Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 , please let us know how things are going... We will say a prayer for you & Spencer. Rhonda, mom to 2, & Haven 5 [eosinophilic gastroenteritis] Quick update > > >Hi everyone, > >Spencer has been bleeding out is stoma and has had two black stools....looks >like we have a problem here. He is acting pretty crabby all the time and >gets tired easily. I sure hope that he doesn't have a rip in his stomach or >something of that nature. > >Looks like we are going to be giving him his IV iron a little sooner this >month than usual. We'll keep you posted. Crossing our fingers that we >don't have to transfuse again. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 andrea, as you know from the TPN list, Kody's been pulling some stunts this weekend too. I'm just now getting to mail.. blood cultures are still negative (yea!) From what we went through inAugust, however, I can plead with you to JUMP< SCREAM AND HOLLER with these symptoms. Usually, they turn out to be subacute GI bleeds and usually they will resolve on their own. HOWEVER, they can hemorrhage and bleed out within half an hour (YOU DONT WANT TO EVER SEE THIS). Did you hemoccult his stools? When Kody had his horrid bleed, they tried the whole iron bit first.. actually sent him home oozing bright red from the stoma to be scoped two days later.... the next day he started hemorrhaging and got back to the hospital barely alive. It is my intention to scare you, sorry, just dont want anything to happen to spenc and dont want the docs to take it too lightly or make you think it is " no big deal " steph. [eosinophilic gastroenteritis] Quick update Hi everyone, Spencer has been bleeding out is stoma and has had two black stools....looks like we have a problem here. He is acting pretty crabby all the time and gets tired easily. I sure hope that he doesn't have a rip in his stomach or something of that nature. Looks like we are going to be giving him his IV iron a little sooner this month than usual. We'll keep you posted. Crossing our fingers that we don't have to transfuse again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 , Congratulations! Sign up for a doula! ALREADY DONE!! And I've been in contact with a certified doula in my area, that is also willing to assist at the birth!! I completely believe in mind over matter ... the entire pregnancy I have held fast to the concept of making it thru the month of November! Now that November is here, I am even more convinced that I will! <3 B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2000 Report Share Posted November 3, 2000 My girlfriend and I are seriously looking into becoming doulas. Our local college offers a course twice a year :-) Michele , Congratulations! Sign up for a doula! ALREADY DONE!! And I've been in contact with a certified doula in my area, that is also willing to assist at the birth!! I completely believe in mind over matter ... the entire pregnancy I have held fast to the concept of making it thru the month of November! Now that November is here, I am even more convinced that I will! <3 B Give the Gift of Life Breastfeed!http://www.lactivist.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 In a message dated 11/26/2001 5:48:13 AM Eastern Standard Time, rosacea-support writes: << Quick update >> Hi, It was sooo good to hear your post.... I too think I've become obsessed with the face thing and am trying to think about other things as well... I too am on a low carb diet and believe it has helped. I wash my face with distilled water, use neutregema cleanser, tolerin and vanicream. I believe the rosacea is, more or less, in control.... I try to count my other blessings... I know some in this group have more advanced rosacea and are therefore in more mental and physical pain as a result. I wish there was a cure for this..... I wish you continued success Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 I wanted to mention something. Reading about the 'obsession' in this post makes me want to mention it. I think many of you may use this technique as well: unless you have lots of flaking, or something else that you can physically HELP on your face, try not looking in the mirror, except when you're washing your face. I've avoided the mirror for a coupla months now (luckily i don't have skin flaking or the like), and i've noticed a reduction in my concern of how my face looks. I began avoiding looking at my own image when I realized how concerned i am while speaking to others; imagining them thinking about my bright red skin color. Then I started thinking, 'you have no idea WHAT they're thinking about your skin, not even from their facial expressions.' So i challenged myself with ignoring the mirror in restrooms. Sure enough, my obsession has declined. i notice less reaction in those i'm speaking to as well. I'm grateful to have learned this about myself. jon > >To: rosacea-support >Subject: Quick update >Date: Mon, 26 Nov 2001 02:45:32 +1300 > > >I haven't posted here for months, or even, dare I admit it, read the posts. > >The first thing that made me stop reading was lack of time. But I also >found I was beginning to obsess about my face too much. It became a vicious >circle I think. > >Anyway, for the past few months my skin has been great. Sure, it hasn't >been " normal " , but I doubt it could ever be. I've only blushed a few times, >and only once was it bad enough to get teased about (even though I felt >like it was really bad) > >I'm no longer flushing, except for the odd time. A vast improvement on >every day. > >I've made a point of lowering the temperature when I shower, especially if >I'm planning on a long