Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 I'm going to the hospital today, 5/4, at 3 p.m. for a trial Iron Infusion as my Ferritin is very low. If you would please pray that everything goes well and that I don't have any reaction to the Iron. I'm not sure how long the infusion will take. One nurse mentioned that if I tolerated the trial dose then they would go ahead and do a reg. infusion. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 , Did you have your bone marrow checked for iron stores? It might be full of iron and if it is, your infusion could even make you worse. LILQT4U1984@... wrote: >I'm going to the hospital today, 5/4, at 3 p.m. for a trial Iron Infusion as >my Ferritin is very low. If you would please pray that everything goes well >and that I don't have any reaction to the Iron. I'm not sure how long the >infusion will take. One nurse mentioned that if I tolerated the trial dose then >they would go ahead and do a reg. infusion. >Thank you, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Dear , You will be in the thoughts and prayers of many Mitoldies, I am sure. Please let us know how everything went. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 , I was never told about having my bone marrow checked for Iron stores. How would you go about doing that? It sounds painful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Wow. Thats scarey Laurie. I had my labs faxed to the oncologist here (we don't have any hemotolgists here) and he just said that I did need Iron. He couldn't see me without a referral and we are having a terrible time getting intouch with my PCP. We have called daily asking for him to personally call us back and messages are stacked on his desk and still no call. Plus last night he knew about the reaction and never came by the ER or called to see how I was doing today. There is nobody here to switch to as far as a PCP but I'm getting really frustrated! Dr. Cohen gave me the ok to recieve the Iron so I'm wondering why now if he knew that other people have had probs. My mom spoke with him directly today and he still made no mention about the bone marrow test even after hearing about my reaction. He did request my labs so I've sent those via fax and e/mail for him to review. I know that I don't feel comfortable getting another infusion until I have a compitent physician ordering it and observing me Thank you so much for you help and I will certainly keep everything you've told me in mind. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Laurie had it done when her iron was low and supplementation didn't raise her levels. It was found that her marrow was full and she was told never to supplement iron again. I was also told to take it sparingly as it isn't unusual for mito folks to have issues with the body processing it properly. I think Laurie's was packed so badly that the body couldn't get it back out to use it. Laurie? LILQT4U1984@... wrote: >, >I was never told about having my bone marrow checked for Iron stores. How >would you go about doing that? It sounds painful. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 I am the one in the family who has had it done and had the problem. I was anemic, but when they did the bone marrow test (ruling out cancer) they found that my iron stores were way to high in my marrow. I was told to never take iron again. I have to take multiple vitamins without iron. Dr. Cohen said that this is not uncommon in mito. Having a bone marrow test is painful, but only for a second. I barely had time to inhale deeply and it was over. There was a lot of pressure when they were getting to the marrow. I had mine done in the sternum, since I have too much padding over my hips. laurie > From: LILQT4U1984@... > Reply-To: > Date: Tue, 4 May 2004 09:57:08 EDT > To: > Subject: Re: Iron Infusion > > , > I was never told about having my bone marrow checked for Iron stores. How > would you go about doing that? It sounds painful. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Yes, you are correct. Over many years, it is finally getting out and I am no longer anemic. laurie > > Reply-To: > Date: Tue, 04 May 2004 13:56:09 -0700 > To: > Subject: Re: Iron Infusion > > Laurie had it done when her iron was low and supplementation didn't > raise her levels. It was found that her marrow was full and she was > told never to supplement iron again. I was also told to take it > sparingly as it isn't unusual for mito folks to have issues with the > body processing it properly. I think Laurie's was packed so badly that > the body couldn't get it back out to use it. Laurie? > > > > LILQT4U1984@... wrote: > >> , >> I was never told about having my bone marrow checked for Iron stores. How >> would you go about doing that? It sounds painful. >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 It may be that Dr. Cohen responded to my question as he did, because I already knew it was a problem. I hope you find someone to help deal with this issue. laurie > From: LILQT4U1984@... > Reply-To: > Date: Tue, 4 May 2004 17:40:17 EDT > To: > Subject: Re: Iron Infusion > > Wow. Thats scarey Laurie. I had my labs faxed to the oncologist here (we > don't have any hemotolgists here) and he just said that I did need Iron. He > couldn't see me without a referral and we are having a terrible time getting > intouch with my PCP. We have called daily asking for him to personally call > us > back and messages are stacked on his desk and still no call. Plus last night > he > knew about the reaction and never came by the ER or called to see how I was > doing today. There is nobody here to switch to as far as a PCP but I'm > getting really frustrated! Dr. Cohen gave me the ok to recieve the Iron so I'm > wondering why now if he knew that other people have had probs. My mom spoke > with > him directly today and he still made no mention about the bone marrow test > even after hearing about my reaction. He did request my labs so I've sent > those > via fax and e/mail for him to review. I know that I don't feel comfortable > getting another infusion until I have a compitent physician ordering it and > observing me > Thank you so much for you help and I will certainly keep everything you've > told me in mind. > > > > Quote Link to comment Share on other sites More sharing options...
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