Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 Thanks Dawn. You made me feel good. I had a bone density test done and found out that I have pretty severe osteoporosis. My dad was in shock, but my mom and I knew I had nearly every risk factor for getting it. We have a strong family history, small bone structure, low body mass, low intake of calcium due to kidney stone, Heparin to flush my line, steriods with the IVIG,etc. My ped. called Dr. Cohen on this issue and he said I needed to see an endrocrinologist. The parathyroid apparently controls your calcium absorbtion so thats the reasoning in going to an endo. I would imagine I will be put on Fosomax or Forteo injections. The endo is foreign and we have fun trying to pronounce his name. It's spelled Allababadidi..my mom just says alli babba and the forty theives. hehe You have to find some humor in the matter. How has your weekend been? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Urrr. I can only imagine how frustrating this must be with your ex. You prob. wanted to reach across the table and ring his neck when he asked about taking to the petting zoo. I know it's important for a child to have a mom and a dad and all..but could his visits be monitored?? Hope and pray it all turns out for the best. Osteoporosis is rare in younger people, but not unheard of. Thats why most of the meds on the market for building bone are for post-menopausal women. Get some much needed rest today if you possibly can. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Hi Dawn, Throat is some better..headache is not. I haven't been free from this headache since the last IVIG. I don't know whats making it hang on so long..or if it's even still from the IVIG. My surgery is soon. It's on Sept. 16th. I haven't heard from Dr. or the anesthesiologist about when my consult is going to be. Maybe they just don't schedule too far in advance. I also need to call my immunologist and see if he wants/needs to see me while I'm already up there. I think it was discussed that maybe I would have to be reavaluated in Dec. but I don't want to go back in Dec. if I don't absolutely have to. Alot of loose ends to tie up in the next month. I'm going to have my echo and EKG done here before I go. I've had the same lady do them on me numerous times that I feel somewhat comfortable with her. I'm going to wait purposely to the last minute on that test. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 : From my past experience with our daughter, Leah, the anesthesiologist usually doesn't call til at the earliest a week before surgery. Then they ask all the questions. One thing I did when Leah was going to have dental work done was I told the anesthesiologist or the person asking the questions, if they have any concerns they could go to the site of the UMDF and read up on what has been written on giving anesthesia to a mito person. What impressed me was this person who was the assistant did just do that and also look up what meds he could give Leah. So just a thought. So I bet you may hear after Labor Day. So don't be waiting by the phone or get worried that you haven't heard from them yet. They will have your file in front of them or what it is in regards to. But good luck with the surgery and the preops. By the way, I believe it was Dr. Cohen who wrote the article about anesthesia given to a mito patient. You could print it out and also mail it to the surgeon if you want to. Don't know how they would feel about getting something like that, but you need to cover your butt, so to say and protect yourself. Nerenhausen mom to Leah LILQT4U1984@... wrote: Hi Dawn, Throat is some better..headache is not. I haven't been free from this headache since the last IVIG. I don't know whats making it hang on so long..or if it's even still from the IVIG. My surgery is soon. It's on Sept. 16th. I haven't heard from Dr. or the anesthesiologist about when my consult is going to be. Maybe they just don't schedule too far in advance. I also need to call my immunologist and see if he wants/needs to see me while I'm already up there. I think it was discussed that maybe I would have to be reavaluated in Dec. but I don't want to go back in Dec. if I don't absolutely have to. Alot of loose ends to tie up in the next month. I'm going to have my echo and EKG done here before I go. I've had the same lady do them on me numerous times that I feel somewhat comfortable with her. I'm going to wait purposely to the last minute on that test. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Hey Dawn, I'm not sure how the PFT will affect my surgery. I think it will just be good for the anesthesiologist to be aware of it. We are waiting to hear back from Angel Flights, but yes we will go up on Sun. and then my surgeries are on Tues. a.m. My headache is better, I'm just overly sleepy. I need to go and pick up my new glasses but that will prob. have to wait until tom. Hope you get some answers soon!! I'm still praying. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2003 Report Share Posted September 27, 2003 Thanks for your support Dawn. I don't know about a visiting nurse service. I've heard from several people now about your suggestion with having the doc. order the supplies, etc. I hope it doesn't come to that..but we'll see. I'm going to start running out of supplies this week so something has to get going soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 Dawn, Thank you so much for your support and prayers. Anne has been posting some on the TPN list. The boys have been going through so much lately and she had a tooth prob. and wasn't feeling well herself either. She amazes me how she can stand so strong through all that she has to endure and cope with. You do as well for that matter! How is feeling today? Hope she is getting this week off to a good start. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2003 Report Share Posted October 11, 2003 Thanks Dawn. I see my doc. this Fri. so I know this issue will a topic of discussion. I hope that your appt went well and I'll be looking for an update from you today. Have a good weekend and feel Well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2003 Report Share Posted October 12, 2003 Dawn, Hi - I am so behind on the digest but saw your email asking where I was. Just want to let you know I'm here. The boys are home and doing so-so. Zachary is tired with school - first quarter is always such a huge adjustment though he only goes part time and is serviced at home for the rest of the time. Sam got a second double lumen CVL so now he has 4 lumens - we just needed more access with all of his infusions and blood products. We are running Factor 7a continuously so he did fairly well with the surgery from a bleeding perspective. Still on daily platelets, 3x/day cryoprecipitate and 2x/week red cells and continuous IV antibiotics so I am tired. Sam started kindergarten though!!!!!!! he made a wish to do this on his birthday in May and it was an amazing experience for all of us to watch that wish come true. he goes 2-3 times a week for 1-2 hours but LOVES every minute of it. It makes every thing I do for him worth while to see his wishes come true. Saw a message that you had been in the hospital. I'm so sorry. Hope you feel better soon and that the genetics appt went well. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Dawn, Thank you. I see my cardiologist Thurs. and my internist Fri. Praying for good results and answers. How are you feeling this week? 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.