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Nightmare on Spague St. Part I
My husband of 53 years was diagnosed with Cerebral Amyloid Angiopathy in 2015. He has been pretty active in and out...going to get the mail...checking the backyard, busy, busy, busy. He drank two beers in the afternoon and about 3-4 fingers of bourbon since about 2019.
My problem was, he got to where he wanted to start drinking about 2:30 pm (1400) and drink until he went to bed usually before 7:00, sometimes 5-6:00, he got very mean and hard to deal with and he fell in the house a few times.
About 4 months ago, he decided he didn't like beer. He was drinking 2 drinks of bourbon sometimes 3, and trying to sneak some while I slept or was busy.
About the same time he hurt his ankle somehow and it was swollen and discolored, but he could walk. I gave him Cordyalis for the pain, just 1, but if that didn't take care of it I gave him another.
Until then, DH (his name is Don Henry, so those really are his initials. I may have to change and refer to him as DT for dear toddler, instead of DH for dear husband, though.)...as I was saying, up til then he made up his own medicine into daily doses and took them, except his bedtime pills, which he couldn't have until he was in bed. Because the Cordyalis worked so well I poured a few in a smaller bottle and set it by his chair so he didn't have to wait if I was busy. Sometime around the 15th of August he started complaining of stomach pain, was SOB. That was while So. California was on fire and the smoke filled the Greater LasVegas Valley,... and they are still digging up the desert floor between my house in Henderson and the Calico Ridge homes halfway to Lake Las Vegas.
Note: [Our air is filled with silica sand dust, cactus
thorns, toxic waste, and whatever else has
accumulated or been dumped there over the
last 80- 2.7 billion years]
DH has never had respiratory problems-ever- except when he broke 5 ribs in July 2020, and developed a pleural effusion. He was cleared by his cardiology group at that time and healed well and had no problems breathing since. So, that was a new wrinkle, (I'm the one with asthma and on oxygen etc.)
I also noticed he was breathing fast, sleeping a lot, almost all day, in fact and he had quit drinking any beer entirely, but fixed a bourbon sometimes 2:30-3:00. After about a week of this, it occurred to me I had not seen him take his pills for a while, so I ask him if he was taking his medicine and he said, "No."
I asked him why not, and he shrugged his shoulders. I asked him how long it had been since he had taken them and he said he couldn't remember. I asked why he had quit taking them, and he shrugged again. I said please, tell me why you quit, and he said, "I ran out and it's too hard."
When I went in to check. It looked like he hadn't taken any for about 3 weeks, and I saw the bottle with the Cordyallis on his dresser, and he had been taking those. So I took over all the medicines, got them organized etc. and took away the Cordyalis.
He went through everything looking for them, so I am sure he had been taking them all day and all night long. He was mad and wanted his bedtime pills at 2 or 3 in the afternoon, with his bourbon, which I would not do, so he threw tantrums and ran in and out the doors argued that the outside air was fine. He did, however, take his medicine but it made him mad that I stood and watched him. Then on the night of the 18th September he decided he wasn't going to bed unless I gave him his pills, so it was on... all... night... long...
said he could only breathe when he walked. About 5 o'clock am he was tired, collapsed in his chair. I was so tempted to just give him a benadryl, but I knew better, so I didn't. He wouldn't do anything I said to do and I told him, "If you won't do as I tell you or take anything I give you, I can't help you. I can call an ambulance for you if you want. Do you want me to?" He said, "No", then a few minutes later he said "Call the ambulance.", but like he was daring me to.
I did call them, and when they came, he ran to the door, and down the walkway to get in it. So, there was no assessment done on him. I gave them a copy of his medication list, told them his name, age, and birthdate through the door. He was there 4 1/2 days. He had pneumonia, an arrhythmia, high blood pressure, and a complete melt down....
I called my son at 0700 that morning and told him he had to get to the hospital, to take Copenhagen, to make sure they knew his dad was hard of hearing, has macular degeneration, chews tobacco, and is 36 hours with no alcohol.
When my son got there, he gave him a dip, told him where he was and why. DH was still mad at me and thought I was telling the nurses and doctors what to do. He told my son, "They think she called the ambulance, but I'm the one who said to call them." several times. My son said, "What does that mean to you, Dad?" and DH said, "I called them, so I can leave when I don't want to be be here anymore." my son said
"That's not how it works, Dad."
