Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Sher, Yes. I'm on my way to NY for my niece 's first communion. This visit to Chincoteague is a little side trip along the way. I went out to the Wildlife Refuge on Assateague this morning. Saw some ponies and then walked the beach a little. This afternoon I stopped by the Nasa Visitor Center at the Wallops Flight Facility. I'm a child of the space program. The Apollo astronauts were the heroes of my childhood. So this visit was to indulge the wide eyed 10 year old still inside me and the exhibits did not disappoint and it was free! (Bonus!) Tonight for supper I'm going to buzz out to the seafood shack next door for some shrimp! Tomorrow morning I will be back on my way to NY. I have a reservation on the 11:15am ferry from Lewes DE to Cape May NJ. From there it's only about 185 miles to my sisters house. So that's where I'm at. Once I'm at my sister's I'll probably not be on much as Alim, Sophie, Jack, will no doubt keep me busy. I already have requests from Sophia and Jack that they want to learn how to knit. They are 5 and 6... this should be interesting! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Caro/MB/Walt Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 MB...sounds like you are having a wonderful time and enjoying what you want to see. Drive careful................ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Caro/MB/Walt Caro... I really admire your spunk to do the exercise/outside for a walk....! I'm going to rehab again...went previously.. .a couple different times....now will go again. Today. Really need the conditioning. Hey, take it easy on the new "toy". I know how some of us are...we go at things like we're killing snakes with a stick! MB... You paint a wonderful picture of you on the little deck. I missed something... .are you visiting family in NY? Walt... You do have a tough decision to make! Do the Drs. have some sort of educated guess by scans/x-rays/ blood work what strain you have? I'm not a good person to ask because I will not do a lung bio....there is no guarantee it will be absolutely definitive and if it's IPF (you don't say what strain you have) there is no treatment/cure anyway. Prednisone is about the only med used and it has ghastly side effects....I won't take the med either. There are different opinions Walt....Bruce had a bio, and although painful, he would do it again....I'm sure he will respond to you. Are you on O2....do you need more O2??? God guide you........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 Because of the multiple infections she thought I might be better off in a hospital. HA! I was put on Ativan to control the shaking and once I get that under control I won't have a problem with the cpap. Ativan is used in an IV prior to anesthesia when having surgery. I am to the point I would not ever consider surgery for anything. Just the thought of going to more doctors ie Parkinsons makes me nauseous. The more doctors the more dx's. Steve59 from WA IPF 2006 Parkinsons 2008 Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Board up/downs todayDate: Fri, 2 May 2008 09:58:54 -0700 Steve...well, as I said to Bruce....DAMNIT! I'm sorry friend there is now something else. The dx sucks but I know there are meds to control the shaking and that is a good thing for you. I can't blame you for wanting to go on the cruise! These "adventures" are so important to us. What were your drs concerns about the cruise? You mention "pre surgery type drugs"..... You are not in line literally, for surgery, are you? I don't THINK you are, just checking... How do you feel about getting a second opinion for Parkinson's??? It sure couldn't hurt. Especially with all the additional meds you'll be taking. DAMNIT! I just hate it that you have to endure so much..................! Sleeping better will make such a difference for you Steve! How are you doing w/your cpap? I made reservations for the 14th, 15th! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Board up/downs today Sher, Bruce, Beth, K, Kathie, Joy, Joyce and all interested. The board seems to have raised more questions today than I can grasp, so I'll add my own. Saw my Tacoma pulmonologist today. back on imuran my sats seem to have stabilized and pursed lip breathing some one on this board and my oximeter seems to help me control them. However I had a fever and my shakes/tremors were noticeably worse. He called my pcp and I was able to slip in late this afternoon and have sinus, ear, and throat infections. Strong antibiotics prescribed of course and even though I had seen my pcp just 2 weeks ago she also knew the shaking was worse so between the 2 doctors I now also have a clinical daignosis of Parkinson, and on a full course of drugs for that. The pcp was concerned about our cruise but I told her I was going hell or high water. I've been given some pre surgery type drugs so I can sleep again and be able(concious) to drive my three wheeler and click a camera. The levadopa should control the Parkinsons in a couple days. So life is still basically good compared to the alternative. We all have to try to keep ourselves and air family up. Steve59 from WA IPF 2006 Parkinsons 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 Steve...hey, no response from you that we've made reservations and Joy plans on being there as well as Kathie/husband. Kathie live fairly close so don't know if they will stay over...................... Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Board up/downs today Sher, Bruce, Beth, K, Kathie, Joy, Joyce and all interested. The board seems to have raised more questions today than I can grasp, so I'll add my own. Saw my Tacoma pulmonologist today. back on imuran my sats seem to have stabilized and pursed lip breathing some one on this board and my oximeter seems to help me control them. However I had a fever and my shakes/tremors were noticeably worse. He called my pcp and I was able to slip in late this afternoon and have sinus, ear, and throat infections. Strong antibiotics prescribed of course and even though I had seen my pcp just 2 weeks ago she also knew the shaking was worse so between the 2 doctors I now also have a clinical daignosis of Parkinson, and on a full course of drugs for that. The pcp was concerned about our cruise but I told her I was going hell or high water. I've been given some pre surgery type drugs so I can sleep again and be able(concious) to drive my three wheeler and click a camera. The levadopa should control the Parkinsons in a couple days. So life is still basically good compared to the alternative. We all have to try to keep ourselves and air family up. Steve59 from WA IPF 2006 Parkinsons 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 Must have got lost in data space. Vickie and I have reservations for Saturday night only and look forward to it very much. Steve59 from WA IPF 2006 Parkinsons 2008 Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: SherDate: Fri, 2 May 2008 14:22:35 -0700 Steve...hey, no response from you that we've made reservations and Joy plans on being there as well as Kathie/husband. Kathie live fairly close so don't know if they will stay over...................... Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Board up/downs today Sher, Bruce, Beth, K, Kathie, Joy, Joyce and all interested. The board seems to have raised more questions today than I can grasp, so I'll add my own. Saw my Tacoma pulmonologist today. back on imuran my sats seem to have stabilized and pursed lip breathing some one on this board and my oximeter seems to help me control them. However I had a fever and my shakes/tremors were noticeably worse. He called my pcp and I was able to slip in late this afternoon and have sinus, ear, and throat infections. Strong antibiotics prescribed of course and even though I had seen my pcp just 2 weeks ago she also knew the shaking was worse so between the 2 doctors I now also have a clinical daignosis of Parkinson, and on a full course of drugs for that. The pcp was concerned about our cruise but I told her I was going hell or high water. I've been given some pre surgery type drugs so I can sleep again and be able(concious) to drive my three wheeler and click a camera. The levadopa should control the Parkinsons in a couple days. So life is still basically good compared to the alternative. We all have to try to keep ourselves and air family up. Steve59 from WA IPF 2006 Parkinsons 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2008 Report Share Posted May 2, 2008 Steve...how far away do you live from Olympia? I'm looking forward to it too. HAVE A WONDERFUL CRUISE! I'll miss ya.......... Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Board up/downs today Sher, Bruce, Beth, K, Kathie, Joy, Joyce and all interested. The board seems to have raised more questions today than I can grasp, so I'll add my own. Saw my Tacoma pulmonologist today. back on imuran my sats seem to have stabilized and pursed lip breathing some one on this board and my oximeter seems to help me control them. However I had a fever and my shakes/tremors were noticeably worse. He called my pcp and I was able to slip in late this afternoon and have sinus, ear, and throat infections. Strong antibiotics prescribed of course and even though I had seen my pcp just 2 weeks ago she also knew the shaking was worse so between the 2 doctors I now also have a clinical daignosis of Parkinson, and on a full course of drugs for that. The pcp was concerned about our cruise but I told her I was going hell or high water. I've been given some pre surgery type drugs so I can sleep again and be able(concious) to drive my three wheeler and click a camera. The levadopa should control the Parkinsons in a couple days. So life is still basically good compared to the alternative. We all have to try to keep ourselves and air family up. Steve59 from WA IPF 2006 Parkinsons 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 I forgot to change the subject line again Holy cow, when will I learn? K Kennelly wrote: So, you are Elliot? Have you ever read A Child Called It? That was about as stark as I have ever read. I will send you a check for 10.00. I can find your address I'll get it in the mail. Don't do anything until you get my check. I'll try to get it in the mail this week. If I can't get your address I'll let you know. K Central IlSher Bauman <bofuswbcable (DOT) net> wrote: K...I don't think you missed anything about Irene........ The name of the book is, "Listen to the Silence"........You can look on Amazon.com and see the covers......... Actually, we like to watch golf. Rich plays and I've tried but all I do is rip up the grass ! But I love to watch it on TV. Most of the 'older' players have died now and other people that Rich knew. We're talking back to the 40s thru the 80s. His dad died in 1991 and had been retired for a long while. Rich will be 78 in June but he looks about late 60s. He exercises every day and it pays off ok. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Thanks Jim, I really feel lots-a-love. Hey, by the way has anyone heard from Irene? K Illjames wallman <james_wallman> wrote: ............I'm glad you are here. I believe that is pro-active. God knows that our spouses take a whuppin' right along with us. I have always believed that this whole thing is way harder on my wife than on me.........I'm in it, she can only stand by........jim Kennelly <l_kennelly> wrote: Yes, I certainly feel the brother/sisterhood of all of this. I thank you so much for allowing me in your fold. I think there are some who are are of the opinion that I shouldn't be here since I'm not a patient, but Don really relies on you guys and I read many of the posts to him. I guess I might say that I am Don's voice. I can't just sit here and do nothing and you guys have given me so much. (I think at one of the chats someone said that Don is on the website in spirit. He is now down to 10mg of prednisone starting today and his cough is returning. Not as bad as before but it is returning. Sigh! We will soon be off to rehab for him and I'm going to the Y to walk and swim. That should perk me up. LInda K Central IlGwynne Keyland <gwynneksbcglobal (DOT) net> wrote: ,Congratulations on getting listed. I hope you get thecall very soon and can stop putting your life on hold.For me, it has been one month since transplant and ithas been a miracle.,I'm so sorry you keep getting hit while you're down.I hope they figure out the right combination of medsto get you feeling better and some better answers soon.Your attitude is admirable, as always. Have fun on yourtrip - be safe.Joyce,I'm not believin your catheter is being such a bugger.You can stay in anger mode as long as you like, alongwith pout mode. I'm sorry about the anemia and foryou feeling so wiped out. And yes, it IS like a brotherhoodin my experience. You'd think after the way you've beentreated that they'd be doing cartwheels to accommodateyou (in a perfect world only, I guess). As always, you arein my prayers.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-09 atUTHSC San , TX 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. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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. Try it now. 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. Try it now. 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. Try it now. 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. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 K...are you asking ME if I'm Elliot??? I'm confused........ Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Thanks Jim, I really feel lots-a-love. Hey, by the way has anyone heard from Irene? K Illjames wallman <james_wallman> wrote: ............I'm glad you are here. I believe that is pro-active. God knows that our spouses take a whuppin' right along with us. I have always believed that this whole thing is way harder on my wife than on me.........I'm in it, she can only stand by........jim Kennelly <l_kennelly> wrote: Yes, I certainly feel the brother/sisterhood of all of this. I thank you so much for allowing me in your fold. I think there are some who are are of the opinion that I shouldn't be here since I'm not a patient, but Don really relies on you guys and I read many of the posts to him. I guess I might say that I am Don's voice. I can't just sit here and do nothing and you guys have given me so much. (I think at one of the chats someone said that Don is on the website in spirit. He is now down to 10mg of prednisone starting today and his cough is returning. Not as bad as before but it is returning. Sigh! We will soon be off to rehab for him and I'm going to the Y to walk and swim. That should perk me up. LInda K Central IlGwynne Keyland <gwynneksbcglobal (DOT) net> wrote: ,Congratulations on getting listed. I hope you get thecall very soon and can stop putting your life on hold.For me, it has been one month since transplant and ithas been a miracle.,I'm so sorry you keep getting hit while you're down.I hope they figure out the right combination of medsto get you feeling better and some better answers soon.Your attitude is admirable, as always. Have fun on yourtrip - be safe.Joyce,I'm not believin your catheter is being such a bugger.You can stay in anger mode as long as you like, alongwith pout mode. I'm sorry about the anemia and foryou feeling so wiped out. And yes, it IS like a brotherhoodin my experience. You'd think after the way you've beentreated that they'd be doing cartwheels to accommodateyou (in a perfect world only, I guess). As always, you arein my prayers.Hugs and blessings,Gwynnie 57 Single-lung Transplant on 4-3-09 atUTHSC San , TX 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. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. 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. Try it now. 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. Try it now. 