Have thrown a hissy fit

All posts from Jan 1st 2011 to Dec, 31 2011

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Ozchrissy
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Have thrown a hissy fit

Post by Ozchrissy » December 8th, 2011, 11:47 pm

Well I have finally done it, I have done my block at my cardiologist. If he doesn't do anything soon, (in the next hour) I am taking myself down to Melbourne and am going to present myself at the Hospital Emergency.

I have just finished reading the American Heart Association guidelines with regard to endocardial growths in the heart and I quote 'endocarditis remains a disease that is associated with considerable morbidity and mortality'. I haven't heard a word from him since Monday and I have had enough.

This has been going on since September 23, and I am not going to let it go on any longer. There is ample proof of the endocarditis, from the echocardiogram, so I want it out or dealt with NOW.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

JoeNH

Re: Have thrown a hissy fit

Post by JoeNH » December 9th, 2011, 12:42 am

Chrissy,

First let me say that I'm glad you have thrown a "hissy" fit, as opposed to several "other types" of fits which are much more messy to clean up. Thanks.

Humor aside here, it is reasonably clear to me that "growths," be they fungal or be they infectious are not something you see or hear about, in the heart, with any sort of regularity. It is rightfully a legitimate concern.

I have to be honest here. I just don't know what the heck the medical protocol is in a case such as yours, but I seriously doubt that "do nothing" is among the alternatives. If I were similarly situated, I suspect I would expect the MDs to be moving like their pants were on fire, to attempt to bring resolution to the situation. Personally, I think you've been very patient.

It's difficult for me to measure the response from the Aussie medical system and compare it to Uncle Sam's. I just don't know if this sort of measured response is characteristic. In Uncle Sam's medical world, I'd be concerned that nobody appears to have their eye on the ball. But who am I to just the world down under ?

But as a fellow human being, I think your expectation that the MDs communicate with you, REGULARLY, as matters are progressing, or as they don't progress, is COMPLETELY REASONABLE. It is clear to me that your condition does merit their attention.

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TruckerRon
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Re: Have thrown a hissy fit

Post by TruckerRon » December 9th, 2011, 1:09 am

JoeNH wrote:But as a fellow human being, I think your expectation that the MDs communicate with you, REGULARLY, as matters are progressing, or as they don't progress, is COMPLETELY REASONABLE. It is clear to me that your condition does merit their attention.
Yes!
Amen!
Take no prisoners!
(scratch that last one)
TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

Non-ischemic cardiomyopathy
Medtronic Viva XT CRT-D
No shocks yet...
My intro is at: http://www.icdsupportgroup.org/board/vi ... 099#p57099

vikki
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Re: Have thrown a hissy fit

Post by vikki » December 9th, 2011, 4:35 am

Good on you Chrissy, let 'em have it!
xx Vikki xx

ICD implanted 20th October 2010 - Boston Scientific
Hypertrophic Cardiomyopathy diagnosed 2006
throw in some VT & A-Fib and that's me
Meds: Diltiazem 180mg, spriractin and chlorthalidone 25mg, Amiodarone 100mg, Asprin 100mg, Thyroxine 100mg


Loves of my life - my husband, my two beautiful boys and chocolate!

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mrag
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Re: Have thrown a hissy fit

Post by mrag » December 9th, 2011, 5:11 am

Chrissy wrote: . . . endocardial growths in the heart and I quote 'endocarditis remains a disease . . .
Wait a minute, that sounds like some sort of diagnosis. At least something more expensive that an 'unknown veggie growth' so some progress is being made. I agree though that you have to stay on the doctors and be persistent (another term might be 'annoying'). I'd keep hitting them with "what would you do if you were me?," "is this the way you'd handle your own mother's case?," "why does it SEEM no one has a sense of urgency?," "is this a case where maybe moving faster is better than farting around?"

