22/08/2013 6:44:19 AM
        To: feline-heart@yahoogroups.com
        Subject: [FH] New Member - Restrictive Cardiomyopathy

        Hi everyone. I just joined the group because 2 days ago my 11 year old cat
        was diagnosed with Restrictive Cardiomyopathy. I have done a lot of my own
        research on it, but I also like to know personal experiences too. There seem
        to be endless personal experiences of HCM to read about, but I haven't been
        able to find any at all about restrictive cardiomyopathy.

        I know that every single case is different, but its hard to accept this and
        deal with it when I can't even find out much about it.

        I took my Wendy to the vet two nights ago because she was having trouble
        breathing. She was alert and active, but she was taking deep but short
        breaths. In the bigger picture there didn't seem to be anything wrong with
        her, but I knew immediately that the breathing was an emergency. Two months
        prior to that I had taken her in for senior blood work because she had been
        losing weight, but that all came back normal. I guess I should have been
        mentally prepared for this because I knew the weight loss was odd, but I
        took comfort in the good blood work and didn't think beyond that at the time
        So the other night they drained fluid from around her lungs and heart and
        then she spent two nights in an oxygen tank. They ran a bunch of tests and
        Restrictive Cardiomyopathy was diagnosed. I was able to take her home today
        but I still have some questions that maybe some of you could answer since
        the vet's answers weren't entirely clear. Plus, I admit that I am so
        overwhelmed by this that I'm sure I didn't completely absorb every single
        thing the vet told me.

        Basically, she is now on three different medicines - Enalapril, Furosemide
        and Spironolactone. I was told that her heart rate is normal today, but that
        her heart is still having trouble pumping. Thats the part I don't understand
        - wouldn't that make her heart rate abnormal?

        When we first got the diagnosis, I thought that we were going to have to
        euthanize her, but the vet seemed to think that there was still life left in
        her and that she didn't seem like she was ready to die yet. My husband
        agreed, but even though she is my baby and the thought of losing her
        devastates me, I was the only one who thought that we SHOULD put her down.
        The thought of her suffering is more painful to me than the thought of her
        dying.

        Anyway, right now she's sitting a my feet as I type this and her breathing
        is still a little harsh - which the vet knew but apparently since her heart
        was functioning better thats why we could take her home.

        So I guess I'm just looking for any personal experiences. I'm terrified that
        she is going to collapse and die right in front of me. That happened with
        another cat of mine a few years ago. He was only two and had been living
        with undiagnosed HCM. Seeing him collapse and die was so traumatic that the
        idea of seeing that happen to another cat again seriously sends me onto the
        verge of a panic attack.

        So if you've had a cat with Restrictive Cardiomyopathy were you able to get
        her to the vet in time to have her humanely euthanized? Or did you have to
        deal with seeing her die right before your eyes. I'm sorry if that seems
        like an odd thing to be most concerned about but its what scares me the most
        I absolutely don't want her to die if she still has life left in her, but I
        also can't bare the thought of seeing her die right in front of me, in pain.

        Also, while i know every cat is different, I'm curious to know how long your
        cat lived after diagnosis.

        I'm really glad that I found this group and I hope I'll be able to learn
        something or at least curb the panic attacks that I'm on the verge of. Wendy
        was my very first cat. I thought that I hated cats until my roommate brought
        her to me. Now I have 11 cats - I've been taking in strays and socializing
        ferals for about 9 years now. Wendy is the one who taught me what cats were
        really like. She's the one who showed me that they are the best pets and
        that they have unconditional love for their humans.And when I went through a
        very rough time in my life a few years ago, Wendy was the comfort that I
        needed during that time. I love all of my cats and will be devastated to
        lose every single one of them, but losing Wendy is my worst fear. She is the
        reason I went from not liking cats to a complete crazy cat woman! She's such
        an important part of my life so to know that she's dying right now is so
        hard to accept and deal with. I can't even imagine my life without her now.
        I wish that there was some definitive timeline to know how much longer I
        have with her, but I guess all I an really hope for is just some personal
        experiences.



        ------------------------------------

        Your reply will go to the author of this message. If you feel your reply
        will benefit the entire group, please change the "To:" line to
        feline-heart@yahoogroups.comYahoo! Groups Links




        [Non-text portions of this message have been removed]








        [Non-text portions of this message have been removed]
      • bspringsted425
        Wow - thank you for the responses so far! I wish I had found this group two nights ago. I think I just got more info from here than I did in 2 days of google
        Message 3 of 8 , Aug 21, 2013
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          Wow - thank you for the responses so far! I wish I had found this group two nights ago. I think I just got more info from here than I did in 2 days of google searches. And honestly - I already feel better. Again, I realize each situation is different, but it was getting really frustrating that I couldn't find any personal experiences about this particular type of cardiomyopathy. I'm a person who likes to know as much as I possibly can about things like this, but I also really like personal experiences because doctors can say a lot, but in the end, I know that not everything a doctor says will necessarily be true. (and I don't mean that I don't trust doctors - just that the average experience is just that - the average. I like to hear all possibilities and I often trust personal experiences a little more than a textbook answer.)

