Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Thanks . Its such a hard decision to make. I will be praying for Miranda tom. as she has her port placed. I hope its quick and uneventful and she does well. Keep us posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Thanks . Its such a hard decision to make. I will be praying for Miranda tom. as she has her port placed. I hope its quick and uneventful and she does well. Keep us posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Thanks . Its such a hard decision to make. I will be praying for Miranda tom. as she has her port placed. I hope its quick and uneventful and she does well. Keep us posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Hi , I am glad you finally got answers from Dr Cohen. We were also having a bit of the same dilemma in regards to the port vs Broviac with Miranda. Her Dr also says he see's a higher infection rate with Broviacs over ports.. But he also said if we had a crystal ball to see the future to know how much longer Miranda will be on the TPN, that would maybe make a difference in his decision. We were also told the port has to be reaccessed every 7 days. I wonder if what Dr Cohen was talking about was that if its not accessed it needs to be flushed once a month?? Miranda's first port was placed when she was 2 years old and lasted 4 years! It was working fine when it was pulled but was infected. Her second one lasted only 6 weeks as the infection ws not cleared when it was placed. She is having number three placed tomorrow. It will be done in and out surgery and will be home the same day....hopefully. Good Luck to you. -- update Dr. Cohen called this morning and spoke with my mom concerning our list of questions. He said he see's the IV Carnitine being long term. He said no to a broviac, but yes to a port. Sooo you know now that I need to hear from all you port experts. (Dawn I know you are cheering about that one. hehe) He said I would have more freedom with a port although he knows I'm not active and out swimming etc. Also he is concerned about my infection rate with a broviac since I have an immune deficiency. He said I would need to discuss this with my surgeon and together we could decide what would be best for me. He said the port would last 3 yrs and that we could leave the needle in it for 1 month. I need come clarification on that one please. He said that I could use Dr. DiFiore if I want, but that there are other surgeons in his group that are good and he reccomended a Dr. as well. Anyone used him? As far as how treatment would change from having this done he said that was a very gray area. He just doesn't know. He said you could get nothing from it, negative results, or possbily find something. The time frame to get resutlts will be 2-10 days and then 3 weeks for the rest. If something needed to be sent off then thats when you get into the months of waiting. CAT testing is an enzyme antigen test that measures how the kidneys are reabsorbing the carnitine. He wants me to stay a few days after the procedures. He said there was no way he was sending me back to KY for awhile. LOL He is SOOO right. My mom was in total agreement. He said if need be he will admit me to the hospital. All my meds have to be stopped 2 weeks in advance. (Malisa I hope that answers your question. ) My testing from Dr. Rhead should be back soon, but he didn't know when. He was very upfront in saying that I didn't need to rush and decide about this. And even after I'm scheduled if I get cold feet it's fine to cancel because there are 10 people on the waiting list. Fran is going to call us with the dates. He is having me set up for a pre-op consult with the surgeon and anesthesiologist as well. Would you think that would be the day before?? He wants me to have another EKG and Echo done beforehand as well. Shoo..I hope I remembered to tell you everything. I feel some what better..but still not certain as to what I should do. Please keep praying. Thanks for helping me out again. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2003 Report Share Posted July 24, 2003 Hi , I am glad you finally got answers from Dr Cohen. We were also having a bit of the same dilemma in regards to the port vs Broviac with Miranda. Her Dr also says he see's a higher infection rate with Broviacs over ports.. But he also said if we had a crystal ball to see the future to know how much longer Miranda will be on the TPN, that would maybe make a difference in his decision. We were also told the port has to be reaccessed every 7 days. I wonder if what Dr Cohen was talking about was that if its not accessed it needs to be flushed once a month?? Miranda's first port was placed when she was 2 years old and lasted 4 years! It was working fine when it was pulled but was infected. Her second one lasted only 6 weeks as the infection ws not cleared when it was placed. She is having number three placed tomorrow. It will be done in and out surgery and will be home the same day....hopefully. Good Luck to you. -- update Dr. Cohen called this morning and spoke with my mom concerning our list of questions. He said he see's the IV Carnitine being long term. He said no to a broviac, but yes to a port. Sooo you know now that I need to hear from all you port experts. (Dawn I know you are cheering about that one. hehe) He said I would have more freedom with a port although he knows I'm not active and out swimming etc. Also he is concerned about my infection rate with a broviac since I have an immune deficiency. He said I would need to discuss this with my surgeon and together we could decide what would be best for me. He said the port would last 3 yrs and that we could leave the needle in it for 1 month. I need come clarification on that one please. He said that I could use Dr. DiFiore if I want, but that there are other surgeons in his group that are good and he reccomended a Dr. as well. Anyone used him? As far as how treatment would change from having this done he said that was a very gray area. He just doesn't know. He said you could get nothing from it, negative results, or possbily find something. The time frame to get resutlts will be 2-10 days and then 3 weeks for the rest. If something needed to be sent off then thats when you get into the months of waiting. CAT testing is an enzyme antigen test that measures how the kidneys are reabsorbing the carnitine. He wants me to stay a few days after the procedures. He said there was no way he was sending me back to KY for awhile. LOL He is SOOO right. My mom was in total agreement. He said if need be he will admit me to the hospital. All my meds have to be stopped 2 weeks in advance. (Malisa I hope that answers your question. ) My testing from Dr. Rhead should be back soon, but he didn't know when. He was very upfront in saying that I didn't need to rush and decide about this. And even after I'm scheduled if I get cold feet it's fine to cancel because there are 10 people on the waiting list. Fran is going to call us with the dates. He is having me set up for a pre-op consult with the surgeon and anesthesiologist as well. Would you think that would be the day before?? He wants me to have another EKG and Echo done beforehand as well. Shoo..I hope I remembered to tell you everything. I feel some what better..but still not certain as to what I should do. Please keep praying. Thanks for helping me out again. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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