Weekends in hospital

The weekends in a hospital are not exactly full of useful info. I mean a doctor looks in and does their thing.  

What I wish for is a heart to heart conversation, but Dr. P and I sort of had that on Friday. The Living Will and DNR papers are active for now. If he were to go home and come back, I'd have to make sure they know those papers need to be activated as every time a patient comes in, they are considered a Code patient. Meaning, they will save the life if at all possible.

This is pretty good information to know.

Her opinion was 'wait and see'. 

He did have a minor improvement in being able to breathe. Not enough to come off the High Flow Therapy. It is specialized equipment meant for those who have orders not to be put on a ventilator or a DNR order. However, according to studies, dramatic improvement happens in 24 hrs.

That drama has not happened. 

Rich and I discussed trying to find out Monday if he can somehow be put on Hospice at home to pass away. He doesn't want to fight and he doesn't want to stay in a hospital.

Saturday was pretty quiet at the hospital, I sat and read and spoke to the nurses who were all kind and very positive. Apparently Rich is a favorite patient as the nurses quibble over who gets assigned to him for the day. Steroids, antibiotics, and lots of nebulizer treatments all day, all night are what he has going on. 

Rich and I were able to have time to talk about things and his wish is to be able to get off the specialized equipment and to come home with Hospice involved. That would mean visits by a nurse at home and no re-admission with his next exacerbation of his COPD.

The goal for the weekend was to transfer him to a recliner and see if he could tolerate a reduction in the high flow therapy.

Sunday was interesting. Rich's ol' fishing buddy came to see him. While the two visited [Steve said Rich just slept part of the time], I met up with my Legend Girls for coffee for an hour. We chatted and told funny stories and talked about places we'd dreamt about visiting.

I spoke with his Resp. Therapist in the hallway and asked her if she thought he'd be able to come home with Hospice. I told her that we'd discussed it. She said that was an excellent program for him and his wishes. 

When I came back from coffee time, Rich's daughter, her hubby, Ariel, and Steve were all in the room. 

Since Steve was ready to leave, I took the advantage of that. Ariel and I went home to take Charlie for a nice long walk on our gravel road so he could do his doggy stuff. 

On the way back in...I  stopped to see the nurses. The daughter, her hubby and a surprise visit from our friends in Missouri had all visited but had gone out to lunch.

The nurses said Rich was exhausted. They put a Quiet Time sign on his door and I texted all visitors that Rich was not going to see anyone from lunch until at least 3 or 4pm, they had to see me first in the family waiting room.

So the end result of Sunday was that a lot of folks came by. He did get in the recliner. They did reduce the airflow on his High Flow pillow cannula and he did seem to have a slight improvement in breathing. 

He actually ate 3 bites of an omelet at breakfast, drank water, had a milkshake for lunch, and had half a little burger and a milkshake for his supper.

Monday. Today, I hope to get some sort of directions from a doctor as to whether our plan and goals are even doable. I will be calling the VA Social 'Miracle' Worker to see what our options are through the Veteran's Administration.

The Missouri folks will stop in shortly to see Rich this morning and then they will head home.

Tuesday afternoon we have a Winter Storm Watch with blizzard conditions possible, high winds, and either rain and snow for us or 6" of wet heavy stuff.
If I am forced to be home through the storm, I will catch up on rest, and get the laundry folded.

I have to include this in my update for this morning. People and neighbors are incredible. 

There were visits to Charlie, there was prepared food put in my frig, and groceries left on my counter. This all done just because.

911 where is your emergency?

I gave him my address which appeared on his call board as I called from our landline.

"What is the nature of your emergency?"

My husband, difficulty breathing, he has severe COPD and contracted a cold.

We went through his name, age, and a quick medical background. Then assured me that help had been dispatched and an AED was on the way.

I'd put Charlie in the bedroom upstairs, moved things around for the medics to make getting through the house with a stretcher easier.

The dispatcher asked that I put any pets in another room. Done, I told him, and I said I had to move my vehicle to make parking easier for the rig. 

Done, done, done....

The first vehicle to show up was a Sheriff's Deputy. A text from Olive on the ridge said that her husband had run out to the road to make sure they could find our address. [I'd texted her to let her know why she'd see emergency vehicles coming down the road with lights on]

Next came the the Fire Department Suburban.

