OT-Update on Freckles

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

Moderator: Moderators

Post Reply
User avatar
freckles1880
Moderator
Posts: 8578
Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

OT-Update on Freckles

Post by freckles1880 » October 8th, 2017, 4:06 pm

An update of where I am and where I have been (health wise) these last few months.

In October of last year I went to the hospital to have a routine colonoscopy. It almost did not happen as the anesthesiologist said my heart may not take the anesthesia and I may not wake up. So we had to wait and get “permission” from my cardiologist. I came through without a hitch. Then in November I went to the hospital and found I had pneumonia and ended up with numerus CT scans, 3 bronchoscopies, X-rays, 3 sets of biopsies including 2 needle biopsies in my lungs. EVERY time the anesthesiologist questioned my heart condition and had to look at my last Echo and what I had already had before the procedure was approved. Most of the orders for the test came from my pulmonary doctor who said he knew something was in my lungs in addition to the pneumonia. Well he was right the latest tests show I have stage 4 lung cancer, further testing shows it is only in the lungs.

Meanwhile while in the hospital my prostate decided to act up and stopped working properly so now I get more specialists. They gave me a Foley catheter and ordered more tests like the cystoscopy. After a total of 3 months empting the bags and having a turp procedure I finally said good-by to my friend Foley.
All the tests and procedure took me into March of this year before we really knew what I had. So now I got another specialist known as an oncologist who orders another test called an EGD test to make sure I have no swallowing issues nor cancer in my stomach. The same doctor who did my colonoscopy completed this test. It was all clear.

Stage 4 lung cancer has no cure. The recommendations from the oncologist was for me to take chemo as it should give me an extended lifetime. I understood that I would feel good right after chemo then after a couple of days my feel bad for a week then start feeling better. Then more chemo. I was not going to take any chemo but after discussions with my family and doctors I agreed to try 2 sessions 3 weeks apart. After the first session I was sick through the whole 3 weeks but had committed to the second session. After the second session I was not well for the next 5 weeks. I had almost every side effect with the exception of nausea. I decided to no longer take any chemo. I WAS NOT CURABLE and I has discussed my desire to have the best quality of life I could with my cancer. This treatment took all of my strength from my body and I could not walk more than 3 or 4 feet without help. I had no muscle power and slept many extra hours.

Meanwhile I was introduced to a team of people who has a palliative care and a hospice program. As long as I was in chemo I was just in a palliative care group. When I left chemo I went into their hospice program.

I have since spent hours help planning my memorial service at our church, making arrangements at the mortuary. I have also been updating my files so my spouse can understand how I do our bookkeeping and banking. I have had written instructions for years but as I teach her we change them so she better understands what is going on.

I have been working with a couple of our members to do the daily work from this WEB site. They are progressing but we still could use some help.

I spoke to my cardiologist/EP 6 months ago and discussed the thought of when to or if we should turn off the ICD. He agreed that with my heart condition, 4 leaky valves, an EF of about 15% and no chance of surgery to fix it, it would be wise to turn it off at a later date. I have the ICD to shock me if my HR gets above 168 and pace if below 40. The only time it has gone above a normal 70-80 is when I have VT’s. I never had any until last November and have had almost 300 since with some lasting a couple of hours. They do not bother me as I don’t feel most of them. I have never been paced. If my heart goes into failure it will most likely not come back out, with or without a shock. I personally would rather go from heart failure than lung cancer.

Since I went on the hospice program I have been given oxygen to help my lungs get oxygen to my heart. The oximeter always shows 93% or higher but I get dizzy as I don’t get it into the heart. Thus the extra boost. Hospice nurses see me at least weekly and take care of (order) all of my medications.
One of the side effects of chemo and the steroids I got and still have some limited amounts of is swelling ankles. My fluid index numbers have never been more than about 60 until these last few months and I have been over 200 at times. Thus a lot of lasix pills and my swelling has gone down a lot.
Well last Friday, Oct 6, 2017, I saw my cardiologist and he agreed it was time to turn off my machine. So I am here with a non-working ICD. My understanding that it would not have helped me recover from an event.

