OT-Update on Freckles

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

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » December 7th, 2017, 3:36 pm

This has been another up and town few days. Saturday and Tuesday I was feeling like almost nothing was wrong with me, other than I still have no strength. Sunday was a bad day and Monday alright but normal.

I saw the social worker on Friday, the head hospice nurse yesterday and my normal nurse. Later my drug dealer arrived (Hospice delivers all my medicines). The head nurse did explain some of what is going on with me and it appears that my oxygen is the key factor. The more I need the more my cancer is progressing. I am on a 7 on my machine now where most people are on a 2 or 3. The machine I have at home make oxygen out of the air and the readings are higher than a tank. I can go with a 5 on a tank. This does not mean that I will not be here in 2 or 3 months but I may not be near as active by then.

The nurses are amazed that I am so calm about my situation and not on any pain killers. But they have insisted and ordered me some heavier drugs as they say I will need them at some point. They also noted that I was the initiator of having my ICD turned off. I would rather go from a heart attack than cancer! So far the heavy pain has been just for a day at a time.

I have said before. I have gotten more than 8 years out of a heart that should not have worked beyond the first night. I can’t do anything about my cancer but wait. My family and all of you on the site have been supportive. I will keep up what I can for as long as I can.

My daily life is more sleeping in my recliner as I can’t do the bed and sleep. Walking around the main floor of the house with my oxygen, watching TV and getting out for an hour or so every few days. The girls and their families do visit often as do a few friends but I am only good for about an hour or so before I need a rest.

I thank you for your support and still don’t need the sympathy. I will put this topic so it appears more at the top of the topics as suggested.
wavhi

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Re: OT-Update on Freckles

Post by DebW » December 7th, 2017, 9:12 pm

Sending prayers to you and your family Bob. I think about you everyday and how strong you are. You are a hero, that is for sure. Big, big hugs!!
:big-hug: :big-hug: :big-hug: :big-hug: :big-hug: :big-hug: :big-hug: :big-hug:

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Re: OT-Update on Freckles

Post by mrag » December 8th, 2017, 7:47 pm

In keeping with my history, perhaps I can make a few comments in no particular order and without prejudice. First and primarily, I and I sincerely hope others appreciate your sincerity, candor and positive attitude in sharing your situation with us. We all have an expiration date, just with some it is not as clear as it might be with others.

You say you'd prefer to go by heart attack versus cancer. I'm surprised Chrissy has not beat you in her black negligee with her black whip and high heel boots. I believe you really meant to say you'd prefer a SCA, and not heart attack, which coincidentally is what our ICDs are specifically designed to prevent. I mention that as I consider the avoidance of SCA by virtue of an ICD to be the biggest negative of the device. As Robo has repeatedly pointed out, we are all leaving here eventually. Anyone with a different preference?

I know you must be getting "your papers in order." However, is there anything there that surprised you? We all should have a will, a final directive, last wished list, etc, but has anything turned up that you have not heard of before? Personally, when I leave, I am quite interested in making things go as smoothly as possible including what songs to play at any "viewing" I refuse to have.
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 » December 9th, 2017, 9:21 am

mrag wrote:
December 8th, 2017, 7:47 pm

I believe you really meant to say you'd prefer a SCA, and not heart attack, which coincidentally is what our ICDs are specifically designed to prevent. I mention that as I consider the avoidance of SCA by virtue of an ICD to be the biggest negative of the device.

I know you must be getting "your papers in order." However, is there anything there that surprised you? We all should have a will, a final directive, last wished list, etc, but has anything turned up that you have not heard of before? Personally, when I leave, I am quite interested in making things go as smoothly as possible including what songs to play at any "viewing" I refuse to have.
Sorry I do agree an SCA is the one.
Yes I have found that even with early planning there are still issues that come up. I do have what plans I can at my church, including songs. But what I find is the window keeps moving and some things that looked completed still need adjustments. Also planning for future events like holidays and even a graduation early next year is up in the air. I plan estimated taxes for the next year and for 2018 that issue may not be resolved for me to do.
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 eldest daughter.

mykidsmom
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Re: OT-Update on Freckles

Post by mykidsmom » December 10th, 2017, 11:35 am

I think you are a very brave man freckles...not many could do this planning in the way youre tackling it..

I have a will...but only because of our daughter...other than that i never planned anything in my life..im an original 60s flowerchild ...ive talked to my family about a DNA under certain circumstances and they just roll their eyeballs at me...similar to any funeral arrangements ive tried to impose, more eyeballs so i think they might have a funeral...which ive threatened to haunt incidentally...i do all the financial stuff here always have...except for my 6 months of being braindead in 2010 and thank heavens my abilities came back in order and just in time to prevent willie bankrupting us..so im going to have to think long and carefully about how to prevent him bankrupting himself after im gone...so maybe some planning will have to be done..


the best news is that your not in pain and needing a slew of medicines..and your brain will be a lot clearer to work on your other projects..

Love you freckles...all the best to you and yours......x0x0
I think.....Therefore I am.!!!!!

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Re: OT-Update on Freckles

Post by InSync » December 10th, 2017, 2:13 pm

Thank you for the update Bob. It's good to hear that you don't need pain meds and can still get outside. I looked back through this thread and didn't see, or maybe just missed, whether you had the ICD completely disabled or if you left the brady pacing active. I think about you and your family often. I'm happy to hear you've found peace and calm.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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Re: OT-Update on Freckles

Post by freckles1880 » December 10th, 2017, 5:27 pm

InSync wrote:
December 10th, 2017, 2:13 pm
Thank you for the update Bob. It's good to hear that you don't need pain meds and can still get outside. I looked back through this thread and didn't see, or maybe just missed, whether you had the ICD completely disabled or if you left the brady pacing active. I think about you and your family often. I'm happy to hear you've found peace and calm.
Everything is off. No pacing no defibrillator.