I thanked my lucky stars that we didn't just have a snowstorm. 

The amazing part is that in this rural part of Wisconsin emergency services are quick, polite, and well prepared. A few times the head Paramedic asked me if his DNR bracelet was still in his wishes. I said that he stood by them and so did I. 

We drew the best ER doctor we could possible get. His father was a well loved doctor here for decades. Little Mac moved to the area several years ago to be with his father as he retired, leaving the Chicago Cook County ED. If you have ever been to Cook County ED, you know it is one of the biggest mad houses in the universe.

When Rich's fingers began to turn blue when I was talking with the ER nurse, things got hectic. Little Mac rushed in, the upped the 02 in the cannula, a respiratory therapist left to get a specialized mask. I stepped out of the way. I watched his body jerk and his eyes close as he struggled for air.

The specialized mask was put over his face and head. It is often used in ICU's and is the predecessor to being intubated and put on a ventilator. Again Little Mac asked if the DNR was indeed what Rich wished. I said yes. 

It took some time for them to get him stabilized. The respiratory therapists proved their mettle as they worked with the Nebulizers, the mask, and cared for him.

Once he was in stable but critical condition we discussed what next. Little Mac didn't feel he was stable enough to go quite yet to a larger hospital. He'd need special care with that portable ventilator.

To the doc's credit, he was able to communicate this to Rich. Rich asked to stay here locally. Little Mac said he'd have to come off the specialized mask. They spoke quietly about his wishes.

Little Mac went over it more than once. 

"Let me be perfectly clear, you want no life saving measures if you have another episode." He looked at Rich who nodded and breathed out. "Yes."

Little Mac looked at me.

