calling all Yanks...

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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ROBO Pop
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calling all Yanks...

Post by ROBO Pop » September 24th, 2018, 10:35 am

any of you statesiders know whether having your Jesus Jolt Generator (defibrillator function) shut off voluntarily will affect medical insurance, specifically Medicare and Medigap (supplemental) coverage?
Broken Heart
Nobody has ever survived life, but I'm trying...
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http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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Melissa
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Re: calling all Yanks...

Post by Melissa » September 25th, 2018, 7:08 pm

I don't know that answer to that, but I don't know why it would.
Melissa - dx cardiomyopathy in 2004 due to childhood chemotherapy; Boston Scientific CRT-D implanted 8/10, meds: Toprol XL 100mg/day, aldactone 25mg/day. Second ICD implanted 3/18, also Boston Scientific CRT-D

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KansasAl
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Re: calling all Yanks...

Post by KansasAl » September 25th, 2018, 9:05 pm

On the surface I agree with Melissa. Thinking a little deeper the home team in Congress will stop you as they would consider that a late term abortion (in your case a late, late,late term abortion) and if the away team takes over shortly they will stop you as they need your help to bankrupt Medicare.

So I'm thinking you should just think about how to make your C-PAP, BI-PAP or uni-tard work for you.

Leedur
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Re: calling all Yanks...

Post by Leedur » September 26th, 2018, 1:02 pm

Would have to wonder if a Life Insurance company could consider this as suicide and possibly deny your beneficiary. Think I would get a doctor's excuse for your pending absence.

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Jeanneinca
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Re: calling all Yanks...

Post by Jeanneinca » September 27th, 2018, 12:35 pm

Robo--Last time I had the replacement surgery I requested that I NOT have a CRT and just have a pacemaker installed. I was surprised that all I had to do was sign a form requesting only a pacemaker. I did not even get anybody questioning me about my decision.

I have Kaiser Permanente insurance along with Medicare coverage. There has been no change in the way my heart problems are handled. For the original implantation, the separate surgery through the ribs to attach the third wire to the ICD, and two more replacement surgeries every 3 1/2 years I payed a $10.00 copay with each surgery.

I made the decision to not have the pacemaker after I spent 30 days in a Nursing Home recovering from a femur fracture and titanium rod surgery. I was diagnosed with severe osteoporosis with a high risk of additional fractures occurring . The spiral fracture of the femur happened when I was dealing with severe arthritis in one knee and had to use a walker for the first time to walk. I was just getting back into bed and lifted my legs up to lie down and the fracture occurred. I have balance problems that continue to put me at risk for additional bone breaks. It took a full year to recover from the effects of the fracture of the femur.

The arthritis flares continue to occur and do bone damage and leave me with neuropathy pain in and numbness in my feet and ankles. A Chrissy said it is difficult to get any pain relief with heart problems. Being on coumadin and having the heart failure problems means almost every pain relieving medication, supplement,or herbal supplement cannot be used--they all have blood thinning effects. I cannot not use the strong pain meds as I quickly become addicted to the drugs and do not like the way I feel when I take them.

I also am dealing with sleep disturbance problems and severe adrenal fatigue. I have severe candida problems (from radiation when I was 7 years old compromising my immune system). I have severe food allergies. I have to limit my diet also to keep down the arthritis flares. I now also have to deal with the weight loss because of
anorexia.

My heart has also developed more arrhythmia problems-- afib 70 % of time (instead of 3%), atrial flutter, and a more rapid irregular heart beat. Some days the SOB and arrhythmia and the CHF limits what I can do.

In other words, my body is now very difficult and painful to live with all this going on.

As I am only survived by one brother and was never married or had children, my decision to stop having the defibrillator did not involve how it would effect any immediate family.

My insurance from Kaiser and Medicare has not effected my treatment of my heart conditions.

I am still amazed that it was so easy to just get the pacemaker without the defibrillator when I had the last replacement done. I am sure it would be harder to get a cardiologist to turn off the defibrillator. At the time of the replacement I was dealing with the Physicians Assistant. She had been the team leader for all my heart surgeries done by the EP surgeon. I just had to sign a release form that I choose not to have a CRTD and wanted only the pacemaker.

Jeanne

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Jeanneinca
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Re: calling all Yanks...

Post by Jeanneinca » September 27th, 2018, 12:42 pm

I am curious--the use of the word w a l k e r triggered the emoji of walking instead of using the word??

How did this happen?

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ROBO Pop
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Re: calling all Yanks...

Post by ROBO Pop » September 27th, 2018, 1:29 pm

Some of the emojis are triggered to replace words like angel or walker , annoying.

Thanks for the feedback guys. Dunno why but I awoke in the middle of the night thinking about this. And believe me, I know when it comes to insurance and logic...they don't go together. I definitely have no problem getting my Cardio to shut me down, he and his whole staff have been praying for this a long time. Dunno why, I'm such a charmer
Broken Heart
Nobody has ever survived life, but I'm trying...
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dick
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Re: calling all Yanks...

Post by dick » October 1st, 2018, 12:47 pm

When I asked my EP about deactivating the d portion, he quite casually said "your body, your choice." He had obviously heard the question many times before. I don't know what his answer would have been if I was a woman.

Are there legal ramifications if you are pacemaker dependent and refuse to have the device replaced?

Can you externally deactivate a pacemaker? Like with a magnet?

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Ozchrissy
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Re: calling all Yanks...

