Tues DAY. One more to go.

Even Milk tastes funny to me. I hate that.

You guys know what a foodie I have been. Nothing tastes the same. Pepper & spices in the mos mild form feel like chemical burn in my mouth.

I can feel sodium/salt in a different way than ever before.

Now, somedays are better than others but I know its in the drug combinations & the way my body doesnt work right anymore.

This morning, couple eggo waffles with some fresh blueberries & a little syrup. Sound good?  EH!
Just ok. The sweet makes it bearable.

So yesterday I bailed. Signed off for anti anxiety island & prayed for sleep & rest.

It took awhile but mission accomplished.

Normally in recent past I have not been able to lie down. Well I force fed myself some more classic sleep positions. I woke a few times to cough up some hidden gems. I was in pain a few times & due to shortness of breath or palpitations or something I was awakened. I'll remember those & steer clear.

I was up to eat just enough to take eve. meds past sched but taken. I awoke 3-4 different times to pee. I considered that a good thing & not an inconvenience.

All in all I was up & down but I started trying around 300. By 5 I was well on my way & didnt truly get up til 6;30-7 this am.

I gave fair warning to the house & for the most part Was left alone in my battle for slumber. Thanx family. I needed that.

Now I need one strong day. Even a 1/2 day. I got Lee coming over to pick me up to go to the riverdale house. I can finally get some stuff I've been wanting & needing for a couple months.

Shaving kit & trimmer.
clothing. Tired of the same 5 t shirts.
Towels of my own.They dont last long with teens.
Tools
I'm gonna charge my bike & if its rideable I'm getting it out of there.(strength please Lord)
I gotta get some dog supplies & misc. stuff to feel like home
More pillows
Some insulated drinking glasses I have.
Forks & spoons. (dont ask)
I also got the cable guy coming to pick up equipment. But I bet they fuck up the timing & I aint waiting around.
I gotta check on & move the truck around to make it loo like someone has been there.
Definitely have things to do. Here's my chance. Gotta make the most of it.

Now here's the kicker. I take whatever appt the Dr.'s can fit me into. Considering my financials & what not it just seems to me to be humble & thankful for their graciousness & go where they put me. Plus I have learned patience better than most so I don't freak out or become a pain to deal with.

BUT!!!!!

 My arrival time for this thing is 1;30 pm. The actual cath isnt until 3;30 as long as everybody else goes to plan. So I could be waiting around awhile.

It also means my fasting sched & stuff is adjusted accordingly.

See most folks have their shit sched in the morning, all goes well, recovery time & out the door before lunch or dinner. They start fasting when they would normally go to bed & so no big shock to the system.

I'm good for my last food or fluid intake @ 5;30 am.

Do I go to bed early& start my day @ say 4;00. Get breakfast & meds then nothing for 10 hrs.

OR, do I stay up all night. Finish eatin around 400. Then go to sleep? Wake up groggy enough to ride to hosp. & get knocked right back out.

Which would you choose?

Either way there is a decent chance they will be keeping me overnight. But maybe not. Have to see how it goes. But that would be outpatient surgical release after 7pm. I've never seen or done that.

I'm preparing to stay. I'm preparing for positive surgery. I'm looking for to getting this part out of the way so we have all the info & can head toward the really heavy stuff.

You can tell the anxiety drugs from yesterday are still milling around in me. Thats good. I need to stay calm & focused to accomplish today's tasks. And hopefully gathering up this stuff takes my mind off of the other for awhile.

Have a Good Day.

PEACE!!!

Pre-anxiety day.

So my procedure isnt until Wed. @ 1;30.

But I'm already trying to prepare how the next 48 hrs are gonna go. Just being thorough??? I'm working toward an ativan afternoon is what I'm doing.

And if it doesn't get better than tomorrow could be a hair puller. Too bad I just got my haircut & of course she cut it too short & theres nothing to grab onto anymore.

I also have the fluid retention thing working for me.
See last week Doc said he wanted to try an "experiment" I figured that was his way of getting me to buy into taking this drug that I dont particularly like nor do I feel performs the way everyone says it should.

Then I had my clinic appt & after a day or so they called to check on me & I hadnt seen any change. The swelling comes & goes in severity but hasnt left this time. I'm abdominally bloated. It's all uncomfortable to the point of pain. Constant nagging pain.

I'm supposed to call in if I gain more than 2 lbs in a day or 5 lbs in a week. And I'm flirting with those numbers.

What to do. Cant miss this surgical procedure. So , suck it up for one more day & let the guru address the entire issue.

Originally I was prescribed 1mg of this new med a day. That has now gone to 2 mg twice a day & the clinic said I could get a 3rd dose in just keep the dosing 4-6 hrs apart.

Why arent I using the stuff from before? Was the dosing too high? Am I doing damage to myself with that drug? It seemed to work alot better.

