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UkrainianTracksuit
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« on: February 17, 2019, 04:10:02 PM »

A handful of years ago, my father had open heart surgery to replace or repair a valve. He's never told me the exact diagnosis or whatever-in-the-hell happened. Just, at the time, he had open heart surgery and then I overheard "valve" about a month ago. Up until the end of last year, he was doing pretty well. Working steady and had energy. Keep in mind, he had a life of smoking (like 60 years of it), alcohol (about 35 years of it), uppers (military career, not sure) and generally the fast lane for a significant portion of his life... so the damage was done. He never made dietary changes either. He has stress and resulting crazy hypertension. He's own his own, for numerous reasons, to be succinct.

The information I get regarding his health is spotty because he doesn't tell me a lot but I definitely know something is wrong now. Will I get a straight answer? No. Does he give them straight answers at the hospital? No, either, because even at his age, he still works AND wants to work.

Since early January, he's been in and out of the hospital. And to be honest, where he lives, the doctors and nurses are dingbats. One minute they say it's influenza, then they say it's his heart (that crew was right on) and others said pneumonia (those ones were partially on the ball too). As far as I know now, he's got fluid in his lungs and his heart is getting weaker. Put two and two together: pulmonary edema caused by left ventricular failure. People forget I am kinda medically astute on things.  ::)

He's been actively seeing his cardiologist but what the hell do I know? Again, thanks to this wonderful socialized Canadian medical system (being sarcastic here), a patient has to wait for tests, even when ordered by a specialist. The GP isn't too bright either... so it's a circle of dimwits. It's a circle of him getting better and then sick again and then better and then sick now...

I keep asking well, what are they doing for this problem? What are they doing for that problem? It's all a system of "hurry up and wait." Obviously his latest ECHO showed problems (that I know) so I ask, well, what are they doing next? Radio silence.... waiting for the cardiologist to reach out to one out of town and go from there. It just does my head in.

This post makes absolutely no sense but I just needed to get this shitshow off my chest. I am so stressed and just have this gut feeling I'm going to get a call, and then, be stuck with tying up all these loose ends. Not exactly sure why I'm shocked because Russian men die of heart issues like chickens end up as McNuggets... But this stress, ugh. And since my father was never really a likeable man, yay, it's me that gets these surprise messages that he's sick.

Actually, I'm not shocked, but I am just one tiny human being managing so much stress. Something is just going to break!

Does anyone know what the prognosis is like for left ventricular failure? With pulmonary edema? Obviously, CHF is involved.... he takes Lasix for that, since his surgery, I guess (well, he talks about diuretics and blood pressure pills). Now that I see them, he's got all the symptoms of heart failure. Obviously I can't do a lick in any of this... but damn it all.
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iolaire
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« Reply #1 on: February 17, 2019, 05:57:20 PM »

Sorry for such a stress.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kickingandscreaming
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« Reply #2 on: February 18, 2019, 05:43:49 AM »

UT- it's awful when you are saddled with the stress, but have no real power to intervene.  I'm sorry you have to deal with this.
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Diagnosed with Stage 2 ESRD 2009
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UkrainianTracksuit
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« Reply #3 on: February 18, 2019, 07:16:38 AM »

Thanks guys.  :cuddle;

It is very frustrating. He was last in the ER (for obvious symptoms of heart failure) on Friday night. So, as usual, you sit, wait for hours, have some blood taken, a chest x-ray, and see a jack of all trades doc to say what a patient already knows. And then, "call your doctor to go further." Kinda difficult to do when a) today is the stupidest of all the stupidest statutory holidays (Family Day) and b) GP is difficult to see. However, knowing what I know from enough cardiology appointments, his medical history and Dr. Google, it's just not a good prognosis.

When my grandfather was nearing end of life, I had anxiety over answering the telephone. This is the stage I'm entering into now. I am an only child and my parents got divorced while I was overseas. (Old man had an affair with a young thing. *shudder*) So, heavy burden on me. My father is lackadaisical over it all but yet keeps going for help. It's like how many doors does one have to bang on before someone does something? He's had all sorts of tests and then.... nothing... but they openly admit that a part of his heart is not functioning properly and its damaged. Hmm...

My father doesn't want me going to the doctor with him because he thinks I'm still a dumb runt of a girl. So, I thought about sending my husband, but he's as useless too. He cannot keep up with English language medical conversations so it would be dumb and dumber in the room.

