Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Hello all. I have been busy reading all the posts, but haven't replied much. I have been consumed with my doctors, etc. I am officially " withdrawn " from the transplant evaluation and listing. My heart problems, my antigen count, my own perspective...all played a role in the decision. Transplant is not going to be an option for me. I am not disappointed, but rather, I am relieved to a degree. I slept for many hours yesterday as the news really hit me. I guess the stress relief was what I needed. I am thankful for each and every day that I have and I am glad that I am still able to do so many things. I know there will come a day when I will not be so lucky, and I will face those days " head on " . I am especially thankful for this group and how caring everyone is. Next week I see a neurologist at Cleveland Clinic and then on to the sleep study! I am almost certain I will then be equipped with a CPAP too. God Bless, Tina IPF 04/07 PH 11/07 Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 Tina, I think all of us have very mixed feelings about transplant. I, too, was relieved when turned down. Then as things got worse, I was wishing that I had the option. Now, the new pulmo is saying at Duke that they will do it, even with my complications. I just don't want to go through making that decision again. I think I have waaaay too many problems. If I were healthy otherwise, I think I would feel differently. But, my chances for survival would be very slim! It is just a mixed bag. I know that you are exhausted. It saps your energy dealing with this stuff. I have had two days of it this week and I am pooped! Your photos are nice. That Kaleb is such a cutie. What a blessing he is to you. Isn't it amazing that God gives us just what we need! I miss those WV mountains, too. I always felt safe tucked into the hills. Did you see the series that Ray Cyrus did on the History Channel about that area. It tells about the ancestors who came from Scotland, the wars, the coal mine wars. A really good documentary. It has been on a couple of times lately. If you haven't seen it, look for the next showing. So good. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Hello all. I have been busy reading all the posts, but haven't > replied much. I have been consumed with my doctors, etc. I am > officially "withdrawn" from the transplant evaluation and listing. My > heart problems, my antigen count, my own perspective...all played a > role in the decision. Transplant is not going to be an option for > me. I am not disappointed, but rather, I am relieved to a degree. I > slept for many hours yesterday as the news really hit me. I guess the > stress relief was what I needed. I am thankful for each and every day > that I have and I am glad that I am still able to do so many things. > I know there will come a day when I will not be so lucky, and I will > face those days "head on". I am especially thankful for this group > and how caring everyone is. > Next week I see a neurologist at Cleveland Clinic and then on to the > sleep study! I am almost certain I will then be equipped with a CPAP > too.> God Bless,> > Tina> IPF 04/07 PH 11/07 Ohio> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 It sounds like you think it's the right decision for you, so I'm pleased about that. You are sounding positive about things and I hope you stay that way for a long time to come Love Ze xx>> Hello all. I have been busy reading all the posts, but haven't > replied much. I have been consumed with my doctors, etc. I am > officially "withdrawn" from the transplant evaluation and listing. My > heart problems, my antigen count, my own perspective...all played a > role in the decision. Transplant is not going to be an option for > me. I am not disappointed, but rather, I am relieved to a degree. I > slept for many hours yesterday as the news really hit me. I guess the > stress relief was what I needed. I am thankful for each and every day > that I have and I am glad that I am still able to do so many things. > I know there will come a day when I will not be so lucky, and I will > face those days "head on". I am especially thankful for this group > and how caring everyone is. > Next week I see a neurologist at Cleveland Clinic and then on to the > sleep study! I am almost certain I will then be equipped with a CPAP > too.> God Bless,> > Tina> IPF 04/07 PH 11/07 Ohio> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 Tina - I am sorry you have been so withdrawn. I tend to do that too. I am not sure why some are turned down and why some arent. I watched a movie last night with my husband which has been around for years, Q, it was amazing to me what that man would do for his son to have a new heart, and even so that a hospital would put a life on the line for money, it was just amazing to me and I got some peace that there are places like St. Judes that wouldnt ever turn a child away. I thought of everyone here and tears ran down my face thinking what each of us and our families have to go through! I am glad your at peace with your decision. I dont know if I could or couldnt be I suppose if I ever have to get to that point I guess I will know then. But for you I am glad you have found peace, there is nothing greater than having that because it makes everything else seem so small when you have it and without it everything is so big. I know Kaleb has a great mom and has many years with his mom along with your girls! Hang in there, chin up and enjoy each day for it is! Sandie > > Hello all. I have been busy reading all the posts, but haven't > replied much. I have been consumed with my doctors, etc. I am > officially " withdrawn " from the transplant evaluation and listing. My > heart problems, my antigen count, my own perspective...all played a > role in the decision. Transplant is not going to be an option for > me. I am not disappointed, but rather, I am relieved to a degree. I > slept for many hours yesterday as the news really hit me. I guess the > stress relief was what I needed. I am thankful for each and every day > that I have and I am glad that I am still able to do so many things. > I know there will come a day when I will not be so lucky, and I will > face those days " head on " . I am especially thankful for this group > and how caring everyone is. > Next week I see a neurologist at Cleveland Clinic and then on to the > sleep study! I am almost certain I will then be equipped with a CPAP > too. > God Bless, > > Tina > IPF 04/07 PH 11/07 Ohio > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Thanks, Mama-Sher, I think of you often too. I have shared so much with you and truly appreciate your counselor's point of view. I am