Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Allsion I will keep you in my thoughts and prayers. laurie > From: LILQT4U1984@... > Reply-To: > Date: Thu, 6 Jan 2005 15:37:09 EST > To: tpnsupport , mito , > , Moonchild62579@..., > rodrigo.aguilar@..., allyson.l.sisler@..., Utbrn@..., > PaddockSwim9098@..., @..., go.shirl@..., > Catbecca83@..., scosby@..., Cme4christ@..., > Adia003509@..., Traci1175@..., heatheres@..., > KHeep2003@..., CLHyland@..., IMJANER2@..., > jhoward4@..., Utahjo2@..., KateElle@..., kckoch76@..., > Malnic2185@..., Lillian@..., rosefarm@..., > Malilibear@..., davidm0508@..., Marta608@..., peetie@..., > LCA786@..., psmiller@..., thefourofus03@..., > nikkinetgirl@..., bethb48@..., kodonnell2@..., > digby@..., sweetnana1@..., > daniellecoccinelle@..., roseschussler@..., aaschwenk@..., > SFlynn7778@..., Staceyje@..., PJS3067198@..., > laurice_stevens@..., HiyaChica@..., LEMT13@..., > JenRWaterman85@... > Subject: Surgery Date > > We just got the call this afternoon that my partial colectomy will be on > Friday Jan. 14th. That is a week from tom. I was really thinking it was going > to > be sooner. My mitochondrial doc. is leaving on the 13th and he is the one who > was wanting this done asap and is so very concerned. We have left a message > for him to see if he will be available via pager while he is away. I spoke > with my surgeon this morning and he was ever so nice. He had spoken with my > GI > and gotten the colonic manometry reports. It shows that the left side of my > colon is non functioning. He said that he can't say it will be 100% > successful > because my pseudo onbstruction is caused by the mito and that is very > unusual. He feels confident that I will have at least 80% success or better. > If I'm > not satisfied or this surgery isn't affective then I can always have the > appendacostomy done later. He said that if I was his daugher he would do the > partial colectomy first as it could be a cure for the CIP. That was my > answer. > I've been praying so much about this and have complete confidence in my > surgeon. I also was able to get the anesthesiologist who I've used in the > past and > really knows me well. We are working on airline arrangements now for next > Thurs. Thanks for your prayers. > > I will be at Cleveland Clinic Foundation > 9500 Euclid Avenue > Cleveland, OH > 44195 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 , I am thrilled to hear that you have your answer on which route to take and that talking with the surgeon was reassuring. I will especially be thinking of you on the 14th. These next two weeks are big ones for me too. I have the consult with the neurosurgeon and radiation oncologist on Jan 12 and the Gamma Knife Jan 20. I will be very glad when it is February and I bet you will be too! Hugs and prayers, Barbara _____ From: LILQT4U1984@... Sent: Thursday, January 06, 2005 2:37 PM To: tpnsupport ; mito ; ; Moonchild62579@...; rodrigo.aguilar@...; allyson.l.sisler@...; Utbrn@...; PaddockSwim9098@...; @...; go.shirl@...; Catbecca83@...; scosby@...; Cme4christ@...; Adia003509@...; Traci1175@...; heatheres@...; KHeep2003@...; CLHyland@...; IMJANER2@...; jhoward4@...; Utahjo2@...; KateElle@...; kckoch76@...; Malnic2185@...; Lillian@...; rosefarm@...; Malilibear@...; davidm0508@...; Marta608@...; peetie@...; LCA786@...; psmiller@...; thefourofus03@...; nikkinetgirl@...; bethb48@...; kodonnell2@...; digby@...; sweetnana1@...; daniellecoccinelle@...; roseschussler@...; aaschwenk@...; SFlynn7778@...; Staceyje@...; PJS3067198@...; laurice_stevens@...; HiyaChica@...; LEMT13@...; JenRWaterman85@... Subject: Surgery Date We just got the call this afternoon that my partial colectomy will be on Friday Jan. 14th. That is a week from tom. I was really thinking it was going to be sooner. My mitochondrial doc. is leaving on the 13th and he is the one who was wanting this done asap and is so very concerned. We have left a message for him to see if he will be available via pager while he is away. I spoke with my surgeon this morning and he was ever so nice. He had spoken with my GI and gotten the colonic manometry reports. It shows that the left side of my colon is non functioning. He said that he can't say it will be 100% successful because my pseudo onbstruction is caused