Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Hey Everyone Today was my first dayat Dukes PRe-TX rehab...I had orientation at 9:30 and then went onto class...LONG day. You don't finishh until $:30pm. Tricia wasn't kidding when she would tell me how tired they get ya there ! ! ! I had no idea it was going to be as hard as it was. I actually thought they were UNDER Estimating me ! ! ! ! Boy was I wrong ! ! ! The grannnies were lapping me ! ! ! I had to use a walker ! ! ! That was so embarressing and also another reality smack that I should have pushed my stupid doctors more so I could have had those lungs by now. I am sooooooooooo pitifully weak from almost 8 weeks in the hospital since mid-November. I was babying my lungs a little (Im used to the rehab programs making me stop when my HR goes up and my o2 drops). I have just been pacing myself for so long. Finally I asked what I should do and they said I should REALLY push myself and make it hard. They would just keep bumping my 02 up as I dropped. So I did that for the last minute...desatted but no biggy. I couldn't believe the hardest part though ! ! ! It was the group stretching. I sprained my ankle a month ago when I fell down the stairs (legs gave) and my arthritis and neuropathy is flaring up big time. But I am proud of myself. It was kinda hard for a sec....I mean you are in a room of your peers (not old friends) but people who literally know the path you are on and trying to just stay alive long enough to get lungs. I was also really blown away with all the medical horror stories ( wrong diagnosises and poor treatment by prior doctors)that the other Folks had like the one guy my age. It was all so similiar. One poor girl had the same horrible care at UNC that I did.I will ask her tomarrow if both of us had the same dang retard.We both could sue over what some docs put in our chart. It was also really nice seeing someone that I had met this time last year. He was just out of his TX a few weeks then. I almost didn't recognize him ! ! ! You would never know he used to have CF unless you look at his fingures and see the clubbing. HE actually reminds me of my hubby Brad....I guess its a CF guy thing. Only he weighs a lot more than Brad now...Brads gotta start gaining some weight again. I am just so dang tired....I didn't know I had this many muscles in my chest. I will have to take more pain meds tomarrow though. My lungs really started throbbing. Its that same darn spot on my left lung...its been there since middle school. Anyways...that was my first day. I treated myself to going shopping for new work out clothes ! ! ! I was too tired to try them on....I just kept the tags abnd recipts in case they don't fit...LOL I also spoke with several people who just had their TX and the coordinator that came and gave a lecture. She said that even though they said 6-9months for lungs, with my blood type(A+) it will be MUCH SOONER. SO I really hope that at my next visit they tell me its time to move down there..... Becki Listed for Lungs 1/14/04 at Mayo Clinic ville,Fla. YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 You go, GooberGirl! Wow, what a day! I'm so happy you're listed. I hope you get those lungs real soon. Angie P. (Ma to JC, almost 4yo, wcf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2004 Report Share Posted February 2, 2004 Dear Becky I am glad it is all working out for you. Duke is really a very good hospital . They were right on top of everything with My granddaughter last October. You will be great & do well through it all Keep the phone on :) It is 69* here tonight . LOVE & HUGS, GrandmomBEV My First Day at Rehab Hey Everyone Today was my first dayat Dukes PRe-TX rehab...I had orientation at 9:30 and then went onto class...LONG day. You don't finishh until $:30pm. Tricia wasn't kidding when she would tell me how tired they get ya there ! ! ! I had no idea it was going to be as hard as it was. I actually thought they were UNDER Estimating me ! ! ! ! Boy was I wrong ! ! ! The grannnies were lapping me ! ! ! I had to use a walker ! ! ! That was so embarressing and also another reality smack that I should have pushed my stupid doctors more so I could have had those lungs by now. I am sooooooooooo pitifully weak from almost 8 weeks in the hospital since mid-November. I was babying my lungs a little (Im used to the rehab programs making me stop when my HR goes up and my o2 drops). I have just been pacing myself for so long. Finally I asked what I should do and they said I should REALLY push myself and make it hard. They would just keep bumping my 02 up as I dropped. So I did that for the last minute...desatted but no biggy. I couldn't believe the hardest part though ! ! ! It was the group stretching. I sprained my ankle a month ago when I fell down the stairs (legs gave) and my arthritis and neuropathy is flaring up big time. But I am proud of myself. It was kinda hard for a sec....I mean you are in a room of your peers (not old friends) but people who literally know the path you are on and trying to just stay alive long enough to get lungs. I was also really blown away with all the medical horror stories ( wrong diagnosises and poor treatment by prior doctors)that the other Folks had like the