And as real insight, just keep in mind, life is morbidity and mortality.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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Ozchrissy
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Re: Have thrown a hissy fit

Post by Ozchrissy » December 9th, 2011, 5:15 am

I still havn't heard back from him, and I took some of my 'mothers helpers'. Lauren is refusing to take me to Melbourne, says I should just wait till Monday, they are working on my situation et. etc. I will see how I feel tomorrow morning, but at the moment I am so stressed out I could get violent. Want to punch in a wall or somethng. Will be taking stock of my situation tomorrow morning after a sleep and if I still feel the same way I will be taking myself to Melbourne.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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mrag
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Re: Have thrown a hissy fit

Post by mrag » December 9th, 2011, 5:27 am

News Flash....it's Friday or Saturday. Over here, one tries to avoid weekend hospital stays. The only people working then are the ones with no seniority to get out of weekend work. My suggestions: Take another "helper" and listen to Lauren. Build up energy and plan for full out assault on Monday.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

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dadmanbob
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Re: Have thrown a hissy fit

Post by dadmanbob » December 9th, 2011, 7:55 am

Chrissy just do what ever makes you feel better. It is your life and you can take control. I do and really mean I do know how you feel. You and I have been going round and round with our DR's for a while now.

There are times I feel things are urgent and the DR's feel they are not. Good luck to you and good health to you.
BOB
ischemic cardiomyopathy NSVT, stent 1 left side 4/5 &1 right side on 6/9 2011
MI Heart attack unknown when it happened 20% dead muscle
CHF-3, PVD, CAD, CKD-3 & EF 35 now 55 12-19-11
ICD ST JUDE 6/29/11, CD2215-36Q, RVA LEAD, RA-LEAD
Med's
AMLODIPINE 7.5MG AM 5MG PM,ISOSORBIDE MONO. ER 120MG, PLAVIX 75MG
ASPIRIN 81MG,HYDRALAZINE 50MG X4,CARVEDILOL 50MG AM/PM, LIPITOR 80MG
Spironolactone 25mg am/pm,FUROSEMIDE 40MG, Calcitriol .25mg mon,wed,fri
ZANTAC 150MG

I welcome my ICD he is Electron a transformer

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Suzanne
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Re: Have thrown a hissy fit

Post by Suzanne » December 9th, 2011, 8:51 am

Chrissy, how you're feeling is reminding me of one of my past situations. I feel for you.

I went to the hospital on a Friday, because I had requested for my ICD to be interrogated. I had had 11 "episodes". 4 were legitimate ATP and 7 were false. When they were trying to speed up my heart, it wasn't working so they sent me for a chest xray and then informed me my lead was dislodged. The EP told me to come back the following Thursday to fix it, and let me know that in the mean time I could be shocked inappropriately because the lead was floating (tickling) my heart. I took a "hissy" fit so they rescheduled it for the following Tuesday instead. That was the worst weekend of my life. By Sunday, I couldn't take it anymore (living in fear, afraid to move for fear of being shocked), so I had my spouse bring me to the ER on Sunday night. It was three days early, but I couldn't take the stress anymore. The on call Cardiologist admitted me, and even he said I should not have been sent home on that Friday.

Some things might not be urgent to some Doctors, but when you're the one living with the situation, it is not easy to deal with. Looking back, and knowing what I know now, I should have insisted to be admitted immediately. Like Al said, they won't do anything over the weekend, but you need to do what's best for your sanity.

You're living with the situation, not anyone else. It's hard to sit back and wait, especially knowing what you know.

Good luck with whatever action you decide to take!!
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

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wen
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Re: Have thrown a hissy fit

Post by wen » December 9th, 2011, 9:06 am

Hey Chrissy,

I'm so sorry for your stress! I was reading on the subject a bit and noticed that the first course of action for endocarditis is to start
strong antibiotics. Did they put you on anything? That is something that could be working in your body while you await your Melbourne visit on Monday. Try not to let yourself get too worked up. . . that can only do more harm than good!