by the mito and that is very unusual. He feels confident that I will have at least 80% success or better. If I'm not satisfied or this surgery isn't affective then I can always have the appendacostomy done later. He said that if I was his daugher he would do the partial colectomy first as it could be a cure for the CIP. That was my answer. I've been praying so much about this and have complete confidence in my surgeon. I also was able to get the anesthesiologist who I've used in the past and really knows me well. We are working on airline arrangements now for next Thurs. Thanks for your prayers. I will be at Cleveland Clinic Foundation 9500 Euclid Avenue Cleveland, OH 44195 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 , I am thrilled to hear that you have your answer on which route to take and that talking with the surgeon was reassuring. I will especially be thinking of you on the 14th. These next two weeks are big ones for me too. I have the consult with the neurosurgeon and radiation oncologist on Jan 12 and the Gamma Knife Jan 20. I will be very glad when it is February and I bet you will be too! Hugs and prayers, Barbara _____ From: LILQT4U1984@... Sent: Thursday, January 06, 2005 2:37 PM To: tpnsupport ; mito ; ; Moonchild62579@...; rodrigo.aguilar@...; allyson.l.sisler@...; Utbrn@...; PaddockSwim9098@...; @...; go.shirl@...; Catbecca83@...; scosby@...; Cme4christ@...; Adia003509@...; Traci1175@...; heatheres@...; KHeep2003@...; CLHyland@...; IMJANER2@...; jhoward4@...; Utahjo2@...; KateElle@...; kckoch76@...; Malnic2185@...; Lillian@...; rosefarm@...; Malilibear@...; davidm0508@...; Marta608@...; peetie@...; LCA786@...; psmiller@...; thefourofus03@...; nikkinetgirl@...; bethb48@...; kodonnell2@...; digby@...; sweetnana1@...; daniellecoccinelle@...; roseschussler@...; aaschwenk@...; SFlynn7778@...; Staceyje@...; PJS3067198@...; laurice_stevens@...; HiyaChica@...; LEMT13@...; JenRWaterman85@... Subject: Surgery Date We just got the call this afternoon that my partial colectomy will be on Friday Jan. 14th. That is a week from tom. I was really thinking it was going to be sooner. My mitochondrial doc. is leaving on the 13th and he is the one who was wanting this done asap and is so very concerned. We have left a message for him to see if he will be available via pager while he is away. I spoke with my surgeon this morning and he was ever so nice. He had spoken with my GI and gotten the colonic manometry reports. It shows that the left side of my colon is non functioning. He said that he can't say it will be 100% successful because my pseudo onbstruction is caused by the mito and that is very unusual. He feels confident that I will have at least 80% success or better. If I'm not satisfied or this surgery isn't affective then I can always have the appendacostomy done later. He said that if I was his daugher he would do the partial colectomy first as it could be a cure for the CIP. That was my answer. I've been praying so much about this and have complete confidence in my surgeon. I also was able to get the anesthesiologist who I've used in the past and really knows me well. We are working on airline arrangements now for next Thurs. Thanks for your prayers. I will be at Cleveland Clinic Foundation 9500 Euclid Avenue Cleveland, OH 44195 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 , I am glad you have the decision on which surgery behind you and the surgery itself scheduled. I know that must have been very very hard to decide and then wait for a date. Does the surgeon know about the urgency? I only ask, because if he doesn't know, you might want to let him know that if a cancellation opens up before then and the anesthesiologist is available, then Dr. C would still be on hand. It would be worth checking out if you haven't already. They do plan to keep you for a couple of days after don't they? I sure hope so. If you have the Q-Gel and can up the dosage between now and the surgery, it may help your recovery. I'm sure you could find out via phone under the circumstances from Dr. C. I can't imagine why he would say no, but keep in mind that the additional Q-Gel would also give you more Vit E and up your bleeding chances unless you are taking the chewable that doesn't have the Vit E. Hugs, LILQT4U1984@... wrote: >We just got the call this afternoon that my partial colectomy will be on >Friday Jan. 14th. That is a week from tom. I was really thinking it was going to >be sooner. My mitochondrial doc. is leaving on the 13th and he is the one who > was wanting this done asap and is so very concerned. We have left a message >for him to see if he will be available via pager while he is away. I spoke >with my surgeon this morning and he was ever so nice. He had spoken with my GI >and gotten the colonic manometry reports. It shows that the left side of my >colon is non functioning. He said that he can't say it will be 100% successful >because my pseudo onbstruction is caused by the mito and that is very >unusual. He feels confident that I will have at least 80% success or better. If I'm >not satisfied or this surgery isn't affective then I can always have the >appendacostomy done later. He said that if I was his daugher he would do the >partial colectomy first as it could be a cure for the CIP. That was my answer. >I've been praying so much about this and have complete confidence in my >surgeon. I also was able to get the anesthesiologist who I've used in the past and >really knows me well. We are working on airline arrangements now for next >Thurs. Thanks for your prayers. > >I will be at Cleveland Clinic Foundation > 9500 Euclid Avenue > Cleveland, OH > 44195 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 , I am glad you have the decision on which surgery behind you and the surgery itself scheduled. I know that must have been very very hard to decide and then wait for a date. Does the surgeon know about the urgency? I only ask, because if he doesn't know, you might want to let him know that if a cancellation opens up before then and the anesthesiologist is available, then Dr. C would still be on hand. It would be worth checking out if you haven't already. They do plan to keep you for a couple of days after don't they? I sure hope so. If you have the Q-Gel and can up the dosage between now and the surgery, it may help your recovery. I'm sure you could find out via phone under the circumstances from Dr. C. I can't imagine why he would say no, but keep in mind that the additional Q-Gel would also give you more Vit E and up your bleeding chances unless you are taking the chewable that doesn't have the Vit E. Hugs, LILQT4U1984@... wrote: >We just got the call this afternoon that my partial colectomy will be on >Friday Jan. 14th. That is a week from tom. I was really thinking it was going to >be sooner. My mitochondrial doc. is leaving on the 13th and he is the one who > was wanting this done asap and is so very concerned. We have left a message >for him to see if he will be available via pager while he is away. I spoke >with my surgeon this morning and he was ever so nice. He had spoken with my GI >and gotten the colonic manometry reports. It shows that the left side of my >colon is non functioning. He said that he can't say it will be 100% successful >because my pseudo onbstruction is caused by the mito and that is very >unusual. He feels confident that I will have at least 80% success or better. If I'm >not satisfied or this surgery isn't affective then I can always have the >appendacostomy done later. He said that if I was his daugher he would do the >partial colectomy first as it could be a cure for the CIP. That was my answer. >I've been praying so much about this and have complete confidence in my >surgeon. I also was able to get the anesthesiologist who I've used in the past and >really knows me well. We are working on airline arrangements now for next >Thurs. Thanks for your prayers. > >I will be at Cleveland Clinic Foundation > 9500 Euclid Avenue > Cleveland, OH > 44195 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Barbara I will also have you in my thoughts and prayers. For me the waiting is harder than the appointments themselves. laurie > > Reply-To: > Date: Thu, 6 Jan 2005 15:07:44 -0600 > To: > > Subject: RE: Surgery Date > > , I am thrilled to hear that you have your answer on which route to > take and that talking with the surgeon was reassuring. I will especially be > thinking of you on the 14th. These next two weeks are big ones for me too. I > have the consult with the neurosurgeon and radiation oncologist