I'm truly afraid I'm gonna have another hosp. stay to get the fluids off of me again. And thats a big fuckin needle. It's not alot of fun to have them stick you in the gut & suck out all the juice. Feels better a day or so later but the whole thing is like walls closing in on me.

Drug therapies not working. Next comes organ failures. I already dont have the memory or mental capacities due to lack of blood flow & thats a tough pill for me to swallow.

It's all supposed to reverse if I can get this lvad & my blood flow is back to normal but right now thats still a dream away.

I feel like I'm staring down a barrel of a gun.

Anyway, today I've had enough. I'm taking the anti-anxiety. I'm knocking my self out for the afternoon & eve. Nice shower first. Fresh jammies then I'm done. Not coping well today. Maybe that puts me in a good place for tomorrow & keeps my fluid intake down 2day. My 2nd doseages will just have to wait til this eve.

PEACE

Days of DID cause

So my last post was written a bit tongue in cheek. I've switched Dr's & meds & all types of things in the past. I read everything voraciously. You think you label read? Come shopping with me. Bring a calculator. You're gonna need it.

But that isnt the point. While attempting to laugh in the face of very serious drug changes & interactions. After doing all my study & homework there is still one thing you just can't be sure of.

How is this stuff actually gonna work in MY body from a real world, practicality standpoint? Well kids, there's only one way to know for sure. Get yourself a drink, pray to the gods above & the large number of pills in your hand. Toss 'em back, take & drink & while looking toward the sky ask God for a little support. Or, hate to admit it but if it's gonna happen, take me quick. There's nothing fun about suffering.

I think that's why its called suffering.

I have some experience with this stuff so rather than take all 4 new meds @ the same time I did spread them out some. & 1 was directed as a p.m. med so that gave me some time also.

Call me paranoid but I know what to look for. I been doing this a long time. I could feel some minor side effects. Upset stomach, nausea. OK gotta alter the diet timing. Drowsy. Not always a bad thing. Could be a side effect to be taken advantage of in the short term.

They expected this new diuretic to work immediately. They just dont with me. I had an I.V. infusion on Mon that took until around 10 pm to really make a difference.

Anyway, I could feel the new diuretic literally sucking the fluid out from my head down. In a very unpleasant way. Plus, a headache. Which if you're not aware is a sign of dehydration & not the best thing to have happen while on pills that are made to remove water. Too much of a good thing.

BUT, no release of fluids. For over 24 hours I feel side effects. Pain, muscle fatigue, inability to function on any level.

And then there's the new anti-depressant/anti-anxiety drug. Its supposed to be a good one. Doc said take this at night. It will make you drowsy til you get used to it.

Drowsy? knocked me out immediately. Slept restlessly for the next 14 hours only to be accompanied by cramping, the dehydration, & what I can only describe as short term, not always happy, Lucy in the Sky type hallucinations. Sleep talking. My sister thought maybe I was talking to my mom &/or dad. Both passed in 2007. This scared her some. OK fine, it freaked her out. Didnt do much for me either.

After talking to the dr's ofc I think their main concern was I wasnt releasing fluids. Not MY main concern but Hey, What do I know. While speaking w/the PA she had the Dr on the othe line. The remedy??????

DOUBLE the dose. That lasted one attempt.

All meds had to be stopped. All of them.

I could not eat
I could not breathe
I could not sleep.
I could not stay awake or involved in conversation.
Total lethargy.

Diarrhea,
urination,
vomiting
But I had gained over 5 lbs in less than 2 days & it was only increasing.
And I'm not eating. So where's it coming from?

AH.......can't pee. Diarrhea increases.
Dry heaves to the point of bloody sputum.

Some violent shit here. Only to be accompanied by the inability to escape thru rest.

My diet was Carnation instant breakfast & Ice water for 3 days.

I made it to Monday. It was easy to see I didnt look good in the eyes of the public. But I made it.

We changed a few things. Took a couple new tests. Went back to some of the old meds.

I've eaten real meals the past 2 days. Not much but food I have to chew. I have dropped all the gained weight & am back to 156 which is where I was when this started. I still need to drop some more but it's easier to breathe & sleep again. Small steps are getting better results.

I'm sure I've missed a few things but I'm still not 100%. So have a heart. I fill in the blanks as they fill in themselves.

But I made it. I didnt think I was. I asked a couple times to make it stop right now. I've never felt anything like it & wouldnt wish it on my worst enemy. But even when I was beaten, there was still a dim light of hope. My mind would kick in & show the way to get out of this. I listened. I followed the plan. I did all I could to minimize the pain & maximize the comfort. Little by little I started to come out of it. I made it to the appt I'd been waiting a month for. I told you these girls were good. A month long waiting list for a heart failure clinic??? They have some chops.

So, thats it. I'll be back soon I hope & we'll continue as I can.

PEACE