Thinking of you,
Wendy
Left Bundle Branch Block
Non-ischemic Cardiomyopathy
V-Tach
ICD-Boston Scientific Teligen (2-lead) installed 7-7-09

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beachjay
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Re: Have thrown a hissy fit

Post by beachjay » December 9th, 2011, 9:15 am

I don't blame you for being upset. As it is the weekend I think Lauren is right to wait until Monday. Take a 'happy pill' and hang on until Monday..Hugs.....
Jacky in Texas

Time you enjoy wasting is not wasted time.....Bertrand Russell

JR1966
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Re: Have thrown a hissy fit

Post by JR1966 » December 9th, 2011, 4:51 pm

I can understand you frustration and anger Chrissy but as the others have said wait for Monday.The ER on a weekend is not a place you want to be unless urgent.Take a couple of happy pills,watch the 2010 Grand Final and try to relax.

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Ozchrissy
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Re: Have thrown a hissy fit

Post by Ozchrissy » December 9th, 2011, 7:16 pm

Thanks everyone, I have calmed down. Lauren came around last night, didn't help, but again this morning and we had a good laugh about me. The scenario is that I, on my own, get in my car, in the dark, and head off to Melbourne. I make it 30klms down the road and turn around as I am not capable of long driving and also hate driving at night. whewsmile whewsmile

The other scenario is like John said, turn up to the Royal Melbourne Hospital Emergency room and freak out with all the people and throw a panic attack and end up in a Psych ward for the weekend. :duh: :duh: As for watching the 2010 Grand final you stirrer. tanty tanty Oh I suppose it would be a good way to get rid of frustration though.

Wendy I was on antibiotics for a couple of months and the thing grew. All my bloods came back negative for infection, they are checking for other sources. It could be fungal, and if so, they will just make it grow with antibiotics. So they havn't got me on anything until they find out what it is. That is why the 14 days cultures at the moment, as most of the fungal growths don't show up for at least 7-10 days. Here is hoping. I got some of the serology back, from the weird diseases, and they were all negative. :(

I know that my local cardiologist is not calling the shots anymore, so it is of no use my taking it out on him. The guys in Melbourne, the one who is to operate and the infectious diseases doc will be set in their ways, so there is no way even if I took myself down to Melbourne that I would get a different scenario.

I have warned everyone that this could happen again, that I could have a melt down again before this is finalized, and they are all prepared and will humor me. And as Lauren said, she isn't worried about me taking myself to Melbourne, she knows there is no way in hell I could get there anyway.

Thanks all for your support. And Bob maybe we can throw a hissy fit together, it does release the frustration. Also I am looking around the house for a box or something that I can destroy. Should make me feel better.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

JR1966
Posts: 1921
Joined: April 21st, 2009, 12:59 pm
Location: Melbourne, Australia

Re: Have thrown a hissy fit

Post by JR1966 » December 9th, 2011, 8:03 pm

[quote="Ozchrissy"

The other scenario is like John said, turn up to the Royal Melbourne Hospital Emergency room and freak out with all the people and throw a panic attack and end up in a Psych ward for the weekend. :duh: :duh: As for watching the 2010 Grand final you stirrer. tanty tanty Oh I suppose it would be a good way to get rid of frustration though.[/quote]



An inner city hospital ER on a Saturday night is a sight to behold,at least here in Melbourne.I can tell you Chrissy that the ER at The Dandenong Hospital can be a freak show also.

Chrissy,you won in 2010!I wouldn't lay the boots in at a time like this.I would wait till you were feeling better. Devilflame

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Ozchrissy
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Re: Have thrown a hissy fit

Post by Ozchrissy » December 9th, 2011, 9:22 pm

Oh John, I am not with it am I, fancy getting the two years confused. :mutt: Actually I should watch that game, I think I will. :xmasjump:

Also, despite the infectious disease doc being the 'guru' in the area, the Surgeon who my cardiologist has in mind is the only one who does this stuff anyway, so I am locked into THEIR criteria whatever I do. Just have to learn to be patient.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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