shower, or washing my face. I still have the odd hot >shower, especially if the day is cold. I just make sure the water doesnt go >near my face. My forehead tends to get abit blotchy but not siren red like >it used to. > >In the last couple of months (since early sept) I've altered my diet, and I >suspect this has a major bearing on my skin too. I won't go into great >detail (I dont want to be accused of spamming!), but I'm now doing a low >carb diet, and apart from the weight loss, my skin has never looked better. >It also could be the vast amounts of water I'm drinking too. > >One thing I have noticed, is when I " cheat " and eat something high in >carbs, I flush. It could be the grain in it, not sure. Both times it has >been after eating muffins. > >All in all, I feel more relaxed, less obsessive about my face, and more in >control. I hope it lasts! > > ---------- > > >--- >Outgoing mail is certified Virus Free. >Checked by AVG anti-virus system (http://www.grisoft.com). >Version: 6.0.298 / Virus Database: 161 - Release Date: 13/11/01 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Hoping the changes help and you don't have to wait too long for Gail to be seen! Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2003 Report Share Posted May 9, 2003 oh Good. sounds somewhat helpful. Please, ...let me know if you need anything... Penny :-D Quick Update has started on Lithobid which should start working pretty quickly. We are looking at a day treatement center called Pacific Center and a selfcontained classroom option for a while. It's hard to say what will happen next, but this could be a good option to help with some self regulatory and social skills. I saw my orthoped this morning and he did shoot my hip for me (YAY!!) so in a couple days the bursitis should calm down and at least that will not be such a pain in the rear. Of course today it is sore from being jabbed, but then it hurt like you know what anyway so at least now it should start feeling better. I did get the name of a good ped neuro for Gail so now waiting for an appt for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 HAPPY BIRTHDAY TO VICTORIA!!!! Meg will be 1 on Sept. 20th.. I'm having a big party too!! It will be fun.. she needs some new toys.. she's bored with the ones she has.. She took 5 steps on Saturday.. just got right up and walked.. hasn't done it since, I think she's still in shock. take care! > Hello Ladies: > > Welcome to all the new members that I have missed replying to personally. > > I just wanted to update all of you on us. > > turned 1 on Sunday; we had a big party on Saturday and another on > Sunday. She is almost walking, but gets too excited when she does it and > falls. She is totally a strong willed little person and wants what she wants > and now. It is hilarious. We take her tomorrow for her shots and check up. I > know she weighs about 24.5 pounds because she had an ear infection last week. > I will be curious to see how tall she is and where she falls on the growth > chart. > > We have begun ttc and probably will only do so for about 2 years then we will > be done. I am not getting any younger. > > I will post birthday pictures when I get them developed. > > Lori L. > Graduate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 HAPPY BIRTHDAY TO VICTORIA!!!! Meg will be 1 on Sept. 20th.. I'm having a big party too!! It will be fun.. she needs some new toys.. she's bored with the ones she has.. She took 5 steps on Saturday.. just got right up and walked.. hasn't done it since, I think she's still in shock. take care! > Hello Ladies: > > Welcome to all the new members that I have missed replying to personally. > > I just wanted to update all of you on us. > > turned 1 on Sunday; we had a big party on Saturday and another on > Sunday. She is almost walking, but gets too excited when she does it and > falls. She is totally a strong willed little person and wants what she wants > and now. It is hilarious. We take her tomorrow for her shots and check up. I > know she weighs about 24.5 pounds because she had an ear infection last week. > I will be curious to see how tall she is and where she falls on the growth > chart. > > We have begun ttc and probably will only do so for about 2 years then we will > be done. I am not getting any younger. > > I will post birthday pictures when I get them developed. > > Lori L. > Graduate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 HAPPY BIRTHDAY TO VICTORIA!!!! Meg will be 1 on Sept. 20th.. I'm having a big party too!! It will be fun.. she needs some new toys.. she's bored with the ones she has.. She took 5 steps on Saturday.. just got right up and walked.. hasn't done it since, I think she's still in shock. take care! > Hello Ladies: > > Welcome to all the new members that I have missed replying to personally. > > I just wanted to update all of you on us. > > turned 1 on Sunday; we had a big party on Saturday and another on > Sunday. She is almost walking, but gets too excited when she does it and > falls. She is totally a strong willed little person and wants what she wants > and now. It is hilarious. We take her tomorrow for her shots and check up. I > know she weighs about 24.5 pounds because she had an ear infection last week. > I will be curious to see how tall she is and where she falls on the growth > chart. > > We have begun ttc and probably will only do so for about 2 years then we will > be done. I am not getting any younger. > > I will post birthday pictures when I get them developed. > > Lori L. > Graduate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 Congratulations to you and Happy Birthday !!!! > Hello Ladies: > > Welcome