Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 Thanks denise ! I am sooooo ready...... Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2004 Report Share Posted March 12, 2004 It is going to be ssoooo awesome when they do come out. My twins were the best thing that ever happened to me. A MIRACLE too God Bless, Robin, NorthEastern, NY EDD- July 27th, 2004 IT'S A BOY!!!!!! Mommy to: & (twin boys 7 1/2), Madison, daughter, 5 years and Wife to Pup 15 years (October 31, 1988) Gastric Bypass Surgery- October 18th 2002 Start-378, current- 246(pregnant) goal 170 after baby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 I am excited and ready for them..... I didnt think I'd make it to my 35th week with them..... How far did u carry your boys? And what was their birth weight? My doc says he wants them to get alittle fluffier! LOL I thought 5 lbs was good for twins. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Angie, I'm a twin and when my Mom was pregnant with us it was back when they didn't have ultrasounds, they x-rayed when you were in labor. All through her pregnancy they kept telling her she wasn't having twins and had her on very restrictive diets because they thought she was gaining way too much weight (60lbs total). Well, I came out 6lbs 4oz and my sis was 4lbs 14ozs. From pictures and what my Mom told me they were totally happy with my size, but my sis, ugh! She looked all skin and bones and to make it worse she was totally bald whereas I had hair. Point is you need to realize that their estimates for weight may be off by as much as a pound so your little guys could be as small as 4 and as large as 6 and those couple of lbs can make all the difference. Axelrod Re: Update I am excited and ready for them..... I didnt think I'd make it to my 35th week with them..... How far did u carry your boys? And what was their birth weight? My doc says he wants them to get alittle fluffier! LOL I thought 5 lbs was good for twins. Angie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Laurie, This sounds promising except I wish you didn't have to deal with it at all. I guess you'll know more after the CT scan. I wouldn't be looking forward to the treadmill testing. That's not one I could do. I guess you probably feel a little better after this appointment, don't you? Alice I saw the pulmonologist that my neuro wanted me to see. In looking at my CT films, he feels the scaring in my lungs was minor and probably due to the mito. He ordered a lung specific CT that will be done both on my back and on my stomach. I also will have a pre and post 6 min. treadmill pulmonary function test and then see him. It probably won't be for a couple of months. laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 ---Good news and bad news at the same time! I am glad to hear the fibrosis is minor! Best WIshes, Dawn In , Laureta Fitzgerald wrote: > Hi > > I saw the pulmonologist that my neuro wanted me to see. In looking at my CT > films, he feels the scaring in my lungs was minor and probably due to the > mito. He ordered a lung specific CT that will be done both on my back and on > my stomach. I also will have a pre and post 6 min. treadmill pulmonary > function test and then see him. It probably won't be for a couple of months. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Thanks Dawn! > > Reply-To: > Date: Wed, 10 Nov 2004 04:37:48 -0000 > To: > Subject: Re: update > > > ---Good news and bad news at the same time! I am glad to hear the > fibrosis is minor! > > Best WIshes, > > Dawn > > > > In , Laureta Fitzgerald > wrote: >> Hi >> >> I saw the pulmonologist that my neuro wanted me to see. In looking > at my CT >> films, he feels the scaring in my lungs was minor and probably due > to the >> mito. He ordered a lung specific CT that will be done both on my > back and on >> my stomach. I also will have a pre and post 6 min. treadmill > pulmonary >> function test and then see him. It probably won't be for a couple > of months. >> >> laurie > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Alice I feel better that it is minor, but was hoping to know more after the appointment. I am not looking forward to the treadmill. My guess is that I will make it about 2 minutes and have to stop, but it might be one of my better days - who knows. laurie > > Reply-To: > Date: Tue, 9 Nov 2004 20:39:04 -0700 > To: > > Subject: Re: update > > Laurie, > > This sounds promising except I wish you didn't have to deal with it at all. I > guess you'll know more after the CT scan. I wouldn't be looking forward to > the treadmill testing. That's not one I could do. I guess you probably feel a > little better after this appointment, don't you? > > Alice > > I saw the pulmonologist that my neuro wanted me to see. In looking at my CT > films, he feels the scaring in my lungs was minor and probably due to the > mito. He ordered a lung specific CT that will be done both on my back and on > my stomach. I also will have a pre and post 6 min. treadmill pulmonary > function test and then see him. It probably won't be for a couple of