a strong person, but I too am weak at times and need the gentle tug to keep me standing upright. My daughter was in Oregon recently and talked so much about it's beauty. She works at a small coffee house, but they send her to many coffee shows and some day I hope she and I can travel together to visit places and people that have touched our lives. You are on my list! I was the youngest person in my pre-transplant evaluation group. Each person at a different stage of this disease. One person was not even oxygen dependent. They were all somewhat envious of me for my age was the best factor in the transplant process. I didn't share with them my other health problems that I knew would/could preclude me. God Bless, Tina IPF 04/07 PH 11/07 Ohio > > Tina...I'm much older than you but transplant is not an option for me either. I too feel a sense of relief. > I think of you and Kaleb often. > warm hugs to you both. > Mama-Sher, 69; IPF, 3-06, OR. > Don't fret about tomorrow, God is already there! > hello everyone > > > Hello all. I have been busy reading all the posts, but haven't > replied much. I have been consumed with my doctors, etc. I am > officially " withdrawn " from the transplant evaluation and listing. My > heart problems, my antigen count, my own perspective...all played a > role in the decision. Transplant is not going to be an option for > me. I am not disappointed, but rather, I am relieved to a degree. I > slept for many hours yesterday as the news really hit me. I guess the > stress relief was what I needed. I am thankful for each and every day > that I have and I am glad that I am still able to do so many things. > I know there will come a day when I will not be so lucky, and I will > face those days " head on " . I am especially thankful for this group > and how caring everyone is. > Next week I see a neurologist at Cleveland Clinic and then on to the > sleep study! I am almost certain I will then be equipped with a CPAP > too. > God Bless, > > Tina > IPF 04/07 PH 11/07 Ohio > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Mama Sher: As we all know, divorce is never easy. Up to this point, I have just refused to talk to Ebby about the divorce. I told him to do whatever it is he wants to do and I will respond accordingly. If I am served divorce papers, I will hire a lawyer. Until then, my only plans include being happy that I don't have to face him every day and enjoying my days the best that I can. Don't be fooled by my optimism, I am sad and lonely at times, but I try to think of all of the positive things that I can. Kaleb keeps me busy and I can't be sad around him; he's too much fun. My daughter was in North Plains, Oregon. She visited a facility called " Oregon Coffee Roasters " . The coffee shop she works at buys all of their daily coffee blends from that company. She was actually in that area for a coffee convention in Seattle and they rented a car and drove to Oregon (and got a speeding ticket too!). She said Oregon reminded her of home (our farm). Our farm is in the Appalachian Mountains and we have lots of hills, trees, and beautiful seasons. The winters are harsh, but the summers are blissful! It's never too hot, and there's always a breeze. She loves the outdoors and takes lots of pictures - as you can see on my posts. She takes most of the pictures in the family. The thing I miss the most about being back home is the mountains and the scenery (everywhere you go). Here, in Ohio, it is flat and lifeless looking. And, there aren't very many trees around here. When a storm comes in, it's awful. We are far enough away from Lake Erie to avoid most of the " lake effect " weather, but it still gets pretty nasty. God Bless, Tina IPF 04/07 PH 11/07 Ohio > > > > Tina...I'm much older than you but transplant is not an option for > me either. I too feel a sense of relief. > > I think of you and Kaleb often. > > warm hugs to you both. > > Mama-Sher, 69; IPF, 3-06, OR. > > Don't fret about tomorrow, God is already there! > > hello everyone > > > > > > Hello all. I have been busy reading all the posts, but haven't > > replied much. I have been consumed with my doctors, etc. I am > > officially " withdrawn " from the transplant evaluation and > listing. My > > heart problems, my antigen count, my own perspective...all > played a > > role in the decision. Transplant is not going to be an option > for > > me. I am not disappointed, but rather, I am relieved to a > degree. I > > slept for many hours yesterday as the news really hit me. I > guess the > > stress relief was what I needed. I am thankful for each and > every day > > that I have and I am glad that I am still able to do so many > things. > > I know there will come a day when I will not be so lucky, and I > will > > face those days " head on " . I am especially thankful for this > group > > and how caring everyone is. > > Next week I see a neurologist at Cleveland Clinic and then on to > the > > sleep study! I am almost certain I will then be equipped with a > CPAP > > too. > > God Bless, > > > > Tina > > IPF 04/07 PH 11/07 Ohio > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Tina... yes, we all do know that divorce is never easy. But, it does sound like you are doing what needs to be done with a good attitude. There is that hidden blessing that you don't have to face him every day. When I first looked at your pictures of the farm I thought they looked like Oregon too. The pictures are really beautiful! Hope your weekend will be a good one. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! hello everyone> > > > > > Hello all. I have been busy reading all the posts, but haven't > > replied much. I have been consumed with my doctors, etc. I am > > officially "withdrawn" from the transplant evaluation and > listing. My > > heart problems, my antigen count, my own perspective...all > played a > > role in the decision. Transplant is not going to be an option > for > > me. I am not disappointed, but rather, I am relieved to a > degree. I > > slept for many hours yesterday as the news really hit me. I > guess the > > stress relief was what I needed. I am thankful for each and > every day > > that I have and I am glad that I am still able to do so many > things. > > I know there will come a day when I will not be so lucky, and I > will > > face those days "head on". I am especially thankful for this > group > > and how caring everyone is. > > Next week I see a neurologist at Cleveland Clinic and then on to > the > > sleep study! I am almost certain I will then be equipped with a > CPAP > > too.> > God Bless,> > > > Tina> > IPF 04/07 PH 11/07 Ohio> >> Quote Link to comment Share on other sites More sharing options...
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