Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 SteveThink I will light a candle for you tonight. That way you will stay in my prayers and my heart. I know it's not nice to think of a bag; but, at least you will have your life. A friend of mine has had a bag for about 18 months now. They did try to put everything back together; but, then a horrible infection gets in there.Gloria Hello to all, It has been awhile now since I have checked in with the group, so I am taking this opportunity to talk about my developments. This is about my problem I developed concerning blood in my urine. I don't know if this is related to the HCV or not but the last I reported was that I had a scope done in my bladder and they found a tumor that was bleeding. So I had a surgery done just this past Friday at the Mayo Clinic in MN. As I write this, on Monday morning, I am still sitting on my hospital bed, waiting to get checked out. We have had a pretty major winter storm come through and I have been stuck here because of the weather. I think they got around 17 inches of snow on Sat. Anyway, when they did the surgery, they found a second small tumor and they removed that along with the first one. they also put a stint in the opening from the kidney to the bladder(temporary) and I am waiting for the pathology report to come back to see how much cancer there was and if they will have to do more. The urologist seems to be leaning toward total removal of my bladder with a stoma put in and an external bag...for the rest of my life!!!! I am trying to deal with that right now and am hoping for some less extreme solutions. The Hepatology team is also going to have a say in what happens, so all I can do is wait and take it day at a time. I will try to post now and again to let ya'll know what happens. thanks for listening! RHSteve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Thank you so much Gloria, I can use all the prayers I can get, this is not good news for me at all, but you are right, at least I will still be alive and here with the rest of you. I have heard about the infections and complications that can happen with this cancer. I will survive and live to see another day J RHSteve From: [mailto: ] On Behalf Of Gloria Sent: Monday, December 13, 2010 9:46 PM Subject: Re: [ ] Update SteveThink I will light a candle for you tonight. That way you will stay in my prayers and my heart. I know it's not nice to think of a bag; but, at least you will have your life. A friend of mine has had a bag for about 18 months now. They did try to put everything back together; but, then a horrible infection gets in there.Gloria Hello to all,It has been awhile now since I have checked in with the group, so I am taking this opportunity to talk about my developments. This is about my problem I developed concerning blood in my urine. I don't know if this is related to the HCV or not but the last I reported was that I had a scope done in my bladder and they found a tumor that was bleeding. So I had a surgery done just this past Friday at the Mayo Clinic in MN. As I write this, on Monday morning, I am still sitting on my hospital bed, waiting to get checked out. We have had a pretty major winter storm come through and I have been stuck here because of the weather. I think they got around 17 inches of snow on Sat. Anyway, when they did the surgery, they found a second small tumor and they removed that along with the first one. they also put a stint in the opening from the kidney to the bladder(temporary) and I am waiting for the pathology report to come back to see how much cancer there was and if they will have to do more. The urologist seems to be leaning toward total removal of my bladder with a stoma put in and an external bag...for the rest of my life!!!! I am trying to deal with that right now and am hoping for some less extreme solutions. The Hepatology team is also going to have a say in what happens, so all I can do is wait and take it day at a time. I will try to post now and again to let ya'll know what happens.thanks for listening!RHSteve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Unfortunately, I've stopped going to at least two endos with this same attitude. By the way, I never talk to the nurse for her to relay to the doctor. It's like playing telephone. The message never gets relayed right going in or going out, and the nurses are really not authorized to give any advice. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Update hypothyroidism Date: Monday, December 13, 2010, 6:16 AM Last week when I told the endo's nurse about my elevated heart rate, and the hair loss aggravated by Levothyroxin, she said she would talk with the doctor and get back with me. She called this morning and said she told the doctor about the hair loss and my RESTING heart rate being 145 (I told her it was 100 and 145 while exercising), and he said to keep taking the Levothyroxin! She said Armour would be as bad. I asked if there was anything else, thinking of what you take Roni, and she said no, nothing. When I asked again if the doctor would test FT3, FT4, and reverse T3, in case I have Hashimoto's, an adrenal problem, or someing else, before I could get the sentence out, she told me I'd have to make another appointment. I told her I didn't want to be rude, but have been making appointments since August, (during this sentence she interrupted and said she didn't want to be rude either, but she was), and still don't know what's wrong. Then I asked about the vitamin D, and she said that's not back, because it was sent to an outside lab. So that's it. My endo is refusing to do anything else until after the biopsy in January. Thanks to all of you for being here, and for caring. My doctor couldn't be any more obvious about the fact that he doesn't. I feel like I'm up againt a brick wall. If it weren't for the kind people here, and the fact that I have an appointment at the Mayo Clinic on the 28th, I'd be in tears. I'm not though, because I'm thankful for all the support and information shared here, and al sohopeful there will be a more thorough evaluation in ville. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 Hi Roni, I'm sorry you had doctors like that. I didn't want to talk with the nurse, but apparently doctors don't call patients back anymore. At least mine don't. For even one question they want patients to make another appointment, which can take weeks or months, depending on the doctor. Barb Update hypothyroidism Date: Monday, December 13, 2010, 6:16 AM Last week when I told the endo's nurse about my elevated heart rate, and the hair loss aggravated by Levothyroxin, she said she would talk with the doctor and get back with me. She called this morning and said she told the doctor about the hair loss and my RESTING heart rate being 145 (I told her it was 100 and 145 while exercising), and he said to keep taking the Levothyroxin! She said Armour would be as bad. I asked if there was anything else, thinking of what you take Roni, and she said no, nothing. When I asked again if the doctor would test FT3, FT4, and reverse T3, in case I have Hashimoto's, an adrenal problem, or someing else, before I could get the sentence out, she told me I'd have to make another appointment. I told her I didn't want to be rude, but have been making appointments since August, (during this sentence she interrupted and said she didn't want to be rude either, but she was), and still don't know what's wrong. Then I asked about the vitamin D, and she said that's not back, because it was sent to an outside lab. So that's it. My endo is refusing to do anything else until after the biopsy in January. Thanks to all of you for being here, and for caring. My doctor couldn't be any more obvious about the fact that he doesn't. I feel like I'm up againt a brick wall. If it weren't for the kind people here, and the fact that I have an appointment at the Mayo Clinic on the 28th, I'd be in tears. I'm not though, because I'm thankful for all the support and information shared here, and al sohopeful there will be a more thorough evaluation in ville. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2010 Report Share Posted December 13, 2010 I agree, this is all totally exhausting, when it could be so simple. Their procedures tend to give us more stress, which makes whatever condition we have worse. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Update hypothyroidism Date: Monday, December 13, 2010, 6:16 AM Last week when I told the endo's nurse about my elevated heart rate, and the hair loss aggravated by Levothyroxin, she said she would talk with the doctor and get back with me. She called this morning and said she told the doctor about the hair loss and my RESTING heart rate being 145 (I told her it was 100 and 145 while exercising), and he said to keep taking the Levothyroxin! She said Armour would be as bad. I asked if there was anything else, thinking of what you take Roni, and she said no, nothing. When I asked again if the doctor would test FT3, FT4, and reverse T3, in case I have Hashimoto's, an adrenal problem, or someing else, before I could get the sentence out, she told me I'd have to make another appointment. I told her I didn't want to be rude, but have been making appointments since August, (during this sentence she interrupted and said she didn't want to be rude either, but she was), and still don't know what's wrong. Then I asked about the vitamin D, and she said that's not back, because it was sent to an outside lab. So that's it. My endo is refusing to do anything else until after the biopsy in January. Thanks to all of you for being here, and for caring. My doctor couldn't be any more obvious about the fact that he doesn't. I feel like I'm up againt a brick wall. If it weren't for the kind people here, and the fact that I have an appointment at the Mayo Clinic on the 28th, I'd be in tears. I'm not though, because I'm thankful for all the support and information shared here, and al sohopeful there will be a more thorough evaluation in ville. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2011 Report Share Posted January 9, 2011 Jon,When I first started treatment my insurance was amazing. I picked up my Interferon and Ribavirin and realized that those two prescriptions were almost 10 thousand a month. My co-pay was a total of $60. 