Unless they told my father that he's at the end of his rope and never told me. Not exactly a nice conversation to have BUT I'd like a heads up to be prepared since, as you know, I have my own stuff to manage too.
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lulu836
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« Reply #4 on: February 18, 2019, 11:11:08 AM »

@UT.........I too was any only child so I sort of have an inside track on that part of your stress.  I passed up a primo job many years ago so I could stay in my home town where my parents were.  I figured that they would need me when one of them crashed and burned.  Sure enough I got THE CALLL one morning that I needed to come to thier house because there was an emergency.  I went, called 911 and all the other small things the "rescuer" is supposed to do and by the time I arrived at the hospital I was pale, sweaty and my BP was 205.  ER doc wanted to admit me as well but I refused.  I was useless when I was needed the most.
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Of all the things I've lost, I miss my kidneys the most.
UkrainianTracksuit
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« Reply #5 on: February 18, 2019, 05:31:52 PM »

Yes, you get it, a lot, lulu. You do have the inside track. You're right that in the end that we wear ourselves out and end up being the ones that get sick, too.

My father called, as we discussed he would check in with me. Point blank I told him that he has textbook symptoms of heart failure and he better be on the phone tomorrow advocating for himself, since I can't. So, again, he says, he knows... everyone tells him a part of his heart isn't working. His plans tomorrow? Work. He's going to work (entrepreneur sort of thing) even though he barely has energy. He'll check in again tomorrow... but who is the nauseated one now? Me. Nerves.

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Charlie B53
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« Reply #6 on: February 18, 2019, 06:25:08 PM »


Try to understand that your Father is from the old school, when Men denied death up until the very last minute.  They know they are going to die but refuse to give in and slow down only enough to keep going. Pacing their activity so to keep going without quitting.  Unwilling to accept defeat they keep pushing on until they fall in their tracks.

These Men are driven to continue to make progress at near any cost.

About the best you can Hope for is an agreement to limit his hours and days.  Get him to agree on working only half days, or every other day.

If near enough, perhaps get him to agree to spend more of that 'off time' with you, or maybe even in taking up some relaxing occupation, a movie, fishing, etc.  Some non-physical activity.

The worst thing you can do is chain him into a chair doing nothing.
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UkrainianTracksuit
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« Reply #7 on: February 20, 2019, 11:13:51 AM »

Oh I know you're right, Charlie. It's just frustrating. I wouldn't mind him working if he actually had appointments and a care plan established. Work is his sanity. How he works with little air is beyond me, though.

He worked yesterday but didn't call the doctors. How typical of him. Now, he says he's going to do that today.  ::)

And to be honest, it just shows the stupidity of the medical folks here. His GP wants to do a scope (I guess down his throat and also up the caboose) to see if an ulcer is related to indigestion. First, after the whole world agreeing the heart isn't functioning properly, and indigestion is related to that, what in the actual *beep* is the point of this scope? And secondly, why tell someone they need it/will do it, when not even a time frame to get it done? Like oh, when it happens, it happens?

Last night I went blue in the face explaining things to my father.
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UkrainianTracksuit
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« Reply #8 on: February 26, 2019, 07:49:58 AM »

If someone has better communication abilities than I do, can you please contact the Reptilians or Raelians or whoever is in charge now to give me a break?  :stressed;

Dad is in the hospital again. He sounds awful. No energy to speak on the phone. He has a catheter (for peeing) so obviously there is an issue there.

What I scare I had. I called him last night to make sure he had food etc with everything being closed and there was no answer. So, I left a message thinking it was too late and he'd call in the morning. (It wasn't too late.. early enough to drop in if need be.) No answer and no call back. Called again this morning. No answer. Called his cell phone... he answered sounding awful and in the hospital.

