Re: Re: socializing work

[Guest guest]

You know, I never thought of it that way. You are right, work was a way of socializing. The other teachers in my building are close and have been very supportive of all of this. This board takes the place and gives me a way of socializing. I just can hardly wait to get back on check email. I told my daughter in law this afternoon (while we were shopping) that I was surprised that I didn't miss teaching like I thought I would. I know that I'm going to do some tutoring this summer with my dyslexic child, so I'm not done tutoring. Oh my gosh, as I tried on clothes today I've gained weight since I'm not working. I don't think I'm eating so much, but I walked up and down hallways ALOT when I was working. Sigh! I guess I gotta do something about it. K IllinoisBruce Moreland wrote: Sher/ KYou wouldn't dare consider such a thing, Sher. Then what would happen tothose of us addicted to you?Now just take time out for your project. If the weather is decent getout if only for a few moments and no real reason to do so. And,exercise. Then come spend time with us here. Oh my, you're doing sowell.I read what you said yesterday about this helping fill the void leftwhen your career was pulled away from you.

Well, I wasn't in the samefield, although wish I had been, but I think it fills that void for manyof us. One thing work is in addition to anything else is that its ourplace to go and spend time and socialize. So we do that here but not thesame hours we worked and flexible and then we still do the other thingswe need to.> I research and gather information and make those decisions I need toin advance. I also pursue all options. But, I'm not attempting to makedecisions before their time, just attempting to be prepared. So, I can'tsay today whether I'd choose to have a transplant or not. But, I didchoose to visit the transplant center at UTSW and gather information andstart toward finding out if I'd be a candidate or not.> None of what follows is intended to influence anyone else, but just toshare my experience. I felt it was a worthwhile and

informativeafternoon.> I was given a lot of information, both verbal and written. Some was anupdate on the lung allocation system. I didn't know that it actually isbased on the one that existed for liver transplants. Sometime back achange was made that is quite favorable for those of us with PF. Priorto that change, getting in line was very important because you got aplace and maintained it over new arrivals. Now, you get a score (yes anumber) which determines your place on the waiting list and how longyou've been waiting has no impact. This means that PF patients get apreference they didn't because being close to death with no otheroptions as they deteriorate pushes them up over COPD or other patientswho may have been listed longer.> I was aware of www.unos.org but he gave me a new site to visit whichis interesting, www.transplantliving.org .> Why am I doing this now, so far in advance? Well,

because I'm healthyenough to go talk and to explore and to plan just in case. Also, I canfind out early if there are factors that would exclude me. Some factorswould be absolute and others would be relative. Finding some initialinformation in this regard would not be that invasive or time consuming.Obviously down the road a real transplant evaluation is. However, theydon't recommend getting an evaluation until you're within one year ofprobable death. Their belief is that you want to get all you can out ofyour existing lungs before trying new ones. You don't want to sacrificewhat can be a good life for a premature transplant. Also, if you movetoo soon you will just find yourself repeating so many tests as the timewill require.> UTSW does not tell you to stay within two hours upon listing but onlywhen you are in the top four or five candidates by score. Then based onmatch you could be called. For instance, if you're

a 6-4" man and numberfour and they get organs from a 6-4" man and all those ahead are shortwomen, then you might be called. Post transplant they require you to bewithin one hour of the center.> They require you to have someone with you 24/7 for 4 to 6 weeks afterthe transplant, longer if any complications. A couple of key reasons, inaddition to being watched after, are (1) for transportation and (2) formedications. They have found many patients post-transplant, because theyare on such high levels of prednisone, mismanage their medications. This24/7 care can be anyone-family, friends, or paid. However, medicare andmost insurance does not cover any of it as it is considered custodialcare. Also, they do not allow an intermediate stay in a nursing home asan option due to the exposure to other people and other illnesses andgerms.> Of course each insurer is different but I did also meet with thefinancial and

social directors today and here is what I found out onMedicare. Medicare does cover 80% of the costs of the transplant andtreatment and, with a medicare supplement, then 100% are covered. Ofcourse the medications required after would fall under Medicare Part Dand would quickly send you into and through the black hole. So typicallythe prescription cost could be in the $6000 per year range. Now thereare sources of assistance, including medicaid, the pharmaceuticalcompanies, and other organizations.> I had an interesting discussion on the topic of organ selection andthe issue of more conservative hospitals doing fewer transplants butachieving higher success rates versus more aggressive hospitalstransplanting a larger percentage but having slightly lower successrates. We agreed it was a complex issue, but he did bring up thatinsurance plays a role in it, since they just look at success rates.Although hospitals have

general practices, the ultimate decision is oneof the surgeon and pulmonologist on the case.> Note UTSW is where Gwynne had all her testing done and was listedbefore she double listed with UTSA, where she ended up having thetransplant.> UTSW's current survival rates are around 92-93% one year and around68% five years. The one year number means they typically have only onefirst year death per year.> One thing on which he did confirm my beliefs is that the moretransplants a hospital is doing the better success rates you can expectthem to have. It makes sense, but he indicated there was real datasupporting that theory, although he didn't provide it.> They also gave me an excellent book on transplants in general,"Partnering with Your Transplant Team." This is published by the US Deptof Health and Human Services and prepared by UNOS. It is available here:> http://unos.org/resources/brochures.asp> There is some very detailed information available here:> http://unos.org/resources/policyBrochures.asp> It includes information on the Lung Allocation System.> Obviously, many of you know far more about this topic than I do andare very far down the line. However, for those who aren't there yet,like me, you might find a referral for an initial visit to be worth thetime.>>>>>>> K> Central Il> Hubby ipf- 2006> As for me and my house, we will serve the Lord> 14>>>----------------------------------------------------------\------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Tryit

now.> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

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