"Yes, his wishes are my wishes. I stand by him."

~~~

So how does this feel? 
It makes your heart race, your chest hurt and your soul cringe.

While his daughter was still at the hospital I went to work out at the gym with my Fellow Legends.
Burning off the interior feelings of helplessness, rage, fear, and anxiety really helped. 63 burpees along with 63 dumbbell lifts, and 180 feet of lunges helped chill me down.

I was able to go back to the hospital and face the new attending doctor along with her questions. So this morning I'll bring in his Living Will along with his DNR papers so they can have it for their files.

I stayed all day and read a book while he rested and read a book. The library is providing good reading while I tend my soulmate.

I am weary but determined.

44 days out from the Prolia shot...

 Well I won't lie. I have aches and pains and I don't know if I should blame them on the constant shifting of weather or the Prolia injection. 

The hands hurt. I've had that before and did PT for the arthritis in my finger joints. Since I started going to the gym in 2018, the pain had nearly disappeared. Except for the times I've taken Osteoporosis medications.

So. What is it? Weather? Side Effects? 

The nurse had said. "Drink LOTS of water and you can take Tylenol for your aches and pains."

I did just that yesterday morning when I got up and felt once more like 💩. I swore, I was going to call the nurse and yell at her and swear off the next shot. I felt like a train had hit me figuratively.

I took 2 500 mg of Acetaminophen and went out to do chores. Hubby asked how I was doing and thought I should skip my Legends class at CrossFit. Nope. I said I had to go to see if I could get rid of the aches and pains.

Funny thing happened though. Between the Acetaminophen, the water, the workout, and the fun we had at the gym, most all the pain went away.

Us after a class this past week. 

We are in a CrossFit class fit for older adults. The tall lady next to me is one of the ladies who started the Granny Basketball league. She has had some very tough health issues this past year, but she remains positive and if SHE can remain steadfast, I can do it too. We call the class Legends. 

It is specifically for those of us who are not athletes and who are older beyond 55+ or more. We work modified workouts specific to our own abilities. We need to 'use it or lose it.'

AND...we share common support and laughter. Doing it together is so much better than trying it alone. Our class size is generally 6 to 8 people. But there were a few of our Legends that were on vacation this day.

Back to how am I doing with Prolia [denosumab].

So.

My hands ache more often. Some days my back has an ache or my shoulders ache or...well here and there I get some aches. I may be a bit more tired than normal, but that could also be related to winter days being shorter?

Right now? All of it is easily handled with Tylenol. 

I'm following the nurse's recommendations and so far so good. Fingers crossed.

Almost 20 days out from Prolia

Well here we are nearly three weeks from the injection of Prolia aka denosumab. I am still alive and kicking! 

Let's call it so far, so good. During our frigid spell last week, my hands hurt, I got a slight headache, and I had a shoulder ache. So all my interior alarms went off thinking I was in for some issues.

Truth is, none of it was an issue. I did as the nurse told me to do, took a Tylenol and drank lots of water. The thing is, none of the aches and short lived pains may have been from the medication side effects.

By later in the day I felt my normal self whatever that may be. As long as I could get outside [which I did in the frigid temps] and move around I felt much better. Moving makes me feel calm and takes my mind off from most things.

I spent hours with the VA Website trying to get my husband's email account [similar to an account used by health care centers] upgraded to their new and improved and super duper secure sign in change over.

Let's just say that if I were an aged disabled veteran with both memory issues AND PTSD, anxiety, and depression, the computer would have been thrown through a window and promptly beaten to a gazillion pieces.

I finally got through most of it and came to the very last step. The site asked for a phone number that is in hubby's name. So I put in our land line which has belonged to hubby since 1996. The same phone number that the VA uses to contact us.

The message came back to me: Phone number incorrect or not found. After 3 tries I got another message. 
You will receive a code to finish this set up via USPS in 5 to 10 days. Please return and use this code to confirm your identity.

I had other things to take care of that day, but shut my laptop down and walked away from it.

I had enough.

However, I feel good and am encouraged with each day regarding this new medication for Osteoporosis.

Now on to the next step. Getting Hubby ready for his grandson spending the weekend and his daughter and her hubby showing up for a visit. 

One day at a time. I hope your weekend is quiet.

We are getting a Winter Storm.

Prolia (denosumab) Injection

 So yesterday was my first jab of denosumab aka Prolia.

The weather for the drive to LaCrosse was shiite. Not bad like a snow storm, but by the time I got into the city of LaCrosse, the roads were slick as a whistle. When I pulled into a left hand turn lane ... ALL the ABS's went off and my 'Ru slid in protest and stopped.

It was one of those moments where you cuss under your breath and hope that no one else behind you does the same thing and whacks you in the rear end. The wait for Valet parking was long. Long enough for me to pull out of line drive around and then pick another parking area to use.

I walked back to the Clinic and Hospital and noted from that the time it took me to park far off and walk back ... none of the people waiting for the Valet had been taken care of yet. Well, that's a mid Monday morning for you!

I think the Valet staff was probably out spreading salt on the walk ways. 

That is all beside the whole point of going in to get the 'jab'.

I was nervous as all get out, let's just say that. When a nurse named Kayla called my name I stood up and followed her.
She had the most gracious smile. She looked so young which reminded me that on the outside, I looked like an elderly lady [Hubby says Lady is not the correct word...he prefers Wild Old One].

She had me sit in the chair and then she started to go over why I was getting denosumab...she quipped that Prolia was so easier to say. She said I could have the shot in the tummy or the back of the arm. 

I picked the back of the arm. She also said that we'd go over the list of things I needed to know after the jab so she could make sure I did not have an allergic reaction. Hey, and the shot didn't hurt! I did not cry, stomp my feet or even try to run from the room!

