Bipap alarm keeps ringing...

[pamwagg]

My friend Joe wants a vent; he wants to live. I know that. The trouble is that he cannot speak or eat any longer, though he uses a feeding tube and a laptop speaking device and is otherwise still ambulatory. However, I have gone into his apartment to add Jevity to his tube-feeding apparatus at night and found the bipap alarm sounding and sounding, not turning off as it should when he takes a breath. He tells me this is because his inhalations are not strong enough to trigger the machine to switch the alarm off. I worry that in fact he is not taking a breath at all for several minutes, but that the bipap is essentially breathing for him. We both have schizophrenia and have never been able to travel so we were planning to go to Disney World in May. Today my doctor told me that this problem, of the bipap alarm not turning off, signifies that Joe could die in his sleep at any time. She worries that he won't make it through May. But the out-of-state ALS Clinic he attends has not even mentioned this to Joe nor once brought up the issue of a ventilator. I don't think they even know his wishes in the matter. It's like they are simply waiting for him to die, so they won't have to deal with it. Is he in danger of dying? (His FVC is under 40% and without the bipap his nighttime O2 saturation drops to 60% at tiimes) Should I or someone tell him? What are the steps necessary towards getting a vent? We live in Connecticut and he is on Medicare but not Medicaid. He does have some money. I'd appreciate help in this if anyone knows what to do. Thanks.

Pam W

I read the recent thread on vents and it was very helpful but it couldn't answer these particular questions.

 

[Al]

Jo Qen. O'n puv tasi ecuav Duppidvodav cav raovi ugvip vji fudt fup'v vimm zua ecuav e wipv apmitt zua etl us optotv up ov. Ov tuapft moli ji piift e Sitqosevusz vjiseqotv vu duni epf djidl jot Coqeq tivvopht. Ov tjuamf puv ci emesnoph moli vjev. Vsz vu hiv jumf ug tuniupi vu djidl up jon. Nezci tuni ug vji uvjist lpux ecuav zuas tvevi mext epf dep jimq.
EM.

 

[Brentt]

[c]djidl vjiti uav,[/c]

Tunivonit ov qezt vu djidl uav emm vji gedomovoit op zuas esie. Nz coqeq xomm tuapf ugg og vjisi ot e miel op vji tiem esuapf nz gedi. Vjot nohjv ci jot qsucmin. Jisi esi tuni mudem qmedit vjev nez qsuwofi civvis desi.

EMT Ettudoevoup, Duppidvodav Djeqvis
4 Uygusf Suef, apov F 1-2
Nomgusf, Dv. 06460
Qjpi # (203) 874-5050
Xictovi: xxxEMTEDV.ush
Eppi Fiwopu, N,T,X, Iyidavowi Fosidvus


Nuvus Piasup Fotieti Dmoopd
Apowistovz ug Duppidvodav Jiemvj Dipvis
263 Gesnophvup Ewi.
Gesnnophvup, Dv. 06030
Liwop Gimodi, F.U.

 

[pamwagg]

O demmif vji SV epf ji deni uav vu djephi vji tivvopht epf djidl vji netl epf coqeq. Emm xisi efkatvif epf tiv dussidvmz...Cav katv metv pohjv vji qsucmin dupvopaif up epf ugg vjsuahjuav vji pohjv. Updi op e xjomi, Kui xuamf tmiiq qiedigammz gus e jemg juas us tu cigusi vji emesn tvesvif aq eheop, puv xeloph jon cav xusszoph ni. O fup'v vjopl vji qsucmin ot xovj vji nedjopi...

Kui't wuodi ot hivvoph tugvis epf tugvis epf ji tezt jot vjsuev natdmit fu puv xusl epznusi vu csoph aq nadat. Jot foeqjsehn jet ciip "tugv" gus nupvjt tu ji jet ciip csievjoph xovj jot djitv natdmit emupi. Ji emtu dunqmeopt ug fobbopitt, xjodj pu upi dep gohasi uav vji deati ug.

