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connie r. Recipient

reply re lvad carry bag

Sat, 12/08/2012 - 4:00PM

Thanks, Ken. I've sat on the floor, too, when I have to wait in a long line at the store.

I even unstrap The Bird (I call it the albatross!) & set it on the upper shelf of the grocery cart, to relieve the weight. Of course, I have to be very careful of the lead, so I don't do something stupid. I watch out for what other people are doing, too.

The rehab therapist would have a fit if she knew I do that, but I'm careful.

Connie R.

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connie r.

Wed, 08/07/2013 - 1:43PM

I will always remain with ccTGA. (Heart is built completely backward.)

I was very sick for nearly 4 years, and almost died half a dozen times in 2010, from CHFIV and PE (congestive heart failure, Stage IV, which is the worst and pulmonary edema.) I had to go to ER numerous times in 2010 to have fluid drained from my lungs with IV Lasix. I was turned down for transplant, after being evaluated for 3 years, and also was told "You don't want lvad," by the chief of the lvad department at the clinic where I had always gone since I was a child. Then I learned about a good surgeon in Utah who placed the pump, after doing many corrections to my very bad heart. He also placed mechanical aortic and pulmonic valves. I also did 15 weeks (3 times each week) of rehab post-surgery, which helped to strengthen my heart and body. By this coming Nov. I will have had the lvad for 3 years.

In June this year I had my regular, 1-year checkup with the surgeon, and he told me that my heart is beating very well. He said some people can have the pump taken out.

Now I walk fast for a mile every day, then walk up 50 steps.

I feel great, and I'm hoping that by next June I'll be able to have the lvad taken out.

This is not a cure. It is a treatment which has helped the heart to improve and get stronger.

Even if the lvad is taken out, I will still have the same symptoms that I've always had, primarily shortness of breath, but it shouldn't become debilitating like it was prior to the lvad surgery. I hope that the ventricle won't enlarge again, and that everything will remain stable from the surgery and the pump. I also will remain on most of the heart med's that I currently am on.

If you would like to have any more information, please contact me again.

Thank you for asking. I hope this has helped.

Connie

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connie r.

Thu, 09/11/2014 - 10:29AM

No, I'm not suffering from any disease, fortunately.
I'll never be cured from the birth heart defect.
Also, I recently learned from the lvad surgeon that the pump will not be removed, so I will have it for the rest of my life. Tech's have already made a smaller controller to run it, but it is as hot (maybe hotter) as the original one.
I hope they will develop lighter batteries, as the bag is still very heavy and bothersome.
I hope you can get relief sometimes from your duties as a caregiver.

Best,
Connie