OT-Update on Freckles

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

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luvmydogs
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Re: OT-Update on Freckles

Post by luvmydogs » January 10th, 2018, 10:48 am

I hear you Bob, cancer sucks big time. I often wonder why people try so hard with all the treatments. And I've been through it, so I can speak from experience.
Joanne (aka Jo)

abas
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Re: OT-Update on Freckles

Post by abas » January 10th, 2018, 5:02 pm

Bob, I have been following your plight from afar trying to find proper words. I don't think there are any beyond fond thoughts of you and for your family in these trying times. All my best, Abigail

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ROBO Pop
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Re: OT-Update on Freckles

Post by ROBO Pop » January 11th, 2018, 12:36 pm

Bob, never had GERD (AKA acid reflux) until my heart adventure began. Now it hits with vengence. We tried OTC remedies and even snake oil. My cardio finally prescribed Pantoprazole (similar to some OTC) and that works great.

What I really wanted to share is that sometimes when the GERD hits the chest pain is 12 on a 10 scale. It's as bad, maybe worse than my Angina. Might be worth a try for you.

Then again leaky squeaky valves will cause significant chest pain as well, at least thats what they tell me. For that I take Ranexa and Nitro. Doesn't always keep it at bay but certainly reduces the frequency.

If all else fails, go ahead and cut loose that fart. The release of pressure will allieviate the pain, though you might not want ti inhale
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: OT-Update on Freckles

Post by Ozchrissy » January 11th, 2018, 5:20 pm

Bob, I am an old hand at Gastric Reflux. I take a proton pump inhibitor and that works very well. But if you really need a quick fix, there is also a suckable prescription pill you can get. Nothing worse than reflux, mine used to hit my lungs as well, and believe me the experience is not nice, and with your current situation, that would be bad.
“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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Lazydays
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Re: OT-Update on Freckles

Post by Lazydays » January 14th, 2018, 1:55 pm

Bob, I haven't visited the site for many months and am truly saddened to learn of your deteriorating health. None of us will get out of this living thing alive, of that there is no choice. However the way in which we mentally deal with our demise can be a matter of choice and I would like you to know that your posts on this subject are inspirational. I thank you for sharing your journey. I would also like to thank you for your years of work on this site. I joined this site in my hour of need, when I was mentally fragile to deal with all the unknown issues that I was to face with my new ICD. Thanks to you and your predecessors on this board I was able to reach a place where I could face the future with confidence. There I'll always be hiccups along the way but I am in a better place now than I was when I joined. Finally my best wishes to you and your family. Thank you for being there for us.
Gary

Life Can Sometimes Be A Shocking Experience

March 1994 - MI
June 2003 - Stent
July 2008 - VT - Stent & ICD fitted
Dec 2008 - Appropriate shock
Sept 2011 - Ventricular Ablation (failed)
May 2012 - Ventricular Ablation
May 2013 - Ventricular Ablation (failed to induce VT )
June 2014 - Ventricular Ablation
25mg Spirolactone
5mg Bisoprolol
10mg Ramipril
40mg Pravastatin
Warfarin
Disopyramide - 400 mg

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » January 16th, 2018, 9:31 am

Since my “water boarding” issue we have gotten the oxygen unit working well. I believe it was a problem with the water tank having a clog or? New tank and all is well, I actually get more oxygen also so it may have been that clog.

I am doing all my new meds now and they do make me sleep more and I am somewhat unstable at times. They do control most of the pain though.
I still have very little strength so it does get hard to do much of what I liked to do in the past and with oxygen all the time I am restricted to read and think about how I can still get the information I need to get to those who will carry on my projects.

I think more now about who/what I won’t be seeing any more and am trying to contact some old buddies, just to say hi.

My Warden is learning a lot about what I have on my computer that can help her. I have been a Lotus 123 user since it came out so converting to Excel is hard for me by giving up Lotus. As I have said before I have made notes and files with instructions. She is now doing much of what I have done in the past, as far as record keeping. That again take away from my daily work. Planning for the non-future for me is still hard as I know there will be something I forgot.

Still don’t need pity, just your support.

I have also made some minor changes to the site by getting rid of members whom have not been active at all since 2012. Five years with no activity does not help us. I did NOT delete any posts they may have made, that way the history is still there. Some members have passed away and we did not know it.
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my daughters.

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ricatlga
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Re: OT-Update on Freckles

Post by ricatlga » January 17th, 2018, 9:47 am

Bob -
Sorry to read that your health has declined. I remember you were one of the first ones on the board some 7-8 years ago to post helpful comments when I got my ICD. Although I don't post very frequently, I've tried to keep up with reading the board as a way of staying in touch with this virtual community of friends. My prayers are there for you and your family.
Kind regards,
Raymund
Raymund
Mitral valve repair Dec 2007
VF unknown cause 1/19/2010, Medtronic Secura-VR 1-22-10
Ablation May 2012 - Sotalol discontinued in September

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luvmydogs
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Re: OT-Update on Freckles

Post by luvmydogs » January 18th, 2018, 3:01 pm

Bob, Wow Lotus 123. Made me chuckle...that is old school. I did use it also though :)
Joanne (aka Jo)

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ROBO Pop
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Re: OT-Update on Freckles

Post by ROBO Pop » January 19th, 2018, 10:14 am

Lotus 123, hmm I think they mentioned that in my high school history classes...I'm guessing you used Fortran and punch cards too. Oh all right, the first computer I worked on filled a room about 14ft x 20 ft, was Analog and required patch cords to program.

