Last Thursday was a long day driving, doctors appointments; but a positive one albeit. And I was the one giving this time, instead of receiving.
I'm not sure that Ive mentioned one of my siblings is struggling with a life threatening condition. Eddie, my younger brother by about 11 years (there are 8 of us!!), was diagnosed with Cardiomyopathy, and serious heart failure in early October. We all rushed to his side when he was air transported from Crescent City to California Pacific Medical Center (CPMC) in San Francisco. At that time, he was hanging on by a very thin thread.
After over a month of hospitalization, many tests and procedures to bring back most of his other failing organs, fine tuning his medications, caring for a recent broken ankle with metal pins in it, and much more, he was finally discharged. Our sister and her husband, Nancy & Nat, so graciously offered their home as a temporary recovery station for Ed so he would be close to his doctors. At least I think we all thought it was temporary at the time of discharge. Ed also planned to relocate to the Bay Area when able to get himself situated on his own soon thereafter. So he's been with Nancy for about 3 months now.
And the result of all the hospital tests is serious, non-reversible, heart failure. The kind that requires a heart transplant once insurance allows the procedure. So Ed was discharged from CPMC with a Groshong catheter so that he can have a continuous infusion of Melrinone from home, which is a medicine to help his heart continue to function. The medication is administered continuously via a pump system that he wears in a back pack.
Ed was also discharged with a Zoll Life Vest, which is a wearable defibrillator worn by patients at risk for sudden cardiac arrest (SCA). The website states that the LifeVest allows a patient’s physician time to assess their long-term arrhythmic risk and make appropriate plans. Although Ed's cardiologist would disagree somewhat about this. He is very adamant to explain why we do not want our politicians involved in health care decisions. You see, the only reason Ed is wearing this vest, rather than having a device implanted into his chest, is because insurance does not believe that a cardiologist would make this decision wisely and so has Ed waiting months for the implant. Even though there is absolutely no chance of his heart improving and the implanted defibrillator not being needed after all. But thankfully, it is nearing the time for this implant to occur and we are just waiting for the word from his doctor.
Ed was also discharged with a Zoll Life Vest, which is a wearable defibrillator worn by patients at risk for sudden cardiac arrest (SCA). The website states that the LifeVest allows a patient’s physician time to assess their long-term arrhythmic risk and make appropriate plans. Although Ed's cardiologist would disagree somewhat about this. He is very adamant to explain why we do not want our politicians involved in health care decisions. You see, the only reason Ed is wearing this vest, rather than having a device implanted into his chest, is because insurance does not believe that a cardiologist would make this decision wisely and so has Ed waiting months for the implant. Even though there is absolutely no chance of his heart improving and the implanted defibrillator not being needed after all. But thankfully, it is nearing the time for this implant to occur and we are just waiting for the word from his doctor.
So we are in the wait and see mode, since insurance also requires that Ed must wait six months to receive his heart transplant. I am able to help out by taking him to his appointments in San Francisco which have been bi-weekly since discharge. But that frequency may stretch out to a month here soon.
Needless to say, this whole scenario was very shocking to all of us, but especially Eddie.You see, my older brother Richard died of heart rejection from a transplant that he received when he was 31. His diagnosis was similar to Ed's and so far the doctors believe that this may be hereditary. Rich's transplant gave him another 9 years and he passed away at the age of 40. So you can well imagine that each of us are talking to our doctors about getting and echocardiagram, as Ed's cardiologist has recommended.
I, for one, had a Muga Scan about 1 year ago in preparation for chemo and the damage it can cause to the heart. At the time, my ejection fraction was within normal ranges. But you can imagine that this will be one of the things I again discuss with my PCP when I see him next month, just to be sure.
Each visit with Ed he seems a bit stronger and more himself. But he has quite a long road ahead of him. He is still very weak and frail. And all the medications, and fluid restrictions are very hard. I also know it is very hard having his teenage daughter so far away and not able to visit during his illness. I can't imagine how that would be for me.
For now, it feels good to give back a bit by helping Ed and getting to spend the time with him. I hope and pray that he continues to improve, and that all goes well with the procedures he has in front of him over the next few months.
I, for one, had a Muga Scan about 1 year ago in preparation for chemo and the damage it can cause to the heart. At the time, my ejection fraction was within normal ranges. But you can imagine that this will be one of the things I again discuss with my PCP when I see him next month, just to be sure.
Each visit with Ed he seems a bit stronger and more himself. But he has quite a long road ahead of him. He is still very weak and frail. And all the medications, and fluid restrictions are very hard. I also know it is very hard having his teenage daughter so far away and not able to visit during his illness. I can't imagine how that would be for me.
For now, it feels good to give back a bit by helping Ed and getting to spend the time with him. I hope and pray that he continues to improve, and that all goes well with the procedures he has in front of him over the next few months.
Hugs,
Debbie... aka the cancer warrior ... AND SURVIVOR!!!
LIVESTRONG:
I AM STRONG. I AM LOVED. I AM HEALTHY!
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