to all the new members that I have missed replying to personally. > > I just wanted to update all of you on us. > > turned 1 on Sunday; we had a big party on Saturday and another on > Sunday. She is almost walking, but gets too excited when she does it and > falls. She is totally a strong willed little person and wants what she wants > and now. It is hilarious. We take her tomorrow for her shots and check up. I > know she weighs about 24.5 pounds because she had an ear infection last week. > I will be curious to see how tall she is and where she falls on the growth > chart. > > We have begun ttc and probably will only do so for about 2 years then we will > be done. I am not getting any younger. > > I will post birthday pictures when I get them developed. > > Lori L. > Graduate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 WoW Lori, Can you even believe that she is the big ONE LOL.. The girls will be turning one on Oct 26th, we are have a rediculosliy (sp sorry) large party. My family is big on first b-days and we didn't invite everyone to the girls christening (espically everyones kids cause the girls were so small did not want to risk getting them sick). Any way A big HAPPY BIRTHDAY to your Earth Angel..... I c an imagine her walking too, can't wait to see the girls stumbling around.. Let us know how the party goes.. Hugs Dawn Mommy to Triplet and Twin Angels 3/30/01, and 4/4/01 s/b@16 weeks and 1/2/02 s/b @ 20 weeks and our "natural" earth angels la and Lydia b 10/26/02 (abdominal cerclage p.s feels like just yesterday I saw a pg picture of you on the net, and where seeing you ahead of , me and the rest of our group that has grown so much since last year.. so glad to see everyone is getting support and we are encouring others with our stories,,, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 : Can you believe that they are already so old? Time flies. Meg will get some great stuff-- is a little overwhelmed by all the new things to do. We had to put some of them up for a while. We have a lot of family. Have fun planning the party Lori L. Quoting kmcmonty kmcmonty@...>: > HAPPY BIRTHDAY TO VICTORIA!!!! > > Meg will be 1 on Sept. 20th.. I'm having a big party too!! > > It will be fun.. she needs some new toys.. she's bored with the > ones she has.. > > She took 5 steps on Saturday.. just got right up and walked.. hasn't > done it since, I think she's still in shock. > > take care! > > > > > Hello Ladies: > > > > Welcome to all the new members that I have missed replying to > personally. > > > > I just wanted to update all of you on us. > > > > turned 1 on Sunday; we had a big party on Saturday and > another on > > Sunday. She is almost walking, but gets too excited when she does > it and > > falls. She is totally a strong willed little person and wants what > she wants > > and now. It is hilarious. We take her tomorrow for her shots and > check up. I > > know she weighs about 24.5 pounds because she had an ear infection > last week. > > I will be curious to see how tall she is and where she falls on the > growth > > chart. > > > > We have begun ttc and probably will only do so for about 2 years > then we will > > be done. I am not getting any younger. > > > > I will post birthday pictures when I get them developed. > > > > Lori L. > > Graduate > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Hello Ladies: Just wanted to let you know that 's party was very sucessful. She didn't blow out the candles, but did dig into her cake. She hated the taste and ended up throwing up because her father insisted on her tasting it. Other than that it was tons of fun; we had a party on Saturday for my husbands family and had 14 people. Then on Sunday, we had my family with a total of 27 people and it poured rain the whole time--that's what I get for picking a ducky theme. had a party at the daycare on Tuesday, too. She got such nice things and is a bit overwhelmed by all the new toys; so we put some up for a while. She is still have problems with vomitting, but we think it is allergies not reflux. She will be seeing a pediatric allergist soon. We had a weigh in at 24lb 6 oz on Wednesday, but only 23lb15oz on Friday. She is 30.5 inches long and is in the 75th percentile for both. We had to delay getting her one year pictures until this week due to her vomitting. Hopefully will get something posted soon Lori L Quoting " " dawncherokee@...>: > WoW Lori, > Can you even believe that she is the big ONE LOL.. The girls will be > turning one on Oct 26th, we are have a rediculosliy (sp sorry) large party. > My > family is big on first b-days and we didn't invite everyone to the girls > christening (espically everyones kids cause the girls were so small did not > want to > risk getting them sick). Any way A big HAPPY BIRTHDAY to your Earth > Angel..... I > c an imagine her walking too, can't wait to see the girls stumbling around.. > > Let us know how the party goes.. > Hugs > Dawn > Mommy to Triplet and Twin Angels > 3/30/01, and 4/4/01 s/b@16 weeks > and 1/2/02 s/b @ 20 weeks > and our " natural " earth angels la and Lydia b 10/26/02 (abdominal > cerclage > p.s feels like just yesterday I saw a pg picture of you on the net, and where > > seeing you ahead of , me and the rest of our group that has grown so > much since last year.. so glad to see everyone is getting support and we are > > encouring others with our stories,,, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Dawn: I can't believe your girls are getting that close to one. Are they crawling and getting into everything? I am so busy chasing , I can't imagine what it is like chasing two My family is big into birthdays; we don't do so much for Christmas because it is hard to get everyone together, so birthdays are a big deal. Have fun planning \ Lori Quoting " " dawncherokee@...