Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 , Most all cell phones. But if you happen to be in an area served only by analog, GPS wont work. If you are going to get lost that often, well, get a BrailleNote with GPS like has. LOL Why dont you go to your Verizon store and ask to look at the LG VX4500? $40 with 2 year contract. *---* *---* *---* *---* *---* Never test the depth of the water with both feet. & Gimlet (Guide Dawggie) Portland, Oregon N24C 3G 8/2000 Hookup rlclark77@... http://home.comcast.net/~rlclark77/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2005 Report Share Posted February 10, 2005 Yup.. either program, when on telecoil, there is the buzz.. when in the house. I'll be out at my daughters house this weekend so I'll try the telecoil out there just to see if it buzzes at her house too. Pam (feeling like a detective!) Pam Well - I'm glad you didn't have the buzzing in the car but it would be nice to solve the buzzing in the house. You have two programs. Does it buzz on both of them? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 why don't you also look into " liver kampo by honso " i used it when i was on tx , slone kettering cancer hospital in new york has been studying the herb for liver cancer and hep c and japan uses it to treat hep c in japan you need a perscription for it in america you can buy it across the counter. i also used while on tx sam-e and of course milk thistle I have been virus free for 3 years now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Pam, There are several reasons why your biopsy may have gone from stage 2 to cirrhosis in only two years. First, the first biopsy may have been staged wrong. It can happen. When they take a sample of the liver they are taking only a minute portion which can sometimes cause things to be missed. Not common, but it does happen. Or, if different pathologists examined each specimen from your biopsies they may have used different scales or just had a different perception of what he/she saw. Treatment failure does not usually make the virus suddenly become much more distructive, although it does tend to make the viral load temporarily skyrocket when you stop, gradually dropping down to near pre-treatment levels. It's also possible that the interferon may have triggered or worsened underlying autoimmune hepatitis - again, not common, just another possibility. Also, it does appear that disease progression is not necessarily linear. In other words, just because it may take a person 15 years to go from stage 0 to stage 1 does not mean it will be 15 years to stage 2. It may only take 7 years for the same person to go from stage 1 to stage 2, and 5 years from stage 2 to stage 3. In fact, it does appear that the more advanced the disease the faster it tends to progress. Finally, the virus can progress at a different rate in each person. Just because it usually progresses at a slow rate doesn't mean it will be that way in everyone. It is possible for a person to contract HCV and progress to cirrhosis within only a few years. Thankfully that is very rare. Good luck, Claudine Pam <dixiewings2@...> wrote: Have you ever heard the virus coming back with a vengence. I did tx for 2 months..went down to 13,000count and had to quit because of sides. Two years later...I went from a Stage 2 to a Stage 4 (cirrhosis).....I don't drink or smoke.......take drugs of any kind....????........Pam ga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Pam, There are several reasons why your biopsy may have gone from stage 2 to cirrhosis in only two years. First, the first biopsy may have been staged wrong. It can happen. When they take a sample of the liver they are taking only a minute portion which can sometimes cause things to be missed. Not common, but it does happen. Or, if different pathologists examined each specimen from your biopsies they may have used different scales or just had a different perception of what he/she saw. Treatment failure does not usually make the virus suddenly become much more distructive, although it does tend to make the viral load temporarily skyrocket when you stop, gradually dropping down to near pre-treatment levels. It's also possible that the interferon may have triggered or worsened underlying autoimmune hepatitis - again, not common, just another possibility. Also, it does appear that disease progression is not necessarily linear. In other words, just because it may take a person 15 years to go from stage 0 to stage 1 does not mean it will be 15 years to stage 2. It may only take 7 years for the same person to go from stage 1 to stage 2, and 5 years from stage 2 to stage 3. In fact, it does appear that the more advanced the disease the faster it tends to progress. Finally, the virus can progress at a different rate in each person. Just because it usually progresses at a slow rate doesn't mean it will be that way in everyone. It is possible for a person to contract HCV and progress to cirrhosis within only a few years. Thankfully that is very rare. Good luck, Claudine Pam <dixiewings2@...