update on amber

[ddavey]

hello again    amber went for a follow up visit with the ep today.  we got back the holter results that her cardiologist ordered on aug 31.   the amount of pac's went up about 7,000    april holter was 20,484 (that was down from 30,000+ after start of digoxin)  she had unsuccessful right side ablation on 7/18 and now her pac's are 27,236   166 episodes of svt, with max duration of 5 beats     both monitor were 48 hrs.  that was a surprise, so we now know that all arrythmias are coming from the left, and he was very clear that it is too risky at this point to ablate on the left.  her cardio has increased her digoxin, hopefully with that the pac's will come down again.   even though the numbers are up again, she isn't getting hard beats, the flip flops she was getting that were really bothering her, and she has lost weight (which was all fluid retention from early heart failure) and looks very good.  so she is doing well, and that gives everyone time to figure out what to do about the left side, if they should look closer at the aneurysmal bulge at the mitral-aortic junction, or just bypass it and try to ablate on the left.     thanks again    dawn

[ddavey]

got a call from the ep's nurse friday (7:30 am!).    when we had left U of M on monday we had scheduled a 3D echo for march.  she called and said that dr bogun wants her back as soon as possible for the echo and not wait until march.   so we will go on wednesday.   it is interesting because i was speaking to his assistant on monday and she had mentioned that maybe the doctors in the septal defects and abnormalities division look at ambers tests to look at the aneurysmal bulge.  so here we go, i think.  i firmly believe that someone there will find out what to do here, and now that she is doing better we have the time for them to look at everything and either do something about the mass or ablate on the left.   the fun part of all of this for me is that i had arthroscopic surgery on my knee last week and driving her two hours to ann arbor has been quite an experience, AND her psych meds need to be adjusted so she isn't the most pleasant person to be around these days!  see what i mean about having a sense of humor!    i will keep everyone updated    thanks  dawn

[Happy2girls]

I was very touched by your posts.  Your daughters sounds like a real treasure (like mother, like daughter).  You are both very lucky to have each other.  

[ddavey]

thanks so much for the great responses.   when i go through the posts here and the heart support forum, i see people who are so anxious and worried about their pac's and pvc's and i hope that they read when i write posts about amber's difficulties.  she has a serious heart condition that does not in any way shape or control her life.  yes, i do all the worrying, but not to the point of all consuming, only enough to make sure we are doing what we can, working WITH her doctors and knowing when to say "it is what it is"  she lets me know when she feels something not right, and we make the call to the wonderful nurse at U of M and let them know.  i can't even begin to imagine what 27,236 pac's feel like, but i know that if they were driving her crazy, trust me, she would tell me and everyone around (when she gets into trouble she tells on herself!)   yes, she is developmentally disabled, but it is more like she will be forever 12 yrs old.  and if any of you remember what it is like to 12 or 13 you know they live for things to, forgive me, ***** about.   a sense of humor, and remembering not to dwell on the things that can't change goes an incredibly long way.          thanks all for the support    dawn

[kitcurious]

I always look out for your updates about Amber. It's great that she is feelinga bit better now. She is a lovely young lady and I trust that the doctors are going to do their best to make her much better .
Thank you for letting us know.

[Momto3]

Hi...Thanks so much for updating us on Amber.  I'm sorry to hear that the ablation for definitely not successful.  But, I'm happy to read that Amber looks and feels better.  I'm sure you carry the burden of worry for both of you.  Hang in there Dawn.  This new group of doctors seems to be on the ball and considering all options.  Taking it in baby steps is good given her complicated history seems wise.  If, at some point, they decide to entertain further treatment, it appears that Amber is in good hands at the U of M.  

Crossing my fingers that the Coreg helps to keep the symptoms and progression to a minimu.  Say HI to Amber from her friends on the forum.

Connie

[ireneo]

Very nice picture. She looks so healthy and happy but I know looks can be deceiving. I'm glad she's focused on the fun things in life.

I wish I had some useful input for you but my heart is almost normal compared to all she's got going on. At my worst time I only got up to 20,000 or so a day. I just have a couple thousand or less a day normally. That's nothing really. I do hope the newer doctors will keep thinking this over and not give up. Please stay in touch.

[ddavey]

thanks irene    this is all getting frustrating, because she was born with this defect, what they call for lack of a better word an anuerysmal bulge. the 60,000 dollar question is... is this defect causing the arrythmias that are causing the cardiomyopathy?  no one can give a definite answer, since they are not inclined at this point to do anything surgically to the defect, and they (at least the ep) don't want to take the risk to ablate on the left for risk of hitting the defect, which i don't quite understand because TEE and a wonderful new 3D echo at U of M has shown there is no blood flow in this mass.
he said yesterday that at this point they don't know if this has anything to do with the cm, so changing drs was good because she really is looking and feeling better, which gives us hope that in time they can figure out what to do before she builds up a tolerance to digoxin and begins to not do well again.  she is presently taking 50mgs of coreg, vasotec, inspra and the digoxin   4 heart meds and she is back up to 27,000+ pac's...   but she doesn't focus on any of this... she is more worried about the drama that goes on at her day program and watching "charmed" every day!!   thanks again   dawn      ps   that is amber's pic on my profile

[ireneo]

Thank you for updating us all. Looks like things are still not qute right and you face some serious decisions in the future. I'm glad to hear the pac's aren't hitting her as hard but too bad they're still there doing whatever they do. Glad to hear the fluid retention is under control. That's hard on the whole body. Is the aneurysm too large to "patch"? I think I read that in some cases they can put some kind of reinforcing patch on them instead of bypassing. I'm sure they've considered that by now. How are you holding up? It's quite an emotional roller coaster ride for you. Wish we could do more. Take care of Amber and yourself. Housework, weeds and phone calls can wait. Hugs to you both.