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janey

Cardiac Ablation And Meds Decision

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Hello My Friends,

Well after researching and discussing my options with doctors and all of you (your feedback was extremely helpful - THANKS!), I've decided to start Cellcept instead of going back on cytoxan in either form. I could tell my rheumatologist was displeased, but it's my body, not his. So I'll start it Monday.

 

In the meantime, my cardiologist has determined that I have intermittent atrial fibrillations, and a constant atrial flutter. The flutter can't be controlled by meds or the pacemaker, only by ablation. SO - I go in Friday for a cardiac ablation to get rid of the flutter. He says it's a "permanent fix" (can I hold him to that?) and that it will improve my quality of life. That one - I'm definitely holding him to! :)

 

My PFT this week showed decreasing lung function, but neither I nor the pulmonary doctor give the results much merit because I coughed the whole time. Taking a deep breath makes me cough, so as you all know - it's hard to do a PFT if you can't take a deep breath and hold it. :blink: Anyhoo - my pulmonary doctor is going to refer me to a lung specialist in Denver. That way the insurance pays for it. More on that to come. One thing at a time.

 

And the beat goes on and on and on!

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I am sure you feel better having made the decision which we all trust is the right one for you. As for the ablation, I hope it does the trick. Quality is everything. As you say, one step at a time.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Janey,

 

It must feel good to know you now have a plan. Indecision is worse than no decision at times.

 

I will keep you in my thoughts hoping the cellcept does the trick! Please pop in (as I know you will) to let us know how the ablation goes.

 

love ya,


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Janey,

 

Wow! You sure have a lot going on! I am glad to hear that some decisions and movement has been made...I think being in the "not sure which way to go" stage is so frustrating. I certainly hope the cellcept works well for you and that the ablation goes smoothly on Friday and is a permanent fix and totally increases your quality of life! You will be in my thoughts. And, do keep us posted on the pulmonary specialist in Denver.

 

Warm wishes,

Heidi

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Hey Janey,

I am glad you have made a decision about the cellcept. If it doesn't work, you will always have the option for cytoxan in the future.

 

You will do just fine with the ablation. I noticed an immediate result. Now that I having palpatations again and being lightheaded we are not sure if it is my heart or my lungs, or both. Hopefully yours will be a permanant fix!

 

I'll be thinking of you on Friday.....

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Lisa,

So what did you hear back about the Holter monitor data? Did it identify your palpatations? frequent, occasionally or all the time?

 

I know what you mean about - is it the heart or the lungs? The reason why my cardiologist doesn't want to ablate the fibrillations is because he says they are probably due to my lungs problems so we need to deal with the lungs first. UGH! He also thinks we can control them with meds and pacemaker. I was hoping to be able to get off those meds! Oh Well. Hopefully, they'll find the cause of your palp and light-headedness really fast and fix it. It's a constant cause and effect exercise isn't it?

 

Thanks everyone!

 

Big Hugs, Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey,

 

I am sorry that you are having problems with intermittent atrial fibrillations, and atrial flutter that can't be controlled by meds or the pacemaker. I hope that the cardiac ablation works well and is a permanent fix. Let your doctor know that we are all holding him to his promise of an improved quality of life.

 

I recently began having problems again with atrial fibrillations and atrial flutter after three years. My cardiologist is trying the meds that worked for me before.

 

Best wishes,


Ron

 

Updated 8/10/07: Mixed Connective Tissue Disease (dx 03/2002). Diffuse Scleroderma, Dermatomyositis.

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Janey!

I am glad you made your decision. What a load off your back. I see doctors in Denver. Will you be going to National Jewish? Please let me know. I see two great lung doctors in Denver as well as my sclero expert. I too take Cellcept.

Jen

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Hi Janey,

 

My goodness, that's a lot to deal with at once, and a lot of decisions made. I'm happy for you as all the steps sound like they will be an improvement. And getting a permanent fix for fluttering, that sounds terrific!!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Janey,

It sounds like a good path to take. Having weighed this all heavily, you must be relieved this is moving forward.

Just know you have the "Sclero Squad" rooting for you :rolleyes:

You'll be close in my thoughts, my friend!

 

Special Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Janey ,

 

Just wanted to wish you well for Friday. I have no clue what ablation for the heart is about but it sounds like a 'rooto rooter (sp)' job for the heart!!!

 

You'll be in my thoughts,

Margaret

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Guest Sherrill

Janey,

 

It's very hard making these sorts of decisions! I've made a few myself! Good on you, and I hope it all turns out exceptionally well for you! All the best with the cardiac ablation too on Friday!

 

My grandmother said her mother used to say "it's a long road which doesn't have a turning", and I hope that is true for you in the best possible way!

 

Warm hugs,

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Guest Sherrill

Lisa,

 

Your palpitations and light headedness........... just a thought....... have you had your hemoglobin tested recently? I know that I get these symptoms when I am anemic. Just a thought anyway.

 

Warm hugs,

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Janey,

WOW! That is a lot to deal with at one time. I know that you feel good having made a decision, so now you can move forward. I will be thinking of you on Friday.

Nan

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Janey, I haven't posted in so long, but I just had to reply to this one and wish you the best of luck on Friday. I will be sending good thoughts your way, count on it! I was also faced with decisions re; meds and procedures (as most of us have been) and have been OK taking Cellcept for almost 2 years. I haven't had any bad side effects and my lungs have not shown any progression. According to my pulmy, other sclero affected patients he is seeing have shown improvement on Cellcept. I hope that is the case for you.

You have my best wishes!

Meg

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