>: > WoW Lori, > Can you even believe that she is the big ONE LOL.. The girls will be > turning one on Oct 26th, we are have a rediculosliy (sp sorry) large party. > My > family is big on first b-days and we didn't invite everyone to the girls > christening (espically everyones kids cause the girls were so small did not > want to > risk getting them sick). Any way A big HAPPY BIRTHDAY to your Earth > Angel..... I > c an imagine her walking too, can't wait to see the girls stumbling around.. > > Let us know how the party goes.. > Hugs > Dawn > Mommy to Triplet and Twin Angels > 3/30/01, and 4/4/01 s/b@16 weeks > and 1/2/02 s/b @ 20 weeks > and our " natural " earth angels la and Lydia b 10/26/02 (abdominal > cerclage > p.s feels like just yesterday I saw a pg picture of you on the net, and where > > seeing you ahead of , me and the rest of our group that has grown so > much since last year.. so glad to see everyone is getting support and we are > > encouring others with our stories,,, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Dawn: I can't believe your girls are getting that close to one. Are they crawling and getting into everything? I am so busy chasing , I can't imagine what it is like chasing two My family is big into birthdays; we don't do so much for Christmas because it is hard to get everyone together, so birthdays are a big deal. Have fun planning \ Lori Quoting " " dawncherokee@...>: > WoW Lori, > Can you even believe that she is the big ONE LOL.. The girls will be > turning one on Oct 26th, we are have a rediculosliy (sp sorry) large party. > My > family is big on first b-days and we didn't invite everyone to the girls > christening (espically everyones kids cause the girls were so small did not > want to > risk getting them sick). Any way A big HAPPY BIRTHDAY to your Earth > Angel..... I > c an imagine her walking too, can't wait to see the girls stumbling around.. > > Let us know how the party goes.. > Hugs > Dawn > Mommy to Triplet and Twin Angels > 3/30/01, and 4/4/01 s/b@16 weeks > and 1/2/02 s/b @ 20 weeks > and our " natural " earth angels la and Lydia b 10/26/02 (abdominal > cerclage > p.s feels like just yesterday I saw a pg picture of you on the net, and where > > seeing you ahead of , me and the rest of our group that has grown so > much since last year.. so glad to see everyone is getting support and we are > > encouring others with our stories,,, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2003 Report Share Posted September 11, 2003 hi jodi i hope max is fealing a little better. sorry i just found out today that he's been sick. my computer broke down (virus got the hard drive) so i use my moms when i go to her house. i haven't been there in a week because everythings been crazy since nicholas started kindergarten and soccer. christopher has started nursery school this week too. he is doing pretty good there. i talked to my doctor and she said she will write what ever i need to see if the insurance will cover a visit to dr h. i will email you soon. jodie (nicholas-5, christopher-2 1/2 rss, johnathon 2 1/2 months) > Hi, all. I am home on a short break from the hospital so I can > shower in peace and read emails and check mail. > > Max is about the same. Still cannot eat. He's on IV fluids and just > sucking on lollipops and eating half a roll. Tomorrow he is > scheduled for a g-j tube placement and we are hoping that will help. > He will be on pump feedings from 7pm to 7am before he can go home. I > hope that will only take a day or two. We will see. > > Thank you all for your emails. I wish I could reply to each one of > you, but I don't have time right now. Just know that they mean a lot > to me and I will eventually be home to respond appropriately. > > Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 I'm sorry your life has been so filled with medical stuff, along with the hurricanes. I had the same thing happen when I e-mailed Dr. Cohen. I know he use to do his e-mail from home and now that he has a family, probably would like some time with them. laurie > > Reply-To: > Date: Tue, 21 Dec 2004 12:50:29 -0000 > To: > Subject: Quick Update > > > Hello Friends! > > I am trying to catch up on posts and check in on how you are all > doing. > I have had a few bad months here in Melbourne, Florida. It started > with 3 Hurricanes plowing thru in September! Our house had some > damage, but compared to others we can't complain. Pool cage and > screen totalled and water damage to the ceiling in the dining room. > > I was hopsitalized in October for emergency surgery when my > Infuse-a-port became septic with Serratia ( a bacterial infection). > I had it removed and spent 5 days in the hospital. Then 3 weeks later > I had another bout of Respiratory trouble and was back in the > hospital for another 5 days. I had 2 more surgeries while I was > admitted the second time. The surgeon tried to place a new port but > couldn't get it placed properly without a fluroscopy machine (special > x-ray machine), so after the first failed surgery, I had the port > placed in the Radiology Dept...........while I was AWAKE!!! The > Radiologists can't use genral anesthesia so the use local meds like > novicaine. I am sitting here at the computer typing while I am > hooked up to the IV thru my port. I am recieving Fliuds and > Potassium. I have been fighting another Resp infection and as usual > decompensated and began the cycylic vomiting routing once again! I > am really getting sick of this.......but what choice do we have but > to deal