months. > > laurie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 I hope this news on the lungs is reassuring. Treadmill should be fun....ugh. I have " fond " memories. From '83-'88 my son and I did treadmills for a long-term research protocol. I could do 5 minutes in '83, 2 minutes by '88. This was at the slowest speed with no incline. Maybe they will take pity on you and cancel? The last time a cardiologist ordered a treadmill--this was 1990--the tech took one look at me, called the doc and said, " This woman cannot get on a treadmill. " Saved! B > Alice > > I feel better that it is minor, but was hoping to know more after the > appointment. I am not looking forward to the treadmill. My guess is that I > will make it about 2 minutes and have to stop, but it might be one of my > better days - who knows. > > laurie > > > From: " A ADAMS " > > Reply-To: > > Date: Tue, 9 Nov 2004 20:39:04 -0700 > > To: > > > Subject: Re: update > > > > Laurie, > > > > This sounds promising except I wish you didn't have to deal with it at all. I > > guess you'll know more after the CT scan. I wouldn't be looking forward to > > the treadmill testing. That's not one I could do. I guess you probably feel a > > little better after this appointment, don't you? > > > > Alice > > > > I saw the pulmonologist that my neuro wanted me to see. In looking at my CT > > films, he feels the scaring in my lungs was minor and probably due to the > > mito. He ordered a lung specific CT that will be done both on my back and on > > my stomach. I also will have a pre and post 6 min. treadmill pulmonary > > function test and then see him. It probably won't be for a couple of months. > > > > laurie > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Dear Adrienne, I am so glad to have met you at the UMDF conference. Your posts have much more resonance now that I know you. I am so sorry that you are on this very, very long mito treadmill. Maybe some new docs will have some new solutions. I remember that my long-term endocrinologist told me once that he worried that he could miss something since he knew me so very well. It is a paradox, isn't it? Please keep us as up-to-date as possible. I know truly that we are closer than some families, here on Mitoldies! I hope your tests are not too rigorous, and that you will get the help you need---soon. Please take care, Adrienne. Sincerely, S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Dear Adrienne, I am so glad to have met you at the UMDF conference. Your posts have much more resonance now that I know you. I am so sorry that you are on this very, very long mito treadmill. Maybe some new docs will have some new solutions. I remember that my long-term endocrinologist told me once that he worried that he could miss something since he knew me so very well. It is a paradox, isn't it? Please keep us as up-to-date as possible. I know truly that we are closer than some families, here on Mitoldies! I hope your tests are not too rigorous, and that you will get the help you need---soon. Please take care, Adrienne. Sincerely, S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Adrienne, I'm glad at least you're feeling up to posting - but wish you weren't having so many problems. Your new internist sounds promising - maybe he can figure something out for you. It must be very difficult to think about starting all over with tests, but maybe it's time to approach your case with a fresh look. I'll be thinking of you and hoping for best. You have been through so much. Best of luck. Maggie > > hi guys, > thought I would update you all on how I was doing. I continue to have > alot of problems- neuro (seizures- though not as much lately since my > seizure meds have been upped but still not as controlled as id like, > SLEs/migraines have increased, etc), GI dysmotility is at its worse > in awhile I'm on a liquid diet right now with ensure, etc and even > having problems tolerating it (solids and semisolids made me be so > nauseous, bloated, in alot of pain/burning, etc, couldnt eat at all, > at least the liquids make the symptoms barable along with being on > meds to help- zofran etc). I'm getting both an endoscopy and > colonoscopy on the 24th and the dr is also doing the endoscopic > ultrasound to check out my pancreas and bile ducts to make sure my > symptoms are being aggravated more by pancreatitis and/or gallstones > in my bile ducts (gallbladder is gone). The prep the day before is > what im really not looking forward to, especially with swallowing > issues. This is a new GI dr so he is starting all over with tests. > I've lost about 15 lbs in the past month so if I continue we might > look into other options other than the liquid diet (G/J tube or TPN > has both been suggested depending on what is found). > I also get my PICC line out and my broviac line in on the 19th. > It is helping at least getting fluids daily, that and the florinef > has helped a good bit with some of my autonomic dysfunction (low > blood pressure and tachycardia and dizzy spells, etc). I saw Dr. > Greene thurs. one of