As she started going over the list and what to do...I commented that I'd read so many BAD things about Prolia but also heard good things from another person [Thanks Boud!].

I know that people trash-talk medications online don't necessarily represent the overall consensus of reality. So I asked her about all the terrible stuff I'd read on the 'net'.

Kayla's smile was so comforting as was her attitude. 

"I generally receive very few calls on this medication." 

We chatted about other things while I waited the allotted time. This nurse made my morning. 

So. What to watch out for? This medication may lower your resistance to fighting infections -- so for the first few months -- well, that is obvious. Since my husband is health compromised we don't allow anyone with colds to visit. There can be low back pain, muscle pain, joint pain, stuffy nose...the list isn't too long or terrible, but Kayla asked me to call if these things felt overwhelming.

So how is it going so far?

Nothing. The jab site doesn't hurt. I don't feel any different and my attitude is very positive right now.

Kayla assured me that there are ways to combat issues that could show up but also assured me that most of the time there weren't problems. Most of her patients tolerated this treatment well.

Comment on my paperwork: 
Age related Osteoporosis without current pathological fracture

The drive home was unremarkable. 

Again, I will say...if this was a medication that I needed to stay alive. I probably wouldn't hesitate. And in a sense, this is a medication that I'll need to stay active and upright. 

Would it be different if it was a diabetes medication that kept me from becoming comatose?

All choices are personal. Let's see how this one plays out.

I will continue to do Legend's CrossFit which is a toned down exercise program twice a week at my local gym and continue with hiking like I normally do. 

Get in the mood...or not.

  Oh sometimes I get in a mood. Certainly being stuck indoors does that to me. 

Introspection is like taking an x-ray
of your emotions,
thoughts,
and behaviors.

~

After all, being stuck inside makes me cranky. So I start thinking. How did I get to this point? Am I a good person? Am I happy? Am I...

Well, you get the idea. So much has shaped me [just as it does others] over the years.

Then I look in the mirror and realize that I am not the same person on the outside that I feel like on the inside. I feel no different than when I was much younger. My soul is the same, the package it is harbored in has changed.

Why do people see the outside and never the inside?

Why do we have to be so strong when we feel so exhausted.

Heavy thoughts for a grey day.

Next week is my first shot of Prolia which could become a lifetime commitment. Some of the pros and cons go like this...

Lifetime of shots every six months. 

The bones are like an organ. The spine holds the rest of me up. The bones support my organs. Without my bones I would be helpless. So the decision is to try and save my bones just as I would try to save my heart or any other vital organ.

The cons are there too. In the form of side effects. I'm going to think positive. IF I get along with the Prolia, quitting is not an option after a year or so. If one quits, the incidents of spinal compression fractures increase exponentially. The other choice was to try an infusion of the cocktails of meds that already led me to great pains.

That would have been once a year. Followed by IV steroids to combat the painful side effects. [yeah...um, no! Needles and IV stuff? Oh yuck!]

This all is going to occur right at the holiday time. 

Since I am having a moody few days, I may as well say it. The things I miss most are the family get togethers that are done this time of year. I do feel lonely. I don't have the option of just going to visit my kids and grands. [They all live at least 4 hours away]

My step family does ignore us during the Holidays. We became nonexistent once I stated that driving 2 1/2 hours one way to have dinner and visit then drive back home at the end of the day was no longer an option. 

Imagine having to haul all the oxygen equipment and medications. [and at that time, hauling my MIL who could barely walk and soaked her diapers if sitting too long] 

So I fight sad thoughts during the Holidays with a cheery smile and hide behind that smile. 

Not all days are like that. I do find relief in my own ways as long as I can get out into the woods.

Credit to Charlie Mackesy: The Boy, The Mole, The Fox, The Horse

Bones

I am writing this in this part of my blog as most people won't read it but I want to sort of track what I do with my health issue of osteoporosis. Perhaps my journey can help someone else make decisions.

I'm scheduled for a new scan to assess my bone density issue. Yesterday, I consulted with the endocrinologist, and by next Monday, I'll receive an updated reading. We explored several options for my future treatment.

Admittedly, I'm not thrilled about possibly needing medication for osteoporosis. Since my bone-building years are behind me, I require assistance to increase bone density.

As a child, my nutrition was excellent, supporting bone development. In contrast, my college years were marked by poor nutrition—typical dorm food—lacking in essential vitamins, despite rigorous training.

Being petite, female, and white also places me at a higher risk for osteoporosis, although I've never experienced a fracture.

We discussed a newer medication called Evenity, designed to enhance bone density over a year. Following that, I would have to transition to a biannual Prolia injection, provided I tolerate these treatments well. [Crossed fingers]

Reflecting on my age, I acknowledge the inevitable changes that come with it. Our bodies, including organs and joints, deteriorate over time. We turn to doctors for improvement, yet they cannot turn back the clock or always decipher how to heal us. The human body is complex.

We chase youth, health, and the reversal of aging's toll on our bodies, despite knowing there's no fountain of youth.

The advancements in modern medicine are astounding. Joint replacements, organ transplants, and treatments unimaginable a decade ago are now realities.

I'm going with this:

If you want some fun, look up 'curing osteoporosis' on the internet. You will get some really wild suggestions. I know, I looked. 

I've had acquaintances send me podcasts and TikTok links [sorry didn't open them] on how to Cure osteoporosis also. 

I'm not dying. I have a condition that is not painful, until of course I get a compression fracture or bust a hip or something. 

I want to continue my way of living, hiking, and adventuring as long as my body will allow it.