You know, I don't think Mrag has been on since before 2012...just trying to be helpful.
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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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » January 19th, 2018, 11:23 am

My first lessons on a computer were as a trouble shooter for the Univac machine (the brain of the Air Force) for the Air Force. When Lotus came out I learned it from the beginning. After a few years I found that I was able to do things in Lotus that Excel could not do and the information would identify problems with our mainframe. My programs would show what needed to be fixed. I saved hundreds of thousands of man hour salaries with my programs. I learned early that I could have the program work for me rather than my work for the program. There will be some files that I still use that my family will delete as Excel just does not do them well. The ones I converted to Excel are simple and my Warden will be able to use them.

Lotus will be history in my family when I am gone.
wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my daughters.

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Ozchrissy
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Re: OT-Update on Freckles

Post by Ozchrissy » January 19th, 2018, 6:26 pm

We are a fortunate generation to have seen the explosion of technology and of course heart research. I remember being a Police Woman in Darwin, which is the Northern Tip of Australia, and getting one of the first Fax transmissions about a Felon they were looking for in Melbourne, the Southern end of Australia. We actually got a photo over the telephone, I was gobb smacked, and believe it or not we got the crim. This was an actual telephone, placed in a cradle, with a great big photo copy style machine attached to it. My how things have changed. We actually watched the machine print out the picture, I think it was dot matrix. Amazing stuff back then. We still used a corded switch board to communicate with outback Police Stations, and it went through an operator, and used those teletype machines, the name has escaped my memory, but you typed the stuff in and sent it over the phone lines to another machine at the other end. That was our method of communications.
“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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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » January 28th, 2018, 5:29 pm

Well it’s been a few days since my last update. Not a lot to report. I have been o my “new” med schedule for a couple of weeks now. They seem to be working as I have little pain. I still have sleeping issues, about 4-5 hours then up to the bathroom, then back for another couple of hours that I don’t sleep a lot during. My mind though has really been working at its own pace. One time I am fine the next I am out of it and dizzy a lot. My BP has gone up about 20-25 points and the nurse now can hear the chest rumblings a lot. I had to change oxygen machines again as the one I had would not go over 8. Liters per minute (LPM) and I now need 8.5. The new one works up to 10 LPM. I have tried to go without the machine on while I relax and have my morning coffee (about an hour and half). Up until Wednesday it was working then I had to get it back on as I was losing it. My body/mind started to panic and I was not sure I would recover. It did take about an hour to get back to feeling better. It looks like I am at the limit of 1 hour without so I can at least get out of the house for a short while and have a tank close just in case. This is one of my issues as I have not left my home is over a week again. I do keep it all on all night.

Bed sores are an issue still but my warden does keep them under control with the correct medicine. Not a problem with them right now.

Now my mind issues;
My wife lost another friend from cancer the other day. She found out about the cancer in December and died last week. Seems like one or so a week. I am in a place where I am trying to cope knowing that someday, sooner or later, it will be me. I keep trying to get my house in order as they say. I have talked to the experts, I try to keep positive and am not scared of the final results. My girls and husbands visit regularity and we discuss everything except the dying part. That has already been done. My minister comes regularity as do the nurses. Some days I am really not with it while others are OK. I have been thinking a lot lately on how do I thanks them all for what they have done for me without writing tons of letters or saying one is better than another with their support.

I know I am rambling but this is how I am feeling today. Its the why them or why not me issue?
wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my daughters.

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mrag
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Re: OT-Update on Freckles

Post by mrag » January 28th, 2018, 6:02 pm

Freckles wrote:I am in a place where I am trying to cope knowing that someday, sooner or later, it will be me
That "sooner or later" sort of applies to everyone on this forum. Well ok, maybe not everyone, but a lot of us. And I'm thinking when all is said and done that some are not going to vacation at the same place as some others.

Went online to my credit union last week to pay some bills. On the sign in page was an announcement the president of the credit union "died suddenly" over the weekend. WTF! He had started this credit union 35 years ago and it now is a big one with assets over a billion dollars. He still worked five days a week. He was fit and in good shape, a former army captain and he was about to turn 72 years old. Cue that Rolling Stones song on the Let It Bleed album.

So Bob, now I'm curious, why not use the TENS unit if it helps?
Despite repeated requests, my avatar was not painted by ROBO

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » January 28th, 2018, 6:06 pm

mrag wrote:
January 28th, 2018, 6:02 pm
Freckles wrote:So Bob, now I'm curious, why not use the TENS unit if it helps?
I used it for a muscle pain in my back the most. The pain I now have cannot be helped with the tens machine.
wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 53+ years and my daughters.

Chrisg
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Re: OT-Update on Freckles

Post by Chrisg » January 30th, 2018, 8:11 am

Bob I'm like a lot of folks here very thankful to have found you in our time of need; and have being closely following your posts.

You are a genuinely good inspirational person who deeply cares for your fellow human beings.

Even now as you are going through a rough time you are an inspiration to many of us.

O that our world had more like you.

You’re in my thoughts and prayers.

Thanks you again.

Chris
:snoball:
Idiopathic Ventricular Tachycardia
1st Medtronic ICD Dec 07; 2nd August 09; 3rd on right side Sept, 2011
14 Shock Storm July 09; 5 days induced coma
Sprint Fidelis Lead and ICD Explanted July 09
3 Ventricle Ablations July 2009
Lead Erosion; Leads and ICD Explanted August 2011
Medtronic ICD Re-implanted Right side Sept, 2011
Fractured Lead ; Lead left in and new Medtronic Lead and ICD implanted August 2017
Drugs: Mexiletine .50mg 2 daily; Metoprolol .25mg 2 daily. Omacor

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