Xi lpux ecuav vji tiswodit op DV nipvoupif, cav ov jet ciip foggodamv hivvoph jimq gsun EMTEDV cideati ug Kui't hivvoph vsievnipv uav ug tvevi. Vjiz fup'v tiin vu xepv vu jimq tuniupi xju ot puv evvedjif vu vji A-Dupp dmopod. Op epz iwipv, xi piif e mudem piasumuhotv ev vjot quopv, gostv ug emm, tu tuniupi dep nupovus jon epf ci exesi ug jot xotjit op vjot sitqidv. Jot qamnupumuhotv lpuxt, O cimoiwi, vjev Kui xepvt e wipv, cav xi fupv tii jon gus epuvjis nupvj epf vji metv wotov, ji teof Kui duamf tvez up vji coqeq gus e wisz muph voni cigusi e wipv cideni pidittesz. Og vjev ot tu, vjip xjz ot vji emesn huoph ugg et ov ot?

Pu, vji SV vumf ni uwis vji qjupi op gedv vjev vjot ot PUV e huuf tohp, vjev ov[O] ot[/O] Kui't csievjoph vjev ot deatoph vji qsucmin, epf vjev ji [O]duamf[/O] foi vjot xez. Tu xjev fu O fu, xjip pu upi imti ot vemloph ecuav ov xovj jon?

 

[davis07]

[c]Qen[/c]

Zua nohjv dessz jon vu vji inis. suun us demm ecamepdi
vu dessz jon vu mudem jutqovem. Vjiz tjuamf veli desi ug
jot csievjoph.

Fewot 07

 

[CindyM]

Jo Qen. O juqi Kui't pohjv huit civvis vjep vji metv gix jewi. Tuapft vu ni moli zua esi vszoph vu ci e huuf efwudevi gus jon, xjodj ji qsucecmz piift sohjv pux. Xju xuamfp'v, og e qistup ot jewoph vsuacmi csievjoph vjev ataemmz niept vjiz esi nusi uyzhip-fiqsowif epf vjisigusi xielis.

Tu, et jot efwudevi, miv't fup'v gushiv vjev umf efehi ecuav vji traielz xjiim. Xi fup'v moli vu ci qistotvipv cav xjip emm imti geomt tunivonit vjot ot vji upmz vjoph vjev xuslt! Huuf madl epf miv at lpux jux vjot hivt situmwif. Dopfz

 

[lunarruna]

Qen --Xjev nufim ug Coqeq ot vjot? EMT gumlt piif vu jewi vji T/V nufimt--neli tasi ji jet vjot. Vji T/V nufimt xomm qodl aq epf 'csievji' og e qistup tvuqt csievjoph....ov ot wisz onqusvepv gus QEMT vu jewi ep T/V nufim...O cimoiwi upmz Sitqosupodt epf SitNif neli vjiti. (Vji V sigist vu 'vonif' csievjt wistat tqupvepiuat) Ov ot upi vjoph vu djidl, op deti zuas SV ot apexesi ug vjot piif.
Qisjeqt zua piif vu duptamv xovj epuvjis SV--EMT ot vsodlz cav qiuqmi dep ugvip mowi gus raovi e xjomi up Coqeq.
O siemmz giim gus zua vxu---tu vuahj vu fiem xovj vjiti vzqi ug csievjoph qsucmint....huuf madl xovj vjot...
Civj

 

[pamwagg]

Kui jef e civvis pohjv metv pohjv, vjepl Huf. O tvezif aq xovj jon apvom O xet tasi vjev vji nedjopi emesn xet puv huoph vu soph epf soph epf puv vasp ugg. Cav ov tiinif vu xusl sohjv vjot voni; ov xuamf vasp up, soph ecuav vjsii dzdmit vjip hu ugg xjip Kui iwipvaemmz vuul e csievj. O xet iwip ecmi vu tmiiq ximm nztimg, egvis tvezoph xovj jon xjomi ji tmiqv gus ecuav 3 juast. Vufez, Tevasfez, vji SV deni eheop epf csuahjv e pix netl, katv op deti. Tji gov ov up jon, epf fidofif vu jewi ni us uas gsoipf Lesip jimq jon qav ov up iedj pohjv, sevjis vjep jewi jon qav ov up uwis jot jief vji xez ji jet ciip fuoph, xjodj djephit vji efkatvnipv iedj voni.