on Jan 12 > and the Gamma Knife Jan 20. I will be very glad when it is February and I > bet you will be too! > > > > Hugs and prayers, > > Barbara > > > > _____ > > From: LILQT4U1984@... > Sent: Thursday, January 06, 2005 2:37 PM > To: tpnsupport ; mito ; > ; Moonchild62579@...; > rodrigo.aguilar@...; allyson.l.sisler@...; Utbrn@...; > PaddockSwim9098@...; @...; go.shirl@...; > Catbecca83@...; scosby@...; Cme4christ@...; > Adia003509@...; Traci1175@...; heatheres@...; > KHeep2003@...; CLHyland@...; IMJANER2@...; > jhoward4@...; Utahjo2@...; KateElle@...; kckoch76@...; > Malnic2185@...; Lillian@...; rosefarm@...; > Malilibear@...; davidm0508@...; Marta608@...; peetie@...; > LCA786@...; psmiller@...; thefourofus03@...; > nikkinetgirl@...; bethb48@...; kodonnell2@...; > digby@...; sweetnana1@...; > daniellecoccinelle@...; roseschussler@...; aaschwenk@...; > SFlynn7778@...; Staceyje@...; PJS3067198@...; > laurice_stevens@...; HiyaChica@...; LEMT13@...; > JenRWaterman85@... > Subject: Surgery Date > > > > We just got the call this afternoon that my partial colectomy will be on > Friday Jan. 14th. That is a week from tom. I was really thinking it was > going to > be sooner. My mitochondrial doc. is leaving on the 13th and he is the one > who > was wanting this done asap and is so very concerned. We have left a message > for him to see if he will be available via pager while he is away. I spoke > with my surgeon this morning and he was ever so nice. He had spoken with my > GI > and gotten the colonic manometry reports. It shows that the left side of my > > colon is non functioning. He said that he can't say it will be 100% > successful > because my pseudo onbstruction is caused by the mito and that is very > unusual. He feels confident that I will have at least 80% success or > better. If I'm > not satisfied or this surgery isn't affective then I can always have the > appendacostomy done later. He said that if I was his daugher he would do > the > partial colectomy first as it could be a cure for the CIP. That was my > answer. > I've been praying so much about this and have complete confidence in my > surgeon. I also was able to get the anesthesiologist who I've used in the > past and > really knows me well. We are working on airline arrangements now for next > Thurs. Thanks for your prayers. > > I will be at Cleveland Clinic Foundation > 9500 Euclid Avenue > Cleveland, OH > 44195 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 and Barbara, I will be keeping you both in my thoughts and prayers as you both go through these surgeries. Please know that the family will be here to support you as much as we can. I am sending hugs through cyber space to you both. Hugs, a On Thu, 6 Jan 2005 15:07:44 -0600 " Barbara Seaman " wheatchild@...> writes: , I am thrilled to hear that you have your answer on which route to take and that talking with the surgeon was reassuring. I will especially be thinking of you on the 14th. These next two weeks are big ones for me too. I have the consult with the neurosurgeon and radiation oncologist on Jan 12 and the Gamma Knife Jan 20. I will be very glad when it is February and I bet you will be too! Hugs and prayers, Barbara _____ From: LILQT4U1984@... Sent: Thursday, January 06, 2005 2:37 PM To: tpnsupport ; mito ; ; Moonchild62579@...; rodrigo.aguilar@...; allyson.l.sisler@...; Utbrn@...; PaddockSwim9098@...; @...; go.shirl@...; Catbecca83@...; scosby@...; Cme4christ@...; Adia003509@...; Traci1175@...; heatheres@...; KHeep2003@...; CLHyland@...; IMJANER2@...; jhoward4@...; Utahjo2@...; KateElle@...; kckoch76@...; Malnic2185@...; Lillian@...; rosefarm@...; Malilibear@...; davidm0508@...; Marta608@...; peetie@...; LCA786@...; psmiller@...; thefourofus03@...; nikkinetgirl@...; bethb48@...; kodonnell2@...; digby@...; sweetnana1@...; daniellecoccinelle@...; roseschussler@...; aaschwenk@...; SFlynn7778@...; Staceyje@...; PJS3067198@...; laurice_stevens@...; HiyaChica@...; LEMT13@...; JenRWaterman85@... Subject: Surgery Date We just got the call this afternoon that my partial colectomy will be on Friday Jan. 14th. That is a week from tom. I was really thinking it was going to be sooner. My mitochondrial doc. is leaving on the 13th and he is the one who was wanting this done asap and is so very concerned. We