tag:blogger.com,1999:blog-8593506365345292376.post2452551511966001770..comments2014-04-27T19:09:32.502-07:00Comments on The Journey to a Brand New Beth: Now what?Beth Annhttp://www.blogger.com/profile/09485503512092266473noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-8593506365345292376.post-87376159993073414142012-12-27T04:39:47.073-08:002012-12-27T04:39:47.073-08:00An exceptionally hard decision to make. No simple ...An exceptionally hard decision to make. No simple list of pros and cons can work this out. The financial cost can seem overwhelming but it's able to be estimated; the physical and emotional cost for yourself and your loved ones is a much harder thing to predict and prepare for. To have the hope of time and the freedom to breathe are things nearly everyone is able to take for granted, but they're priceless when you don't have them. However, after many years of fighting for hope and health, doubts arise about whether to venture forward and risk the unknown. I deeply sympathize with how hard this decision is.<br /><br />For what it's worth, I don't think you're losing your courage. I don't think you're giving up. I think you're counting the cost, for yourself and those you love. That's is part of this godawful process, and you're handling it as honestly as you can. I think you're assessing what your limits are and what kind of quality of life you want. I think you're doing the impossible task of trying to guess at what kind of pain your loved ones can or would rather bear. I think you're exploring what hope means for you and if it can take on different meanings. I think you're trying to figure out where you can find a measure of peace for yourself. This. Is. Hard. All of it.<br /><br />A couple questions I would have if I were someone close to you: <br /><br />1) Along with quality of life, what is the predicted outcome for if/when the lung transplant fails, either in the best case (5 years) or worst case (<1 year)? To put it very crudely, what does that death look like? What do your doctors say that can look and feel like? Is it it comparable to your current prognosis? Which endgame do you have a greater sense of peace with?<br />2) Is there greater peace of mind for you in knowing every possible avenue for remission has been acted on, or are there other sets of goals that might bring equal or greater peace? Does pursuing a lung transplant give you a goal to work toward that is valuable for you, regardless of success? I know that for me, when faced with life-altering decisions, the hardest and scariest part can often be not having a goal or plan to act on, no matter how hard that plan may be. Which set of goals or course of action would give you the greatest sense of control?<br /><br />I sincerely apologize if those are hurtful, simplistic, or offensive questions, and please don't feel the need to respond if you don't have the desire to do so. I want you to know that you're being heard, and you're not crazy or depressing to be thinking and feeling these things. Kendranoreply@blogger.comtag:blogger.com,1999:blog-8593506365345292376.post-665035217662815022012-10-18T13:57:47.102-07:002012-10-18T13:57:47.102-07:00Sue, Cleveland went well. Everyone was kind & ...Sue, Cleveland went well. Everyone was kind & helpful. I was told, however that the problem was my immotility. I don't know what they will say to you, but they would not accept me. UPMC is apparently the only place taking the risk, because they are avoiding aspiration after surgery by using a feeding tube instead of allowing you to eat. I haven't been there yet to get all the details, as there are insurance & financial concerns for me as well. I wish you the best of luck & if I can help more feel free to email me on yahoo at bethann914.Beth Annhttps://www.blogger.com/profile/09485503512092266473noreply@blogger.comtag:blogger.com,1999:blog-8593506365345292376.post-90045198313783336422012-10-17T10:45:36.520-07:002012-10-17T10:45:36.520-07:00Hello Beth,
I am a fellow Scleroderma patient just...Hello Beth,<br />I am a fellow Scleroderma patient just like you with pumonary hypertension and fibrosis. I read your post with great interest, and we are almost on the same path. I have been turned down by Loyola University Medical Center for lung transplant due to my esophagus issues - no motility at all, and I will soon be travelling to the Cleveland Clinic for an evaluation. I am curious about your experiene there. My doc wanted me to go to UPMC, but my insuance will not allow me to go there. If you would like to email me privately you can at stborowiak at yahoo dot com. Thank you!Suehttps://www.blogger.com/profile/07652516877464261484noreply@blogger.com