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Hi folks,
I know its been some time since Beverly or I have been able to give you an update on her status, but I had a little free time this morning and thought I'd check in with everyone.
Our family moved to Minnesota (from the Washington DC area) on August 30th, and on the 31st Beverly had an appointment to see Dr. Maron for a 3 month check-up. After her echo and blood work were done he told her that she was too sick to go home, so after living in Minnesota less than 24 hours she was admitted to the hospital. During her stay they took 8 pounds of fluid off of her and implanted an ICD. A few days later she went home.
Her first full day home she had walked up the stairs and was hanging up a towel in the bathroom when her ICD fired, then went on to fire a total of 10 times in the course of only a few minutes. Back to the hospital... up the beta blockers etc. After interrogation it was concluded that it had fired for sinus tach, so the nurse reprogrammed it and raised the threshold so that it wouldn't trigger so easily.
In the last two months she's been in the hospital 6 times, usually because its been so difficult to keep ahead of her fluid volume. She's listed for transplant and we're waiting for the call that they've found a heart for her. In the meantime she's able to do very little. She's on 250mg of Toporol XL, and an additional 125 to 200mg of Lopressor (depending on the day) just to keep her heart rate below 100. Needless to say with that much beta blocker shes tired all the time. She's also on Lisinopril (ACE Inhibitor), Aldactone, Lasix, and several anxiety and sleep drugs. One difference between Beverly and many other end-stage patients is that Beverly's heart muscle isn't thinning out and dialating like most others. The muscle is so heavy and dense with scar tissue that its staying thick.
On a positive note, my company has allowed me to work from home until after the transplant is done. I'm able to get kids on and off the school bus, and take care of Beverly while we wait for a heart to become available.
Please keep praying for Beverly and for our family.
Steve
I know its been some time since Beverly or I have been able to give you an update on her status, but I had a little free time this morning and thought I'd check in with everyone.
Our family moved to Minnesota (from the Washington DC area) on August 30th, and on the 31st Beverly had an appointment to see Dr. Maron for a 3 month check-up. After her echo and blood work were done he told her that she was too sick to go home, so after living in Minnesota less than 24 hours she was admitted to the hospital. During her stay they took 8 pounds of fluid off of her and implanted an ICD. A few days later she went home.
Her first full day home she had walked up the stairs and was hanging up a towel in the bathroom when her ICD fired, then went on to fire a total of 10 times in the course of only a few minutes. Back to the hospital... up the beta blockers etc. After interrogation it was concluded that it had fired for sinus tach, so the nurse reprogrammed it and raised the threshold so that it wouldn't trigger so easily.
In the last two months she's been in the hospital 6 times, usually because its been so difficult to keep ahead of her fluid volume. She's listed for transplant and we're waiting for the call that they've found a heart for her. In the meantime she's able to do very little. She's on 250mg of Toporol XL, and an additional 125 to 200mg of Lopressor (depending on the day) just to keep her heart rate below 100. Needless to say with that much beta blocker shes tired all the time. She's also on Lisinopril (ACE Inhibitor), Aldactone, Lasix, and several anxiety and sleep drugs. One difference between Beverly and many other end-stage patients is that Beverly's heart muscle isn't thinning out and dialating like most others. The muscle is so heavy and dense with scar tissue that its staying thick.
On a positive note, my company has allowed me to work from home until after the transplant is done. I'm able to get kids on and off the school bus, and take care of Beverly while we wait for a heart to become available.
Please keep praying for Beverly and for our family.
Steve
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