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 eldest daughter.

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Re: OT-Update on Freckles

Post by Leah » December 10th, 2017, 5:31 pm

How are you feeling? Is this a better weekend for you?
Leah

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Re: OT-Update on Freckles

Post by kristinzzz » December 13th, 2017, 4:21 pm

Hi Bob,

I have been absent for awhile and have spent the morning going through postings. Wanting you to know I am thinking of you and sending prayers your way and for your family too. Wishing you a good day today! :big-hug:

Kristin
ICD Medtronic Implanted October 2005
2nd ICD Medtronic Protecta Implanted June 2012 (Fidelis Lead removed/fractured)
10 Shock Storm/ Feb. 2008
Hypertrophic Obstructive Cardiomyopathy

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Re: OT-Update on Freckles

Post by ROBO Pop » December 15th, 2017, 4:40 pm

Started a reply and the next thing I know I'm on a porn site...

Glad you are still managing the cancer and not vice versa. Appreciate you keeping us informed and sharing your journey, it takes a lot of strength of character to calmly share what you are going through.

Is there anything we can do for you?
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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 » December 15th, 2017, 5:55 pm

ROBO Pop wrote:
December 15th, 2017, 4:40 pm
Started a reply and the next thing I know I'm on a porn site... Did you enjoy it?


Is there anything we can do for you?
Thanks, At this time support is what I need. There are so many unknowns that I want answers for. Time will tell.
I did lose a friend unexpectedly this week. Here he thought I was next as he had no heavy issues. My warden will be at his service as I can't be out that long at a time.

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 eldest daughter.

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Re: OT-Update on Freckles

Post by slk123 » December 15th, 2017, 7:47 pm

I’m so sorry to hear about your friend.
Thank you for sharing your experiences. I remember sitting at home with my grandma when she was in hospice care. That’s my experience with watching someone die. It was really tough on her and on all of us. I never knew if she was comfortable or not. She didn’t take pain meds when the grandchildren were around.
With you sharing your experiences, I know it’s helping me overcome some of the anxiety I have with death. I, too, want to go from another SCA, but don’t think that’s going to happen.

I’m glad you are at home and comfortable!
Best wishes,
Stacey

CHF Jan 2016
ICD Nov 2014
LBBB Nov 2014
Sudden cardiac arrest Nov 2014
Arrhythmia Aug 1982

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Re: OT-Update on Freckles

Post by Ozchrissy » December 23rd, 2017, 5:32 pm

I am sitting here on the other side of the World at 9.30am on Christmas Eve. I cannot express how privileged I feel reading your posts Bob. I must admit I have been a bit slow to reply, but mainly because I don't know what to say. (Yes, I am lost for words lmao4dx lmao4dx )

You are giving me an important lesson in LIVING. Your courage and dignity at this time of your life is an inspiration. All of us have to face the inevitable but not all of us do it with such style. By you sharing your journey with us, such a personal experience, is overwhelming. I will treasure these posts for the rest of my life.

My love and support is with your always.
“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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Re: OT-Update on Freckles

Post by freckles1880 » December 24th, 2017, 3:25 pm

Once again, thanks for all of your support. It has been several weeks since my last update as there has not been a lot to note.

I am not being treated for the famous “bed sores” and I have learned to rotate where I sit and what I sit on. I use what they call an egg carton foam pillow several times a day. The nurse gave me some special cream and my warden now has an additional job.

Still no real pain but I am having more days of almost complete loss of energy. Yesterday I had to rest even after walking only about 6 feet. It took almost an hour to shower and change into my night clothes. I do rest more and doze often. My head (brain) seems foggier at times and it is hard to concentrate on what I am trying to do. Thank goodness for spell check as I really need it.

My weight has gone back up some and it does not seem to make sense at times. Up for a few days then down again. I do eat well all the time so that is not the main reason for the gains and losses.

I found that my using an oxygen tank only gets me 2 to 3 hours. I thought I would do better. I can go about an hour at a restaurant, without the oxygen, as long as I just don’t move around. Then put it on when I get to the car. It has been almost 2 weeks since I have left the house as I need the oxygen at home almost 24 hours a day. Also my nose get clogged and I have to clear it to breathe better.

When I learned of my condition last February it was explained that I had an unknown survival time left. Some don’t make it 6 months and some could go 5 years. My goal started to get through the end of the year, I think I will. My next one is my granddaughter’s graduation from college in April. I can’t go see it but hope to be around. Then I will go for another goal. I just have to take each day at a time and go from there. They tell me that the level of oxygen I need will let me know what is going on with my cancer. The higher the level the less time I have left.

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 eldest daughter.

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Melissa
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Re: OT-Update on Freckles

Post by Melissa » December 24th, 2017, 5:01 pm

Bob,
Chrissy said it perfectly. I pray that when my time comes I can go through it with as much class and dignity as you are. Merry Christmas, and thank you for all you do for this community.
Melissa - dx cardiomyopathy in 2004 due to childhood chemotherapy; Boston Scientific CRT-D implanted 8/10, meds: Toprol XL 100mg/day

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