with the situtation we were given? Right? > > I have a question for you. Dr Cohen emailed me a week or so back > while I was in the hosptial. When I tried to reply, I got an " invalid > emailed " and it bounced back to me. Does anyone have the new email? > Should I call CCF and see if they will give it to me? I imagine that > they just don't go giving out his email to everyone or he would spend > his whole day replying to emails and never seeing patients. > If any of you have it and don't want to post it, you can email me at > Goldenfamily5@.... > > Thanks, > Happy Holidays to all my Mitoldie Friends :-) > > > > > > > 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 December 22, 2004 Report Share Posted December 22, 2004 Laurie, It was good to hear from you! I called CCF and asked about the email trouble and was told he is NOT giving out his email. It was so great to email him and get such a prompt reply. He was always so good about checking in on us and answering even my most " crazy " emails :-0) I can understand where he is coming from though, he is one busy guy! I guess it will be back to phone tag again, lol! I really shouldn't complain, he is better about calling me back than half the local docs! Happy Holidays to you and your family, > > > I'm sorry your life has been so filled with medical stuff, along with the > hurricanes. > > I had the same thing happen when I e-mailed Dr. Cohen. I know he use to do > his e-mail from home and now that he has a family, probably would like some > time with them. > > laurie > > > From: " mitomomtoo " > > Reply-To: > > Date: Tue, 21 Dec 2004 12:50:29 -0000 > > To: > > Subject: Quick Update > > > > > > Hello Friends! > > > > I am trying to catch up on posts and check in on how you are all > > doing. > > I have had a few bad months here in Melbourne, Florida. It started > > with 3 Hurricanes plowing thru in September! Our house had some > > damage, but compared to others we can't complain. Pool cage and > > screen totalled and water damage to the ceiling in the dining room. > > > > I was hopsitalized in October for emergency surgery when my > > Infuse-a-port became septic with Serratia ( a bacterial infection). > > I had it removed and spent 5 days in the hospital. Then 3 weeks later > > I had another bout of Respiratory trouble and was back in the > > hospital for another 5 days. I had 2 more surgeries while I was > > admitted the second time. The surgeon tried to place a new port but > > couldn't get it placed properly without a fluroscopy machine (special > > x-ray machine), so after the first failed surgery, I had the port > > placed in the Radiology Dept...........while I was AWAKE!!! The > > Radiologists can't use genral anesthesia so the use local meds like > > novicaine. I am sitting here at the computer typing while I am > > hooked up to the IV thru my port. I am recieving Fliuds and > > Potassium. I have been fighting another Resp infection and as usual > > decompensated and began the cycylic vomiting routing once again! I > > am really getting sick of this.......but what choice do we have but > > to deal with the situtation we were given? Right? > > > > I have a question for you. Dr Cohen emailed me a week or so back > > while I was in the hosptial. When I tried to reply, I got an " invalid > > emailed " and it bounced back to me. Does anyone have the new email? > > Should I call CCF and see if they will give it to me? I imagine that > > they just don't go giving out his email to everyone or he would spend > > his whole day replying to emails and never seeing patients. > > If any of you have it and don't want to post it, you can email me at > > Goldenfamily5@a... > > > > Thanks, > > Happy Holidays to all my Mitoldie Friends :-) > > > > > > > > > > > > > > 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 December 22, 2004 Report Share Posted December 22, 2004 You might want to ask him if you can have his new one. He might feel it is appropriate to give it to you if you promise to not give it to anyone. I know he was getting many e-mails from non-patients as his e-mail had become general knowledge. laurie > > Reply-To: > Date: Wed, 22 Dec 2004 12:10:14 -0000 > To: > Subject: Re: Quick Update > > > > Laurie, > It was good to hear from you! I called CCF and asked about the email > trouble and was told he is NOT giving out his email. It was so great > to email him and get such a prompt reply. He was always so good about > checking in on us and answering even my most " crazy " emails :-0) I > can understand where he is coming from though, he is one busy guy! I > guess it will be back to phone tag again, lol! I really shouldn't > complain, he is better about calling me back than half the local docs! > > Happy Holidays to you and your family, > > > > > > >> >> >> I'm sorry your life has been so filled with medical stuff, along > with the >> hurricanes. >> >> I had the same thing happen when I e-mailed Dr. Cohen. I know he > use to do >> his e-mail from home and now that he has a family, probably would > like some >> time with them. >> >> laurie >> >>> From: " mitomomtoo " >>> Reply-To: >>> Date: Tue, 21 Dec 2004 12:50:29 -0000 >>> To: >>> Subject: Quick Update >>> >>> >>> Hello Friends! >>> >>> I am trying to catch up on posts and check in on how you are all >>> doing. >>> I have had a few bad months here in Melbourne, Florida. It started >>> with 3 Hurricanes plowing thru in September! Our house had some >>> damage, but compared to others we can't complain. Pool cage and >>> screen totalled and water damage to the ceiling in the dining > room. >>> >>> I was hopsitalized in October for emergency surgery when my >>> Infuse-a-port became septic