Just having a bad feeling in my guts all over. It doesn't help that my transplant meds have decided to wage war on my stomach after all this time too. Come on, now... 
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PrimeTimer
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« Reply #9 on: February 26, 2019, 08:44:16 PM »

Been there done this (with my late mother) . After years of it I finally had to let go to concentrate on my husband's illness. My Mother wasn't doing her part and after years of being the only one to look out for her and dealing with her games I just could do no more. In the end I stopped fighting her and let her do what she wanted. Not that it made her passing any easier but I know I did everything I could for as long as I could. You need to concentrate on YOU now and that gift of life you have received (new kidney). Don't be so hard on yourself...we think we can but when it comes down to it, we cannot change people if they do not want to or see the need to. You've been a very good daughter. You'll be even better if you don't allow yourself to get sick from worry. You have enough on your plate in fact, it is overflowing. You can only do so much...don't let this suck the life out of you. It will leave you feeling even more resentful so don't do it.
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
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Charlie B53
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« Reply #10 on: March 01, 2019, 06:16:42 AM »


One of the most difficult things to do is realize that you MUST take care of yourself FIRST.   It isn't being greedy or selfish, it is realizing that if you are not well you cannot help anyone else.  Your self preservation is essential so you can still be around in order to help anyone else.

ONCE YOU LEARN THAT THEN ANOTHER HARD LESSON IS TO REALIZE YOU CAN ONLY DO SO MUCH FOR ANYONE ELSE.  they HAVE TO MAKE THE DECISION TO ALLOW YOU TO HELP.   f'N CAPS LOCK BUTTON, OOOPS!'

You cannot brow-beat anyone into accepting your help or suggestions.  You almost need to take a few Psychology courses in order to LEAD their thinking in the direction you need them to go.  This isn't always so easy.  It takes a lot of patience, time, and a whole lot of thought.  Fortunate for me, I took all those things long long ago while still in college.

In my Wife Patsy's case, the cumulative brain damage from so many 'micro-strokes' I filed a Motion with the Court and Got a Court Order appointing me as Guardian/Conservator of her.  This covers not only financial affairs but medical decisions as well because Her Drs had to complete Court Questionnaires and spelled out that Patsy is no longer capable of making these decisions responsibly, that she no longer has the capability to fully understand the Pros and Cons of issues.

I order to provide sort of a check against myself I included our Daughter as Co-Guardian.  This helps Dau feel that she has a larger say so in her Moms care.  But my major reasoning is as an elderly/aging Dialysis patient I could keel over any time without warning.  I wanted Dau empowered already so she wouldn't have to waste any time with the Courts to gain the Authority she already had now.

But you have GOTTO take care of yourself First.   Only then can you be able to help care for anyone else.

Stay Careful, ask if you think you need to, we will be here for  you.

Charlie B53



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Alexysis
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« Reply #11 on: March 02, 2019, 07:16:44 AM »

Your dad sounds a bit like my late father; stoic and determined. My dad finally started taking better care of himself after he retired, but once my mom died, his diet became pretty bad. I finally convinced him he needed 'assisted living' when the town started to complain about the way he was letting his house and lawn decay. He lived in assisted living for the next 10 years, and some of them were pretty good; he had at least 2 'girlfriends' during that period.
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UkrainianTracksuit
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« Reply #12 on: March 03, 2019, 06:40:00 AM »

Thanks everyone. You are awesome people.

I really donít want to speak ill of my dad but facts are facts. He is living alone because heís not really a nice person. When you treat people badly, few stay around you, and this is apparent in old age.

Like I said, he had an affair with a younger woman late in life, so my parents divorced. My mom said itís sad the state heís in but he could have had a wife to take care of him and be on top of things. My mom is years younger so it would have worked out well. But.....



My mom adds into the stress too because she still has resentment. She tells me, ďDonít think youíre getting any money out of this. Everything is going to X and Y.Ē Duh, I know, my dad took me out of his will some years ago because we had a spat. I donít care because SOMEONE here has to not be an asshole. Iím the kind of person that would let guilt eat me alive if I didnít do something.



My dad helped in the care of my grandfather and he is ďmy dadĒ so I love him, regardless, but he was VERY strict. Being in the military first and then as a businessman, he was an absent parent most of the time. He was rude and misogynistic towards me. Heís a womanizer. But still, heís my dad. So, we have very little of a relationship. I lived with my parents for most of my life* and Iíve talked to my dad more than all those years put together. Obviously, I am concerned for him but I am annoyed, too, to be last man standing to handle it all. (* Edited to say this sounds dumb, because obviously, childhood, teen and a bit of adulthood doesn't constitute much!)

I guess the heart is secondary to the main issue going on. But, heís still in the hospital. Iíll be relieved if heís cleared for cancer, which has now been brought up. At least this time it seems as though his issues are being looked into seriously. He sounded better on the phone but now itís a waiting game to see what gets done.