50 for the injectable and 10 for the pills. Then, 24 weeks later, when I went from short term disability to long term disability my insurance changed from a HMO to a PPO. My cost on the drugs was about 700 bucks. I called the doctor, they called the drug rep for Schering (back then they made both drugs) and Schering provided my drugs for the last 24 weeks of treatment. Unfortunately this treatment is very expensive even with insurance. I have never found insurance companies to be flexible but it's worth a try. I think the doctor going thru the drug company will get you better results. Good luck. Hepatologists are the cream of the crop when it comes to Hep C treatment. You are in the best of hands. My doc is also a Hepatologist and has the same opinion of alternative protocols and products. I would trust your doctor, if he says no to the supplements, I'd avoid them. Some of them can have adverse reactions when mixed with these two powerful drugs. Better safe than sorry on that part. Hope that helps some..TeriOn Sun, Jan 9, 2011 at 1:17 PM, groundzero81876 <baggio@...> wrote: I got my Pegasys prescription last Tuesday and went to the pharmacy to fill it. Let's just say that I was in for a surprise. The 4 pack cost $4800 and my insurance copay was $600. I can't pay $600 a month for 48 weeks. That just isn't happening. I talked to my doctor and they are going to try and haggle with the insurance company. They said that sometimes they will work with people. As they explained it, pay a modest amount now or 1 million for a liver transplant later. She said if that doesn't work they can try to get the drug company to chip in based on income. I'm not impoverished, but I can't absorb these kind of fees. I guess it will work out some way. I suppose if I have to go bankrupt paying for treatment I will. The alternative doesn't have much appeal if I have to suffer with bad health. My doctor is one of only six Heptologists in Ohio, so you would think that he would know his business. I was a bit disappointed to discover that he doesn't recommend any alternative/supplements to be used along with Pegasys/Riba. I'm going to take modest amounts of the following and just let him know what I'm doing: Vitamin, no iron Milk Thistle Fish Oil Alpha Lipoic Acid Coenzyme Q-10 Probiotic Acidophilus In small amounts I don't see how it could do any harm and there is tons of information that indicates it could help. Would love to have some feedback on what you folks think. Also, would anyone know of any HepC support groups in Central Ohio? Thanks, Jon in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 That whole passing out part scares me Trudy... I am glad your doctors are on top of things... I fell from being weak on treatment... not from lack of balance just I'd lose my legs. They will figure it out.. I'm sure they will. Hugs,TeriOn Fri, Feb 18, 2011 at 11:35 PM, trudykinsey@... <trudykinsey@...> wrote: Well oncologist is alarmed about something. I didn't ask ;don't want to know ahead of time. So he tried to set up all my dr visits in one day. Well, I see Nuero on Tuesday, Gastro on 4th for viral load. Conference call Nuero & GPs Nurse on Tuesday. The past couple of days my legs have felt heavy and very fatigued, more than rest of me. Today while I was walking thru the kitchen, I passed out. Very sudden and only lasted,maybe, 2 seconds. I " came to " as I was hitting the floor, arms out streched. No I hadn't just stood up or any other trigger that I know of. What I didn't know is that a person can Completely! pass out and come to in that short of time! It made me a bit scared and cautious for a while. Oh well, tx / and after tx, makes life " interesting " !! Ya know, Tuesday will probably be a wild-goose chase. I think I get passed around all my specalist for liabilty reasons. They are making sure they aren't at fault for not following up with any abnormalites. Let the other guy handle me!! .. " A well-behaved woman never made history " Mae West http://facebook.com/people/andTrudy-Kinsey/1340460877 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Yeah, my legs just buckle on me. Sometimes I stand up but my legs don't. That passing out shook me a little. If I didn't already have an appt with Nureo Dr , I would be making one! But quess what I did today ?? I drove to the town about 30 mins away where mail is and my pharmacy !! Yea! First time out alone in at least 6 months!!" A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Feb 19, 2011, at 2:34 PM, Theresa Gottlieb <theresagottlieb@...> wrote: That whole passing out part scares me Trudy... I am glad your doctors are on top of things... I fell from being weak on treatment... not from lack of balance just I'd lose my legs. They will figure it out.. I'm sure they will. Hugs,TeriOn Fri, Feb 18, 2011 at 11:35 PM, trudykinsey@... <trudykinsey@...> wrote: Well oncologist is alarmed about something. I didn't ask ;don't want to know ahead of time. So he tried to set up all my dr visits in one day. Well, I see Nuero on Tuesday, Gastro on 4th for viral load. Conference call Nuero & GPs Nurse on Tuesday. The past couple of days my legs have felt heavy and very fatigued, more than rest of me. Today while I was walking thru the kitchen, I passed out. Very sudden and only lasted,maybe, 2 seconds. I " came to " as I was hitting the floor, arms out streched. No I hadn't just stood up or any other trigger that I know of. What I didn't know is that a person can Completely! pass out and come to in that short of time! It made me a bit scared and cautious for a while. Oh well, tx / and after tx, makes life "interesting "!! Ya know, Tuesday will probably be a wild-goose chase. I think I get passed around all my specalist for liabilty reasons. They are making sure they aren't at fault for not following up with any abnormalites. Let the other guy handle me!! .. " A well-behaved woman never made history " Mae West http://facebook.com/people/andTrudy-Kinsey/1340460877 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 And you remembered how to make the truck " GO " too?!!! Awesome.On Sat, Feb 19, 2011 at 8:39 PM, trudykinsey@... <trudykinsey@...> wrote: Yeah, my legs just buckle on me. Sometimes I stand up but my legs don't. That passing out shook me a little. If I didn't already have an appt with Nureo Dr , I would be making one! But quess what I did today ?? I drove to the town about 30 mins away where mail is and my pharmacy !! Yea! First time out alone in at least 6 months!! " A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Feb 19, 2011, at 2:34 PM, Theresa Gottlieb <theresagottlieb@...> wrote: That whole passing out part scares me Trudy... I am glad your doctors are on top of things... I fell from being weak on treatment... not from lack of balance just I'd lose my legs. They will figure it out.. I'm sure they will. Hugs,TeriOn Fri, Feb 18, 2011 at 11:35 PM, trudykinsey@... <trudykinsey@...> wrote: Well oncologist is alarmed about something. I didn't ask ;don't want to know ahead of time. So he tried to set up all my dr visits in one day. Well, I see Nuero on Tuesday, Gastro on 4th for viral load. Conference call Nuero & GPs Nurse on Tuesday. The past couple of days my legs have felt heavy and very fatigued, more than rest of me. Today while I was walking thru the kitchen, I passed out. Very sudden and only lasted,maybe, 2 seconds. I " came to " as I was hitting the floor, arms out streched. No I hadn't just stood up or any other trigger that I know of. What I didn't know is that a person can Completely! pass out and come to in that short of time! It made me a bit scared and cautious for a while. Oh well, tx / and after tx, makes life " interesting " !! Ya know, Tuesday will probably be a wild-goose chase. I think I get passed around all my specalist for liabilty reasons. They are making sure they aren't at fault for not following up with any abnormalites. Let the other guy handle me!! .. " A well-behaved woman never made history " Mae West http://facebook.com/people/andTrudy-Kinsey/1340460877 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 Yep, both forward and back .. Darn, I hope I did each at the appropriate times..." A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Feb 19, 2011, at 10:19 PM, Theresa Gottlieb <theresagottlieb@...> wrote: And you remembered how to make the truck "GO" too?!!! Awesome.On Sat, Feb 19, 2011 at 8:39 PM, trudykinsey@... <trudykinsey@...> wrote: Yeah, my legs just buckle on me. Sometimes I stand up but my legs don't. That passing out shook me a little. If I didn't already have an appt with Nureo Dr , I would be making one! But quess what I did today ?? I drove to the town about 30 mins away where mail is and my pharmacy !! Yea! First time out alone in at least 6 months!! " A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Feb 19, 2011, at 2:34 PM, Theresa Gottlieb <theresagottlieb@...> wrote: That whole passing out part scares me Trudy... I am glad your doctors are on top of things... I fell from being weak on treatment... not from lack of balance just I'd lose my legs. They will figure it out.. I'm sure they will. Hugs,TeriOn Fri, Feb 18, 2011 at 11:35 PM, trudykinsey@... <trudykinsey@...> wrote: Well oncologist is alarmed about something. I didn't ask ;don't want to know ahead of time. So he tried to set up all my dr visits in one day. Well, I see Nuero on Tuesday, Gastro on 4th for viral load. Conference call Nuero & GPs Nurse on Tuesday. The past couple of days my legs have felt heavy and very fatigued, more than rest of me. Today while I was walking thru the kitchen, I passed out. Very sudden and only lasted,maybe, 2 seconds. I " came to " as I was hitting the floor, arms out streched. No I hadn't just stood up or any other trigger that I know of. What I didn't know is that a person can Completely! pass out and come to in that short of time! It made me a bit scared and cautious for a while. Oh well, tx / and after tx, makes life "interesting "!! Ya know, Tuesday will probably be a wild-goose chase. I think I get passed around all my specalist for liabilty reasons. They are making sure they aren't at fault for not following up with any abnormalites. Let the other guy handle me!! .. " A well-behaved woman never made history " Mae West http://facebook.com/people/andTrudy-Kinsey/1340460877 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2011 Report Share Posted February 20, 2011 LOLOn Sat, Feb 19, 2011 at 10:34 PM, trudykinsey@... <trudykinsey@...> wrote: Yep, both forward and back .. Darn, I hope I did each at the appropriate times... " A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Feb 19, 2011, at 10:19 PM, Theresa Gottlieb <theresagottlieb@...> wrote: And you remembered how to make the truck " GO " too?!!! Awesome.On Sat, Feb 19, 2011 at 8:39 PM, trudykinsey@... <trudykinsey@...> wrote: Yeah, my legs just buckle on me. Sometimes I stand up but my legs don't. That passing out shook me a little. If I didn't already have an appt with Nureo Dr , I would be making one! But quess what I did today ?? I drove to the town about 30 mins away where mail is and my pharmacy !! Yea! First time out alone in at least 6 months!! " A well-behaved woman never made history " Mae Westhttp://facebook.com/people/andTrudy-Kinsey/1340460877 On Feb 19, 2011, at 2:34 PM, Theresa Gottlieb <theresagottlieb@...> wrote: That whole passing out part scares me Trudy... I am glad your doctors are on top of things... I fell from being weak on treatment... not from lack of balance just I'd lose my legs. They will figure it out.. I'm sure they will. Hugs,TeriOn Fri, Feb 18, 2011 at 11:35 PM, trudykinsey@... <trudykinsey@...> wrote: Well oncologist is alarmed about something. I didn't ask ;don't want to know ahead of time. So he tried to set up all my dr visits in one day. Well, I see Nuero on Tuesday, Gastro on 4th for viral load. Conference call Nuero & GPs Nurse on Tuesday. The past couple of days my legs have felt heavy and very fatigued, more than rest of me. Today while I was walking thru the kitchen, I passed out. Very sudden and only lasted,maybe, 2 seconds. I " came to " as I was hitting the floor, arms out streched. No I hadn't just stood up or any other trigger that I know of. What I didn't know is that a person can Completely! pass out and come to in that short of time! It made me a bit scared and cautious for a while. Oh well, tx / and after tx, makes life " interesting " !! Ya know, Tuesday will probably be a wild-goose chase. I think I get passed around all my specalist for liabilty reasons. They are making sure they aren't at fault for not following up with any abnormalites. Let the other guy handle me!! .. " A well-behaved woman never made history " Mae West http://facebook.com/people/andTrudy-Kinsey/1340460877 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Well I had to finally give in and have my tooth removed. Since then My MD added Amoxicillin to the doxicycline and I am finally over the joint and tooth pain. I think the total stress of the failed root canal with all the constant pain brought on the severe joint pain associated with my recently diagnosed lymes. I have drastically changed my diet and cut out most carbo's and sugars. This has helped me take off about 10 lbs and encouraged me to eat healthier. I currently take a vitamin regimin of vitamin C, osteobyflex, B complex and ginko bioblo and for the moment I guess I am in remission. From all of the research I have done it seems the lymes buried in the tooth I had the root canal on and was brought out by the stress of the fractured tooth. The antibiotics made me so ill but I am glad I stuck it out and got through this. Best advice I could give as a newbie would be to walk away from stress and know your limit as I sincerely believe the disease it triggered from this. Good luck to all my fellow lymes patients, I look forward to further informative research to help put an end to the suffering. Peace out and Happy Easter. Donna Long Island NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2011 Report Share Posted April 23, 2011 I hope you are using probiotics while taking the anitbiotics. Also I take Milk Thistle to support my liver while on the antibiotics. > > Well I had to finally give in and have my tooth removed. Since then My MD added Amoxicillin to the doxicycline and I am finally over the joint and tooth pain. I think the total stress of the failed root canal with all the constant pain brought on the severe joint pain associated with my recently diagnosed lymes. I have drastically changed my diet and cut out most carbo's and sugars. This has helped me take off about 10 lbs and encouraged me to eat healthier. I currently take a vitamin regimin of vitamin C, osteobyflex, B complex and ginko bioblo and for the moment I guess I am in remission. From all of the research I have done it seems the lymes buried in the tooth I had the root canal on and was brought out by the stress of the fractured tooth. The antibiotics made me so ill but I am glad I stuck it out and got through this. Best advice I could give as a newbie would be to walk away from stress and know your limit as I sincerely believe the disease it triggered from this. Good luck to all my fellow lymes patients, I look forward to further informative research to help put an end to the suffering. > Peace out and Happy Easter. > Donna > Long Island NY > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.