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anonymous
11-22-2003, 02:37 AM
My boyfriend is turning 33 this comming Friday, he's been told almost monthly to live it up this very well could be his last. So as any teenage boy would he began to live life as if it were his last day, he has a work ethic very seldom found now a days but reminds one of the "old days", when a man did a full and honest days work with pride and has the respect of the people he works with. He has a zest for living that would leave most people in awe and unable to compete. He has crammed more living in his time than most of the population does in 70+ years. He has a sense of humor about himself and the rest of the world that makes me laugh. I admire him for his courage and I applaude him for his ability to take charge of his life and give it meaning. We are currently fighting the transplant doctor because of "misjudgements" he made in his past teenage years. They have "black balled & labeled" something he is not and now are making life almost unliveable. They won't transplant him if he doesn't have insurance but if he doesn't work well...no insurance. I have watched him go from 250 mph to 0 mph in less than a year, his lung function and health have decreased 10 fold in this time. Yes he has his good days and his bad days but there seem to be more bad than good. But the transplant doctor says he's "too well to transplant" because he still works 40 hrs/week. Even though he does nothing else now but work and treatments he's too tired and well just can't catch his breath any more even with all the new fangled meds and machines. For me this has been very difficult for I am a nurse and pretty much know more about the medical side than I really want to at times. I'm so scared and have promised to stay by his side until the end which ever way it may go, but I find myself wanting to run like hell not from him but the illiness itself. Our last attempt to obtain a transplant here is the first week of Dec. if they decline him now I'm affraid he will give up and just decide not to try anywhere else. His CF doctor has given him 6 mos to live, the transplant team was susposed to help find me a support group...that was 6 mos ago and still no group. For something that they say is susposed to be so personal and difficult "at times" I feel as though it's been the most stressfull 1&1/2 years i've ever had. And I know that this will get much worse before it gets much better and that he very well may die before he sees his birthday next year. I've also asked the doctors about TPN to help him gain weight, however Iwas stopped dead in my tracks and was told no, but they would be more than happy to place apeg tube in him. When Iasked why I was told because his gut still works. Well...yes to an extent, but it doesn't matter wether you put the food in the mouth or fill the tummy thru a tube when he coughs (which is all the time) it's so hard he vomits it all back up, so I figured if it went straight into the blood stream it can't come back out. But they still won't give me a good reason as why we can't and what info I could find about TPN vs PEG tubes said you can do either or. I just don't know anymore and I'm getting tired of fighting what seems to be a losing battle and I know he is and for him just trying is making him sicker. Any ideas or pep talks would greatly accepted. Thanks Ourstarshine

Diane
11-22-2003, 05:17 PM
Hi, It sounds from your story, that you feel there is no where to turn anymore. I can understand that feeling, as i have felt that way myself at times. Since i am a cf patient myself, i certainly know that cf can throw one for a loop sometimes. I feel for your situation having to watch the man you love go thru such hard times. I am sure he is afraid for his future as well. I know it must comfort him to know you are there for him, and want to help. Unfortunately with cf, we never can predict what will happen. My nurse once told me of a time when a cf patient was in the hospital in a coma and it was predicted she had almost no time left, and my nurse paid her a visit to "say goodbye". Well, to everyones surprise this girl walked out of the hospital a few weeks later. I always keep that story in mind when i feel down depressed, and fearful for my own future. I also know that God is there for me, and take's care of me, and i trust that He is the one who leads our path . It is hard to be in your position, and it also very hard to be in your boyfriends position. Just knowing that someone out there cares may help , i hope. I will say a prayer for you both, and i wish you both the best. Sometimes when all seems lost....it isn't <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~ Diane email me any time if you need to [email protected]

anonymous
11-23-2003, 05:22 AM
Diane Thank you for your kind words and moral support, It makes me feel better there are other people who are willing to listen. I"m tring to be positive and hopeful, sometimes it's very hard. But if everything goes well this huge boulder will look like a small pebble in a few years. I know that this will be the first of many, together we can do anything. Wishing you Happy Holidays and you"ll be in my thoughts. Amy