the drs I see for mito and she wants to add IV > carnitor now but says we are gonna wait till after the broviac is > placed and see what the GI wants to add also and see what the blood > tests show that she did (she might add more things too- electrolytes, > nutrients, etc.) > I also have to get extensive dental work done tues and am going > on anesthesia for that too, then seeing my pain management dr about a > possibly pain pump because my pain is so severe now and the oral meds > i cant tolerate but IV meds dont seem to bother me as much. Also > seeing a new urologist on thursday because my urology symptoms are > getting very bad with rentention, pain and frequency (have the > diagnosises of neurogenic bladder due to mito and dysautonomia and > also interstitial cystitis and frequent UTIs). I have to find time > sometime to actually measure my urine output and fluid intake for 24 > hrs (even though my fluid intake is basically IV and on basically a > liquid diet lol- but got to do that either tomorrow on monday, ugh) > I just cant wait for all of this to settle down, it never seems > to. Then I have to go to a new neurologist that my mito dr wants me > to see that she recently found out about because my old one basically > gave up on me, so that means more tests, especially since the mito dr > found new abnormalities in my neuro examination this time (she > basically said im showing more weakness on one side, more > coordination probs, ataxia, and hyperreflexia, rigity with tremors on > the other side.) I am also going to a new internist that did a > fellowship in genetics in mid december so I dont know what he will > want to do either. I'm just hoping that by the new year maybe things > will settle down some! > Anyways, it also seems my poor mom is getting more and more > mito symptoms too, I might have her join here if she can get used to > this (she doesnt know too much about the email groups, etc). She is > being tested for dysautonomia and she just seems to have alot of > those symptoms along with the exercize intolerance and muscle > symptoms, GI symptoms, fatigue, etc. I hate seeing her go through > this too. I just hope my brother never gets any more problems than he > has now (hes got extreme emotional and behavioral problems and cant > deal with much more- he has some soft physical symptoms, GI problems > and mild exercize intolerance and some other mild issues- he had more > problems as a kid and they got better so i hope it just stays that > way). > anyways, im done with my vent here guys, just needed to get > this out. I really miss being active in this group like i used to and > hope to again soon but i know you all understand and know that other > have been or some are in the same position. I do think of everyone > daily and hope that those of you not feeling well or with family > members not doing well start to do well soon and those doing better > continue to do well. I'll keep yall posted on how things go or > somehow get my mom to since I'm probably going to be exausted after > everything going on till thanksgiving, just trying to relax this > weekend. Ok, I know I'm known for these long posts, at least this one > has paragraphs, even if they arent correctly done lol. Anyways, > thinking of you all and praying. > take care, > Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Adrienne, I'm glad at least you're feeling up to posting - but wish you weren't having so many problems. Your new internist sounds promising - maybe he can figure something out for you. It must be very difficult to think about starting all over with tests, but maybe it's time to approach your case with a fresh look. I'll be thinking of you and hoping for best. You have been through so much. Best of luck. Maggie > > hi guys, > thought I would update you all on how I was doing. I continue to have > alot of problems- neuro (seizures- though not as much lately since my > seizure meds have been upped but still not as controlled as id like, > SLEs/migraines have increased, etc), GI dysmotility is at its worse > in awhile I'm on a liquid diet right now with ensure, etc and even > having problems tolerating it (solids and semisolids made me be so > nauseous, bloated, in alot of pain/burning, etc, couldnt eat at all, > at least the liquids make the symptoms barable along with being on > meds to help- zofran etc). I'm getting both an endoscopy and > colonoscopy on the 24th and the dr is also doing the endoscopic > ultrasound to check out my pancreas and bile ducts to make sure my > symptoms are being aggravated more by pancreatitis and/or gallstones > in my bile ducts (gallbladder is gone). The prep the day before is > what im really not looking forward to, especially with swallowing > issues. This is a new GI dr so he is starting all over with tests. > I've lost about 15 lbs in the past month so if I continue we might > look into other options other than the liquid diet (G/J tube or TPN > has both been suggested depending on what is found). > I also get my PICC line out and my broviac line in on the 19th. > It