Jump to content


Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Photo

Cardiac Rehab


  • Please log in to reply
14 replies to this topic

#1 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 15 April 2008 - 09:09 AM

Just a catch-up note: Overall it's been a good year FINALLY. Nothing new happening, lots of stability and even some improvement in lung function and pulmonary artery pressure. My main problem has been the shortness of breath with mild exertion. I'm constantly checking my heartrate and it's always at 70 bpm no matter what I'm doing! My cardiologist kept attributing the problem to my lungs and said there was nothing more he could for me. That was the comment I needed to switch doctors.

So a few weeks ago I saw a new cardiologist who's specialty is electro physiology, exactly what I need since my heart problems are all conductive. She looked through the records I brought in and immediately said that my heart problems where independent of my lungs. Long story short - she discovered that the sensitivity on my pacemaker was too low and it could not sense movement; therefore, it kept my heart beating at the minimum rate of 70 bpm. She has since adjusted the sensitivity level twice and I already feel the difference. It's not perfect, but MUCH better. At least now I can move from the kitchen to the bathroom without gasping for air and get the newspaper out of the driveway without going into a coughing fit.

She signed me up for 3 months of cardiac rehab. I start Friday. Apparently they will find a program that works for me and my pacemaker so I can start exercising again. The doctor at rehab will also make additional pacer adjustments if I need them. I'm so excited! The weather has finally turned warm and gorgeous and I want to start walking again. Please keep your fingers crossed that this works!

Big Hugs to you all,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,261 posts
  • Location:Minnesota

Posted 15 April 2008 - 09:22 AM

Hi Janey,

What fabulous news! And kudos to you for changing doctors when it became apparent they were barking up the wrong tree. The rehab will be great as you will then know exactly what you can (and can't!) do for exercise. Gene went through pulmonary rehab many years ago and still benefits from what he learned in it.
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.

#3 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 15 April 2008 - 09:40 AM

Hey Janey

That is just fantastic...good for you on all accounts!! I'm very happy and excited for you!
Sending good wishes your way!

#4 Margaret

Margaret

    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 997 posts
  • Location:Pennsylvania

Posted 15 April 2008 - 09:54 AM

Hi Janey ,

That is great that the new doctor has helped you so much, so quickly. Isn't it sad that we put so much trust into our physicians *thinking* they know what is right and are doing the right thing. Glad you made the switch.

Take care, Everyone.
Margaret

#5 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 15 April 2008 - 10:14 AM

Janey... I am so happy you now have a cardiologist who actrually looked at what was going on and has you on a better track. Good for you.... and the doctor!

Just in time for the beautiful days to come!

Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#6 Guest_Sadie_*

Guest_Sadie_*
  • Guests

Posted 15 April 2008 - 11:08 AM

Hi Janey, That is great news! I'm glad you got a new Dr!
Best of luck!
Sadie

#7 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 15 April 2008 - 11:11 AM

Janey, how did you know to go to a doctor with that speciality? Or was it by chance she happened to be a specialist that knew what needed to be done for you? I am so happy you decided to change doctors. I always worry about changing doctors since most of my records are for many years. I figure they might not send all my records. I guess that shouldn't be a worry for any of us. Change does help. I am so happy for you.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#8 janey

janey

    Platinum Member

  • Topic Starter
  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 15 April 2008 - 12:26 PM

Thanks everyone! You are all so wonderful!

Sheryl,
When I was diagnosed with complete heart block in January 2005, I was sent to an Electro physiologist (EP) by my rheumatologist. Since I wasn't able to decide for myself at that moment in time, he picked out the cardiologist with an EP specialty. That's when I learned what it was. I did ask my rheumatologist for a recommendation for a new cardio and he gave me 3 names. Two were EP's and one wasn't so I chose the EP with the most experience. I also have atrial fibrillations, so lots of conductive problems.

As far as the records are concerned, I get copies of everything. I took her in the last 2 years of pfts, ECHOs and pacer checks. That seemed to be all she needed.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#9 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 15 April 2008 - 12:32 PM

Janey,

Wow, sounds like you may be headed down a better road! I'm happy for you. I really hope the rehab helps. Thanks so very much for the update.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 Clementine

Clementine

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 684 posts

Posted 15 April 2008 - 03:07 PM

Janey,
This is great news. I am so happy to hear that you can walk further and not be so winded.
I can really relate. I LOVE your new Dr. for figuring out your problem.
Thanks for being such an inspiration to me and everyone else. I love the way you take control of your health.
Jenxo

#11 Annie N

Annie N

    Senior Bronze Member

  • Members
  • PipPipPip
  • 79 posts
  • Location:Connecticut

Posted 15 April 2008 - 03:12 PM

Wow Janey, you are a great example for the rest of us to be assertive with our medical care. I'm so glad you got to bottom of your problem!
:)
Annie

#12 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 15 April 2008 - 08:37 PM

I am so glad you are finally getting these things sorted out. It must have been frustrating trying to figure out why the rate wasn't changing. Sometimes technology is just too good for our own good!
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#13 Karenlee

Karenlee

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 381 posts
  • Location:Long Island, New York USA

Posted 16 April 2008 - 01:17 AM

Janey,

Glad to hear you are on the right track. The right Dr. can make all the difference and it's a shame we have to deal with the bad ones to find the good ones, but they are out there.

Take care,
Karen

#14 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 16 April 2008 - 03:14 AM

Hey janey,
I hope cardio rehab is a good experience for you. My pulmonary rehab was along side many cardio patients. We exercised together... good stuff.

peanut.

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#15 Lady Deb

Lady Deb

    Bronze Member

  • Members
  • PipPip
  • 21 posts

Posted 16 April 2008 - 12:41 PM

I'm very happy that you have a doctor who can help you. It gives us all encouragement to be advocates for ourselves. Thanks for being such a great role model for us.! :lol: