Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 I'm still wiped out but that is to be expected after being put through the mill and being inpatient for a week at CCF. I'm on my first 12 hr day of TPN today. I was discharged by the home health nurse this morning on her first visit. I took charge and did what I knew how to do. I think I shocked the nurse. hehe It was a requirement of CCF that home health at least come even though I didn't need any assistance. I had an allergic reaction the first night of TPN in the hospital. The Lipids and Pepcid were removed and so far I've done well since. I saw Dr. Cohen and he was excellent and personable.He was very excited that a brand new gene test is available for me. It's the OCTN2 gene-carnitine transporter gene. Thats the one I've been needing for so long. It's going to Horizon labs but it may be a long time to get the results. He also had me get the MNGIE and Creatine test done as well. He invited me to come back over lunch and be a guest for the neuro residents conference training. It was flattered and obliged. I was seated in the front of the room with all these doc's infront of me. It was done really well in a teaching/diagnosing fashion. Dr. Cohen called on one resident to do the medical history and another to do the physical exam. I wasn't to tell them anything that they didn't ask me or tell my Dx. The purpose was to see if they could diagnose a patient in 30 mins. It led to a very interesting conversation which I believe would have gone on for some time had I not had to leave for my gastro testing. The gastro testing was very painful. Let's just say I was too small for the equipment normally used. The pending results are very abnormal according for my colonic transit study. I was given a pseudo obstruction Dx. The sleep study was terrible. I wasn't able to lay down until 11:30 due to delays with getting me ready and all the equipment put on. It was an abnormal study showing REM obstructive sleep apnea.I only slept 49 %. It's not the type where you snore but I won't know the details until this next week when Dr. Cohen is back from vacation. I was trained on how to self administer Forteo shots as well. I did ok but have site reactions and some bleeding afterwards which nobody can really explain. I've spoken with my doc. and the company that makes Forteo. I think thats pretty much the highlights. Thanks for all your prayers! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Wow, that sounds like quite the visit at CCF. I had a thought as to the Forteo reaction you had. It may very well have been an additive or preservative that caused the problem, not the med itself. I can't use novacaine with epi in it and Laurie has a problem with a preserviative. Marcaine comes to mind for some reason, but Laurie can't tell us for sure until next week since she will be off line until Tuesday. I'm very proud of you and your being able to tell the home care nurse what needed to be done instead of the other way around. Good luck with the test results and let us know what you find out. Hugs, LILQT4U1984@... wrote: >I'm still wiped out but that is to be expected after being put through the >mill and being inpatient for a week at CCF. >I'm on my first 12 hr day of TPN today. I was discharged by the home health >nurse this morning on her first visit. I took charge and did what I knew how >to do. I think I shocked the nurse. hehe It was a requirement of CCF that >home health at least come even though I didn't need any assistance. I had an >allergic reaction the first night of TPN in the hospital. The Lipids and Pepcid >were removed and so far I've done well since. >I saw Dr. Cohen and he was excellent and personable.He was very excited that >a brand new gene test is available for me. It's the OCTN2 gene-carnitine >transporter gene. Thats the one I've been needing for so long. It's going to >Horizon labs but it may be a long time to get the results. He also had me get >the MNGIE and Creatine test done as well. He invited me to come back over lunch >and be a guest for the neuro residents conference training. It was flattered >and obliged. I was seated in the front of the room with all these doc's >infront of me. It was done really well in a teaching/diagnosing fashion. Dr. >Cohen called on one resident to do the medical history and another to do the >physical exam. I wasn't to tell them anything that they didn't ask me or tell my >Dx. The purpose was to see if they could diagnose a patient in 30 mins. It >led to a very interesting conversation which I believe would have gone on for >some time had I not had to leave for my gastro testing. >The gastro testing was very painful. Let's just say I was too small for the >equipment normally used. The pending results are very abnormal according >for my colonic transit study. I was given a pseudo obstruction Dx. >The sleep study was terrible. I wasn't able to lay down until 11:30 due to >delays with getting me ready and all the equipment put on. It was an abnormal >study showing REM obstructive sleep apnea.I only slept 49 %. It's not the >type where you snore but I won't know the details until this next week when Dr. >Cohen is back from vacation. >I was trained on how to self administer Forteo shots as well. I did ok but >have site reactions and some bleeding afterwards which nobody can really >explain. I've spoken with my doc. and the company that makes Forteo. >I think thats pretty much the highlights. Thanks for all your prayers! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 , Sounds like you had an exciting visit there. And very interesting. (well, you may have a different description for the gastric testing - and it's probably not " interesting " ). I was interested in the carnitine transport gene (OCTN2). As I have a carnitine deficiency also - I would imagine this is one of the genes that I should have tested when I have my biopsy. How recently did they start testing on this gene? And... just curious - were any of the residents able to diagnose you within the thirty minutes? Maggie > I'm still wiped out but that is to be expected after being put through the > mill and being inpatient for a week at CCF. > I'm on my first 12 hr day of TPN today. I was discharged by the home health > nurse this morning on her first visit. I took charge and did what I knew how > to do. I think I shocked the nurse. hehe It was a requirement of CCF that > home health at least come even though I didn't need any assistance. I had an > allergic reaction the first night of TPN in the hospital. The Lipids and Pepcid > were removed and so far I've done well since. > I saw Dr. Cohen and he was excellent and personable.He was very excited that > a brand new gene test is available for me. It's the OCTN2 gene- carnitine > transporter gene. Thats the one I've been needing for so long. It's going to > Horizon labs but it may be a long time to get the results. He also had me get > the MNGIE and Creatine test done as well. He invited me to come back over lunch > and be a guest for the neuro residents conference training. It was flattered > and obliged. I was seated in the front of the room with all these doc's > infront of me. It was done really well in a teaching/diagnosing fashion. Dr. > Cohen called on one resident to do the medical history and another to do the > physical exam. I wasn't to tell them anything that they didn't ask me or tell my > Dx. The purpose was to see if they could diagnose a patient in 30 mins. It > led to a very interesting conversation which I believe would have gone on for > some time had I not had to leave for my gastro testing. > The gastro testing was very painful. Let's just say I was too small for the > equipment normally used. The pending results are very abnormal according > for my colonic transit study. I was given a pseudo obstruction Dx. > The sleep study was terrible. I wasn't able to lay down until 11:30 due to > delays with getting me ready and all the equipment put on. It was an abnormal > study showing REM obstructive sleep apnea.I only slept 49 %. It's not the > type where you snore but I won't know the details until this next week when Dr. > Cohen is back from vacation. > I was trained on how to self administer Forteo shots as well. I did ok but > have site reactions and some bleeding afterwards which nobody can really > explain. I've spoken with my doc. and the company that makes Forteo. > I think thats pretty much the highlights. Thanks for all your prayers! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 What a trip ! I'm curious too about whether or not they were able to dx you. That's very cool that you were asked to participate and I bet you were just dying to tell them...or laugh out loud ! It's like hands on sherades. Sorry to hear about your GI experiences. I have a lot of GI problems too and there are few things in life worse than that. No one knows unless they've been through it for months or years on end. Hope things start to improve for you soon. I'll be praying for ya bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2004 Report Share Posted April 10, 2004 Maggie, I believe the test just became available last week. It is very cutting edge. I would inquire if it's something you should look into. The residents did a pretty good job. They got in the general area, and then with a little prodding figured it out. Dr. Cohen told them that they did well because I was a very difficult case. Quote Link to comment Share on other sites More sharing options...
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