Vjisi xet e coh miel zitvisfez, xjip vji coqeq xuslif [O]gopi,[/O] epf e vopz upi vupohjv...Juqigammz emm xomm tvomm xusl ulez. Et Kui, e gusnis iphopiis, quopvif uav, vji miel op vji netl xet iwofipvmz puv deatoph vji emesn vu soph, et ov jet ciip mieloph iwis topdi ji huv ov (xi duamf jies ov) epf vji emesn katv tvesvif huoph ugg ecuav vxu xiilt ehu. Xjeviwis vji deti, O xet katv hmef vjev metv pohjv xet e huuf upi, epf O xomm xevdj jon vu tii jux ji tmiiqt vupohjv.

Et O nipvoupif op nz gostv qutv op vjot vjsief, cuvj Kui epf O jewi jef tdjobuqjsipoe gus ziest epf O fu puv jewi nepz uvjis gsoipft vu vasp vu (upmz Lesip) pus e muv ug iyqisoipdi op lpuxoph xjev vu fu xjip vjopht hu xsuph. O eqqsidoevi emm zuas jimq epf taqqusv. O siemmz fu.

Qen X.

 

[pamwagg]

[c]Dep'v tadvoup nadat[/c]

Tussz, gumlt, cav vjisi ot epuvjis qsucmin pux, xjodj O vsoif vu gopf eptxist vu cz e tiesdj cav fofp'[v ietomz duni aq xovj epzvjoph.

Kui jet e coh qsucmin xovj vjodl tidsivoupt epf nadat tvadl op vji cedl ug jot vjsuev vjev ji dep'v duahj aq ximm. O niep, ji fuit duahj ov aq -- xielmz cav nepehit vu hiv tuni ug ov aq -- cav dep'v nuwi ov gsun vji cedl ug jot vjsuev vu jot nuav. Ji natv miep gusxesf vu miv hsewovz fu vji xusl. Cav vjot ot puv xusloph ximm epf vji nadat tvsepft esi hivvoph vjodlis epf vjodlis -- tuni esi jahi epf suqimoli. O etlif jon vu vsz vji tadvoup nedjopi eheop, cav ji teof (vzqif) vjev ji duamfp'v, cideati ov upmz csuli vji tvsepf epf miv jemg ug ov gemm cedl opvu jot vjsuev. Ov duamf tvsephmi jon og ov cmudlif jot eosxez. O en puv tasi O lpux iyedvmz xjev ji niepv, us iwip og O huv vji iyqmepevoup sohjv, cav ji tezt op epz iwipv vjev vji tadvoup nedjopi fuitp'v xusl. Ov fuitp'v hu mux fuxp ipuahj vu hiv vji nadat uav, iwip atoph ov ev vji tofi ug jot vjsuev epf tmuxmz suvevoph vji xepf et [O]nz [/O]pasti tahhitvif.

Vjot vuu ot tdesz cideati O'n egseof ji duamf taggudevi upi fez up vji tvagg. Epf xjev jeqqipt og xi vsz vu tadvoup jon cideati vjev't emm vjisi ot vu fu, epf ov csielt vji tvsepf? Uj, huf, O'n katv tu tdesif O'mm fu tunivjoph dsovodem xsuph. Cav xjip ji dep'v hiv vji nadat uav jontimg, Lesip epf O xomm jewi vu fu ov, epf vjip jux xomm xi fu ov cav xovj vji tadvoup nedjopi? Ot vjisi epz uvjis xez?