have left a message for him to see if he will be available via pager while he is away. I spoke with my surgeon this morning and he was ever so nice. He had spoken with my GI and gotten the colonic manometry reports. It shows that the left side of my colon is non functioning. He said that he can't say it will be 100% successful because my pseudo onbstruction is caused by the mito and that is very unusual. He feels confident that I will have at least 80% success or better. If I'm not satisfied or this surgery isn't affective then I can always have the appendacostomy done later. He said that if I was his daugher he would do the partial colectomy first as it could be a cure for the CIP. That was my answer. I've been praying so much about this and have complete confidence in my surgeon. I also was able to get the anesthesiologist who I've used in the past and really knows me well. We are working on airline arrangements now for next Thurs. Thanks for your prayers. I will be at Cleveland Clinic Foundation 9500 Euclid Avenue Cleveland, OH 44195 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 , Yes, Dr. C called the surgeon while I was in his office and told him of the urgency of the surgery. It's just that the surgeon has office consults on Mondays and Tuesday was booked. Wed and Thurs he does surgery at another hospital. That just left Friday. We have left another message for Cohen. I will be in the hospital for about a week afterwards and then most likely stay at RMH for a couple days before flying home. It will just depend on how I'm feeling. Thanks for the suggestion about the Q-gel. I will ask. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Thanks, Laurie. For some strange reason, I have been very much at peace waiting this time, maybe because it has been a relief to finally have a definite decision and a date. Mostly I am dreading the killer schedule for both days. Normally they do these two days back to back, but that is not possible for me so they agreed to space them out a week. There will also be major problems working out the tubefeeding on the day of the gamma knife. Usually they want everyone NPO from midnight on through the whole day until 5 pm. That in itself would kill me!! Well, we will work out something. Barbara _____ From: Laureta Fitzgerald Sent: Thursday, January 06, 2005 6:22 PM To: Subject: Re: Surgery Date Barbara I will also have you in my thoughts and prayers. For me the waiting is harder than the appointments themselves. laurie > > Reply-To: > Date: Thu, 6 Jan 2005 15:07:44 -0600 > To: > > Subject: RE: Surgery Date > > , I am thrilled to hear that you have your answer on which route to > take and that talking with the surgeon was reassuring. I will especially be > thinking of you on the 14th. These next two weeks are big ones for me too. I > have the consult with the neurosurgeon and radiation oncologist on Jan 12 > and the Gamma Knife Jan 20. I will be very glad when it is February and I > bet you will be too! > > > > Hugs and prayers, > > Barbara > > > > _____ > > From: LILQT4U1984@... > Sent: Thursday, January 06, 2005 2:37 PM > To: tpnsupport ; mito ; > ; Moonchild62579@...; > rodrigo.aguilar@...; allyson.l.sisler@...; Utbrn@...; > PaddockSwim9098@...; @...; go.shirl@...; > Catbecca83@...; scosby@...; Cme4christ@...; > Adia003509@...; Traci1175@...; heatheres@...; > KHeep2003@...; CLHyland@...; IMJANER2@...; > jhoward4@...; Utahjo2@...; KateElle@...; kckoch76@...; > Malnic2185@...; Lillian@...; rosefarm@...; > Malilibear@...; davidm0508@...; Marta608@...; peetie@...; > LCA786@...; psmiller@...; thefourofus03@...; > nikkinetgirl@...; bethb48@...; kodonnell2@...; > digby@...; sweetnana1@...; > daniellecoccinelle@...; roseschussler@...; aaschwenk@...; > SFlynn7778@...; Staceyje@...; PJS3067198@...; > laurice_stevens@...; HiyaChica@...; LEMT13@...; > JenRWaterman85@... > Subject: Surgery Date > > > > We just got the call this afternoon that my partial colectomy will be on > Friday Jan. 14th. That is a week from tom. I was really thinking it was > going to > be sooner. My mitochondrial doc. is leaving on the 13th and he is the one > who > was wanting this done asap and is so very concerned. We have left a message > for him to see if he will be available via pager while he is away. I spoke > with my surgeon this morning and he was ever so nice. He had spoken with my > GI > and gotten the colonic manometry reports. It shows that the left side of my > > colon is non functioning. He said that he can't say it will be 100% > successful > because my pseudo onbstruction is caused by the mito and that is very > unusual. He feels confident that I will have at least 80% success or > better. If I'm > not satisfied or this surgery isn't affective then I can always have the > appendacostomy done later. He said that if I was his daugher he would do > the > partial colectomy first as it could be a cure for the CIP. That was my > answer. > I've been praying so much about this and have complete confidence in my > surgeon. I also was able to get the anesthesiologist who I've used in the > past and > really knows me well. We are working on airline arrangements now for next > Thurs. Thanks for your prayers. > > I will be at Cleveland Clinic Foundation > 9500 Euclid Avenue > Cleveland, OH > 44195 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Barbara I'm glad you are at peace with the surgery. I know how much it helps to be ready. I wouldn't think the tube feedings would be that much of a problem unless the food goes into your stomach, rather than intestines. The NPO is usually so you don't aspirate. I am having a high resolution pulmonary MRI next week and they have decided that I can have clear liquids instead of being totally NPO. laurie > > Reply-To: > Date: Fri, 7 Jan 2005 08:38:29 -0600 > To: > > Subject: RE: Surgery Date > > Thanks, Laurie. For some strange reason, I have been very much at peace > waiting this time, maybe because it has been a relief to finally have a > definite decision and a date. Mostly I am dreading the killer schedule for > both days. Normally they do these two days back to back, but that is not > possible for me so they agreed to space them out a week. There will also be > major problems working out the tubefeeding on the day of the gamma knife. > Usually they want everyone NPO from midnight on through the whole day until > 5 pm. That in itself would kill me!! Well, we will work out something. > > > > Barbara > > > > _____ > > From: Laureta Fitzgerald > Sent: Thursday, January 06, 2005 6:22 PM > To: > Subject: Re: Surgery Date > > > > Barbara > > I will also have you in my thoughts and prayers. For me the waiting is > harder than the appointments themselves. > > laurie > >> >> Reply-To: >> Date: Thu, 6 Jan 2005 15:07:44 -0600 >> To: > >> Subject: RE: Surgery Date >> >> , I am thrilled to hear that you have your answer on which route to >> take and that talking with the surgeon was reassuring. I will especially > be >> thinking of you on the 14th. These next two weeks are big ones for me too. > I >> have the consult with the neurosurgeon and radiation oncologist on Jan 12 >> and the Gamma Knife Jan 20. I will be very glad when it is February and I >> bet you will be too! >> >> >> >> Hugs and prayers, >> >> Barbara >> >> >> >> _____ >> >> From: LILQT4U1984@... >> Sent: Thursday, January 06, 2005 2:37 PM >> To: tpnsupport ; mito ; >> ; Moonchild62579@...; >> rodrigo.aguilar@...; allyson.l.sisler@...; > Utbrn@...; >> PaddockSwim9098@...; @...; go.shirl@...; >> Catbecca83@...; scosby@...; Cme4christ@...; >> Adia003509@...; Traci1175@...; heatheres@...; >> KHeep2003@...; CLHyland@...; IMJANER2@...; >> jhoward4@...; Utahjo2@...; KateElle@...; > kckoch76@...; >> Malnic2185@...; Lillian@...; rosefarm@...; >> Malilibear@...; davidm0508@...; Marta608@...; peetie@...; >> LCA786@...; psmiller@...; thefourofus03@...; >> nikkinetgirl@...; bethb48@...; kodonnell2@...; >> digby@...; sweetnana1@...; >> daniellecoccinelle@...; roseschussler@...; aaschwenk@...; >> SFlynn7778@...; Staceyje@...; PJS3067198@...; >> laurice_stevens@...; HiyaChica@...; LEMT13@...; >> JenRWaterman85@... >> Subject: Surgery Date >> >> >> >> We just got the call this afternoon that my partial colectomy will be on >> Friday Jan. 14th. That is a week from tom. I was really thinking it was >> going to >> be sooner. My mitochondrial doc. is leaving on the 13th and he is the one >> who >> was wanting this done asap and is so very concerned. We have left a > message >> for him to see if he will be available via pager while he is away. I > spoke >> with my surgeon this morning and he was ever so nice. He had spoken with > my >> GI >> and gotten the colonic manometry reports. It shows that the left side of > my >> >> colon is non functioning. He said that he can't say it will be 100% >> successful >> because my pseudo onbstruction is caused by the mito and that is very >> unusual. He feels confident that I will have at least 80% success or >> better. If I'm >> not satisfied or this surgery isn't affective then I can always have the >> appendacostomy done later. He said that if I was his daugher he would do >> the >> partial colectomy first as it could be a cure for the CIP. That was my >> answer. >> I've been praying so much about this and have complete confidence in my >> surgeon. I also was able to get the anesthesiologist who I've used in the >> past and >> really knows me well. We are working on airline arrangements now for next >> Thurs. Thanks for your prayers. >> >> I will be at Cleveland Clinic Foundation >> 9500 Euclid Avenue >> Cleveland, OH >> 44195 >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Yes, the concern is aspiration or vomiting during the radiation, as it can cause nausea. Enteral feeding formula through a J-tube can back up into the stomach and be aspirated, but it is not common and the risk is lower than with G-tube. Assuming they let me do my regular nighttime feeding prior to the procedure, the biggest problem will be trying to get enough calories throughout the day to mimic my regular eating schedule. Our nighttime pump rate is 54 cc right now and will not deliver nearly enough calories for daytime if I can't eat anything. The jejunum, unlike the stomach, cannot tolerate sudden increases in feeding rate without becoming very unhappy. Increases have to be made gradually over a period of weeks and my gut seems more sensitive to changes than many. On the other hand, inadequate calories trigger seizures and stroke-like episodes for me. Hopefully the staff will be flexible on their end, and I will try to be as flexible as I can. One of my standard lines for various situations is, " I'm flexible but my body isn't. " It's always interesting trying to make sure my physical needs are understood without coming across as a demanding patient. Fine line. But the people at the Gamma Knife Center have been great so far, so I am hopeful. B _____ From: Laureta Fitzgerald Sent: Friday, January 07, 2005 3:35 PM To: Subject: Re: Surgery Date Barbara I'm glad you are at peace with the surgery. I know how much it helps to be ready. I wouldn't think the tube feedings would be that much of a problem unless the food goes into your stomach, rather than intestines. The NPO is usually so you don't aspirate. I am having a high resolution pulmonary MRI next week and they have decided that I can have clear liquids instead of being totally NPO. laurie > > Reply-To: > Date: Fri, 7 Jan 2005 08:38:29 -0600 > To: > > Subject: RE: Surgery Date > > Thanks, Laurie. For some strange reason, I have been very much at peace > waiting this time, maybe because it has been a relief to finally have a > definite decision and a date. Mostly I am dreading the killer schedule for > both days. Normally they do these two days back to back, but that is not > possible for me so they agreed to space them out a week. There will also be > major problems working out the tubefeeding on the day of the gamma knife. > Usually they want everyone NPO from midnight on through the whole day until > 5 pm. That in itself would kill me!! Well, we will work out something. > > > > Barbara > > > > _____ > > From: Laureta Fitzgerald > Sent: Thursday, January 06, 2005 6:22 PM > To: > Subject: Re: Surgery Date > > > > Barbara > > I will also have you in my thoughts and prayers. For me the waiting is > harder than the appointments themselves. > > laurie > >> >> Reply-To: >> Date: Thu, 6 Jan 2005 15:07:44 -0600 >> To: > >> Subject: RE: Surgery Date >> >> , I am thrilled to hear that you have your answer on which route to >> take and that talking with the surgeon was reassuring. I will especially > be >> thinking of you on the 14th. These next two weeks are big ones for me too. > I >> have the consult with the neurosurgeon and radiation oncologist on Jan 12 >> and the Gamma Knife Jan 20. I will be very glad