one guy my age. It was all so similiar. One poor girl had the same horrible care at UNC that I did.I will ask her tomarrow if both of us had the same dang retard.We both could sue over what some docs put in our chart. It was also really nice seeing someone that I had met this time last year. He was just out of his TX a few weeks then. I almost didn't recognize him ! ! ! You would never know he used to have CF unless you look at his fingures and see the clubbing. HE actually reminds me of my hubby Brad....I guess its a CF guy thing. Only he weighs a lot more than Brad now...Brads gotta start gaining some weight again. I am just so dang tired....I didn't know I had this many muscles in my chest. I will have to take more pain meds tomarrow though. My lungs really started throbbing. Its that same darn spot on my left lung...its been there since middle school. Anyways...that was my first day. I treated myself to going shopping for new work out clothes ! ! ! I was too tired to try them on....I just kept the tags abnd recipts in case they don't fit...LOL I also spoke with several people who just had their TX and the coordinator that came and gave a lecture. She said that even though they said 6-9months for lungs, with my blood type(A+) it will be MUCH SOONER. SO I really hope that at my next visit they tell me its time to move down there..... Becki Listed for Lungs 1/14/04 at Mayo Clinic ville,Fla. YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 thanks for sharing all that. very informative for all of us. natalia will really like this post. thanks again john boguslawski My First Day at Rehab Hey Everyone Today was my first dayat Dukes PRe-TX rehab...I had orientation at 9:30 and then went onto class...LONG day. You don't finishh until $:30pm. Tricia wasn't kidding when she would tell me how tired they get ya there ! ! ! I had no idea it was going to be as hard as it was. I actually thought they were UNDER Estimating me ! ! ! ! Boy was I wrong ! ! ! The grannnies were lapping me ! ! ! I had to use a walker ! ! ! That was so embarressing and also another reality smack that I should have pushed my stupid doctors more so I could have had those lungs by now. I am sooooooooooo pitifully weak from almost 8 weeks in the hospital since mid-November. I was babying my lungs a little (Im used to the rehab programs making me stop when my HR goes up and my o2 drops). I have just been pacing myself for so long. Finally I asked what I should do and they said I should REALLY push myself and make it hard. They would just keep bumping my 02 up as I dropped. So I did that for the last minute...desatted but no biggy. I couldn't believe the hardest part though ! ! ! It was the group stretching. I sprained my ankle a month ago when I fell down the stairs (legs gave) and my arthritis and neuropathy is flaring up big time. But I am proud of myself. It was kinda hard for a sec....I mean you are in a room of your peers (not old friends) but people who literally know the path you are on and trying to just stay alive long enough to get lungs. I was also really blown away with all the medical horror stories ( wrong diagnosises and poor treatment by prior doctors)that the other Folks had like the one guy my age. It was all so similiar. One poor girl had the same horrible care at UNC that I did.I will ask her tomarrow if both of us had the same dang retard.We both could sue over what some docs put in our chart. It was also really nice seeing someone that I had met this time last year. He was just out of his TX a few weeks then. I almost didn't recognize him ! ! ! You would never know he used to have CF unless you look at his fingures and see the clubbing. HE actually reminds me of my hubby Brad....I guess its a CF guy thing. Only he weighs a lot more than Brad now...Brads gotta start gaining some weight again. I am just so dang tired....I didn't know I had this many muscles in my chest. I will have to take more pain meds tomarrow though. My lungs really started throbbing. Its that same darn spot on my left lung...its been there since middle school. Anyways...that was my first day. I treated myself to going shopping for new work out clothes ! ! ! I was too tired to try them on....I just kept the tags abnd recipts in case they don't fit...LOL I also spoke with several people who just had their TX and the coordinator that came and gave a lecture. She said that even though they said 6-9months for lungs, with my blood type(A+) it will be MUCH SOONER. SO I really hope that at my next visit they tell me its time to move down there..... Becki Listed for Lungs 1/14/04 at Mayo Clinic ville,Fla. YOUR FAVORITE LilGooberGirl YOUNGLUNG EMAIL SUPPORT LIST www.topica.com/lists/younglung Pediatric Interstitial Lung Disease Society http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2004 Report Share Posted February 3, 2004 > > The grannnies were lapping me ! ! ! I had to use a walker ! ! ! That was so > embarressing and also another reality smack that I should have pushed my > stupid doctors more so I could have had those lungs by now We are so proud of you! Keep on trucking in that walker ! jan Quote Link to comment Share on other sites More sharing options...
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