OT-Update on Freckles

Posts from Jan. 1, 2017 to the present. Plus important announcements. (ICD warning sounds)

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Carl Portman
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Joined: April 6th, 2009, 3:28 pm
Location: Banbury, England.

Re: OT-Update on Freckles

Post by Carl Portman » November 7th, 2017, 1:04 pm

All of my thoughts are with you, and I am astonished at how much you have been through yet still maintain your dignity, humour and well - that class! We love you mate, that's for sure. If I could get over there now I guarantee I would make you laugh - ever seen me twerking??
Thoughts from over the pond my friend.
Carl
Right Ventricular Dysplasia
St. Jude ICD implanted 28 September 2009
Ablation on 5th January 2011
Ablation on 26 October 2011
Sotalol and Mexilitine tablets
St Jude generator replacement on 02 January 2014

InSync
Posts: 839
Joined: July 21st, 2012, 10:26 pm
Location: The Edge of America, SC

Re: OT-Update on Freckles

Post by InSync » November 7th, 2017, 4:59 pm

I'm glad to hear that you've got the comforts of home around you and that you are able to get out of the house some. That weight fluctuation is crazy! I hope the nurses are keeping you comfortable and that you and your family will continue to enjoy you good days. Thoughts and prayers for you daily.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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freckles1880
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Location: Broomfield, Colorado

Re: OT-Update on Freckles

Post by freckles1880 » November 19th, 2017, 7:51 pm

Well another couple of weeks with nothing really exciting going on.

I have had pain about where my ICD is for several months now. It does spread across the chest at times, but it’s never been real bad, a 2-3 most of the time. This morning I woke and the pain is about a 5 level and it does move down the left side. So a couple of Tylenol to see what happens through tonight.

I do sleep in my chair for most of the nights now as my congestion is easier to control.

So far the Hospice nurses just say that things are “progressing” but not really what that means.

I am disappointed with the members here as I let all of you know about celebrating birthdays that other members are having. NO ONE HAS been helping. One of these days it will be your birthday we forget.

DebW has been really keeping up with new member registrations and site E-mails and I am proud she has stepped up to the bar. Suzanne is still looking at what is being posted and watching what we are up to. These are not “hard” duties but are what will keep the site up when I am gone. ~guin is still the main person in charge but has continued to let those willing to help do so. Let her know if you are willing to help.

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.

DebW
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Re: OT-Update on Freckles

Post by DebW » November 19th, 2017, 8:27 pm

Bob, what do you think that pain is around the ICD? Will the nurses come tomorrow? Maybe they will know.
Thinking of you
:big-hug: :big-hug: :big-hug:

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freckles1880
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Re: OT-Update on Freckles

Post by freckles1880 » November 25th, 2017, 6:33 pm

First I want to thank mykidsmom for helping with the Birthday greetings. Remember anyone can make start the topic with a new birthday. The listing is at the bottom of the “index page”. I personally was a little miffied when mine came around as I was still doing most of them and NO ONE ELSE though of placing my greeting out there. It was number 75 also. (1/2 of mrags age I understand)

This has been a unusual week as it started with me feeling really funny all over and like “trucker Ron” got me with one of his rigs. Then a couple of days that were just alright but the pain in the heart area was getting worse and lasting longer at a time.

My weight has still kept dropping almost a pound a day but the nurse does not seem to mind when she was here on Wednesday. I weigh less now than I did in the 8th grade. I was 6’ 2 ½ then though.

Thursday night I started with some real pain in the chest. Friday I had to call the nurse in and she upped my morphine and said it should help cut the pain. Well I had such a reaction the much higher dose that I was unable to function very well. The mind and body just gave out. I really thought it was the beginnings of the hard end for me. I actually took a nap at 2:30 pm and woke up at almost 7:00 pm. Still felt bad but rested. She also ordered a new oxygen machine as I need more than the 5 level the old one went. I went to bed (my chair) at 9:15 pm and was sound asleep when at 10:50 pm the doorbell rang and then they called when we did not answer it to tell me they were delivering the new machine. Our phones don’t actually ring after 8:30 pm but do allow messages. I listened to it as the phone would have blinked all night and ended up awake for almost 2 more hours. This morning I called and explained that normal people are not available at that time of night. Anyway I just get the new machine 4:00 pm today.

The heart pain is back to part time at this point.

Well Sunday will start a new week for me and I pray it will be a better one.

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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Joined: February 9th, 2012, 5:09 pm

Re: OT-Update on Freckles

Post by mykidsmom » November 25th, 2017, 7:18 pm

frecks...im really sorry to hear you had a bad time of it lately...im very surprised they havent actually given you cannabis oil to relief many of the symptoms your having...ive been finding its a fantastic pain reliever, and it also helps you sleep and eat....it doesnt make you high either....

Im so sorry we missed your Birthday.....thats a real downer considering you do birthdays for everyone.....all i can do is apologize....I hope next week will be a much easier week for you and all will go smoothly and the new machine will make things calmer for you....

love ya.......
I think.....Therefore I am.!!!!!