When my son left, he would put on his clothes and try to leave, He pulled a pocket knife on a nurse and ended up in four point restraints, unless one of my kids or grandkids were there with him. That was day one.
On Saturday, the 21st, in the middle of the night I called the IMC charge nurse and asked if there was some reason they hadn't ordered a nicotine patch for him, and gave him a background history. the charge nurse thanked me and said he would have a patch as soon as we got off the phone. We also spoke about giving librium to people going through alcohol withdrawal. I don't know if he got that, but DH slept that night so my daughter could go home, and from then on someone was with him around the clock. He went to the Cath lab the next morning and was cleared literally and figuratively, then discharged after I refused to send him to rehab, if I had to come down and sign him out AMA.
He came home with a new order for Amiodarone, a new drug to me, and double the carvedilol, and 2 new meds that have not come from the pharmacy yet, (who knows why?) Entresto and a diuretic spironolactone are the meds we are still waiting on. That is a another tale for another post..."Nightmare on Spague St., vol. II"
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Nightmare on Spague St. continued...
So, two nights later, I couldn't breathe due to asthma, DH was sleeping, however, so I was able to deal with an exacerbation of asthma around 10:30pm until 0500º when I started shaking my heart racing, etc. I knew I had to call 911, but couldn't leave him alone so I called my children and grandchildren and left messages for them...all their phones were off. While I was trying to reach someone to tell them, it occurred to me that I could be having an insulin reaction and low blood sugar, but I was shaking so hard and trying not to pass out there was no possible way I could do a test, but i grabbed a keto bomb from a tin I keep handy for just such an event, but it was so old (its been over a year since I'd had a low blood sugar incident) it tasted like battery acid, so I spit it out, and grabbed a coconut candy I had in a dish, and it was so hard it was l like eating rocks, so I spit it out.. I ran to the fridge and found ate slices of cheddar cheese. I immediately started to calm down a little.
I got out a container of Greek yogurt and a handful of Blueberry, Buckwheat, and Coconut cereal in with it and ate a few spoonfuls, and I fell asleep in my chair and woke up when DH came in the front room. It was almost 0800º, I had the yogurt container in my lap with the spoon still in it like I had just passed out. I got up out of my recliner to put the yogurt in the fridge, and was so short of breath when I stood up I was in an exacerbation of asthma, and my rescue inhaler in the front room by my chair was out, and had been for several days.
NOTE: [I had been trying to get a prescription for my inhalers called in for several weeks, b.c.I knew I was almost out.
I had just called and spoke to the answering service, who said they had a message to me from my doctor. He wanted
to know if it was the tartrate or the solution I wanted. (Evidently, the answering service had left out the rescue
inhaler part of my message to him.) I asked the person on the phone if they were ever going to call me to give me
the message from the doctor, and she said. "No, we just wait until you call back."]
I walked down the hall to the bathroom where I had an inhaler that still had some medicine in it and took four puffs and another one
of the 50/100 Advair Diskus while I was at it. I walked back to my chair, took 2 10mg methylprednisolone tablets and called my son's phone and woke him up. I said "you need to get over here now, he said, " I don't have a car... I cut him off, said get a ride, call a cab, steal a car...but I'm
calling 911 now" and I did.
I was admitted to the hospital for 3 days for L Lung pneumonia, where I had a reaction to the IV version of Augmentin, but they found a new
antibiotic eventually that I had not been given or had a reaction to called Aztreonam. It worked beautifully and I had no adverse reaction
whatsoever.
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5 ReactionsWhile I was in the hospital, my son and my daughter stayed at our house with their father. He was not sleeping. He
wouldn't go to bed for more than a few minutes then got up complaining of nausea, or SOB (shortness of breath), or a
headache, dizziness, etc. He wanted to sit in his chair and he wanted them to go get in his bed. He was better in the daytime,
but didn't want to eat. He fought with our little dog because he said that when he sat in his lap it made him sick and he
couldn't breathe. They took him outside for walks because he said it was the only thing that made him feel better
The day before I was released, it was particularly bad, both kids were exhausted and DH was as bad as ever. They were
blowing up my phone, my daughter was crying and my son was at his wit's end. They thought, as I did, that he was just trying to
get his way and misbehaving because I wasn't home. I also considered that he my have sun-downers, since he was worse from about
sundown onwards.
