Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 Bruce, What sad news about Don. I appreciate you keeping us up to date. must be a mess. Please send my love and support to them both. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Bruce Moreland wrote: Just an update on Don. This is an email from K. which I got her permission to post here. Don was sent home from the U of Chicago with the news that there was nothing more that they could do for him and "Oh yes, he would be remiss if he didn't suggest a living will and power of attorney. Our boys were with us and we just felt like we had been slugged. Needless to say it was not a fun ride home. We suggested transplant and they said he was too old and there were several things against him. I mentioned that we knew several who still would do transplant on older patients and the doc said by all means check it out. Don said "NO, no more"! So we came home and he has been out very little since then. He has basically given up, which is no surprise to anyone. He spends most of his time either in the chair or in bed sleeping. He lately has been walking and talking in his sleep and has fallen a couple of times, one ended in a trip to the ER for stitches. After our trip to Chicago he mentioned that it is time to contact hospice and so we can get everyone ready for the transition. That is what we did. Hospice is not here so much for him as much as for me. He is well taken care of, but I am going to need someone to call on in the middle of the night if things go awry. The RN on the case is a friend of mine and just lives aroundd the corner. That is about all there is going on here. I try to cope on a day by day basis. No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.138 / Virus Database: 270.4.7/1546 - Release Date: 7/11/2008 6:47 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 I think she's dealing pretty well with the reality and trying to take care of herself. I think this disease hits us all very different and sometimes feel like the more active, more outdoors type you were before the more difficult it and other diseases were. I didn't have to give up farming or hunting or basketball or track or mowing my lawn. I either never did some of those things or long ago had to give up the others so it didn't change my life as much as Don's. Logically, also, I had a great interest in things that I can still do, such as the internet. > > > > > Just an update on Don. This is an email from K. which I got her > > permission to post here. > > > > Don was sent home from the U of Chicago with the news that there was > > nothing more that they could do for him and " Oh yes, he would be remiss > > if he didn't suggest a living will and power of attorney. Our boys > > were with us and we just felt like we had been slugged. Needless to say > > it was not a fun ride home. We suggested transplant and they said he > > was too old and there were several things against him. > > > > I mentioned that we knew several who still would do transplant on older > > patients and the doc said by all means check it out. > > > > Don said " NO, no more " ! So we came home and he has been out very > > little since then. He has basically given up, which is no surprise to > > anyone. He spends most of his time either in the chair or in bed > > sleeping. He lately has been walking and talking in his sleep and has > > fallen a couple of times, one ended in a trip to the ER for stitches. > > After our trip to Chicago he mentioned that it is time to contact > > hospice and so we can get everyone ready for the transition. That is > > what we did. Hospice is not here so much for him as much as for me. He > > is well taken care of, but I am going to need someone to call on in the > > middle of the night if things go awry. The RN on the case is a friend > > of mine and just lives aroundd the corner. That is about all there is > > going on here. I try to cope on a day by day basis. > > > > > > > >No virus found in this incoming message. > >Checked by AVG - http://www.avg.com > >Version: 8.0.138 / Virus Database: 270.4.7/1546 - Release Date: 7/11/2008 6:47 AM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 Such sad news. Being a member of this group gives me such a strong feeling of kinship that reading this post about Don is the same as reading about my brother. In a way I cannot adequately describe, Don is my brother, just as all of you are my brothers and sisters. Jack79/IPF - UIP/dx06/05 Maine Don and Kennelly Just an update on Don. This is an email from K. which I got herpermission to post here.Don was sent home from the U of Chicago with the news that there wasnothing more that they could do for him and "Oh yes, he would be remissif he didn't suggest a living will and power of attorney. Our boyswere with us and we just felt like we had been slugged. Needless to sayit was not a fun ride home. We suggested transplant and they said hewas too old and there were several things against him.I mentioned that we knew several who still would do transplant on olderpatients and the doc said by all means check it out.Don said "NO, no more"! So we came home and he has been out verylittle since then. He has basically given up, which is no surprise toanyone. He spends most of his time either in the chair or in bedsleeping. He lately has been walking and talking in his sleep and hasfallen a couple of times, one ended in a trip to the ER for stitches. After our trip to Chicago he mentioned that it is time to contacthospice and so we can get everyone ready for the transition. That iswhat we did. Hospice is not here so much for him as much as for me. Heis well taken care of, but I am going to need someone to call on in themiddle of the night if things go awry. The RN on the case is a friendof mine and just lives aroundd the corner. That is about all there isgoing on here. I try to cope on a day by day basis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 , This news just breaks my heart. So much of our news here seems to be sad lately, but that is the nature of this group. Even though we try to keep one another buoyed up with good cheer, we know that we have these bridges to cross. I fight daily the urge to say, o.k. enough already. It will be a peaceful day for me when I finally do that. This battle is so tiring. I understand exactly how he feels. I hope that you all can accept his decision and spend these days and weeks just loving each other. I do understand that the grieving is harder for the family than for the patient. I can see it on the faces of my husband and my friends. My heart is touched with your grief, . Please feel free to post here. I for one have missed you like crazy and worried about you and Don. Just hold onto the hand of God and we will be holding the other hand. We are all here for you. Much love for Don. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> > Just an update on Don. This is an email from K. which I got her> permission to post here.> > Don was sent home from the U of Chicago with the news that there was> nothing more that they could do for him and "Oh yes, he would be remiss> if he didn't suggest a living will and power of attorney. Our boys> were with us and we just felt like we had been slugged. Needless to say> it was not a fun ride home. We suggested transplant and they said he> was too old and there were several things against him.> > I mentioned that we knew several who still would do transplant on older> patients and the doc said by all means check it out.> > Don said "NO, no more"! So we came home and he has been out very> little since then. He has basically given up, which is no surprise to> anyone. He spends most of his time either in the chair or in bed> sleeping. He lately has been walking and talking in his sleep and has> fallen a couple of times, one ended in a trip to the ER for stitches. > After our trip to Chicago he mentioned that it is time to contact> hospice and so we can get everyone ready for the transition. That is> what we did. Hospice is not here so much for him as much as for me. He> is well taken care of, but I am going to need someone to call on in the> middle of the night if things go awry. The RN on the case is a friend> of mine and just lives aroundd the corner. That is about all there is> going on here. I try to cope on a day by day basis.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 Bruce... thanks for the update. This is indeed sad news. Too many of our members are currently facing transition. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Don and Kennelly Just an update on Don. This is an email from K. which I got herpermission to post here.Don was sent home from the U of Chicago with the news that there wasnothing more that they could do for him and "Oh yes, he would be remissif he didn't suggest a living will and power of attorney. Our boyswere with us and we just felt like we had been slugged. Needless to sayit was not a fun ride home. We suggested transplant and they said hewas too old and there were several things against him.I mentioned that we knew several who still would do transplant on olderpatients and the doc said by all means check it out.Don said "NO, no more"! So we came home and he has been out verylittle since then. He has basically given up, which is no surprise toanyone. He spends most of his time either in the chair or in bedsleeping. He lately has been walking and talking in his sleep and hasfallen a couple of times, one ended in a trip to the ER for stitches. After our trip to Chicago he mentioned that it is time to contacthospice and so we can get everyone ready for the transition. That iswhat we did. Hospice is not here so much for him as much as for me. Heis well taken care of, but I am going to need someone to call on in themiddle of the night if things go awry. The RN on the case is a friendof mine and just lives aroundd the corner. That is about all there isgoing on here. I try to cope on a day by day basis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 Bruce, Could you please tell she can call me or e-mail me any time she would like! I have felt bad about the controversy, but never felt that being so new, I had the right to open my big mouth! At this point, she may not want to get in touch, but I want her to know she can. I'll be here anytime! Thanks, Terry Terry Pennisi 11/07 IPF Nevada Subject: Don and KennellyTo: Breathe-Support Date: Saturday, July 12, 2008, 4:36 AM Just an update on Don. This is an email from K. which I got herpermission to post here.Don was sent home from the U of Chicago with the news that there wasnothing more that they could do for him and "Oh yes, he would be remissif he didn't suggest a living will and power of attorney. Our boyswere with us and we just felt like we had been slugged. Needless to sayit was not a fun ride home. We suggested transplant and they said hewas too old and there were several things against him.I mentioned that we knew several who still would do transplant on olderpatients and the doc said by all means check it out.Don said "NO, no more"! So we came home and he has been out verylittle since then. He has basically given up, which is no surprise toanyone. He spends most of his time either in the chair or in bedsleeping. He lately has been walking and talking in his sleep and hasfallen a couple of times, one ended in a trip to the ER for stitches. After our trip to Chicago he mentioned that it is time to contacthospice and so we can get everyone ready for the transition. That iswhat we did. Hospice is not here so much for him as much as for me. Heis well taken care of, but I am going to need someone to call on in themiddle of the night if things go awry. The RN on the case is a friendof mine and just lives aroundd the corner. That is about all there isgoing on here. I try to cope on a day by day basis. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.