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. Try it now. 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. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Hi He says he is so very weak and is suffering from cold. He is always freezing when he has this bad times. I don't really know if he was struggling to breathe. He checked his O2 and it was low. He didn't say how he was feeling. Tonight he said he doesn't ache all over like he lots of times does. I know he is fearful, but honestly I reflect him. When he is scared I get scared. I really don't know how sick he really is. I don't know about this darn disease. I know this isn't the Don I know. I don't think the doc thinks he is very bad, but that is not what I am feeling from Don. Does all of this make sense? I know he doesn't talk to you guys but that is him. He is an isolationist. He would be happy to just isolate himself and stay put. I kind of push him into more than he would like to be pushed into. He really likes the liquid because it is so much more portable. I will talk to the RT tomorrow. He would just walk in and do his thing and never tell her anything. Thanks Sher for answering me. K illinois Sher Bauman wrote: K....Don uses liquid. I don't, so what I wrote may not 'fit' his situation and surely the liquid is too small for a back bag type of thing that I am familiar with. I'm sure a case came w/his O2....is it the case he doesn't like?? Yes, I far as I know, liquid does evaporate. Does Don like the liquid or is he wanting to change? It's kinda hard to second guess Don when it's translated through what you think..... Was he weak last night because he couldn't breathe? Did you try turning up the O2 a bit??? "You think he might be struggling with SATS dropping"......what does he say he is struggling with? Breathing, pain, fear????? Whenever there are significant changes in Don, you bet....call someone. But you need to be specific w/drs unless he is the one who talks to them. Is he?? Otherwise the dr will only hear your take on it, as I do sometimes. Since he is in rehab, talk to his RT as well if the dr can't be reached. His RT is familiar with him in particular and they have good knowledge in general. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher/BOA/ lou Hi Sher, Well, he wasn't carrying around "that" big of a bag in my estimation. His problem is that he isn't use to carrying around a purse and anything is too big. lol However, he does like the little liquid O2 container. It is small and he doesn't have to wear it around his shoulder or back. When he mows (could that be increasing his cough?) the thing around the back doesn't work well. However, the liquid O2 doesn't hold O2 over time. It seeps out when he is finished wearing it. Struggling to figure out what works. Last night he was a mess. It was so hard for him to get to bed he was so weak. It scared us to death so I just sat on his bed until he went to sleep talking about our childhoods. Anything to get his mind off what is going on. This morning he is a little better. I kind of think he might be struggling with what lou was struggling with yesterday and I was hoping I might still have the messages in the deleted file, but I don't . His O2 was 90 when he left the bedroom this morning (he had the O2 on) and by the time he was in the kitchen it was 85. I told him about lou and that we might have to consider moving it up a notch. He is suppose to be on 2 to sleep but 3 during exercise. It just always stays on 2 unless he takes a shower. Maybe lou will read this and answer me what she finally did. That is what is so wonderful about this board, there is always someone who has walked down that path. I'm assuming that we will need to call pulmo tomorrow. Maybe the rehab director will be able to shed some light. Does this make sense Sher? 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. Try it now. 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. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 It said on the book that the author was Elliot. I just thought that you used a pen name like Mark Twain. 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. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 K....Can you go to the dr with Don and listen to and talk with Don so you can know more about what is going on with him? Maybe that would help both of you. I know it must be very hard to work your way through a disease that neither of you understand. Ask for help . A dr....RT...someone right there close who can advise you. You will need to know if Don is some sort of crisis. O2 can be turned up if needed but there are other symptoms that only his dr can talk about to you two. Knowledge is so powerful against the unknown! If you don't really know how sick he is, make it a point to find out how sick he really is. Then you can be the help you want and need to be. It seems strange you say the dr doesn't think Don is 'very bad'.....what in the world does the dr think IS wrong with Don? Have you considered another dr that is more on your wave length of need? Do you have a speaker phone? Use it next chat...he can hear us and get acquainted and perhaps will join in at a later chat. Perhaps Don is shy by nature............. BTW. You must be looking at the wrong book. There are other books with the same title of "Listen to the Silence".....look for my name, Sher Bauman. Have a good night. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Sher It said on the book that the author was Elliot. I just thought that you used a pen name like Mark Twain. 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. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 , The cold is a cold that cannot be explained. It starts deep in my bones and just chills me so badly. Even when everybody else is comfortable, I am cold. I drag my old quilt around with me. , all you can do sometimes is just what you are doing. Just sit with him, be there. Maybe pushing him into situations that make him uncomfortable is not the best thing. It is just so difficult to see every part of your normal routine breaking into peices and every last ounce of control taken away. Sometimes I wonder what is left of me. The me I used to be. I know Don has thoughts just like mine. Men just do not verbalize like we women do. Just love him....just like he is....all broken and bruised. I am praying that he will break through the pain and fear that is this disease and find happiness again. You can just be there when that happens. Sometimes you just can't fix it. 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> K....Don uses liquid. I don't, so what I wrote may not 'fit' his situation and surely the liquid is too small for a back bag type of thing that I am familiar with. I'm sure a case came w/his O2....is it the case he doesn't like?? > Yes, I far as I know, liquid does evaporate. Does Don like the liquid or is he wanting to change?> It's kinda hard to second guess Don when it's translated through what you think.....> Was he weak last night because he couldn't breathe? Did you try turning up the O2 a bit???> "You think he might be struggling with SATS dropping"......what does he say he is struggling with? Breathing, pain, fear?????> Whenever there are significant changes in Don, you bet....call someone. But you need to be specific w/drs unless he is the one who talks to them. Is he?? Otherwise the dr will only hear your take on it, as I do sometimes. Since he is in rehab, talk to his RT as well if the dr can't be reached. His RT is familiar with him in particular and they have good knowledge in general.> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!> > Re: Sher/BOA/ lou> > > Hi Sher,> Well, he wasn't carrying around "that" big of a bag in my estimation. His problem is that he isn't use to carrying around a purse and anything is too big. lol However, he does like the little liquid O2 container. It is small and he doesn't have to wear it around his shoulder or back. When he mows (could that be increasing his cough?) the thing around the back doesn't work well. However, the liquid O2 doesn't hold O2 over time. It seeps out when he is finished wearing it. Struggling to figure out what works. > Last night he was a mess. It was so hard for him to get to bed he was so weak. It scared us to death so I just sat on his bed until he went to sleep talking about our childhoods. Anything to get his mind off what is going on. This morning he is a little better.> I kind of think he might be struggling with what lou was struggling with yesterday and I was hoping I might still have the messages in the deleted file, but I don't . His O2 was 90 when he left the bedroom this morning (he had the O2 on) and by the time he was in the kitchen it was 85. I told him about lou and that we might have to consider moving it up a notch. He is suppose to be on 2 to sleep but 3 during exercise. It just always stays on 2 unless he takes a shower. Maybe lou will read this and answer me what she finally did.> That is what is so wonderful about this board, there is always someone who has walked down that path. I'm assuming that we will need to call pulmo tomorrow. Maybe the rehab director will be able to shed some light. > > Does this make sense Sher? > > > > > > 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. Try it now. > > > > > > > > > > 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. Try it now.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Thanks Joyce, those are wise words. I told him you too are experiencing cold. I guess just to know he isn't the only one helps. K IllinoisJoyce wrote: , The cold is a cold that cannot be explained. It starts deep in my bones and just chills me so badly. Even when everybody else is comfortable, I am cold. I drag my old quilt around with me. , all you can do sometimes is just what you are doing. Just sit with him, be there. Maybe pushing him into situations that make him uncomfortable is not the best thing. It is just so difficult to see every part of your normal routine breaking into peices and every last ounce of control taken away. Sometimes I wonder what is left of me. The me I used to be. I know Don has thoughts just like mine. Men just do not verbalize like we women do. Just love him....just like he is....all broken and bruised. I am praying that he will break through the pain and fear that is this disease and find happiness again. You can just be there when that happens. Sometimes you just can't fix it. 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> K....Don uses liquid. I don't, so what I wrote may not 'fit' his situation and surely the liquid is too small for a back bag type of thing that I am familiar with. I'm sure a case came w/his O2....is it the case he doesn't like?? > Yes, I far as I know, liquid does evaporate. Does Don like the liquid or is he wanting to change?