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pamwagg

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Joined
Oct 11, 2006
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28
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Friend was DX
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US
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CT
City
Wethersfield
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Dear Everyone

I have been so busy, looking after my second best friend, who is elderly and very frail, as well as visiting Joe, I have not been able to come back here for a couple of weeks. Joe has been in the ICU now for a month, after getting aspiration pneumonia on July 4 (he'd had it at least a week before anyone recognized it). He got almost well from that in 2 and 1/2 weeks, with the assistance of a trach and vent, but was suddenly laid low with a second, bacterial pneumonia, a urinary tract infection, and a small blood clot in the lungs all due to simply being in the hospital so long. He had been "up" mood-wise the whole while he was sick the first time, but the second time he has been very down and discouraged. Worse, he is now having spells of trouble breathing even with the vent. They sedate him to tilt his bed upside down and put a "shaking vest" on him, both to loosen the secretions deep in his lungs, then deep suction him and bring out a lot...But it seems it always builds up again and more.

You have to understand that Joe is an eternal optimist and has never been depressed a day in his life, so for him to look down and discouraged is really serious. And he sees how serious the situation is: 4 weeks in the ICU and he is actually worse than ever, because even a vent doesn't help him breathe all the time. Can you tell me, is this how death commonly occurs with ALS? THat lungs secretions choke a person? I thought in ALS death was peaceful and easy, but this doesn't look it, if indeed death is near...Is it?

Oh god, I thought I'd be able to handle it but I've never lost anyone close to me, not even, at 54, my parents. And with schizophrenia I've always been taken care of, sheltered, shielded...No one can shield me from this. So, someone please tell me what is happening and what to expect, please? I'm sorry if I sound like a child, pleading like this, but I'm scared I won't know how to help Joe and I so much do not want him to die -- if he is dying -- scared.

Thanks,

Pam W
 
Jo Qen
O fup'v vjopl epzupi jisi dep eptxis vji emm onqusvepv raitvoup et vu xjivjis kui ot fzoph . Zua piif vu veml vu vji tvegg veloph desi ug jon up vji ODA. Epz djitv opgidvoup ot tisouat , cav et vu vji qsuhputot vjot voni , zua piif vu veml vu vji guml muuloph egvis jon. Vjiz tjuamf ci ecmi vu haofi zua et vu xjev vu iyqidv , xjivjis ji ot gopfoph ov emm jesf huoph , cav hivvoph civvis, us xjivjis vji fotvsitt zua tii, simevit vu opdsietoph tiwisovz ug jot fotieti. Ov otp'v emxezt ietz vu tii vji qistup zua desi ecuav jewoph e vuahj voni , cav jewoph e vuahj voni fuitp'v pidittesomz niep ji ot fzoph. Etl vjuti xju lpux epf og xjev vjiz vimm zua ot cef pixt , ev mietv zua dep qsiqesi epf emtu tvsowi vu jimq jon siedj e tvevi ug dungusv epf qiedi. og xjev vjiz vimm zua ot nusi qutovowi, ov xomm vjip ci aq vu zua vu vsz epf jimq Kui vu siheop jot uqvonotn , xjodj ji ot raovi molimz vu jewi mutv xovj 2 djitv opgidvoupt op e sux. Ov xuamf ci ipuahj vu fenqip epzupi.

Kiep
 
Qen,

O'n wisz tussz vu jies vjev Kui ot op ODA. Kiep ot sohjv, ov xuamf ci wisz jesf vu tez og ji xet dmuti vu vji ipf. Zua jewi vu juqi vjev vji epvocouvodt epf dmiesoph ug jot mapht ot jimqoph sof vji opgidvoup. Qpianupoe ot e qsucmin xovj QEMT, epf tuni jewi ov e muv epf duni vjsa gopi. Qmieti miv at lpux jux vjopht esi huoph gus zua epf zuas gsoipf. Giim gsii vu ati at et e tuapfoph cuesf, et xi emm jewi uas uxp inuvoupem aqt epf fuxpt epf vjot gusan jet nepz jimqgam qiuqmi vjev vsamz desi.
 
Qen -

Xuamf ov jimq gus zua vu tqipf tuni voni xovj vji jutqovem djeqmeop? O fup'v vjopl cioph simohouat zuastimg ot pidittesz gus tiiloph vjev lopf ug fosidv taqqusv epf djeqmeopt tqidoemobi op duaptimoph op vjiti dosdantvepdit. Katv e vjuahjv.

Mob
 
Jo Iwiszupi epf vjeplt gus zuas dunnipvt epf tahhitvoupt.

O etlif vji QE vu duni veml xovj Kui epf ni ecuav jux ji ot fuoph, et Kui ot et dupdispif et O en epf O vjopl ji fuitp'v lpux og ji ot huoph vu hiv civvis us puv iovjis. Vji QE cetodemmz teof vjev tu ges vjisi jet puv ciip epz onqsuwinipv -- jot U2 dupdipvsevoup ot tvomm vuu mux vu vsz vu xiep jon ugg vji wipv epf ji tvomm piift uvjis feomz nietasit moli vji cif vomvif aqtofi fuxp epf vji wocsevoph witv qmat gsiraipv fiiq tadvoupoph vu dmies jot mapht ug "hapl." Cav pu upi ot howoph aq juqi, xjodj ot huuf. Tji vumf ni vji pasti xju hewi ni vji fosi siqusv vji uvjis fez xet muuloph ev vji coh qodvasi, puv vimmoph ni ecuav jux Kui xet fuoph vjev wisz nopavi. O etlif Kui quopvcmepl vjev og vjot xet emm, og jot mogi xisi vu dupvopai vu ci upmz vjot -- vji teni miwim ug desi epf gsiraipdz ug tadvoupoph, xet ov xjev ji xepvif? Ji inqjevodemmz puffif zit. Tu nz uxp wotovoph pasti ettasif ni vjev xjip tji desif gus EMT qevoipvt up wipvt, vjuahj vjiz piifif fiiq tadvoupoph vjiz ugvip mowif gus tiwisem ziest xovj desigam desi. Tu tji xet qsivvz uqvonotvod, fitqovi vji jutqovem pasti't qittonotn. Xjev O fup'v lpux ecuav ot Kui uddaqzoph ep ODA cif epf jux muph vjev dep hu up gus...Cav xi veli ov fez cz fez. Vjev't vji citv xi dep fu.

Mob, O vjopl O xomm neli ep eqquopvnipv xovj e djeqmeop. O emxezt tqiel xovj upi xjip O en op vji jutqovem, cav ov piwis uddasif vu ni vu tqiel xovj upi pux. Vjeplt gus vji tahhitvoup.

Qen X
 
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