with Serratia ( a bacterial > infection). >>> I had it removed and spent 5 days in the hospital. Then 3 weeks > later >>> I had another bout of Respiratory trouble and was back in the >>> hospital for another 5 days. I had 2 more surgeries while I was >>> admitted the second time. The surgeon tried to place a new port > but >>> couldn't get it placed properly without a fluroscopy machine > (special >>> x-ray machine), so after the first failed surgery, I had the port >>> placed in the Radiology Dept...........while I was AWAKE!!! The >>> Radiologists can't use genral anesthesia so the use local meds > like >>> novicaine. I am sitting here at the computer typing while I am >>> hooked up to the IV thru my port. I am recieving Fliuds and >>> Potassium. I have been fighting another Resp infection and as > usual >>> decompensated and began the cycylic vomiting routing once again! > I >>> am really getting sick of this.......but what choice do we have > but >>> to deal with the situtation we were given? Right? >>> >>> I have a question for you. Dr Cohen emailed me a week or so back >>> while I was in the hosptial. When I tried to reply, I got > an " invalid >>> emailed " and it bounced back to me. Does anyone have the new > email? >>> Should I call CCF and see if they will give it to me? I imagine > that >>> they just don't go giving out his email to everyone or he would > spend >>> his whole day replying to emails and never seeing patients. >>> If any of you have it and don't want to post it, you can email me > at >>> Goldenfamily5@a... >>> >>> Thanks, >>> Happy Holidays to all my Mitoldie Friends :-) >>> >>> >>> >>> >>> >>> >>> 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 December 22, 2004 Report Share Posted December 22, 2004 I've had some success faxing doctors, but it depends on the situation. If it is not *extremely* urgent, even regular mail might be an idea. Sometimes something written makes more of an impression than a phone call (and gives the other person time to respond, not just off the cuff). This also depends on how confidential your issues are, I think I lost all expectation of confidentiality after I gave birth to my first kid, lol. Take care, RH > >> > >> > >> I'm sorry your life has been so filled with medical stuff, along > > with the > >> hurricanes. > >> > >> I had the same thing happen when I e-mailed Dr. Cohen. I know he > > use to do > >> his e-mail from home and now that he has a family, probably would > > like some > >> time with them. > >> > >> laurie > >> > >>> From: " mitomomtoo " > >>> Reply-To: > >>> Date: Tue, 21 Dec 2004 12:50:29 -0000 > >>> To: > >>> Subject: Quick Update > >>> > >>> > >>> Hello Friends! > >>> > >>> I am trying to catch up on posts and check in on how you are all > >>> doing. > >>> I have had a few bad months here in Melbourne, Florida. It started > >>> with 3 Hurricanes plowing thru in September! Our house had some > >>> damage, but compared to others we can't complain. Pool cage and > >>> screen totalled and water damage to the ceiling in the dining > > room. > >>> > >>> I was hopsitalized in October for emergency surgery when my > >>> Infuse-a-port became septic with Serratia ( a bacterial > > infection). > >>> I had it removed and spent 5 days in the hospital. Then 3 weeks > > later > >>> I had another bout of Respiratory trouble and was back in the > >>> hospital for another 5 days. I had 2 more surgeries while I was > >>> admitted the second time. The surgeon tried to place a new port > > but > >>> couldn't get it placed properly without a fluroscopy machine > > (special > >>> x-ray machine), so after the first failed surgery, I had the port > >>> placed in the Radiology Dept...........while I was AWAKE!!! The > >>> Radiologists can't use genral anesthesia so the use local meds > > like > >>> novicaine. I am sitting here at the computer typing while I am > >>> hooked up to the IV thru my port. I am recieving Fliuds and > >>> Potassium. I have been fighting another Resp infection and as > > usual > >>> decompensated and began the cycylic vomiting routing once again! > > I > >>> am really getting sick of this.......but what choice do we have > > but > >>> to deal with the situtation we were given? Right? > >>> > >>> I have a question for you. Dr Cohen emailed me a week or so back > >>> while I was in the hosptial. When I tried to reply, I got > > an " invalid > >>> emailed " and it bounced back to me. Does anyone have the new > > email? > >>> Should I call CCF and see if they will give it to me? I imagine > > that > >>> they just don't go giving out his email to everyone or he would > > spend > >>> his whole day replying to emails and never seeing patients. > >>> If any of you have it and don't want to post it, you can email me > > at > >>> Goldenfamily5@a... > >>> > >>> Thanks, > >>> Happy Holidays to all my Mitoldie Friends :-) > >>> > >>> > >>> > >>> > >>> > >>> > >>> 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 December 22, 2004 Report Share Posted December 22, 2004 Hi everyone On Monday night, my husband, Rev. E. lin went to be with the Lord. He battled his mito for 6 plus years. We appreciate all the information that we have learned from reading your posts. When we could not travel, it kept us in touch with the new informtion that was being discovered. My daughter and I have requested that gifts be made to UMDF in lieu of flowers if people chose. Maybe we will be help someone else who is fighting this crazy disease or help with a cure. Thank you again for all of your support Sincerely Carol A. lin, wife of E. lin PS. Please drop my husband's name from the email list for a while. Trying to get everything squared away