> wrote: Have you ever heard the virus coming back with a vengence. I did tx for 2 months..went down to 13,000count and had to quit because of sides. Two years later...I went from a Stage 2 to a Stage 4 (cirrhosis).....I don't drink or smoke.......take drugs of any kind....????........Pam ga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 O Thanks for the answering Pam :-) D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2005 Report Share Posted November 3, 2005 Thanks the original! Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Pam, Back a way from the puter...lol Don't be sitting a long time with your legs down for,about a week.It's best to lay or keep legs elavated,like in a recliner. It won't kill you but,where the went in will heal a lot faster that way & not be so tender.I know ,I've been there 3 or 4 times.Take good care of yourself darlin. We need you. Love & Hugs, & her m m Honey's Sent: Tuesday, February 28, 2006 11:26 PM Subject: [ ] Hey . I have tried to quit off and on since my first ICU visit with pneumonia in 1992 but I just can't seem to get a handle on it. Sorry to hear that your honey is having some probs with that too but glad to hear that you are a non smoker. We all know we should quit but it is very difficult. The more I think about quitting the more I want to smoke :-( I used to listen to Deepak tapes all the time. Maybe I should dig them out :-) I will go back for a follow up in three weeks and see what my internist and gastro have decided to do. I am a problem child because I just have too many things wrong with me. Just glad to be alive TODAY! :-) Take care! Peace and Love Pam Re: Cardiac cath is over with somewhat good news! :-)Hi, Pam,Glad to hear things went relatively well. I agree with the quitting smoking. Do you smoke much?I have smoked off and on, but never heavily. I was one of those "ocassional" "non-addicted" smokers, where I could put it down at any time. My honey however has juvenile diabetes Type I, and he has been a pretty heavy smoker for 15 years. This I worry about, so I have completely stopped smoking and made my home non-smoking. Now he has to go outside to smoke when he's at home and he can't smoke at work, so he has cut back quite a lot. I hope to have him completely quit soon.I am not an expert on how to quit smoking, but I see that the benefits are quite encouraging. Have you started any attempt at making this change?I remember reading some helpful things about it by Deepak Chopra.Good luck, get lots of rest if you can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hiya, Pam, It is NOT petty to want to hear with your upgraded CI as well as you did the old version. I know it's difficult for you to get mapped, but obviously you need to get back there. Yes, there is an ajustment period, but if you aren't understanding much of anything, it's back to the drawing board, starting with the T's and C's. I'm wondering why you can't turn your settings down? Your volume and/or your sensitivity on the 3G should be set on 3 or 4 so you can do just that. In two weeks, seeing as how you are an experienced CI user, you actually may have already outgrown the parameters of the new map (assuming it WAS new and not just " dumped!). Call your audi, (if I remember correctly you said there is one in alaska now?) and get yourself over there for a re-mapping! And I bet any of the Cochlear reps would LOVE a trip to alaska to help you! Good luck! ) Jackie Implanted - right ear - Oct.2002 - Nucleus 24/3G Reimplanted - right ear - Jan.2005 - Nucleus 24C/3G Implanted - left ear - Sept.2005 - Nucleus-Freedom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 And Pam? You were NOT rude! LOL ) Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Jackie; Now we're getting the Pams on the list mixed up.. :-) The Pam in Alaska is not having probs with a CI upgrade.. but I did respond to another Pam somewhere else who is having a problem. (smiles) Pam 1 (or am I Pam2? How many Pams are on this list?) Re:Pam Hiya, Pam, It is NOT petty to want to hear with your upgraded CI as well as you did the old version. I know it's difficult for you to get mapped, but obviously you need to get back there. Yes, there is an ajustment period, but if you aren't understanding much of anything, it's back to the drawing board, starting with the T's and C's. I'm wondering why you can't turn your settings down? Your volume and/or your sensitivity on the 3G should be set on 3 or 4 so you can do just that. In two weeks, seeing as how you are an experienced CI user, you actually may have already outgrown the parameters of the new map (assuming it WAS new and not just " dumped!). Call your audi, (if I remember correctly you said there is one in alaska now?) and get yourself over there for a re-mapping! And I bet any of the Cochlear reps would LOVE a trip to alaska to help you! Good luck! ) Jackie Implanted - right ear - Oct.2002 - Nucleus 24/3G Reimplanted - right ear - Jan.2005 - Nucleus 24C/3G Implanted - left ear - Sept.2005 - Nucleus-Freedom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 OK, Pam in Alaska, thanks for setting me straight. Pam who is having trouble with her upgrade - good luck! LOL ) Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Jackie...I did take your advice along with the others who offered the same. I tried a different approach. i sometimes feel we walk on egg shells trying to be accomodating because we depend so much on that programmer. In this immediate area there are only 2 offices that do implants for adults and I am trying not to tic her off anymore than I have. Thank you for your insight and understanding. Pam from Dayton Re:Pam > >Hiya, Pam, > It is NOT petty to want to hear with your upgraded CI as well as you did >the old version. I know it's difficult for you to get mapped, but obviously >you need to get back there. Yes, there is an ajustment period, but if you >aren't understanding much of anything, it's back to the drawing board, starting >with the T's and C's. > I'm wondering why you can't turn your settings down? Your volume and/or >your sensitivity on the 3G should be set on 3 or 4 so you can do just that. >In two weeks, seeing as how you are an experienced CI user, you actually may >have already outgrown the parameters of the new map (assuming it WAS new and not >just " dumped!). Call your audi, (if I remember correctly you said there is >one in alaska now?) and get yourself over there for a re-mapping! And I bet >any of the Cochlear reps would LOVE a trip to alaska to help you! Good luck! > ) Jackie >Implanted - right ear - Oct.2002 - Nucleus 24/3G >Reimplanted - right ear - Jan.2005 - Nucleus 24C/3G >Implanted - left ear - Sept.2005 - Nucleus-Freedom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 Hi, Pam, I am fused T2 to L5, front and back in July 2002. I am 59. There are actually four rods in my back, two for T2 down to about L1 or so and two more that slant opposite of the top rods, and are at a sharper angle. Lj From: Pam <pamelicious2k4@...> Subject: Re: New to group - looking for advice and tips Scoliosis Treatment Date: Monday, September 1, 2008, 8:04 PM Lana ... I'm curious what levels you had fused, how long ago, and what the difference is in our ages. While I realize every surgeon is different, I had my bending/lifting/ twisting restrictions lifted at 3 months. I'm now close to 7 months post-op, and with my surgeon's blessing, I'm going back to competitive softball next weekend (easing back in with Sunday double headers), and I've never been told not to sleep on my stomach (I do for a while almost every night). Regards, Pam 40 yr old female, dx'd JIS & Boston braced @ age 10 Non-progressing ±53° right thoracic curve (surgery performed to address pain) ... Post-op curve ±20° Posterior fusion Feb. 5th, 2008, T4-L1 ... Darrell S. Hanson, M.D. - Baylor Orthopedics, Houston I had my surgery photographed, and will consider sharing on a case by case basis. Email me for details. View my x-ray timeline - Pre-op through Post-op <http://www.box. net/shared/ static/5kien12ko 4.jpg> Walked the AIDS Walk 2008 Houston 5K @ 33 days post op <http://www.box. net/shared/ static/u1g9l3fso s.JPG> ... and haven't regretted surgery for a minute! > > From: mollymol6 mollymol6 (DOT) com> > Subject: New to group - looking for advice and tips > Scoliosis Treatment > Date: Sunday, August 24, 2008, 8:05 AM > > I am 52 and over past 10 years my scoliosis has become much worse. > Wore a brace in High School but no other treatment as I also have > severe asthma. My S curve has greatly increased, pain as well and now > having lung and heart problems. Pnemonia twice in 6 months and heart > often races. > Looking for people in my age group and what options are out there. > If surgery - prep me - pain, recovery etc... How much improvement did > you have and were there complications? > Also interested in alternative treatment. Curious about rib > reconstruction too. Thank you in advance to anyone who responds. > Sara > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 Pam Your not wasting your time. You will never know how much good your doing, but your salvation to many of us. Thank you from me for 'wasting' your time. Ive learned alot. I can plan for the future better now because youve taken your time to educate everyone. I was just funnin about living with you. Your mom would freak out at just one look at me. Long hair and long beard. Old hippy guy, and I talk and dress funny too. lol I do need to get to someplace where there are good doctors tho. Im waiting on tx until some new drugs come out because Im not sick....yet. Until I have to make up my mind, Im educating myself, and your playing a huge part in that. That, and Im making friends, giving a bit of support, telling a joke or two, and just hanging out. I love the 'at home' feeling I get from this site. I think all of us do appreciate it. love don in kansas From: PeachStatePam <figment@...>Subject: [ ] Re: Don Date: Friday, January 23, 2009, 9:40 PM Hey Don. You don't ever have to leave me alone. Always ask questions! I just often wonder if anyone EVER goes to any of the links that I post. Sometimes I wonder if I am just wasting my time.Wish I had a house that you could come to. I am in my mom's house and the situation isn't the best. Grateful for the roof over my head but I haven't lived with her since the age of 18 for many good reasons! LOL Was really hard for me when treatment made me so sick that I couldn't go back to Colorado and go back to work :-( Life is full of changes!PeacePam>> Last question, then Ill leave you alone.> Can I come live at your house so I can get out of this god alful state and nearer to some real medical help? lol but kinda serious too.> love> don in kansas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 Wow, that’s great Pam! I hope that the psych will help – certainly sounds MUCH, MUCH better than the guy my mom is seeing. Sherry in PA From: [mailto: ] On Behalf Of Pam Horne Sent: Wednesday, August 26, 2009 7:26 AM Subject: Re: FED UP!! Hi SpiritDancer, We feel your pain. That's about all I can say except know that we are all in the same boat. When you need to let off steam, come here. We will understand. I did go to a psychiatrist yesterday and got a pleasant surprise, though. My PCP referred me to the psych, and I went with a lot of reservations, doubting that a psychiatrist would actually help me. But this doctor believes in holistic healing, achieving good health by good nutrition, and all sorts of other natural ways to become well again. I have a least a little hope right now. Don't know how long it will last though. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 I have two pts on lexipro and they have not swollen horrible. They are on a lasix too. That is a directic. But I check their feet and legs a lot and they seem to handle it okay. It sure would not hurt to try that. I would not be afraid of it. You are in my prayers Pam. Sorry you are having to go another round of tx. We can hope for good stuff to happen this round. Sending good vibes your way. Lots of prayers. Big hugs. Wishing you luck and happiness Cinder Check out datagrey's photos and profile! http://community.webshots.com/user/datagrey Find me on MySpace and be my friend. http://www.myspace.com/datagrey From: pam miller <pammango@...>Subject: Re: [ ] Telaprevir-Based Regimens in Study 107 Date: Friday, April 16, 2010, 5:56 AM I went to Hopkins Wed and asked about telaprevir to be added to my next round of tx. They said it was not for the 2-3 geno types. Boy I was crushed but they are throwing in a cholesteral med, they said for some reason their studies showed it helped. They ordered my meds (riba/interferon) but I need a CT scan and blood work done first.I'm sure I'll need to haggle with insurance about this second time around. They are bumping the riba up this time also. I still can't eat anything without getting sick and my right side pain is horrible.The sun is still setting off the porphyria.My hands are itchin like crazy. I've been l in the dumpsters lately so they also put me on lexipro, I haven't taken any yet I'd like to believe I'll snap out of it. I've been sober so dam long I really don't want that druggy feeling. Anyone take lexipro? I did hear it bloats you up. Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2010 Report Share Posted September 25, 2010 Hi Pam, Kaiser emails me all my lab results, so I have them. On my last gastro visit I had him print out my liver biopsy results so I can take it to my new doctor. I just want some kind of communication, I don't care if he sees me I just want to know what my blood work says. Cheryl In a message dated 9/25/2010 9:16:42 P.M. Eastern Daylight Time, pammango@... writes:  I have my doctors email all my lab results so I can print them for my records. Also I emailed with any questions or concerns, it's much easier for them to respond. I know I go crazy waiting and they should understand your anxiety. Pam Re: [ ] don in ks update - good and bad and TELAPREVIR Date: Friday, September 24, 2010, 3:01 PM Don, I am glad to hear about your liver, and hoping that your heart problems don't get any worse!! Sending love your way!! Huggsss Cheryl In a message dated 9/24/2010 3:34:30 P.M. Eastern Daylight Time, ludichrist2000@... writes: Hi everybody Just got home from my Gastro-doc appmt. I have been sooooo worried about this dreaded day. Didnt hardly sleep last night any at all. Well, heres the bad news first. My G-doc wont let me do HCV TX for at least another year. - wah - yea - wah - yea - wah - yea..........LOL It seems too, that my heart-doc wants me to wait awhile longer due to something going on with my heart still.....the CHF [congestive heart failure thing]. I thought that my heart had healed because Ive been off my heart meds for 6 months now, but I guess not yet. - BUT - heres the good news: Since my labs are staying normal, few HCV related health issues, and my VL is staying below 2 million, my gastro-doc isnt even concerned with a biopsy yet, much less HCV TX. She told me that I have probably had HCV for decades, and that I am in that small percentage of people who may never have to do HCV TX, and certainly not any time soon. Now that surprised me.!!!!!!!!!! I sure didnt expect that prognosis. She asked me all sorts of questions like health issues that I might have been experiancing with HCV, then checked my eyes, teeth, tapped on me, listened to my chest, looked down my throat, and a few other things like my hands and feet, bloating, swelling, skin stuff and so forth. - We discussed my fatigue. She said it could be the HCV or the Fibromyalgia, that theres no way to really be sure without a liver biopsy, and she doesnt want to do that yet. - We discussed the Fibroscan vs the needle biopsy, and she said she doesnt think that the Fibroscan is as good as a BX. [i agree.] - We discussed memory issues [ammonia buildup from failing liver], and I told her I forget to remember. LOL :-) - We discussed my diet, lifestyle, and the sups that I take. She told me to stop smoking, but otherwise I am doing really good taking care of my health at home. - And we talked about my fear of stressing my liver with prescription meds. She said that I probably dont have to worry about over doing my scripts because my liver seems to be doing so good. - We discussed Telaprevir [Protease Inhibitor], and she doesnt think that its going to be approved for at least another year, possibly longer....this according to the company rep she talks to. She said that it probably wont be fast tracked, and everybody is waiting on the AMA for approval. I thought that the phase 3 clinical trials were already over, but she said that they arent just yet. Perhaps by the end of the year. - We discussed why she wouldnt recommend HCV TX yet for me, over and above my labs. She said that treatment is a balance between the sides, complications, and the health benefits to someone. Seeing that I was doing VERY good liver-wise, she thought that for right now, I should wait. She also said that there is no reason to do a liver biopsy yet because I am not displaying any signs that one is required yet [labs, sides, etc]. - We discussed a lot of other stuff too, like the groups like the Warriors that I am involved with, getting a support group going in NC Kansas, starting a 1-800 phone support thing, and lots more Advocacy stuff. She gave me some info that I have to explore yet, and later on I will post about it. She was very impressed that I am so active, doing daily research, and trying to help other Heppers. I gave her the HCV Links Library URL that I am trying to build for all of us, and she is going to help me with it as she can. So, I guess my heart sucks, but my liver is doing pretty good....so far....40 years and counting. All in all I am most amazed. I went in all ready to get set up for my liver biopsy, and a treatment dates. I was all ready with questions about assisted care living facilitys, and/or home health nurses, so that I can stay on top of my meds and shots [because my memory is so bad, and the psych meds I am on mess me up]. I am both happy and sad. I am happy that my body still has a lot of fight in it yet, and is beating back the HCV. I am sad because I am facing yet another year of this bug in my body. I want to be free of the HCV, once and for all. I love all you folks, and Im glad your there for me too. Im going to take a nap now because my brain is fried. Talk to you all a little later on. love don in ks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2010 Report Share Posted October 12, 2010 Pam, What multi minerals, vitamin and yeast control did you use.... How old was your Child #1 when you started. I ask, because my child just turned 9. He is great except for academic, stimming, and social, abtstract thinking, pragmatics, etc.....hum...guess he is NOT great ;( I am starting this weekend. Did you use ALA AND DMSA. I know has lead, as we did EDTA IV infusions for a year and got tons of lead. Thanks so much, would love to talk to you From: dmsnv <dmsnv@...> Subject: [ ] Re: Statistic on Chelation Date: Tuesday, October 12, 2010, 4:14 AM  Many thanks for your story, Pam! Somehow I overlooked your post and didn't reply to it immediately. I am reading Andy's books, still parents' encouragement is important. Asem > > I have never tried IV Chelation, but have a basic understanding of biochem and metabolic processes. With child #1, I did chelation for 1.5 years, every week, ACP. This protocol ultimately recovered my child. I don't deny it's hard to get up at night, but as you slowly see those new gains, that's incentive enough to keep going. My child went from a " walking coma " to a smart, intuitive, funny, abstract thinking and highly social child. He is in mainstream school without an aid doing age appropriate work. > > Child #2, I did the same things. He got worse and I couldn't understand. I even increased the yeast protocol and he kept going downhill. Come to find out he had PANDAS. Now we're treating PANDAS successfully with antibiotics (still has a long way to go). Started doing the ACP and making some great gains with this child. My point of all this is before you start any kind of protocol, please please take the time to understand what you are doing biochemically to the body and the affinity of toxic metals to the CNS. The ACP has been phenomenal for both my kids and I wouldn't even consider doing it any other way. AC may appear a little harsh in his responses, but he knows the potential damage you are about to cause in your already toxic child. The fact that he is responding is very appreciated here because I always learn from his posts, as well as some of the other moms/dads. > > I love it that we have our child back, and anxiously awaiting our #2 child's recovery. I pray and hope the rest of the struggling parents out there get their child back as well. > > Also, it wouldn't be a bad idea to check out Andy's books. I haven't read every page, but they are great reference books which I've gone back to over and over when I had questions or needed more info. > > Pam > > Pam > Quote Link to comment Share on other sites More sharing options...
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