Guest guest Posted September 4, 2005 Report Share Posted September 4, 2005 Hi Vivan, Yes, it has been a long time. I wish you the best with your appointment and biopsy with Dr. Shoffner. I met him at the UMDF conference in Pitts. last Aug. and he is really a neat guy. I think you will like him. I hear he is a wonderful and caring doctor. Do you know who will be following your treatment once you come back home? And I wish you safe travels and a good appointment and biopsy. Is your 12 yr.old going to have a biopsy too? Best of luck !!! Praying for you. Update us when you get home and are rested up. Hugs, Ann-Marie At 12:15 AM 9/5/2005, you wrote: >Hi...it has been so long that I have posted...I was really sick for >awhile and seemed to have lost access to my yahoo account. > >Anyway, since I last checked in, it seems that all three of my >children have symptoms of mito and my cardiologist has gotten my an >appointment with Dr. Shofner. I fly on Tuesday, see him on >Wednesday, biopsy on Thursday, fly home on Friday. > >I had a biopsy locally four years ago, (frozen one) that didn't show >anything. All the doc's have been pushing me to take my 12 year old >instead and have him biopsied instead, saying the mito will show up >easier in a child. > >Wow, I can't believe that I have finally figured out the computer >enough to get back on line. > >Any words of encouragement or what to expect with Shofner would be >great. We are staying at the Mc house...is that a good >idea? > >Thanks for any and all replies. > >Vivian > > > > >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 September 5, 2005 Report Share Posted September 5, 2005 Hi Vivian this is another Vivian! I was diagnosed by Shofner 12 1/2 yrs ago. Everything you have heard about him is true. He is also a very, very thorough dr. You are in great hands. Best wishes and prayers for you and yours. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Vivian I had my fresh biopsy and diagnosis by Dr. Shoffner. He is a good doc., and I am very grateful to him for doing fresh biopsies. My family was told that the biopsy was best done on the most affected person - that's me. I have not stayed in the Mc house in Atlanta, but have stayed at the one in Cleveland and it was great. I'm going to make a suggestion based on experience. You might want to have an alternate place to stay in case you are bumped out of the Mc House. When my sister and I got to Atlanta, we found out that there was a huge outbreak of something (can't remember what) and the Mc House was filled with sick children and we were left with no place to stay. Luckily we were visiting someone we had met online and they were able to find a hotel we could get into. I'm sure this was an unusal situation, but I would always have something else in mind. I'll be thinking of you as you make the trip and get your biopsy and the duration of your wait for the results. laurie > Hi...it has been so long that I have posted...I was really sick for > awhile and seemed to have lost access to my yahoo account. > > Anyway, since I last checked in, it seems that all three of my > children have symptoms of mito and my cardiologist has gotten my an > appointment with Dr. Shofner. I fly on Tuesday, see him on > Wednesday, biopsy on Thursday, fly home on Friday. > > I had a biopsy locally four years ago, (frozen one) that didn't show > anything. All the doc's have been pushing me to take my 12 year old > instead and have him biopsied instead, saying the mito will show up > easier in a child. > > Wow, I can't believe that I have finally figured out the computer > enough to get back on line. > > Any words of encouragement or what to expect with Shofner would be > great. We are staying at the Mc house...is that a good > idea? > > Thanks for any and all replies. > > Vivian > > > > > > 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 September 5, 2005 Report Share Posted September 5, 2005 Vivian, Thanks for the input! It is just wild to run into someone else named Vivian, especially someone who has mito! How old are you and where are you from? I'm 45 and live in Illinois. Have a great day. Vivian too! > Hi Vivian this is another Vivian! I was diagnosed by Shofner 12 1/2 yrs ago. > Everything you have heard about him is true. He is also a very, very > thorough dr. You are in great hands. > Best wishes and prayers for you and yours. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 oh well we are very close then....I am in Milwaukee, WI. I am 48 and was diagnosed when I was 36. Will keep all of you in my prayers....you are in good hands. Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 The Mc House is very nice. One word of caution, only three rooms are on the first level. When lies had her biopsy, swe were on the second floor. She really struggled to walk up the flight of stairs after her biopsy. Otherwise, the accommodations were lovely and dinner was provided every night (don't know if it still is as we were there in 1998). Dr. Shoffner is very knowledgeable and kind. I believe if he wanted you to stop the supplements he would have told you so. He asked up NOT to start lies' until after the biopsy was done, so he is very aware of what peoiple are taking or not taking. That most difficult part of the whole process is waiting for the results. That will take WEEKS. Hope everything proceeds well for you. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 We've stayed at four or five Mc Houses. Not all are created equal. Some make you pay, some don't. Some feed you, some don't. Some have huge waiting lists, some don't. Some have community bathrooms, some have private. But one thing is certain. Always have a hotel reservation just in case. - Mom to the two best kids in the world! http://www.caringbridge.org/visit/thomasandkatie ______________________________________________________ Click here to donate to the Hurricane Katrina relief effort. http://store.yahoo.com/redcross-donate3/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 -Hey Vivian, I go to Milwaukee a lot because my neuro; Dr. Peltier is at Froedert. She has been really wonderful to me. I need to get up there to see a pulmonologist as well, but was unable to make it up this summer. (They wouldn't keep my appointment because I was running late...you just can never tell what the traffic will be like. Who takes care of you, and at what hospital? Since you have been diagnosed for 12 years; I was wondering if you could tell me how your health has progressed in that time. Do you have children and are they affected? Thanks for the input... Tomorrow we fly to Atlanta...I will try to check in while I'm there as my husband will have his work lap top with him. Vivian -- In , Vcgpg@a... wrote: > oh well we are very close then....I am in Milwaukee, WI. I am 48 and was > diagnosed when I was 36. Will keep all of you in my prayers....you are in good > hands. Vivian > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 At the moment I only see my endocronologist (at froedert) diabetes is a part of my mito. For the moment I am pretty stable.....I have 2 daughters in their 20's. The youngest has thyroid deficiency (as do I) and currently they are both seemingly ok for the most part. I hope all goes well in Atlanta. Of course, once you are home it is best to put it all out of your mind as the results take some time to come back! (smile) Vivian Quote Link to comment Share on other sites More sharing options...
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