is helping at least getting fluids daily, that and the florinef > has helped a good bit with some of my autonomic dysfunction (low > blood pressure and tachycardia and dizzy spells, etc). I saw Dr. > Greene thurs. one of the drs I see for mito and she wants to add IV > carnitor now but says we are gonna wait till after the broviac is > placed and see what the GI wants to add also and see what the blood > tests show that she did (she might add more things too- electrolytes, > nutrients, etc.) > I also have to get extensive dental work done tues and am going > on anesthesia for that too, then seeing my pain management dr about a > possibly pain pump because my pain is so severe now and the oral meds > i cant tolerate but IV meds dont seem to bother me as much. Also > seeing a new urologist on thursday because my urology symptoms are > getting very bad with rentention, pain and frequency (have the > diagnosises of neurogenic bladder due to mito and dysautonomia and > also interstitial cystitis and frequent UTIs). I have to find time > sometime to actually measure my urine output and fluid intake for 24 > hrs (even though my fluid intake is basically IV and on basically a > liquid diet lol- but got to do that either tomorrow on monday, ugh) > I just cant wait for all of this to settle down, it never seems > to. Then I have to go to a new neurologist that my mito dr wants me > to see that she recently found out about because my old one basically > gave up on me, so that means more tests, especially since the mito dr > found new abnormalities in my neuro examination this time (she > basically said im showing more weakness on one side, more > coordination probs, ataxia, and hyperreflexia, rigity with tremors on > the other side.) I am also going to a new internist that did a > fellowship in genetics in mid december so I dont know what he will > want to do either. I'm just hoping that by the new year maybe things > will settle down some! > Anyways, it also seems my poor mom is getting more and more > mito symptoms too, I might have her join here if she can get used to > this (she doesnt know too much about the email groups, etc). She is > being tested for dysautonomia and she just seems to have alot of > those symptoms along with the exercize intolerance and muscle > symptoms, GI symptoms, fatigue, etc. I hate seeing her go through > this too. I just hope my brother never gets any more problems than he > has now (hes got extreme emotional and behavioral problems and cant > deal with much more- he has some soft physical symptoms, GI problems > and mild exercize intolerance and some other mild issues- he had more > problems as a kid and they got better so i hope it just stays that > way). > anyways, im done with my vent here guys, just needed to get > this out. I really miss being active in this group like i used to and > hope to again soon but i know you all understand and know that other > have been or some are in the same position. I do think of everyone > daily and hope that those of you not feeling well or with family > members not doing well start to do well soon and those doing better > continue to do well. I'll keep yall posted on how things go or > somehow get my mom to since I'm probably going to be exausted after > everything going on till thanksgiving, just trying to relax this > weekend. Ok, I know I'm known for these long posts, at least this one > has paragraphs, even if they arent correctly done lol. Anyways, > thinking of you all and praying. > take care, > Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2004 Report Share Posted November 14, 2004 Adrienne, Glad to see this update. I have been wondering how things are going with you. Interesting that you mentioned Florinef...I may ask my neuro about this again. A couple of years ago they had wanted me to try it, but at the time symptoms were so unstable that I was concerned about experimenting with yet another drug. Now I wonder if it might not help me with autonomic stuff as it has you, as that group of symptoms are getting worse. Anyway, tks for posting. I hope you get some help with the GI issues. The j-tube was definitely a good decision for me. Take care, Barbara > > hi guys, > thought I would update you all on how I was doing. I continue to have > alot of problems- neuro (seizures- though not as much lately since my > seizure meds have been upped but still not as controlled as id like, > SLEs/migraines have increased, etc), GI dysmotility is at its worse > in awhile I'm on a liquid diet right now with ensure, etc and even > having problems tolerating it (solids and semisolids made me be so > nauseous, bloated, in alot of pain/burning, etc, couldnt eat at all, > at least the liquids make the symptoms barable along with being on > meds to help- zofran etc). I'm getting both an endoscopy and > colonoscopy on the 24th and the dr is also doing the endoscopic > ultrasound to check out my pancreas and bile ducts to make sure my > symptoms are being aggravated more by pancreatitis and/or gallstones > in my bile ducts (gallbladder is gone). The