My Silence Has Been Golden

Blog Post created by Strokeinthefamily on Aug 29, 2018

Yay! 45 days smokefree. The title of this blog reflects the hard work I have been doing even though I have not been active on this site. So I have been silent in the community, but the silence has been golden. 45 days.


I reread my first blog regarding Caregivers not being stressed. It began,


"Controlling stress as a caregiver of loved ones is...I want to say, a joke. So controlling stress is not key to quitting? Can't be because I will quit, stress or not. Smoking adds to my stress." 


Consequently I am feeling much less stress. I am still on NRTS and will be as long as it takes. I have forgotten to use my patch many times but never for an entire day. So wasteful to put one on for a few hours before bed. Cannot sleep with one on. I found Habitrol patches on amazon for $1.00 each and ordered a box of 28 this week. I've been using Equate at $27 for 14 patches or Nicoderm at $40 for 14 patches. We are so broke. 


My mom was hospitalized many times after leaving skilled nursing the first of May. DVT and surgery to put in vena cava filter. Then she fell WHILE I WAS WITH HER AT HER APARTMENT WITH MY DAD!!! She was being careless quite a bit in regard to behaviors that would put her at risk of falling. She was feeling rebellious. She fell. Dad and I like to never got her off the floor and she begged us not to hit the call button for help so we didn't (they are in assisted living). She had only been home 10 days since her brain aneurysm surgery in Feb. Thirty minutes after falling she had a stroke. I hit the call button and called 911. So she was admitted, got out many weeks later, went right back in with a saddle embolism in her lungs 3 days later. Then 3 more weeks in the hospital, home one day, back in 3 more weeks for a DVT. Now taking blood thinners for her is an art, medically,  with her aneurysm surgery, 2 brain bleeds and 3 strokes, and 2 crazy ambulance rides with lights and sirens!!! but the Lord blessed her and she's home and getting around real well but her mind is not at peace. Her bell has been wrung too many times I fear. She is 85 and tolerating blood thinners. She's a miracle.


June 8th. Mom was still in the hospital. I had an early appointment with orthopedic Dr. It was my last visit for the broken arm, then start rehab to regain mobility...well that never happened, no rehab for me!


While at my appointment June 8th,  talking to my Dr my husband called to tell me he was having a heart attack, had called 911 and to not come home from my appointment at the hospital, but meet him in the ER. My Dr was nearly hysterical (I wasnt) so I suggested we finish my appointment before Toby arrives. I'm getting good at crisis.


Toby was in the hospital 10 days, needs triple bypass of 100% blockage of right coronary artery and 2, 80% blockages of the left descending artery. Sigh. He can't have anesthesia. COPD too advanced. So no bypass.


They got him stable on Ranexa to stop angina and increase blood flow to the heart muscle. His heart muscle is strong, a 5 out of 5! He had a severe and unusual reaction to blood thinners and bled severely under the skin on his arms and lower legs, became anemic and look like the incredible hulk, bone marrow taken from his hip to check for blood disorder, the stress of which caused a severe angina attack an hour later. IV nitro for 35 minutes finally stopped it but no heart attack this time. Marrow showed no disorder, just no iron in the bone. Iron infusions 3 times. He was in bed 10 days and came home unable to walk with no appetite and deconditioning, home health nurses and physical therapy at home. Oh, my mom was released from her last hospitalization June 18th and hasn't gone back! Toby was released June 19th.


June 27th Toby was readmitted with deconditioning, pneumonia and air hunger. AIR HUNGER???? yup, never heard of it but Google it, it's real. Narcotics control it, low dose. His first night they put him on a Trilogy machine or bipap/avap. Miraculous! I never got to see him breathe a full breath with a lung transplant but the feeling I had seeing him comfortable and 12 respiration a minute...priceless. I watched him breate comfortably all night. He was released 9 days later, July 6th, with medication to renew his appetite, narcotics for air hunger, a trilogy machine for home!!! Home health resumed.


He had a lung infection requiring 10 days of Levaquin but that was the only setback. He has missed so many IVIG infusions this year that lung infections could become common without them. So we started the process to get the infusions at home but not until October 1st. Drat, but the Lord knows.  Last week he started walking with a walker! He's coming back. Lost 20 pounds. 


Tomorrow he sees the urologist and the bladder cancer is back as he had a few days of cherry colored urine and clots last week. So maybe they can remove a tumor tomorrow. He missed a July 5th appointment to remove a tumor so...oh.


My hubby is living. He has an aneurysm on his aorta at 4.5cm, end stage copd, needs triple bypass surgery but can't survive it, needs bladder removed for cancer but wouldn't survive that either. His fev1 was 8% when he was admitted with pneumonia. Thursday he gets a lung CT and sees the Dr and will get a spirometry test. He has been dying for so many years all from smoking related diseases. I did not know smokers get bladder cancer a lot! 


I won't be blogging again for a long time, but my silence will continue to be golden.


My time is at a premium right now helping my Toby get one more day under his belt, living instead of dying.  I'm no longer able to help my parents in any way and haven't seen them since the end of May.


This quit is different than all the others. I quit to please my Saviour, the Lord Jesus Christ. I finally got very real about it with him and approached him and handed Him my cigarettes and will never forget it. I've been unwilling to go that far until July 14th.  


Another encouragement to quit was when I had quit in May and when Toby had his heart attack I didn't start smoking until 4 days later when they did a heart cath and said he needed triple bypass. That night I did a terror pity party and smoked 5 packs from June 11 to July 14 then quit again. He had said to me and I'll never forget it, Toby saying he was glad he lived long enough to see me quit. Awwww....


I want to thank you all for being here for me and each other. You all deserve credit for helping each other quit and I admire you all, especially the newbies who keep falling flat but coming back. That's been my journey as well.


One of these days I plan to be a regular here as I truly love the old timers that stick around to give of themselves to others. I just can't right do that right now but look forward to it someday. I do read the newsletter emails. So sorry for those in sorrow and pain. You know who you are. Stay strong. 


Very Fondly, Lenora


PS- my 86 year old dad smokes, has copd, heart, high blood pressure. I've noticed on the phone his breathing much worse. Sigh. Poor dad but, he's in for a rough time I'm afraid. The Lord knows. Many, many surgeries, major on his heart and aneurysms on aorta and iliac arteries. He's put together with duct tape and glue! Like the scarecrow on wizard of Oz. My superman.