          So with that being said, it does make me feel better to hear about other people who have gone through this. I seriously think my anxiety level has decreased a bit just from reading your responses so thank you for that! I'll try to respond to everything without forgetting something:

          First, yes the blood tests included a thyroid test. I actually asked about that when I picked Wendy up this afternoon because my googling had taught me that thyroid disease can lead to heart disease and if the thyroid can be managed then there is a chance of the heart disease going away. I was hopeful that that might be the case, but its not. Wendy had blood work done about 7 weeks ago because she was due for a checkup, but also because she was losing weight and I was worried about that. The vet actually suspected the thyroid at that point and told me that thyroid disease is the most common reason for weight loss in older cats with kidney failure coming in a close second. But her blood tests were all within normal range. They didn't recheck her thyroid 2 nights ago and when I asked about it today, I was told that because she had already lost so much weight by that point 7 weeks ago, and because she's at a pretty advanced stage of heart disease, its not likely that in 7 weeks her thyroid suddenly stopped working correctly and caused all of this. She basically said that the timing just wouldn't work out. If she had only lose weight within those 7 weeks then there might be a possibility of it being the thyroid, but I guess her symptoms that were presented almost 2 months ago were enough to rule out the thyroid now. However, if anyone has had an experience where the thyroid DID start malfunctioning within a 7 week time period, I'd like to know and I'll ask to get it retested. But her weight loss was my main concern then and that seems to be one of the most tell tale signs of this disease so I'm inclined to think that the vet is probably correct in saying that the heart disease is primary and not secondary :-(.

          We're lucky in the sense that our vet here does everything.The clinic itself has about 10 doctors and they do everything in this area. They're the regular vet, the emergency vet, the cardiologist, and most other specialty doctors. So as far as going to a cardiologist, the only one that I know of in this area already works at the vet clinic that I go to, which is lucky because he was able to examine Wendy just a few hours after I had brought her to the emergency vet. When he came in at 8 the next morning, she was first on his list. Where we lived before here we weren't so lucky. The emergency vet was 45 minutes away and the cardiologist was 2 hours away. So I guess I'm lucky that this happened now and not two years ago. (I've had other cats checked for possible heart problems hence why I know it took two hours to get there!)

          I really like the idea of keeping a journal of her heart rates and I will be starting that as soon as I send this message. I like the idea because I can already tell that the medicine is working at the moment, but that she still isn't "normal". I misread the time that her last dose of medicine was given at the vet so I was an hour and a half late giving it to her myself. She seemed like her breathing was starting to get worse, so I panicked, but then I looked at her discharge instructions more closely, and realized that I was the one who screwed up, so I immediately gave her the Furosimide (which they have me giving every 12 hours, but the other two are every 24 hours). Within 30 minutes I could see her breathing start to balance out again. I feel beyond awful for giving it to her late, but on a positive note, I guess that means that it works really quickly. However, I can still see that her breathing isn't "normal" but its definitely better than it was before I gave her the medicine and better than it was two nights ago. So I guess now I need to keep track of what is normal for her and make sure I don't mess up my times ever again. (on a side note, am I right in assuming that it was the medicine that worked that quickly? I was a little surprised but grateful if it did! I'm just not sure if I imagined it or read into it too much.)

          So again, thank you for your responses. I'm feeling a little better now and trying to calm myself down. I don't want her to see me so stressed out. She has actually been the cat who has always comforted me when I was stressed or upset so I know that she can definitely sense it. She has always known when I needed her to be near me, but now I don't want her to have to comfort me because I'm stressed out about her you know?

          I'm enjoying the time I have left with her though. She's always been a very clingy cat, which at times can be a little annoying. I can't even count the times I have just wanted to sit down and be completely alone just for a few minutes, but Wendy is on my lap before I even finished sitting. Or how many times I just want to eat my dinner without a cat in my lap. Or other moments like that. I have taken her out of my lap countless times over the years, and then battled with her to attempt to just have some personal space for a few minutes. And before you think I am a horrible person - I promise that she has spent the majority of that time on me. I do like her company and her snuggling and her love so I am not constantly throwing her off of me, but it does happen somewhat frequently mainly because she won't ever detach herself from me. So my point is, for the past two-ish hours I've been sitting at the computer with her in my lap. She was at my feet initially but then she climbed up on me and fell asleep. Both of my legs are numb and in a few minutes I am going to have to get up to get something to eat. In the past, this would have been a time where I would have forced her to get off of me sooner. But I'm so upset about the thought of losing her that I've decided that as of right now, she can make my legs go numb as often as she wants. She can lay on my arm to the point where I can't use it to do anything as often as she wants. As far as I'm concerned, I feel awful about EVER pushing her off of me, so for the rest of her life she can lay on me whenever she wants. Its amazing what I feel guilty about because I know that most people need some space occasionally and wouldn't hesitate to push a cat off of them, but now I feel guilty for ever doing it. Now I can't imagine not treasuring these moments with her ♥.