prep the day before is > what im really not looking forward to, especially with swallowing > issues. This is a new GI dr so he is starting all over with tests. > I've lost about 15 lbs in the past month so if I continue we might > look into other options other than the liquid diet (G/J tube or TPN > has both been suggested depending on what is found). > I also get my PICC line out and my broviac line in on the 19th. > It is helping at least getting fluids daily, that and the florinef > has helped a good bit with some of my autonomic dysfunction (low > blood pressure and tachycardia and dizzy spells, etc). I saw Dr. > Greene thurs. one of the drs I see for mito and she wants to add IV > carnitor now but says we are gonna wait till after the broviac is > placed and see what the GI wants to add also and see what the blood > tests show that she did (she might add more things too- electrolytes, > nutrients, etc.) > I also have to get extensive dental work done tues and am going > on anesthesia for that too, then seeing my pain management dr about a > possibly pain pump because my pain is so severe now and the oral meds > i cant tolerate but IV meds dont seem to bother me as much. Also > seeing a new urologist on thursday because my urology symptoms are > getting very bad with rentention, pain and frequency (have the > diagnosises of neurogenic bladder due to mito and dysautonomia and > also interstitial cystitis and frequent UTIs). I have to find time > sometime to actually measure my urine output and fluid intake for 24 > hrs (even though my fluid intake is basically IV and on basically a > liquid diet lol- but got to do that either tomorrow on monday, ugh) > I just cant wait for all of this to settle down, it never seems > to. Then I have to go to a new neurologist that my mito dr wants me > to see that she recently found out about because my old one basically > gave up on me, so that means more tests, especially since the mito dr > found new abnormalities in my neuro examination this time (she > basically said im showing more weakness on one side, more > coordination probs, ataxia, and hyperreflexia, rigity with tremors on > the other side.) I am also going to a new internist that did a > fellowship in genetics in mid december so I dont know what he will > want to do either. I'm just hoping that by the new year maybe things > will settle down some! > Anyways, it also seems my poor mom is getting more and more > mito symptoms too, I might have her join here if she can get used to > this (she doesnt know too much about the email groups, etc). She is > being tested for dysautonomia and she just seems to have alot of > those symptoms along with the exercize intolerance and muscle > symptoms, GI symptoms, fatigue, etc. I hate seeing her go through > this too. I just hope my brother never gets any more problems than he > has now (hes got extreme emotional and behavioral problems and cant > deal with much more- he has some soft physical symptoms, GI problems > and mild exercize intolerance and some other mild issues- he had more > problems as a kid and they got better so i hope it just stays that > way). > anyways, im done with my vent here guys, just needed to get > this out. I really miss being active in this group like i used to and > hope to again soon but i know you all understand and know that other > have been or some are in the same position. I do think of everyone > daily and hope that those of you not feeling well or with family > members not doing well start to do well soon and those doing better > continue to do well. I'll keep yall posted on how things go or > somehow get my mom to since I'm probably going to be exausted after > everything going on till thanksgiving, just trying to relax this > weekend. Ok, I know I'm known for these long posts, at least this one > has paragraphs, even if they arent correctly done lol. Anyways, > thinking of you all and praying. > take care, > Adrienne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Barbara I don't think I will make it to 6 minutes, but who knows. I know I am not looking forward to it and will probably ask my son and daughter-in-law to pick me up. I'm sure I will be any shape to drive an hour home. laurie > > Reply-To: > Date: Wed, 10 Nov 2004 15:18:33 -0000 > To: > Subject: Re: update > > > I hope this news on the lungs is reassuring. Treadmill should be > fun....ugh. I have " fond " memories. From '83-'88 my son and I did > treadmills for a long-term research protocol. I could do 5 minutes > in '83, 2 minutes by '88. This was at the slowest speed with no > incline. Maybe they will take pity on you and cancel? The last time > a cardiologist ordered a treadmill--this was 1990--the tech took one > look at me, called the doc and said, " This woman cannot get on a > treadmill. " Saved! > > B > > > > >> Alice >> >> I feel better that it is minor, but was hoping to know more after > the >> appointment. I am not looking forward to the treadmill. My guess > is that I >> will make it about 2 minutes and have to stop, but it might be one > of