When I read the signs and symptoms of heart failure, I have them all. One problem is that a pill that helps the cough and shortness of breath also causes constipation so a lot of more pills to keep things moving.

One not so funny side effect is when they turned it all off they did NOT turn off the alarm. So Friday night about 8:45 pm I heard what I thought was my phone making a funny noise. At 2:45 AM I thought my clock alarm went off. At 8:45 am Saturday I blamed the phone again. And at 2:45 PM thought it was the oxygen machine was low on water, it was, and had let me know. Every alarm was a little different. So last night at 8:45 pm I looked all over the house and even though it may have been the furnace. Finally at 2:45 am this morning I realized it was my ICD. So I called the Cardiologist office and was told that I could go to the ER but it may be a few hours to get the representative there. So I am waiting for 8:00 am in the morning a meeting at the cardiologist office soon after, a tired but will be thankful person.

So how much time do I have? No one seems to know. It may be another 6 or more months or? Meanwhile I keep planning to make it easier for others to take over.
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
Moderator
Posts: 440
Joined: July 23rd, 2016, 6:23 pm

Re: OT-Update on Freckles

Post by DebW » October 8th, 2017, 6:12 pm

My thoughts and prayers are with you always Bob! I completely understand your decisions and hoping it goes well for you.
thanks thanks thanks for all you have done for this support group.
:big-hug: :big-hug: :big-hug: :big-hug:

slk123
Posts: 645
Joined: January 27th, 2015, 8:00 am
Location: Northern Illinois

Re: OT-Update on Freckles

Post by slk123 » October 8th, 2017, 6:39 pm

Thanks for sharing your happenings with us. It's good to know you have control over your life and the doctors aren't pulling the strings. I hope you're strong enough to go out and do whatever it is you want and enjoy all the ICD free time you now have.
Best wishes,
Stacey

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

User avatar
Leah
Posts: 1143
Joined: May 1st, 2008, 1:50 pm

Re: OT-Update on Freckles

Post by Leah » October 8th, 2017, 7:09 pm

Thank you for all you do in this group.

kiwiguy
Posts: 280
Joined: June 19th, 2014, 12:24 am

Re: OT-Update on Freckles

Post by kiwiguy » October 8th, 2017, 8:25 pm

thanks for the run down Bob. Hope you have some of that quality time with your friends and family.


Kiwi

User avatar
Ozchrissy
Posts: 6938
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: OT-Update on Freckles

Post by Ozchrissy » October 8th, 2017, 10:04 pm

Thank you so much for allowing us to share in what is happening with you as your face this final stage of your life. I feel very privileged to be able to witness you integrity and strength, you inspire us all and quite honestly, take a lot of fear away.

I will be praying that you are able to achieve your desire of a peaceful and meaningful transition. I understand your desire to turn off your device, and from personal experience, that is my preferred way to pass. With the quality of palliative care available today though, all is done to keep your comfortable. I had a close friend who also had terminal lung cancer and she died peacefully.

Thinking of you and thank you for all you have done for us.
“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.

mykidsmom
Posts: 3134
Joined: February 9th, 2012, 5:09 pm

Re: OT-Update on Freckles

Post by mykidsmom » October 9th, 2017, 9:33 am

Strength and braveness seeps out of every word you wrote freckles...and as stacey says I hope now your able to enjoy some quality of life and time with your loved ones....that chemo is debilitating and unless you know and have some guarantees there will be some light at the end of the tunnel....you were right to refuse the 3rd round....you gave it a good shot already......and its good you have some control of how things are going...sounds like too you have a good medical group in your corner....my prayers and thoughts are with you as always....enjoy every moment for what it is.....

Your the best!!!!! thanks
I think.....Therefore I am.!!!!!

User avatar
ROBO Pop
Posts: 4034
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: OT-Update on Freckles

Post by ROBO Pop » October 9th, 2017, 9:53 am

On particularly bad days, I find myself incapable of concentrating or focusing on anything except the question that always lurks in the darkness of my mind...is today the day? The hard part for me is not in knowing I'm running out of time, it's not knowing the when. Too often I wonder should I kiss my wife that final time, should I say a final goodbye or am I just being a drama queen. This shit sure isn't for sissies.

