Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 i figure there are no dumb questions here what does tpn mean? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Dear Donna: I am so sorry that you got bad news about having to use a power chair. You probably don't know me, but my name is Trish Rodrigues. I am 53 years old , have mitochondrial myopathy, Complexes I and III, and my son has the same, he is 28, my other son is less affected, he is 30, and has cluster headaches . I just wanted to tell you that I am in an electric wheelchair and it is not as bad as you think. I know it is hard for you to take and it seems that this is a bad thing, but really it is not. will gain independence, will conserve his energy so he can do other things, and he will feel a sense of security, in that he won't fall. I , too, have a J tube for feeding, and a G tube for drainage. I, too, do a lot of vomiting . I am allowed now to eat by mouth and what does not digest goes out into the G Tube drainage bag. If I don't get too overwhelming tired, and drain my G tube when I feel too bloated, then I will not vomit. You are the first one that I have seen, other than myself that has the G tube for drainage. It works for me and I vomit much less. I just want to offer my experiences with you in order that it may help you and make you feel at ease. Life in a wheelchair is not so bad, it is the internal things you have to worry about. If you don't feel well internally, then you cannot get along at all. That wheelchair is only a tool for your son to get from one place to another. That is his legs....that is his security that he will not fall down. A wheelchair should never be a stigma, please don't think of it as that. Wheelchairs are good things....just think....and tell him this..... " You are just sitting down, and the rest of us are standing up....there is no difference between you and I.....you are just a little shorter! " That might make him smile a bit I hope. I just tell everyone that I am short now, but I certainly have the " power " to get around. I know this has been bad news for you and you feel that this is just another step downhill, please don't think of it that way. Think.... will be more independent, will be safer..... is special......He has not gone downhill.....he has gone forward. I hope I have helped you somewhat. Regards, Trish bad news > Hi all, > Had an appointment for yesterday in the Physical medicine clinic. Got bad news we were not expecting. She recommended that we look into a power chair for . She said he is losing strength in his arms and his legs are still under developed. Add to that that he needs to be connected to the TPN for 22 hrs a day is stiffling his development. He doesn't have the strength to pull or carry the bag. This was not what we wanted to hear. She also suggested a helmet because he falls and does not put out his arms to stop himself. I thought this was something that could be taught. The good news was that his gait has improved so she knows that neurologically he is normal.Because of this he can have a power chair to develop some independence and age appropriate skills. Learning to come when called, crossing the street,etc. Hopefully, he will not need it very much just when he is sick or for trips. > Sorry to vent when it's not directly related to TPN but I figured you could all relate to getting unexpected bad news. > We plan on going to the Oley Conference also with wildman in tow. > Trying to convinve our nurse to come on our trip to Disney World this summer. > Question for a recent post- those of you who have children on gtube straight drain do they still vomit? If so how much? has taken to vomiting almost everyday. This had never been an issue before. > > Donna mom to 29 months on TPN due to mito complex1 > > > Join 18 million Eudora users by signing up for a free Eudora Web-Mail account at http://www.eudoramail.com > > http://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 So sorry, Donna, about 's deterioration. I pray it is only temporary. Virginia, Emma's Mom (Complex I) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 It stands for TOTAL PARENTERAL NUTRITION . It is IV nutrition. Re: bad news i figure there are no dumb questions here what does tpn mean?http://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2002 Report Share Posted March 13, 2002 --- God do I know how you feel. I had some ob stick a wooded thing into my uterus and basically tell me I am hopeless. I am so stressed I can't even tell you. I won't give up and neither should you. Talk to every doctor you can until someone will listen and try to help. THere are to many success stories on this board. I post them and reread them when I am down. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2002 Report Share Posted March 31, 2002 Hi everybody sorry it has been such a long time but I have been in hell. Last week I had a laparscopy to drain a bllod filled cyst. Sounds pretty easy well that wasn't the case. It was 4 days after surgey and I just wasn't feeling well. I was pale and sweaty and was having horrible pain in my side and leg. I called the doc who did the surgery and he brushed me off saying it was nothing and to drink alot of fluids and to take tynenol for the pain. The only problem was the pain got so bad that it kept me up all night it was awful. This went on for days and my doctor wouldn't run any test or give me anything for the pain. Finally yesterday I went to the emergency room. Come to find out i was bleeding internally. I had a clot of blood the size of my hand just sitting on top of my blaader. The ER doc said my doc probaly nicked a blood vesel during surgery and it has slowly been bleeding since. He kept me in the hispital for a while on demerol and monitered me. My doc who did the surgery was out of town so the let me leave but said if I felt faint or was in worse pain to call 911. Im a lucky i feel and so mad at that stupid doc for brushing me off all week while i suffered. He is also the one that gave me Ahermans. Mon I am going to find a new obgyn since I already have a good RE. I cannot wait to sue this doc the lawyer said all this crap will really help are case. i was just reading your email you shlold run from that doc and don't stop till you find a good one there out there. Sorry you had such bad luck and I hope your feeling better. I would still really love to here from you! Thank you all for letting me unload. It nice to know thet you all care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2002 Report Share Posted April 16, 2002 Kelli, I'm sorry for your disappointment. It WILL all happen in time, I just know it. Hang in there. S Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2002 Report Share Posted April 18, 2002 Kelli, I'm sorry to read of your cycle being cancelled. Isnt' it strange how all these women who eventually get their linings increased, have some other factor in the way to allow them to have their baby. I've always had some funny feeling that maybe there is some correlation between the estrogen or progesterone we take and bad eggs. I believe you are only 33 years old right? Your eggs should not be old at that young age. Also, I have one thought about your surrogate that has no children. I've always thought that I may try to do surrogacy but one of the things I wanted from a surrogate would be that she has her own children. I guess this is a very selfish feeling that I have but I feel that if she does not have any children then she would not know what to expect when giving birth in terms of feelings and may not give me my baby if she is overwhealmed with motherhood feelings once she gave birth. My 2 cents. Poly Quote Link to comment Share on other sites More sharing options...
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