when it is February and I >> bet you will be too! >> >> >> >> Hugs and prayers, >> >> Barbara >> >> >> >> _____ >> >> From: LILQT4U1984@... >> Sent: Thursday, January 06, 2005 2:37 PM >> To: tpnsupport ; mito ; >> ; Moonchild62579@...; >> rodrigo.aguilar@...; allyson.l.sisler@...; > Utbrn@...; >> PaddockSwim9098@...; @...; go.shirl@...; >> Catbecca83@...; scosby@...; Cme4christ@...; >> Adia003509@...; Traci1175@...; heatheres@...; >> KHeep2003@...; CLHyland@...; IMJANER2@...; >> jhoward4@...; Utahjo2@...; KateElle@...; > kckoch76@...; >> Malnic2185@...; Lillian@...; rosefarm@...; >> Malilibear@...; davidm0508@...; Marta608@...; peetie@...; >> LCA786@...; psmiller@...; thefourofus03@...; >> nikkinetgirl@...; bethb48@...; kodonnell2@...; >> digby@...; sweetnana1@...; >> daniellecoccinelle@...; roseschussler@...; aaschwenk@...; >> SFlynn7778@...; Staceyje@...; PJS3067198@...; >> laurice_stevens@...; HiyaChica@...; LEMT13@...; >> JenRWaterman85@... >> Subject: Surgery Date >> >> >> >> We just got the call this afternoon that my partial colectomy will be on >> Friday Jan. 14th. That is a week from tom. I was really thinking it was >> going to >> be sooner. My mitochondrial doc. is leaving on the 13th and he is the one >> who >> was wanting this done asap and is so very concerned. We have left a > message >> for him to see if he will be available via pager while he is away. I > spoke >> with my surgeon this morning and he was ever so nice. He had spoken with > my >> GI >> and gotten the colonic manometry reports. It shows that the left side of > my >> >> colon is non functioning. He said that he can't say it will be 100% >> successful >> because my pseudo onbstruction is caused by the mito and that is very >> unusual. He feels confident that I will have at least 80% success or >> better. If I'm >> not satisfied or this surgery isn't affective then I can always have the >> appendacostomy done later. He said that if I was his daugher he would do >> the >> partial colectomy first as it could be a cure for the CIP. That was my >> answer. >> I've been praying so much about this and have complete confidence in my >> surgeon. I also was able to get the anesthesiologist who I've used in the >> past and >> really knows me well. We are working on airline arrangements now for next >> Thurs. Thanks for your prayers. >> >> I will be at Cleveland Clinic Foundation >> 9500 Euclid Avenue >> Cleveland, OH >> 44195 >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2005 Report Share Posted January 7, 2005 Both you guys are in my thoughts. I'm wishing you the best nurses in the world! I do agree that waiting gets difficult, almost moreso than the actual events, so keep busy thinking of other things. I'm just waiting for a MDA visit for my 4-year-old and me, but I have so much to ask the doctor that I'm very anxious, more than usual because they are screening my son for mito and haven't figured out if he has a mito disorder or not. Take care, RH > Oh Barbara- > > Thank you so much for reminding me about your upcoming medical tests and > procedures. I will certainly be remembering you in my prayers. I'm looking so > forward to Feb! > > Thinking of you, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2005 Report Share Posted January 8, 2005 RH Waiting to have your son seen at the MDA clinic has got to be scary. I will keep both of you in my thoughts. Hugs, laurie > > Reply-To: > Date: Sat, 08 Jan 2005 06:27:02 -0000 > To: > Subject: Re: Surgery Date > > > Both you guys are in my thoughts. I'm wishing you the best nurses in > the world! > I do agree that waiting gets difficult, almost moreso than the actual > events, so keep busy thinking of other things. I'm just waiting for > a MDA visit for my 4-year-old and me, but I have so much to ask the > doctor that I'm very anxious, more than usual because they are > screening my son for mito and haven't figured out if he has a mito > disorder or not. > > Take care, > RH > > > > >> Oh Barbara- >> >> Thank you so much for reminding me about your upcoming medical > tests and >> procedures. I will certainly be remembering you in my prayers. I'm > looking so >> forward to Feb! >> >> Thinking of you, >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
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