I was released on Monday evening around dinner time. DH came to the hospital with my daughter to bring me home. He was tired
and we stopped several times to catch our breath. He was glad I was home and so was I. My daughter left around 9 o'clock. I gave him his
meds and he stayed up until about 10, went outside a few times, for a few minutes, but that is normal for him...and although I don't think he
slept much he stayed in his room for the most part and we slept until about 0800º.
Other than the phone calls from insurance, Dr.'s offices, pharmacies, and home health services, it was an unremarkable day. I gave him
his meds, on time got him to eat a little nothing out of the ordinary...that night, however,...
He asked for his bedtime pills about 5-6:00 pm. I told him it was not time for them yet, but gave him his evening meds.
he went in his room about 7:00 was in there less than 5 minutes, said he had tried to lay down but it made him sick, I asked him in what way it
made him sick, and he yelled at me that it made him fee like he wanted to throw up. I said "Don't yell at me, I'm trying to help you, but I need
you to tell me how you feel so I know what to do for you." He said he was also short of breath and his palms were sweaty, but mostly he
was sick to his stomach, not in pain but felt like he needed to vomit. He also said he just wanted to sleep in his chair. I told him I didn't care
if he slept in his chair, that was fine. He asked again about his sleeping pills, but I said no, as long as he was up I couldn't give those to him,
but I did bring him some Nauzene, an OTC medicine for nausea that makes me drowsy when I take it. He sucked on it like I told him but was
gulping water. I tried to get him to sip the water so it wasn't so heavy in his stomach. He did settle down a little then, for a while. Then he was
up again and said he needed to walk so he could breathe. I asked him if he was dizzy, and he said no. I told him I didn't care if he wanted to
walk outside, but if he fell I couldn't come and look for him. So he ran in and out, then he would sit down, for a while. When he said he was sick
to his stomach I would give him another Nauzene. Then he would say he was going to bed, I thought he just wanted his bed time medicine, but
he would come right back out saying he couldn't sleep. I actually considered giving him a Benadryl, but knew better, however tempting it was,
about 4 in the morning, he did the fake go-to-bed act again, and I said, "You have not even tried to lay down," and he argued at the top of his
voice that he had laid down for half an hour. I pointed out that he had not gotten undressed or taken his boots off all night long, not once, so
he went in again for about 10 minutes and came out with a robe on and house shoes on. He said, "I tried and I get so sick I have to puke."
at which point I am thinking he is having panic attacks when he gets sick. So I brought him the rest of the Nauzene I had and gave it to him in
his chair and told him he needed to listen to me so I could help him. I told him he could take one whenever he feels sick, but he had to sit still
and take little sips of water while sucking on them. He told me then that walking fast was the only thing that helped him breathe, and I made
him look at me and I said, "That makes no sense, no one who can't catch their breath needs to walk, but I told him I would let him use my
oxygen or my nebulizer if he wanted. But he didn't think that would help, so we just sat here and he took Nauzene every half hour or so and I
reminded him to take small drinks not big ones, but about 5:30 am he said he thought I should call the ambulance...he said his heart was
beating fast.
Okay, I said, I will call them if you want me to, but you need to listen to me because this is important...if I call the ambulance and they take you to the hospital, they may not let me bring you back home again. I had to argue with them to let you come home this time. He was listening and paying attention to me. I asked him if he remembered anything about being in the hospital, and he said no. I said, "you pulled a knife on a nurse." He said, "I did?"
"Yes, you did. You wanted to come home and they were trying to get you to lay down. After that you were in four point restraints unless
someone was with you."
He said, "I think I will be okay."
"I do, too," I said. "But I have to figure out what is going on with you. Can you sit here and watch TV while I go check something out on the
computer?" He said he would and he did.
I looked up the new medications they had given him at the hospital and sent him home with. and there it was:
-taken off the internet October1, 2024
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3 ReactionsAmiodarone - Uses, Side Effects, and More
Medically Reviewed by Laurel Riemann, PharmD on Jul 31, 2024 | Written by Troy Lynn Lewis, PharmD, BC-ADM
" What are the most common side effects of amiodarone?
Tell your healthcare provider if you have any of these side effects that bother you.
⁃ Nausea or vomiting
⁃ Lung problems (see below)
⁃ Heartbeat problems (see below)
⁃ Heart problems
⁃ Liver damage (see below)
⁃ Low blood pressure
There may be other side effects of amiodarone that are not listed here. Contact your healthcare provider if you think you are having
a side effect of a medicine. In the U.S., you can report side effects to the FDA at http://www.fda.gov/medwatch or by calling
800-FDA-1088. In Canada, you can report side effects to Health Canada at http://www.health.gc.ca/medeffect or by calling
866-234-2345.