will take much of my emotional energy and time. I will still lift up prayers for those who struggle with this disease. Carol lin ohgminion wrote: > > I've had some success faxing doctors, but it depends on the > situation. If it is not *extremely* urgent, even regular mail might > be an idea. Sometimes something written makes more of an impression > than a phone call (and gives the other person time to respond, not > just off the cuff). This also depends on how confidential your > issues are, I think I lost all expectation of confidentiality after I > gave birth to my first kid, lol. > > Take care, > RH > > > > > >> > > >> > > >> I'm sorry your life has been so filled with medical stuff, along > > > with the > > >> hurricanes. > > >> > > >> I had the same thing happen when I e-mailed Dr. Cohen. I know he > > > use to do > > >> his e-mail from home and now that he has a family, probably would > > > like some > > >> time with them. > > >> > > >> laurie > > >> > > >>> From: " mitomomtoo " > > >>> Reply-To: > > >>> Date: Tue, 21 Dec 2004 12:50:29 -0000 > > >>> To: > > >>> Subject: Quick Update > > >>> > > >>> > > >>> Hello Friends! > > >>> > > >>> I am trying to catch up on posts and check in on how you are all > > >>> doing. > > >>> I have had a few bad months here in Melbourne, Florida. It > started > > >>> with 3 Hurricanes plowing thru in September! Our house had some > > >>> damage, but compared to others we can't complain. Pool cage and > > >>> screen totalled and water damage to the ceiling in the dining > > > room. > > >>> > > >>> I was hopsitalized in October for emergency surgery when my > > >>> Infuse-a-port became septic with Serratia ( a bacterial > > > infection). > > >>> I had it removed and spent 5 days in the hospital. Then 3 weeks > > > later > > >>> I had another bout of Respiratory trouble and was back in the > > >>> hospital for another 5 days. I had 2 more surgeries while I was > > >>> admitted the second time. The surgeon tried to place a new port > > > but > > >>> couldn't get it placed properly without a fluroscopy machine > > > (special > > >>> x-ray machine), so after the first failed surgery, I had the > port > > >>> placed in the Radiology Dept...........while I was AWAKE!!! The > > >>> Radiologists can't use genral anesthesia so the use local meds > > > like > > >>> novicaine. I am sitting here at the computer typing while I am > > >>> hooked up to the IV thru my port. I am recieving Fliuds and > > >>> Potassium. I have been fighting another Resp infection and as > > > usual > > >>> decompensated and began the cycylic vomiting routing once again! > > > I > > >>> am really getting sick of this.......but what choice do we have > > > but > > >>> to deal with the situtation we were given? Right? > > >>> > > >>> I have a question for you. Dr Cohen emailed me a week or so back > > >>> while I was in the hosptial. When I tried to reply, I got > > > an " invalid > > >>> emailed " and it bounced back to me. Does anyone have the new > > > email? > > >>> Should I call CCF and see if they will give it to me? I imagine > > > that > > >>> they just don't go giving out his email to everyone or he would > > > spend > > >>> his whole day replying to emails and never seeing patients. > > >>> If any of you have it and don't want to post it, you can email > me > > > at > > >>> Goldenfamily5@a... > > >>> > > >>> Thanks, > > >>> Happy Holidays to all my Mitoldie Friends :-) > > >>> > > >>> > > >>> > > >>> > > >>> > > >>> > > >>> 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 December 22, 2004 Report Share Posted December 22, 2004 Carol I am so saddened by your loss. I hope you feel you can come to us for support in the future. My thoughts and prayers will be with you and your family. Hugs, laurie > > Reply-To: > Date: Wed, 22 Dec 2004 18:39:42 -0500 > To: > Subject: Re: Quick Update > > Hi everyone > On Monday night, my husband, Rev. E. lin went to be with > the Lord. He battled his mito for 6 plus years. We appreciate all the > information that we have learned from reading your posts. When we could > not travel, it kept us in touch with the new informtion that was being > discovered. My daughter and I have requested that gifts be made to UMDF > in lieu of flowers if people chose. Maybe we will be help someone else > who is fighting this crazy disease or help with a cure. > Thank you again for all of your support > Sincerely > Carol A. lin, wife of E. lin > > PS. Please drop my husband's name from the email list for a while. > Trying to get everything squared away will take much of my emotional > energy and time. I will still lift up prayers for those who struggle > with this disease. Carol lin > > ohgminion wrote: > >> >> I've had some success faxing doctors, but it depends on the >> situation. If it is not *extremely* urgent, even regular mail might >> be an idea. Sometimes something written makes more of an impression >> than a phone call (and gives the other person time to respond, not >> just off the cuff). This also depends on how confidential your >> issues are, I think I lost all expectation of confidentiality after I >> gave birth to my first kid, lol. >> >> Take care, >> RH >> >> >> >>>>> >>>>> >>>>> I'm sorry your life has been so filled with medical stuff, along >>>> with the >>>>> hurricanes. >>>>> >>>>> I had the same thing happen when I e-mailed Dr. Cohen. I know he >>>> use to do >>>>> his e-mail from home and now that he has a family, probably would >>>> like some >>>>> time with them. >>>>> >>>>> laurie >>>>> >>>>>> From: " mitomomtoo " >>>>>> Reply-To: >>>>>> Date: Tue, 21 Dec 2004 12:50:29 -0000 >>>>>> To: >>>>>> Subject: Quick Update >>>>>> >>>>>> >>>>>> Hello