my >> better days - who knows. >> >> laurie >> >>> From: " A ADAMS " >>> Reply-To: >>> Date: Tue, 9 Nov 2004 20:39:04 -0700 >>> To: > >>> Subject: Re: update >>> >>> Laurie, >>> >>> This sounds promising except I wish you didn't have to deal with > it at all. I >>> guess you'll know more after the CT scan. I wouldn't be looking > forward to >>> the treadmill testing. That's not one I could do. I guess you > probably feel a >>> little better after this appointment, don't you? >>> >>> Alice >>> >>> I saw the pulmonologist that my neuro wanted me to see. In > looking at my CT >>> films, he feels the scaring in my lungs was minor and probably > due to the >>> mito. He ordered a lung specific CT that will be done both on my > back and on >>> my stomach. I also will have a pre and post 6 min. treadmill > pulmonary >>> function test and then see him. It probably won't be for a > couple of months. >>> >>> laurie >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2004 Report Share Posted November 20, 2004 Barbara I don't think I will make it to 6 minutes, but who knows. I know I am not looking forward to it and will probably ask my son and daughter-in-law to pick me up. I'm sure I will be any shape to drive an hour home. laurie > > Reply-To: > Date: Wed, 10 Nov 2004 15:18:33 -0000 > To: > Subject: Re: update > > > I hope this news on the lungs is reassuring. Treadmill should be > fun....ugh. I have " fond " memories. From '83-'88 my son and I did > treadmills for a long-term research protocol. I could do 5 minutes > in '83, 2 minutes by '88. This was at the slowest speed with no > incline. Maybe they will take pity on you and cancel? The last time > a cardiologist ordered a treadmill--this was 1990--the tech took one > look at me, called the doc and said, " This woman cannot get on a > treadmill. " Saved! > > B > > > > >> Alice >> >> I feel better that it is minor, but was hoping to know more after > the >> appointment. I am not looking forward to the treadmill. My guess > is that I >> will make it about 2 minutes and have to stop, but it might be one > of my >> better days - who knows. >> >> laurie >> >>> From: " A ADAMS " >>> Reply-To: >>> Date: Tue, 9 Nov 2004 20:39:04 -0700 >>> To: > >>> Subject: Re: update >>> >>> Laurie, >>> >>> This sounds promising except I wish you didn't have to deal with > it at all. I >>> guess you'll know more after the CT scan. I wouldn't be looking > forward to >>> the treadmill testing. That's not one I could do. I guess you > probably feel a >>> little better after this appointment, don't you? >>> >>> Alice >>> >>> I saw the pulmonologist that my neuro wanted me to see. In > looking at my CT >>> films, he feels the scaring in my lungs was minor and probably > due to the >>> mito. He ordered a lung specific CT that will be done both on my > back and on >>> my stomach. I also will have a pre and post 6 min. treadmill > pulmonary >>> function test and then see him. It probably won't be for a > couple of months. >>> >>> laurie >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 a and Malissa, thanks so much for the updates. B _____ From: a C Koch Sent: Saturday, January 15, 2005 1:01 PM To: Subject: update Hi all! I know Malisa is doing a great job at keeping everyone updated on , as she is in contact with her mother. asked me to let you know every time I saw an update from her sister. This is what Ashlee had to say on 's website: had a pretty ruff time in recovery and over night. She is still in a lot of pain. They want her to get up and get in a chair today. She still has the epidural and catheter in but we think she doesn't get a lot a through the epidural or she wouldn't feel her legs to get up. At this point I want her to not feel her legs so she can be comfortable and rest. Her little body is so tired. She looked so peaceful and beautiful like an angel yesterday when I got see her coming out of anesthesia. She is the toughest, bravest, most awesome girl I know, and I am so very proud to call her my friend and have her as my sister. Please all continue to pray for the pain to go away and for her to heal. I will try to update again as soon as I can. I know and her whole family appreciate all the thoughts that are being sent her way. She is such a strong person and has gone through so much. Smiles, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 a Thanks. laurie > > Reply-To: > Date: Sat, 15 Jan 2005 13:01:27 -0600 > To: > Subject: update > > Hi all! I know Malisa is doing a great job at keeping everyone updated > on , as she is in contact with her mother. asked me to > let you know every time I saw an update from her sister. This is what > Ashlee had to say on 's website: > > had a pretty ruff time in recovery and over night. She is > still in a lot of pain. They want her to get up and get in a chair today. > She still has the epidural and catheter in but we think she doesn't get a > lot a through the epidural or she wouldn't feel her legs to get up. At > this point I want her to not feel her legs so she can be comfortable and > rest. Her little body is so