I guess I never really thought about the mortality of my parents, seriously, until now. To be honest, I thought of my own and going before them.

As for taking care of myself, I donít know the first step. That may be removing myself little by little from the situation. But I am not going to get wound up over anything right now. Heís in the hospital and they should be sorting things out or at least giving diagnoses to know where to go from here.



As for the quality of health care, ha!, not my problem.
« Last Edit: March 03, 2019, 06:48:30 AM by UkrainianTracksuit » Logged
iolaire
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« Reply #13 on: March 03, 2019, 11:57:13 AM »

UkrainianTracksuit I think long term you will be happy or at least not feel bad that you cared about your father today.   

Most family relationships leave a lot to be desired, but they are what we have, so we do our best to fit in and love each other around our stress points.

I hope you are able to pull back some and have more  focus on your joys.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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« Reply #14 on: March 03, 2019, 05:53:51 PM »

UT:  You are probably right. We have to be able to live with ourselves. There are choices we make and then there are choices we HAVE to make. I guess if I had a crystal ball I would've seen how my mother's choices were going to affect me and then how my own choices for handling it/her affected me. I see where I should have set limits. Perhaps you are right and you know what your own limits are and right now, you are doing what you believe is the right thing to do for both your father and for yourself. Your father is very lucky to have you for a daughter! Hope things start to get a little easier. One day at a time....   
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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« Reply #15 on: March 04, 2019, 12:14:34 PM »

UT, I don't know anything about your relationship with your husband other than what you've shared with us here on IHD, but I can't escape the feeling that your husband is a somewhat emotionally needy man and is quite demanding of you.  I apologize if I've got the wrong end of the stick.  Anyway, if this is indeed true, the notion that your father might not be sharing much about his health with you could be a blessing in disguise.  My biggest fear for you is if your dad may end up needing more of your time and care than you anticipate, and that your husband may give you grief about that.  I don't want to see you stuck between a rock and a hard place.  Have I made any sense here?  LOL!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
UkrainianTracksuit
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« Reply #16 on: March 04, 2019, 02:58:46 PM »

MooseMom, believe it or not, but my husband wasn't needy at all before.  :lol; It's when I moved him here to a place where he has no friends or no family. So, I provide all sorts of social interaction roles! It's hard.... So you're correct in that regard.

My dad and my husband used to get together for coffee or lunch, just so that my husband had someone to talk to, and even he would say stuff like, "your dad doesn't look good." So, if I had to give extra care to my dad, my husband would be supportive. He went through the passing of my grandfather with me and he was actually really supportive. He respects his elders.

My husband would also ask my father if he did x, y and z or brought certain medications to the doctor, to be checked out, and obviously, dad didn't. So, he's concerned, as he would be for a friend/acquaintance, but he's thrown his hands up in the air too. Today at an appointment, because I was a bit hardheaded, he said, "you're just like your father!" That was a gasp moment.
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MooseMom
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« Reply #17 on: March 04, 2019, 09:02:41 PM »

I've very happy to hear this, UT!!  This is a difficult time for you, so I'm glad your husband is supportive!  And it is also good that he sees first hand why you feel so frustrated with your dad! :thumbup;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
UkrainianTracksuit
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« Reply #18 on: March 05, 2019, 05:44:56 AM »

Although he's supportive, he's also going home for a visit soon AND he travels for work sometimes. It's usually these times that I need him and I'm just ugh, alone. Such as last week, he was up north, and I get the dad news. Sigh! But he's good otherwise in these sorts of situations...

Now if we can only find him some friends...  :pray; :pray; :pray; :pray; :pray;
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UkrainianTracksuit
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« Reply #19 on: March 08, 2019, 08:02:49 AM »

So, now I learned what people mean when they say my dad is indestructible. I believe that he is a prototype of the New Soviet Man that they threw out because he didn't display communal or kind beliefs. But, the rest is all there. He got out of the hospital, didn't call to tell me AND WENT TO WORK.

He was cleared of suspected cancer. His heart is stable but needs follow up. His kidneys are not so good but we knew that. He had around 40 % function a few years ago, had a biopsy, stopped smoking, stopped recreational drinking and they stayed stable. He sounds... good! And strong! A hardcore old paratrooper. He's going back to work today too!

So, I learned a lesson. That old man is hard to kill... like clubbing a snake. Until the next time he scares the crap out of me.
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