While less common, the most serious side effects of amiodarone are described below, along with what to do if they happen.
Severe Allergic Reactions. Amiodorone may cause allergic reactions, which can be serious. Stop taking amiodarone and get help
right away if you have any of the following symptoms of a serious allergic reaction.
⁃ Breathing problems or wheezing
⁃ Racing heart
⁃ Fever or general ill feeling
⁃ Swollen lymph nodes
⁃ Swelling of the face, lips, mouth, tongue, or throat
⁃ Trouble swallowing or throat tightness
⁃ Itching, skin rash, or pale red bumps on the skin called hives
⁃ Nausea or vomiting
⁃ Dizziness, feeling lightheaded, or fainting
⁃ Stomach cramps
⁃ Joint pain
Lung Problems. Amiodarone can cause inflammation in your lungs, also called interstitial lung disease. Keep all appointments to
check your lungs. Call your healthcare provider right away if you have any of the following symptoms of lung problems.
⁃ Shortness of breath, or any other trouble breathing
⁃ Coughing
⁃ Chest pain
⁃ Spitting up of blood
⁃ Fever
Liver Damage. Liver damage, also called hepatotoxicity, can happen when taking amiodarone. Keep all appointments to have your
blood checked. Call your healthcare provider right away if you have any of the following symptoms of liver damage.
⁃ Nausea or vomiting
⁃ Stomach or belly pain
⁃ Fever
⁃ Weakness or unusual tiredness
⁃ Itching
⁃ Loss of appetite
⁃ Light-colored poop
⁃ Dark-colored urine (pee)
⁃ Your skin or the whites of your eyes turning yellowish in color (also called jaundice)
Worsening of Heartbeat Problems. Amiodarone can worsen existing arrhythmias or cause new arrhythmias or abnormalities such
as arrhythmias called ventricular fibrillation and ventricular tachycardia. Tell your healthcare provider right away if you have any of
the following signs of heart rhythm changes.
⁃ Heart pounding
⁃ Feeling of skipped heartbeats
⁃ Fast or slow heartbeat
⁃ Dizziness or fainting
Eye Problems. Amiodarone can cause problems seeing and sometimes permanent blindness at any time during therapy. Keep all appointments to have your eyes checked. Tell your healthcare provider right away if you have any of the following changes in your
vision.
⁃ Blurry vision
⁃ Seeing halos around lights
⁃ Vision loss
⁃ Sensitivity to light
Thyroid Problems. Amiodarone can cause decreased thyroid function (hypothyroidism) or an overactive thyroid (hyperthyroidism),
which can be severe. Too much thyroid hormone can cause abnormal heartbeats. Keep all appointments to have your blood
checked. Call your healthcare provider if you have abnormal heartbeats or any of the following symptoms of a thyroid problem."
I called our Primary Care Physician's clinic immediately. I was almost 0800º by then and everyone was great...no one put me on
hold and I got through to the R.N. at the clinic who said she would give my message to the doctor as soon as he came in.
I checked on DH, in tge meantime, and he was nodding off in his chair by now, and gave him his morning meds minus the
Amiodarone, of course. By then, the other Dr. at the clinic had arrived and asked the nurse to call me and ask if I might consider giving
him a lower dose, to which I replied, absolutely not.
He has not had any since then, Is gaining strength a doing better everyday physically. He is back to checking the mail and taking
out the trash, cooking in the microwave, and even made up ice day before yesterday. I have a new outlook, and am grateful for what
we do have and can do instead of harboring regrets.
We both have doctor appointments the 29th of October and will take life as it comes from then.
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4 ReactionsWowie. Everything is relative. Your tale makes me feel like I'm dealing with small potatoes. It is good to get things written down and shared. We are fortunate to have a forum to share our emotional burdens.
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3 Reactionsabsolutely...at least i feel like I'm being heard.
Thank you all, so much.
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3 ReactionsThe story sounds very similar to mine, and the effect that I have had on the people around me and the people around them and so on and so forth.
I am recently recovered by titrating medication that was prescribed to help me to help me that Did more harm than good. A year ago, I was on 14 medications and being triage as nothing to do just keep comfortable.
Please feel free to read my post. I have much this year. if you’re interested in knowing more, please message me and I will share everything I have.
I hope you find peace and good health soon,
David
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3 Reactions