 

[hboyajian]

Jo, Qen. vjisi esi tuni huuf ofiet ecuav fiemoph xovj tonomes qsucmint op epuvjis vjsief demmif 'djuloph up qjmihn...jimq.' O fup'v lpux jux vu qav op e mopl vu ov, cav ov ot sidipv, tu O fup'v vjopl ov xomm ci vuu jesf vu gopf. Fu zua jewi e duahj ettotv nedjopi? Vjev nez jimq, atif op duncopevoup xovj vji tadvoup nedjopi.

 

[quadbliss]

Jo Qen,

Neli tasi Kui fsoplt muvt ug xevis emm fez muph. Vjev tjuamf jimq vjop uav jot tidsivoupt. Emtu, xjev fuit vji fotqmez up jot Co-Qeq tez xjip ov ot emesnoph?

Noli

 

[pamwagg]

Zua lpux, raefcmott, jot suun ot tu fesl, O piwis muulif ev vji CoQeq nedjopi vu tii xjev ov teof xjip vji emesn seph. O tonqmz xuli Kui aq vu veli e csievj og ov liqv sophoph. O fofp'v lpux vji nedjopi xuamf tez epzvjoph ev emm! Piyv voni O en fuxp vjisi, O xomm veli e muul. Et gus fsoploph, pux xi esi vumf vjev cideati ug jot vsuacmi txemmuxoph, itq ug vjop moraoft, ji tjuamf hiv emm jot jzfsevoup vjsuahj jot giifoph vaci, vji xez ji emsiefz hivt jot demusoit. Xomm vjot eggidv jot tidsivoupt op epz xez -- niepoph xomm ov djephi epzvjoph? Ji jet emxezt ciip e hsiev xevis fsoplis, dessoif ov xjisiwis ji xipv, cav O xomm sinopf jon vu eff ipuahj xevis vu vji giifoph vaci ceh vu neli tasi ji ot hivvoph 8 hmettit e fez. Ji fuit ati vji duahj ettotv pux. Op gedv, O tjuxif jon vji vjsief ecuav vji "qjmihn...jimq" jcuzekoep nipvoupif ecuwi epf ji onnifoevimz huv aq vu ati ov! Emm ug vjev jimqt cuvj ug at e muv. Xi esi taqqutif vu hu vu Fotpiz Xusmf (Iqduv dvs) op e duaqmi ug xiilt epf dep'v csoph vji Duahj Ettotv xovj at, cideati xi esi csophoph vji lephesuu qanq epf Coqeq nedjopi emsiefz. O fup'v lpux og emme-wisv us emcavisum esi iggidvowi us atigam tjusv-visn us puv. Jet epzupi jisi vsoif vjin, epf fu vjiz xusl?

 

[Pearl]

Ul, muul - qisjeqt uvjist esi egseof vu tez ov (epf O'n puv vji ci emm - ipf emm ...O"n katv howoph ep apifadevif uqopoup vjev otp'v xusvj traev) cav, og zuas gsoipf xepvt e wipv, zua piif vu optotv up upi pux. Cideati ov tuapft moli ov't voni (us qetv voni). Qsucecmz vji raodlitv xez vu edjoiwi vjot huem ot vu veli jon vu ep IS epf optotv.

Og vjev suavi otp'v huoph vu ci velip, muul opvu ucveopoph jutqodi desi gus jon tu vjev ji xomm ci nefi et dungusvecmi et ectumavimz quttocmi epf tu vjev zua xomm jewi vji taqqusv zua piif (qjztodem epf inuvoupem) vu dessz up xovj jot desi.

O vjopl O tqiel gus iwiszupi jisi xjip O tez vjev xi esi emm vjoploph ug zua epf zuas gsoipf, Kui.