Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Joyce, I remember so well when I got mine. It was when I went home from the Hospice In patient place. Anyway, I didnt know it was coming. I cried and cried and said I would never sleep on it. I slept sitting straight on the couch cause I could not get my breath even in the recliner. We positioned the room so that the bed would be very very near our big bed and my husband and I could just reach out and touch one another . We got pretty sheets and a foam mattress for it. I tried a nice bedspread but it was just too heavy for me to manipulate. Anyway, took the rails off of the side that faced my husband but kept the rails up on the other side. I used the rails to help me turn positions because at that time, it just took too much breath. I hated that plastic sheet covering they had put on the bed but after getting the mattress, it helped. I found just the right position for sleeping . And when I got lonely, I would stretch out my hand and Tim's armm was always right there. It is a small bed, but once in a while, he would scrunch in it with me, just to be close and to calm when when I cried or got really anxious. I still hate the bed but have adjusted to it and am really glad for it. Just like the oxygen, I hate it but I also am glad for it. I am now on only liquid oxygen, two big tanks in the living room y'd together to get a higher flow. No noise, no heat and with my transtrachael neck thing, I dont even feel it at all. In fact, there are times I wonder if it is really going in my neck and my lungs. I am still on a very high flow, usually 10-12L and it plummets quickly, just like you. I am hoping that after my transtrachael matures (6 weeks) that I can use a lower rate but it really doesnt matter cause I dont feel it. No more nose bleeds, dry face or nasal prongs. I am still a little squeamish about putting it in and out for cleaning but my husband does it faithfully. My cough has begum to lessen and I seem to feel better. Just get out of breath so easily. I bought a pulse/ox against my doctors recommendation and she was right....I do panic when I see it go to 49 . If I sit completely still and do or say absolutely nothing, I can get it to stay at 88. But, once I get up......down it goes. I know dont use it so much. I KNOW when I am out of breath and seeing that low number just scares me. You know, I have proved all the doctors wrong so far and they are still amazed at how I am still alive. I know I am getting worse, but I still fight. Some days, not much fight in me...but other days, like today....well....I dont want to die yet. Assuming I am still alive and able to ride in a vehicle, we are renting an RV and going to attempt going to San in May. I have two children in Texas and friends in Dallas, Austin, Fort Worth and San Plenty of room in an RV for lots of liquid tanks. So, now I am fighting again...want to meet people and see my friends and family again. This time, not letting them see me in a hospital bed...but up. And Peggy, if you are reading this, my usband and I have started over in that book you sent me. Every night we read the days devotion. Thank you for it. I dont post much anymore but I still read. I wonder about Bud Kilman and Joanie. And Beth, I lived in Raleigh for 15 years. That is where we moved here from. Make sure and go to Burlington to the stores and isnt it wonderful there? My doctor was Dr. Harvey Marshall at Duke. Really good looking but not much personality. Talk to everyone later. L NSIPF 02/ PH 0/7 Transtrachael Oxygen Delivery Surgery 08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 it is great to hear from you. I cant wait to meet you in San and will be praying we all stay healthy enough to make it. Peggy's books are wonderful. She sent me one and It really helped. Take care you are an inspiration and I know this will help our Joyce feel better. IPF 2/07 IL --- Lentz wrote: > Joyce, > I remember so well when I got mine. It was when I > went home from the Hospice In patient place. > Anyway, I didnt know it was coming. I cried and > cried and said I would never sleep on it. I slept > sitting straight on the couch cause I could not get > my breath even in the recliner. We positioned the > room so that the bed would be very very near our big > bed and my husband and I could just reach out and > touch one another . We got pretty sheets and a foam > mattress for it. I tried a nice bedspread but it > was just too heavy for me to manipulate. Anyway, > took the rails off of the side that faced my husband > but kept the rails up on the other side. I used the > rails to help me turn positions because at that > time, it just took too much breath. I hated that > plastic sheet covering they had put on the bed but > after getting the mattress, it helped. I found just > the right position for sleeping . And when I got > lonely, I would stretch out my hand and Tim's armm > was always right there. It is a small bed, but once > in a while, he would scrunch in it with me, just to > be close and to calm when when I cried or got really > anxious. I still