Friends! >>>>>> >>>>>> I am trying to catch up on posts and check in on how you are all >>>>>> doing. >>>>>> I have had a few bad months here in Melbourne, Florida. It >> started >>>>>> with 3 Hurricanes plowing thru in September! Our house had some >>>>>> damage, but compared to others we can't complain. Pool cage and >>>>>> screen totalled and water damage to the ceiling in the dining >>>> room. >>>>>> >>>>>> I was hopsitalized in October for emergency surgery when my >>>>>> Infuse-a-port became septic with Serratia ( a bacterial >>>> infection). >>>>>> I had it removed and spent 5 days in the hospital. Then 3 weeks >>>> later >>>>>> I had another bout of Respiratory trouble and was back in the >>>>>> hospital for another 5 days. I had 2 more surgeries while I was >>>>>> admitted the second time. The surgeon tried to place a new port >>>> but >>>>>> couldn't get it placed properly without a fluroscopy machine >>>> (special >>>>>> x-ray machine), so after the first failed surgery, I had the >> port >>>>>> placed in the Radiology Dept...........while I was AWAKE!!! The >>>>>> Radiologists can't use genral anesthesia so the use local meds >>>> like >>>>>> novicaine. I am sitting here at the computer typing while I am >>>>>> hooked up to the IV thru my port. I am recieving Fliuds and >>>>>> Potassium. I have been fighting another Resp infection and as >>>> usual >>>>>> decompensated and began the cycylic vomiting routing once again! >>>> I >>>>>> am really getting sick of this.......but what choice do we have >>>> but >>>>>> to deal with the situtation we were given? Right? >>>>>> >>>>>> I have a question for you. Dr Cohen emailed me a week or so back >>>>>> while I was in the hosptial. When I tried to reply, I got >>>> an " invalid >>>>>> emailed " and it bounced back to me. Does anyone have the new >>>> email? >>>>>> Should I call CCF and see if they will give it to me? I imagine >>>> that >>>>>> they just don't go giving out his email to everyone or he would >>>> spend >>>>>> his whole day replying to emails and never seeing patients. >>>>>> If any of you have it and don't want to post it, you can email >> me >>>> at >>>>>> Goldenfamily5@a... >>>>>> >>>>>> Thanks, >>>>>> Happy Holidays to all my Mitoldie Friends :-) >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> 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 December 22, 2004 Report Share Posted December 22, 2004 I'm so sorry to hear your sad news. I hope when things settle down that you will post to let us know how you are doing. Maggie > > > >> > > > >> > > > >> I'm sorry your life has been so filled with medical stuff, along > > > > with the > > > >> hurricanes. > > > >> > > > >> I had the same thing happen when I e-mailed Dr. Cohen. I know he > > > > use to do > > > >> his e-mail from home and now that he has a family, probably would > > > > like some > > > >> time with them. > > > >> > > > >> laurie > > > >> > > > >>> From: " mitomomtoo " > > > >>> Reply-To: > > > >>> Date: Tue, 21 Dec 2004 12:50:29 -0000 > > > >>> To: > > > >>> Subject: Quick Update > > > >>> > > > >>> > > > >>> Hello Friends! > > > >>> > > > >>> I am trying to catch up on posts and check in on how you are all > > > >>> doing. > > > >>> I have had a few bad months here in Melbourne, Florida. It > > started > > > >>> with 3 Hurricanes plowing thru in September! Our house had some > > > >>> damage, but compared to others we can't complain. Pool cage and > > > >>> screen totalled and water damage to the ceiling in the dining > > > > room. > > > >>> > > > >>> I was hopsitalized in October for emergency surgery when my > > > >>> Infuse-a-port became septic with Serratia ( a bacterial > > > > infection). > > > >>> I had it removed and spent 5 days in the hospital. Then 3 weeks > > > > later > > > >>> I had another bout of Respiratory trouble and was back in the > > > >>> hospital for another 5 days. I had 2 more surgeries while I was > > > >>> admitted the second time. The surgeon tried to place a new port > > > > but > > > >>> couldn't get it placed properly without a fluroscopy machine > > > > (special > > > >>> x-ray machine), so after the first failed surgery, I had the > > port > > > >>> placed in the Radiology Dept...........while I was AWAKE!!! The > > > >>> Radiologists can't use genral anesthesia so the use local meds > > > > like > > > >>> novicaine. I am sitting here at the computer typing while I am > > > >>> hooked up to the IV thru my port. I am recieving Fliuds and > > > >>> Potassium. I have been fighting another Resp infection and as > > > > usual > > > >>> decompensated and began the cycylic vomiting routing once again! > > > > I > > > >>> am really getting sick of this.......but what choice do we have > > > > but > > > >>> to deal with the situtation we were given? Right? > > > >>> > > > >>> I have a question for you. Dr Cohen emailed me a week or so back > > > >>> while I was in the hosptial. When I tried to reply, I got > > > > an " invalid > > > >>> emailed " and it bounced back to me. Does anyone have the new > > > > email? > > > >>> Should I call CCF and see if they will give it to me? I imagine > > > > that > > > >>> they just don't go giving out his email to everyone or he would > > > > spend > > > >>> his whole day replying to emails and never seeing patients. > > > >>> If any of you have it and don't want to post it, you can email > > me > > > > at > > > >>> Goldenfamily5@a... > > > >>> > > > >>> Thanks, > > > >>> Happy Holidays to all my Mitoldie Friends :-) > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> > > > >>> 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...
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