tired. She looked so peaceful and beautiful > like an angel yesterday when I got see her coming out of anesthesia. She > is the toughest, bravest, most awesome girl I know, and I am so very > proud to call her my friend and have her as my sister. Please all > continue to pray for the pain to go away and for her to heal. I will try > to update again as soon as I can. > > I know and her whole family appreciate all the thoughts that are > being sent her way. She is such a strong person and has gone through so > much. > Smiles, > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2005 Report Share Posted January 15, 2005 a, HI! Hon how are YOU doing? I need to a call you soon! I wiil try tomorrow afternoon. Thanks for the post on Alison. Can you send us her website. I would love to see it and keep up with the posts about her healing. Hugs and Smiles, Chrsitine > a > > Thanks. > > laurie > > > From: a C Koch > > Reply-To: > > Date: Sat, 15 Jan 2005 13:01:27 -0600 > > To: > > Subject: update > > > > Hi all! I know Malisa is doing a great job at keeping everyone updated > > on , as she is in contact with her mother. asked me to > > let you know every time I saw an update from her sister. This is what > > Ashlee had to say on 's website: > > > > had a pretty ruff time in recovery and over night. She is > > still in a lot of pain. They want her to get up and get in a chair today. > > She still has the epidural and catheter in but we think she doesn't get a > > lot a through the epidural or she wouldn't feel her legs to get up. At > > this point I want her to not feel her legs so she can be comfortable and > > rest. Her little body is so tired. She looked so peaceful and beautiful > > like an angel yesterday when I got see her coming out of anesthesia. She > > is the toughest, bravest, most awesome girl I know, and I am so very > > proud to call her my friend and have her as my sister. Please all > > continue to pray for the pain to go away and for her to heal. I will try > > to update again as soon as I can. > > > > I know and her whole family appreciate all the thoughts that are > > being sent her way. She is such a strong person and has gone through so > > much. > > Smiles, > > a > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 a, Thanks for the update on . I have been thinkng of her often and hoping that the pain has lessened and that she is at RMH. I have stayed there about 6 times the past 6 yrs. They are wonderful and they truly care about the patients and families. I love how they have animals that come and visit and the local residents are so willing to help. We have had a driver named Captain Dennis take us back and forth to the airport and around town when we have been in Cleveland. He is the best and I am totally comfortable traveling with him, even as a woman alone or with a child. He is a Blessing that I am sure of. > This was sent from 's sister on Friday: > > was released from the hospital late this afternoon. We are all > now at the RMH. continues to experience significant pain in your > abodomen and lower back. She is very swollen and uncomfortable. The pain > management doc's had nothing to offer her. She was tried on many > different pain meds. They have sent her home with Fentanyl lollipops, but > they really sedate her. Please continue to pray for as she faces > a long recovery and ease from the pain. They are forecasting a blizzard > for Cleveland tonight, so we are uncertain as to when we will be able to > fly home. > > " Big SIS Ash " > > I am sure with all the snow, it might be awhile before planes leave. I > am not sure what it is like in Cleveland, if they got ice along with the > snow but know what it is like in Iowa and we certainly did! > Smiles, > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 a Thanks for the update. I hope you can stay in with your bad weather. We got all snow and wind, but no ice. They were predicting that for tonight and tomorrow night, but have now changed the forecast to snow showers. I'd rather have the snow. I was thinking that we might have a snow day tomorrow, but I really need every day to get things in place - only two weeks to go. Stay safe and warm, laurie > > Reply-To: > Date: Sun, 23 Jan 2005 10:31:45 -0600 > To: > Subject: Update > > This was sent from 's sister on Friday: > > was released from the hospital late this afternoon. We are all > now at the RMH. continues to experience significant pain in your > abodomen and lower back. She is very swollen and uncomfortable. The pain > management doc's had nothing to offer her. She was tried on many > different pain meds. They have sent her home with Fentanyl lollipops, but > they really sedate her. Please continue to pray for as she faces > a long recovery and ease from the pain. They are forecasting a blizzard > for Cleveland tonight, so we are uncertain as to when we will be able to > fly home. > > " Big SIS Ash " > > I am sure with all the snow, it might be awhile before planes leave. I > am not sure what it is like in Cleveland, if they got ice along with the > snow but know what it is like in Iowa and we certainly did! > Smiles, > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 Thanks for the update. Please send my love to and I'll keep her in my thoughts for some relief from the pain and a comfortable recovery. It sounds as if she should stay right where she is. The snow and cold in the NE is awful. I keep watching the Weather Channel shaking my head and thinking what a mess I could be in. It is supposed to be 65 degrees here on Tuesday and for the last few days - it has been in the upper 50's . What a difference! Keep warm and dry everyone. I'm a little worried about Trish who I haven't heard from in a while. She's on the Cape and it would be very bad if she lost power. I'll try to give her a call later today. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2005 Report Share Posted January 23, 2005 If you get a hold of Trish, please give her my love. Alice wrote: >Thanks for the update. Please send my love to and I'll keep >her in my thoughts for some relief from the pain and a comfortable >recovery. It sounds as if she should stay right where she is. > >The snow and cold in the NE is awful. I keep watching the Weather >Channel shaking my head and thinking what a mess I could be in. It >is supposed to be 65 degrees here on Tuesday and for the last few >days - it has been in the upper 50's . What a difference! > >Keep warm and dry everyone. I'm a little worried about Trish who I >haven't heard from in a while. She's on the Cape and it would be >very bad if she lost power. I'll try to give her a call later today. > >Alice > > > > > > > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 Thanks Barbara. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2005 Report Share Posted February 23, 2005 , I am praying with a capital P! B _____ From: LILQT4U1984@... Sent: Wednesday, February 23, 2005 2:23 PM To: Moonchild62579@...; allyson.l.sisler@...; Utbrn@...; PaddockSwim9098@...; go.shirl@...; Catbecca83@...; SheDeKold@...; denise.lappan@...; anne02@...; Adia003509@...; Traci1175@...; heatheres@...; Hollyorn@...; IMJANER2@...; kckoch76@...; kate@...; Malnic2185@...; Lillian@...; rosefarm@...; Marta608@...; peetie@...; thefourofus03@...; lindseyn18@...; bethb48@...; digby@...; daniellecoccinelle@...; roseschussler@...; aaschwenk@...; Staceyje@...; PJS3067198@...; laurice_stevens@...; HiyaChica@...; tpnsupport ; LEMT13@...; JenRWaterman85@...; Subject: Update Confusion is the word of the day. Made numerous phone calls yesterday to Cleveland, Cincinnati and to my PCP. Doing everything in our power to get answers and get the appt moved up for Cincy. It came down to if a doc. called and spoke to the doc at Cincy then the appt could be moved up, but that was the ONLY way. Called my PCP, and mito doc. and asked both to please call and as far as I know neither have done so. My sis is going to Cincy tom for work and would be more than glad to have us along for company. It just seemed like the perfect plan, but no doors are opening for this to happen. Then today the surgeon called. It was from prodding from my PCP but he DID call. He said that the total colectomy with IRA could be done but not laprascopic. He said it was just too dangerous as I have scar tissue from the first surgery, had my rectum removed and recontructed with my transverse colon, and it's hard for young people to recover from the laprascopic because of the carbon dioxide used to inflate the abdomen. All in all he said it's my decision and he will do as I wish, but he still would like for me to do the appendacostomy first. He said I would have 3-4 BM's a day after a total colectomy and is afraid that I would end up reverting to an ileostomy and he doesn't want that for me. I think 3x a day would be great. Then I could eat really well 3x a day. That doesn't sound awful or unreasonable to me. Ultimately I have this huge decision to make again and have no idea what to do. I had wanted to get a second opinion from Cincy but don't feel like I can wait a month for that appt when I'm feeling so miserable and continuing to lose weight. The colectomy with IRA would be like having the exact same surgery I've had done all over again. It would involve opening up the same incision, a foley, pain and long hospital and recovery time. At least (I think/hope/pray) that there would be good at the end of this surgery. UPDATE- while I was typing this my mom got intouch with my mito doc. and is calling the GI at Cincy NOW. This is going to be my answer. If Cincy can see me this week I'm going there, if not then I'm going to Cleveland for surgery next week. I guess I will be missing my 21st Birthday either route I go. Something tends to happen nearly every year right around this time. Mom says I should start packing as we are most likely going somewhere very soon. My mind is just spinning and my tummy is in a knot. Please God open the doors and lead me in. Thanks for your prayers and thanks for being so supportive!! Quote Link to comment Share on other sites More sharing options...
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