hate the bed but have adjusted to > it and am really glad for it. Just like the oxygen, > I hate it but I also am glad for it. I am now on > only liquid oxygen, two big tanks in the living room > y'd together to get a higher flow. No noise, no > heat and with my transtrachael neck thing, I dont > even feel it at all. In fact, there are times I > wonder if it is really going in my neck and my > lungs. I am still on a very high flow, usually > 10-12L and it plummets quickly, just like you. I am > hoping that after my transtrachael matures (6 weeks) > that I can use a lower rate but it really doesnt > matter cause I dont feel it. No more nose bleeds, > dry face or nasal prongs. I am still a little > squeamish about putting it in and out for cleaning > but my husband does it faithfully. My cough has > begum to lessen and I seem to feel better. Just get > out of breath so easily. I bought a pulse/ox > against my doctors recommendation and she was > right....I do panic when I see it go to 49 . If I > sit completely still and do or say absolutely > nothing, I can get it to stay at 88. But, once I > get up......down it goes. I know dont use it so > much. I KNOW when I am out of breath and seeing > that low number just scares me. You know, I have > proved all the doctors wrong so far and they are > still amazed at how I am still alive. I know I am > getting worse, but I still fight. Some days, not > much fight in me...but other days, like > today....well....I dont want to die yet. Assuming I > am still alive and able to ride in a vehicle, we are > renting an RV and going to attempt going to San > in May. I have two children in Texas and > friends in Dallas, Austin, Fort Worth and San > Plenty of room in an RV for lots of liquid > tanks. So, now I am fighting again...want to meet > people and see my friends and family again. This > time, not letting them see me in a hospital > bed...but up. And Peggy, if you are reading this, > my usband and I have started over in that book you > sent me. Every night we read the days devotion. > Thank you for it. > I dont post much anymore but I still read. I wonder > about Bud Kilman and Joanie. And Beth, I lived > in Raleigh for 15 years. That is where we moved > here from. Make sure and go to Burlington to the > stores and isnt it wonderful there? My doctor was > Dr. Harvey Marshall at Duke. Really good looking > but not much personality. > Talk to everyone later. > L > NSIPF 02/ PH 0/7 Transtrachael Oxygen Delivery > Surgery 08 ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 ... it's always so good to hear from you. Oh I hope you can get to San An and meet the folks but I feel worse because I know I won't be going and I would so like to meet you! I'm glad you are doing better today. I continue to pray for you. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Joyce/hospital bed Joyce, I remember so well when I got mine. It was when I went home from the Hospice In patient place. Anyway, I didnt know it was coming. I cried and cried and said I would never sleep on it. I slept sitting straight on the couch cause I could not get my breath even in the recliner. We positioned the room so that the bed would be very very near our big bed and my husband and I could just reach out and touch one another . We got pretty sheets and a foam mattress for it. I tried a nice bedspread but it was just too heavy for me to manipulate. Anyway, took the rails off of the side that faced my husband but kept the rails up on the other side. I used the rails to help me turn positions because at that time, it just took too much breath. I hated that plastic sheet covering they had put on the bed but after getting the mattress, it helped. I found just the right position for sleeping . And when I got lonely, I would stretch out my hand and Tim's armm was always right there. It is a small bed, but once in a while, he would scrunch in it with me, just to be close and to calm when when I cried or got really anxious. I still hate the bed but have adjusted to it and am really glad for it. Just like the oxygen, I hate it but I also am glad for it. I am now on only liquid oxygen, two big tanks in the living room y'd together to get a higher flow. No noise, no heat and with my transtrachael neck thing, I dont even feel it at all. In fact, there are times I wonder if it is really going in my neck and my lungs. I am still on a very high flow, usually 10-12L and it plummets quickly, just like you. I am hoping that after my transtrachael matures (6 weeks) that I can use a lower rate but it really doesnt matter cause I dont feel it. No more nose bleeds, dry face or nasal prongs. I am still a little squeamish about putting it in and out for cleaning but my husband does it faithfully. My cough has begum to lessen and I seem to feel better. Just get out of breath so easily. I bought a pulse/ox against my doctors recommendation and she was right....I do panic when I see it go to 49 . If I sit completely still and do or say absolutely nothing, I can get it to stay at 88. But, once I get up......down it goes. I know dont use it so