Guest guest Posted February 18, 2008 Report Share Posted February 18, 2008 Well, I'm feeling a little disheartened. A rehab nurse came over today to begin working with me, based on the desire of the new San doc (Dr. Angel :-)). Her name is Carlee and she's very sweet. Her spiel was pretty much what you'd expect to give someone just starting pulmonary rehab in earlier stages (been there, done that). I'm trying not to be cynical about that, after my sats fell to 73 this morning walking to the bathroom. But I did 10 minutes on my recumbent bike, walked 3 laps around my house at 15 L, resting and recovering after each one, and about 5 minutes of therabands. big whoop. I don't have the same hopes for increasing exercise tolerance, obviously, that I had before, but hopefully it will help improve my recovery from transplant (RING phone RING) by working harder now to keep all my parts moving. I promise to try to be more positive about this. Tina, Like you, I was able to complete a number of tests at home (Fort Worth) instead of at the center in Dallas. I haven't heard of anyone having to repeat an entire evaluation every 6 months. My complete evaluation was in Feb, 2005 and they repeat some tests every so often. Every now and then they do an EKG, and an echocardiogram. About every 6 months or less they do an HRCT, and about every 2 months a chest x-ray. Every 3-4 weeks now, PFT's but not always the DLCO. As long as the EKG is good, they won't make me repeat the heart catheterization. I just started the Hepatitis vaccination series, and had another TB test for the San center where I'm also listed. They haven't made me do another colonoscopy, but made me repeat a VQ scan. Of course, the mammo, pap, and dental clearance are required. I had 3 endoscopies last year, but that's because I was diagnosed with something new in my stomach that required an ablation, and they wanted to check my GERD. In addition to my records, I also keep a running list of procedures and tests, labs, x-rays, etc. listed by category. I can look up and tell in a hurry the last echo I had, for example. It's quicker than leafing through my copies or complicated medical history. It helps a lot!!! I let myself get behind once, but I'll NEVER let that happen again. Kerry, when I had a pH Bravo & EGD, they sedated me and put the kind of monitor that clips on (that you mentioned) the stomach or wherever, and you pass it the next day. You wear a 24-hr. monitor that you have to return. What they made you do is barbaric, plain and simple. I understand why you can't be asleep for a motility study, but puhleeze!! Joyce, I am praying for God to give you exactly what you need. Right now I can't see how you need any of this! Donna, What kind of side effects are you having from all the meds? I hope not many. Tremors seem to be common. I hope you're as strong as you sound! Irene, I don't get the wait either. I'm glad that your employer has been good about all this mess, and that horrible person is not there any longer. When you had this similar situation in the past, what was the diagnosis? Is the pain any less when you're sitting or lying down - just curious, you little butterfly. , Good luck on finals!!! The whole idea scares me. Bruce, Thailand!? Peggy, hearing about the car repair makes me grateful all over again that neither of you was hurt in the accident!! Wow, daughters married at 19 and 34 - big gap there. I'm glad your church choir brings you so much joy. What would we do without music!?!? The world would be a much darker place for me. Leanne, having 12 people is quite a feat. It sounds like you had a delicious spread and a good time. I haven't even thought about fondue in ages - yum! I'm glad Mike is so good about helping out. How's the sore throat? GONE, I hope. Sher, I'd love to read your book if you'll tell me how I can get one. My daughter seems to have reached a different level in processing and dealing with my illness. Some of the change, no doubt, is maturity. She wants to be more involved in my care and, with my son, to be part of our new organization for raising organ donor awareness. She has been more open than usual with me and initiates more communication from her end. It feels great! I'm actually so glad for her sake - I'll think she'll feel better about herself later this way. , How great that you've started your book!! That has to be so gratifying. Your retention of historical facts is tons better than mine, even when it's something of interest to me. Your book will be such a terrific legacy to your children and future generations. Way to go, GIO! May, garlic nan - oh yeah!! My son and daughter-in-law have been married for nearly two years, but they were together for seven years before that. My daughter is 24 and has been going with the same young man for almost two years. They seem quite serious - fortunately, I like him and she seems happy. Do I have any grandchildren yet? NO, but I'm being patient. Babs, It's good news that the Cipro seems to be kicking in. Hope you feel stronger every day. Take care and pamper yourself. , I'm hoping you feel much better today, because I know tomorrow is Tuesday!!! Jane, are you feeling better? I'm glad Eddie wants to do nice things for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 HI, The problems with the tremors, and that is happening less often. My predisone is 15 mg, prograf 7mg and immuran 75 mg, that is the anti rejection med. I'm stronger everyday and now I see my transplant doc every 2 mons. Donna in DE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2008 Report Share Posted February 19, 2008 Donna, Thank you so very much for posting your experience. Some need to hear that.. THANK YOU. God Bless you and keep you going forward with your wonderful new lung. Love and Prayers, Peggy Florida, ipf 6/04 Worry looks around. Sorry looks back, Faith looks up. HI, The problems with the tremors, and that is happening less often. My predisone is 15 mg, prograf 7mg and immuran 75 mg, that is the anti rejection med. I'm stronger everyday and now I see my transplant doc every 2 mons. Donna in DE <819D88ED-66C2-4D1E-950A-B3ADAF364FC8> Quote Link to comment Share on other sites More sharing options...
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