Post by Ozchrissy » October 1st, 2018, 8:30 pm

Jeannie and Robbo, I have been mulling over this post since it appeared. I know I am not a Yank, but heck it is relevant to all of us. I have of course put into place with my care directive to have my device turned off, but I have always envisioned myself in palliative care when that time comes. However, Jeannie you have illustrated that it is not necessarily the case, and other circumstances have to be considered. :big-hug: I also would be making the same decision as you if my quality of life was deteriorating beyond what I was happy with. And Robbo is also facing that decision, something I have always put in the 'sometime in the future' basket. It is confronting, but I believe would be a relief once you make that decision. I don't know over here how we would be viewed, but as our general medical practices are covered by the Government and there really is a strong view on the privacy of the decisions we make, I doubt if it would affect my overall health care, for example any palliative care. It would really depend on the values and views of my Cardiologist at the time of my decision.

I have already had the conversation with my daughter and loved ones, and they are all in agreement with me on this important decision. But when do you make that decision. In my own experience, I have been given the "there is nothing more we can do for you" speel on quite a few occasions, but did not even think about turning of the defib. With heart disease, I find it would be impossible for my Doctors to give me a time line or a definitive diagnosis. They may not be able to improve my condition, but they definitely will not give an opinion on when and even if I will die. Very frustrating. Personally if I am going to go, I want to go with SCD. I have experienced this on a few occasions, and to me it is not frightening, and very peaceful.

Gosh at the moment I am still on Warfarin, and for some reason I am extremely unstable on the stuff. I can go through the roof with a high, 6-8's one week and the next, under 2. So if it is a decision of going out with an SCD or a bleed or stroke, I know which one I would prefer.

I really admire you Jeannie, you definitely made the best decision for you, and I know your strength. Robbo, you still have that decision to make, and I will be thinking of you as you go through that process.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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ROBO Pop
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Re: calling all Yanks...

Post by ROBO Pop » October 2nd, 2018, 2:05 pm

when is the right time... tough question isn't it?

We see so many people grabbing at even the smallest chance to extend their lives regardless of impact. Nothing wrong with that, their life, their choice. But don't you wonder how many regret their choice? I've seen too many suffer as a result of this fear of death.

For me it was somewhat simple.

I've done my homework and recognized long ago quality of life was all important to me. Actually quality of life for my family is what's important. Since I was released from the hospital after the big episode in 07, I've lived that belief and it has served me well. When I began realizing that I'm tired, so very tired of the constant struggle knowing I can't win, place, or show I recognized it was time to take some steps.

Shutting off the Jesus Jolts won't end things immediately for me, at least I don't think it will but timing is everything. I scheduled decommissioning of my Defib function December 26th.
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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mrag
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Re: calling all Yanks...

Post by mrag » October 2nd, 2018, 2:53 pm

I scheduled decommissioning of my Defib function December 26th.
Any chance of moving that up a bit? I'm thinking if I could replace my 3 wood, I might do a bit better on the longer holes in the year end tournaments.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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ROBO Pop
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Re: calling all Yanks...

Post by ROBO Pop » October 2nd, 2018, 4:41 pm

mrag wrote:
October 2nd, 2018, 2:53 pm
I scheduled decommissioning of my Defib function December 26th.
Any chance of moving that up a bit? I'm thinking if I could replace my 3 wood, I might do a bit better on the longer holes in the year end tournaments.
Tiger, as I said yesterday, you got bigger problems with your game than Woods
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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Ozchrissy
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Re: calling all Yanks...

Post by Ozchrissy » October 4th, 2018, 8:44 pm

OK Robbo, I can understand why you would pick the 26th December, over here it is a Public Holiday, Boxing Day, which is because on the day after Christmas the English Royals used to give out boxes of pressies to their staff on that day. BUT DON'T YOU DARE DROP DEAD ON THE NEXT DAY. It will be my birthday and you would ruin my day for the rest of my life. So just sit in your chair on the 27th and take it easy PLEASE.

I am looking around today to see where the big truck came from last night and ran me over. I had what I felt was a very productive day yesterday. I did my gardening, mind you it did hit home when I tried to lift some potting mix that only 6 months ago I was doing well, and could not even lift a corner of the bag. Hit home I am not as strong as I was at the beginning of the year. Then went out to a concert with friends, Aled Jones, so although emotionally uplifting, ended up being a bit of an effort. No screaming at the stage though, there was a special area reserved for the parking of the W A L K E R S. dancee dancee

I am ok with how I scrubbed up this morning, but it was a bit of an eye opener. Maybe I won't do all the stuff I did yesterday in one day, but heck I could manage one of the activities. But it has put the thought into my little brain about how much adjusting we have done over the years. How we have modified our activities to cope with our declining health. After a while at the new level, we don't even realize we have changed. It is only when we look back and remember what we were capable, and in my case only 6 months ago, that we realize that we are in the grips of heart failure. But heck, sitting here on my recliner, chatting to you lot, getting ready to go up the street shopping, with blue skys outside and a moderate temperature, my life is pretty good at the moment.

:big-hug: :big-hug: :big-hug:
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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ROBO Pop
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Re: calling all Yanks...

Post by ROBO Pop » October 5th, 2018, 3:32 pm

Chrissy, the date (Dec 26) was chosen for me. I had an appointment for Dec 20 but the Terminator had a scheduling conflict. punisher I'll try not to die on your Birthday, but no promises
Broken Heart
Nobody has ever survived life, but I'm trying...
My story and sticking to it
http://www.icdsupportgroup.org/board/vi ... 97&p=91375

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