I know what you are experiencing, how you are feeling, how challenging this is for you Bob. I'm glad you decided to share with the membership so they can help provide the support that you deserve and will benefit you and your family during this difficult time. I hope you will consider continuing this thread sharing the emotional aspects as well.

Again thanks for sharing your journey, here's hoping it's a long and joyful one
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

blueraider
Posts: 36
Joined: May 20th, 2013, 6:15 pm

Re: OT-Update on Freckles

Post by blueraider » October 9th, 2017, 11:34 am

Thank you for sharing so very much with us. Our prayers are with you and your family.

User avatar
freckles1880
Moderator
Posts: 8578
Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

Re: OT-Update on Freckles

Post by freckles1880 » October 9th, 2017, 1:17 pm

Little update; today I was able to get the alarms shut down. It's been a couple of long nights with the alarms going every 6 hours. At least we know that Medtronic has a nice loud set of sounds. The poor machine did not Know what problem to report so every alarm was different than the previous one.

Today is not a good one as I am very tired and after a almost 80 degree day on Saturday we have 4 plus inches of snow so far today so it is :freez:

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.

User avatar
4EverHopeful
Posts: 910
Joined: January 27th, 2012, 11:34 pm
Location: Knotts Island, NC USA

Re: OT-Update on Freckles

Post by 4EverHopeful » October 9th, 2017, 1:36 pm

My thoughts and prayers are with you and your family Bob. You are an inspiration to all of us. Thank you for sharing your journey, your life, your final tough decisions. I'm healthy compared to what you are going through, and even on my bad days, my mind can't help but wander to those thoughts of final moments. How to prepare, making sure as much as possible that my family knows everything they need to know (I handle all the financials here too). I know my final destination is with Jesus, so I'm not concerned about myself, it's all about who we leave behind. You are a blessing Bob, sharing your experience and preparations helps all here. May His peace be with you and your family...
thanks angelwatch
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

User avatar
whiteheadjf
Posts: 527
Joined: March 15th, 2009, 6:19 pm
Location: Hartsville, SC

Re: OT-Update on Freckles

Post by whiteheadjf » October 9th, 2017, 5:34 pm

Hello Bob from an old forum member who has been "on vacation" for 5 yrs. I got my first ICD the same year (2009) you did and I remember all of the support you and others gave me for the next three years while I was still active. This is my first post since then and I have to say that your update is the most inspirational I've ever read. As someone who worries too much about the "little things" thank you for sharing.

thanks
non-ischemic cardiomyopathy
Medtronic Maximo II 2009
Boston Scientific 2015 (generator replacement)
Pacemaker syndrome / PMT 2015
Boston Scientific CRT-D 2016

User avatar
Michael L
Posts: 521
Joined: June 17th, 2014, 8:39 am
Location: Central Florida

Re: OT-Update on Freckles

Post by Michael L » October 9th, 2017, 8:08 pm

Bob, there really are no words. Please know that through your efforts here you have helped countless others who have and are dealing with this and other illnesses. Thank you for all you do.
Biotronik Ilesto 7 implanted May 5, 2014
CABG 3X February 1998

User avatar
ROBO Pop
Posts: 4034
Joined: September 14th, 2009, 2:36 pm
Location: the Oval Office

Re: OT-Update on Freckles

Post by ROBO Pop » October 10th, 2017, 10:52 am

So how are you coping emotionally with no longer having your pocket protector? curious, did you get the pacing function shut off as well? How is your lovely bride holding up, this has to be extremely stressful for her.
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

User avatar
freckles1880
Moderator
Posts: 8578
Joined: April 18th, 2009, 7:19 pm
Location: Broomfield, Colorado

Re: OT-Update on Freckles

Post by freckles1880 » October 10th, 2017, 12:26 pm

No shocking ability, no pacing and now no alarms. And a better nights sleep without the alarms.

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.

Post Reply