DebW
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Re: OT-Update on Freckles

Post by DebW » November 25th, 2017, 7:59 pm

Sending healing thoughts your way Bob. I hope you have a great Sunday =)
Thinking of you!
:big-hug: :big-hug: :big-hug: :big-hug: :big-hug:

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TruckerRon
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Location: Provo, UT

Re: OT-Update on Freckles

Post by TruckerRon » November 25th, 2017, 8:30 pm

I'm not exactly antisocial, but I don't bother to do a lot of online things that some people do, like endlessly sharing things on FB to "prove I care."

But I do care about you, Bob, and I hope that as you prepare for that final curtain, that you've indeed "lived a life that's full... and traveled each and every highway" that you wanted to see.

You and your wardens are in my prayers.
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

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4EverHopeful
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Joined: January 27th, 2012, 11:34 pm
Location: Knotts Island, NC USA

Re: OT-Update on Freckles

Post by 4EverHopeful » November 26th, 2017, 12:26 pm

I'm praying Bob that you are kept comfortable and have minimal pain. I am amazed that you even have the strength to continue to keep up with the "family" here, you are an inspiration to me! My bad days are nothing to what you are enduring, yet you continue to be faithful with your comments and oversight. You are in my constant thoughts and prayers! Thank you for keeping us updated...
:hugg:
Phyllis

God's prescription for the heart:
For the eyes of the Lord move to and fro throughout the earth that
He may strongly support those whose heart is completely His.
2 Chronicles 16:9a

Non-ischemic DCM 09/11
PVCs, LBBB, leaky mitral valve
St Judes CRT-D (Bubba) 02/2012; (Bubba II) 09/2017
EF 20% 09/11; 25% 07/12; 35% 02/16
Failed PVC Ablation 11/12
Coreg 25, Zestril 2.5, Asprin, Aldactone 12.5, Lasix 80, Zocor 40, Levothroid 75
viewtopic.php?p=87649#p87649

tomrostron
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Joined: June 6th, 2006, 12:30 pm
Location: bolton. uk
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Re: OT-Update on Freckles

Post by tomrostron » November 27th, 2017, 7:25 am

Bob, you have done a great job for this icd community. Hope you get some peacfull pain free rests. joe

InSync
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Joined: July 21st, 2012, 10:26 pm
Location: The Edge of America, SC

Re: OT-Update on Freckles

Post by InSync » November 27th, 2017, 11:50 am

I'm glad to hear that you have a team that is responsive to your needs, Bob.
You and your family are often on my mind.

I'm sorry to have missed your birthday.
I honestly don't use the features of this site except for the forum. I didn't even realize that birthdays were there.
You've reached a milestone and I want to recognize it and say Happy Birthday! Sorry I'm late.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

mykidsmom
Posts: 3126
Joined: February 9th, 2012, 5:09 pm

Re: OT-Update on Freckles

Post by mykidsmom » November 27th, 2017, 12:15 pm

:big-hug: :big-hug: :big-hug: :big-hug:
I think.....Therefore I am.!!!!!

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Melissa
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Re: OT-Update on Freckles

Post by Melissa » November 28th, 2017, 5:18 pm

I don't post often, but I am thinking of you a lot lately. I pray for peace for you and your family during this difficult time.
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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ROBO Pop
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Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: OT-Update on Freckles

Post by ROBO Pop » December 7th, 2017, 10:38 am

Can this thread be locked at the top so we don't have to search...

So Bob, I'm pondering whether Mrag and I are being too subdued out of respect for you, and perhaps we should step up our game to give you other things to think and worry about. We aim to please...

Your posts are somewhat calm in spite of what you are fighting, well except perhaps your anger and hurt when your birthday was missed. Don't be reluctant to let it out, venting can be cathartic, and in some ways it will help everyone understand the reality of what,we all face and perhaps better cope.

Hope this has been a good week for you, and thank you for sharing.
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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wen
Posts: 595
Joined: July 13th, 2009, 5:47 pm

Re: OT-Update on Freckles

Post by wen » December 7th, 2017, 12:46 pm

Bob,

You are our hero! I'm so sorry for the physical struggle you are having to endure. Your strength and positive attitude are admirable. You have set such a wonderful leadership example for each of us. I feel so badly that your birthday was overlooked and I want to wish you a HAPPY BELATED birthday!!

I am so sorry that I have not been able to step up and help with the site. My past year has been a whirlwind of a totally different nature. Between helping to plan 4 weddings, orchestrating a move, unpacking boxes and trying to travel to see my husband working in another state my crazy life has kept me constantly busy and exhausted. I haven't even found new doctors in my location yet. I realize that is not helpful on your end and I apologize for that.

I just want to thank you for all you do for this message board. I know all your behind-the-scenes work isn't always appreciated. THANK YOU!!

I pray for you, your comfort and your family as well.

All the best,
Wendy
Left Bundle Branch Block
Non-ischemic Cardiomyopathy
V-Tach
ICD-Boston Scientific Teligen (2-lead) installed 7-7-09

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