          Thank you again for the responses. I don't wish this on anyone, but at the same time it's oddly comforting to know that other people have gone through the same thing as me.
        • bspringsted425
          Hi everyone. First, I have to apologize for posting on here and then disappearing for a few days. The responses I got to my initial post were so wonderful so I
          Message 4 of 8 , Aug 26, 2013
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            Hi everyone. First, I have to apologize for posting on here and then disappearing for a few days. The responses I got to my initial post were so wonderful so I have to thank you all for that. This groups is already helping me feel better mentally. I just hadn't posted for a few days because I felt mentally exhausted and needed to just NOT write or talk about Wendy for a little while. But at the same time, its very helpful - both mentally and intellectually, to know that other people are going through, or have gone through, this same process.

            I got a few personal responses to my initial post that I don't think posted to the whole group, and one asked me if I knew that thyroid numbers from Wendy's blood tests. I called the vet that day to ask, and she said 1.3. She said that under 4 was considered normal range, but the person who responded to me (I'm sorry I don't remember who it was offhand) said that 2.5 or above could be thyroid disease in senior cats. She asked me to post the numbers for the whole group. So I'm guessing that I'm out of luck for it being a thyroid problem? 1.3 seems like its within normal range for any cats :-(.

            I do have a couple questions though. Yesterday, Wendy had a GREAT day. She was active, alert and if I didn't know that she was in heart failure, I would have never thought that anything was wrong. The days before that though, were stressful. She seemed lethargic and just not well. I was starting to wonder if she would ever feel any better at all, when she suddenly perked up yesterday. This morning was also really good. But then tonight,she seemed to crash a bit. I noticed her breathing was becoming labored again, so I called the vet and they told me to bring her in. Her respiratory rate was 52, but her gums were bright pink. They said she was struggling to breathe but wasn't in distress. The vet basically described it as "shes getting the air that she needs. Its just becoming hard for her to do." She gave her a shot with a higher dose of Furosemide and within minutes she was breathing normally again. She also told me to increase her dose of Furosemide from twice a day to 3 times a day. At the moment, she seems comfortable and content.

            So I guess my questions are - I know its normal to tweak medicines until we figure out what works for her, but is it normal to have an okay week, and then need a medicine increase in just a week? I'm wondering if she's going downhill faster than I realized or if its somewhat standard to do some medicine changes within a week of diagnosis. When I took her home last week they told me they wanted to see her back in 30 days to monitor her progress so I was a little surprised that we already needed to go back in just a week later. Also, will she ever feel better? I'm not quite sure how to ask exactly what I'm trying to say. I know that she'll never be cured. So I know that she'll never technically get better. But I want to know if she's ever going to feel better, or if she is just going to seem tired and weak until the very end. Yesterday was great and I thought that she was starting to feel better, but then today was a bad day. I guess I'm just wondering if its selfish of me to keep her alive if she isn't feeling well, so I'm curious to know if the right medicines will eventually start to just make her feel somewhat ok again.

            Thanks everyone.

            Brooke (sorry that I never really introduced myself when I joined, but my name is Brooke :-))
          • elfinmyst
            Hi Brooke We ve all been through that, where they have to tweak the medications and add more until they get the balance right. If she crashed so quickly, she
            Message 5 of 8 , Aug 27, 2013
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              Hi Brooke

              We've all been through that, where they have to tweak the medications and
              add more until they get the balance right. If she crashed so quickly, she
              may need to add another medication to help the heart and it is good the
              diuretic is every eight hours. That should help.

              My heart cat Trixi, had a heart attack several years ago and was given no
              chance to survive and was given vetmedin (pimobendan) as a trial. It took
              over a week for her to start to feel better, but during that time we had to
              drop the dose of benazepril as her blood pressure dropped too low and we had
              to stop aspirin as it made her sick and also increase the lasix. You did
              well to spot the change in breathing and get quick action.

              Lyn

              _www.myfurkids.co.uk_ (http://www.myfurkids.co.uk/)

              [Non-text portions of this message have been removed]
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