> It's kinda hard to second guess Don when it's translated through what you think.....> Was he weak last night because he couldn't breathe? Did you try turning up the O2 a bit???> "You think he might be struggling with SATS dropping"......what does he say he is struggling with? Breathing, pain, fear?????> Whenever there are significant changes in Don, you bet....call someone. But you need to be specific w/drs unless he is the one who talks to them. Is he?? Otherwise the dr will only hear your take on it, as I do sometimes. Since he is in rehab, talk to his RT as well if the dr can't be reached. His RT is familiar with him in particular and they have good knowledge in general.> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!> > Re: Sher/BOA/ lou> > > Hi Sher,> Well, he wasn't carrying around "that" big of a bag in my estimation. His problem is that he isn't use to carrying around a purse and anything is too big. lol However, he does like the little liquid O2 container. It is small and he doesn't have to wear it around his shoulder or back. When he mows (could that be increasing his cough?) the thing around the back doesn't work well. However, the liquid O2 doesn't hold O2 over time. It seeps out when he is finished wearing it. Struggling to figure out what works. > Last night he was a mess. It was so hard for him to get to bed he was so weak. It scared us to death so I just sat on his bed until he went to sleep talking about our childhoods. Anything to get his mind off what is going on. This morning he is a little better.> I kind of think he might be struggling with what lou was struggling with yesterday and I was hoping I might still have the messages in the deleted file, but I don't . His O2 was 90 when he left the bedroom this morning (he had the O2 on) and by the time he was in the kitchen it was 85. I told him about lou and that we might have to consider moving it up a notch. He is suppose to be on 2 to sleep but 3 during exercise. It just always stays on 2 unless he takes a shower. Maybe lou will read this and answer me what she finally did.> That is what is so wonderful about this board, there is always someone who has walked down that path. I'm assuming that we will need to call pulmo tomorrow. Maybe the rehab director will be able to shed some light. > > Does this make sense Sher? > > > > > > 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. Try it now. > > > > > > > > > > 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. Try it now.> 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. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Sher I do go into the appointments because he couldn't talk for so long. Also, we CRS so we have each other to try to remember what the doc says. We are going to Chicago the 13th and we should be able to tell something then. He said today that he would even go for a transplant if they would still do it for him. It certainly would be an option to explore. Bruce said the trip to Chicago was such a learning experience that I think we need to do this. He went through the bypass surgery with a breeze and even knowing that this transplant is harder than the by pass he thinks it would be better than being in this cycle of the disease. Hopefully tomorrow will be a better day. He has rehab and I'm going to the Y again to get rid of some of my anxiety. Love ya girl. Thanks Oh, I'm planning on getting him on the line on Thursday. Hopefully. 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. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 K.... O2 needs are usually taken care of before you leave. Let Lincare know where you will be and they will take O2 there. Call them though for absolute information. Don't take chances. Know what you need before you go! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Here is the NEW deal for me.................................... The Home Medical Oxygen Company has been here ALL day long testing my levels of oxygen and what they gave me yesterday IS NOT doing the job good enough. They took out the concentrator all together, and I am now on 100% PURE LIQUID OXYGEN from the humungous tank in my bedroom. #5 continuous, it goes to 10 too if I ever need it. I use the backpack which has been changed to a "marathon" which I carry around the house without tubing following me everywhere I go. I am getting used to that. My oxy. level is now 97-98 and I am amazed at the last 6 months that no one suggested to me what I needed, no wonder I have become weak, and loss of breath when I eat and talk. If I can't talk, forget it... hhheeeAnyhow, that's what's going on in my world today and yesterday. I feel that my health really was starting to deteriote fast this past month with not getting enough. Therapist said I need at Least 5 continuous for right now. I won't miss that concentrator one single bit.Hope you all had a great day.Love, Lou 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. Try it now. 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. Try it now. Quote Link to comment Share on other sites More sharing options...
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