much. I KNOW when I am out of breath and seeing that low number just scares me. You know, I have proved all the doctors wrong so far and they are still amazed at how I am still alive. I know I am getting worse, but I still fight. Some days, not much fight in me...but other days, like today....well....I dont want to die yet. Assuming I am still alive and able to ride in a vehicle, we are renting an RV and going to attempt going to San in May. I have two children in Texas and friends in Dallas, Austin, Fort Worth and San Plenty of room in an RV for lots of liquid tanks. So, now I am fighting again...want to meet people and see my friends and family again. This time, not letting them see me in a hospital bed...but up. And Peggy, if you are reading this, my usband and I have started over in that book you sent me. Every night we read the days devotion. Thank you for it. I dont post much anymore but I still read. I wonder about Bud Kilman and Joanie. And Beth, I lived in Raleigh for 15 years. That is where we moved here from. Make sure and go to Burlington to the stores and isnt it wonderful there? My doctor was Dr. Harvey Marshall at Duke. Really good looking but not much personality. Talk to everyone later. L NSIPF 02/ PH 0/7 Transtrachael Oxygen Delivery Surgery 08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 , Where did you get the foam mattress? What size? Twin x-long or is there a hospital size. Did I tell you the new Pulmo that I seen on Monday asked me about the TT. He is going to push me for it, I think. I don't know if my hubby can handle helping me clean it like Tim does. You continue to amaze me! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Joyce,> I remember so well when I got mine. It was when I went home from the Hospice In patient place. Anyway, I didnt know it was coming. I cried and cried and said I would never sleep on it. I slept sitting straight on the couch cause I could not get my breath even in the recliner. We positioned the room so that the bed would be very very near our big bed and my husband and I could just reach out and touch one another . We got pretty sheets and a foam mattress for it. I tried a nice bedspread but it was just too heavy for me to manipulate. Anyway, took the rails off of the side that faced my husband but kept the rails up on the other side. I used the rails to help me turn positions because at that time, it just took too much breath. I hated that plastic sheet covering they had put on the bed but after getting the mattress, it helped. I found just the right position for sleeping . And when I got lonely, I would stretch out my hand and Tim's armm was always right there. It is a small bed, but once in a while, he would scrunch in it with me, just to be close and to calm when when I cried or got really anxious. I still hate the bed but have adjusted to it and am really glad for it. Just like the oxygen, I hate it but I also am glad for it. I am now on only liquid oxygen, two big tanks in the living room y'd together to get a higher flow. No noise, no heat and with my transtrachael neck thing, I dont even feel it at all. In fact, there are times I wonder if it is really going in my neck and my lungs. I am still on a very high flow, usually 10-12L and it plummets quickly, just like you. I am hoping that after my transtrachael matures (6 weeks) that I can use a lower rate but it really doesnt matter cause I dont feel it. No more nose bleeds, dry face or nasal prongs. I am still a little squeamish about putting it in and out for cleaning but my husband does it faithfully. My cough has begum to lessen and I seem to feel better. Just get out of breath so easily. I bought a pulse/ox against my doctors recommendation and she was right....I do panic when I see it go to 49 . If I sit completely still and do or say absolutely nothing, I can get it to stay at 88. But, once I get up......down it goes. I know dont use it so much. I KNOW when I am out of breath and seeing that low number just scares me. You know, I have proved all the doctors wrong so far and they are still amazed at how I am still alive. I know I am getting worse, but I still fight. Some days, not much fight in me...but other days, like today....well....I dont want to die yet. Assuming I am still alive and able to ride in a vehicle, we are renting an RV and going to attempt going to San in May. I have two children in Texas and friends in Dallas, Austin, Fort Worth and San Plenty of room in an RV for lots of liquid tanks. So, now I am fighting again...want to meet people and see my friends and family again. This time, not letting them see me in a hospital bed...but up. And Peggy, if you are reading this, my usband and I have started over in that book you sent me. Every night we read the days devotion. Thank you for it.> I dont post much anymore but I still read. I wonder about Bud Kilman and Joanie. And Beth, I lived in Raleigh for 15 years. That is where we moved here from. Make sure and go to Burlington to the stores and isnt it wonderful there? My doctor was Dr. Harvey Marshall at Duke. Really good looking but not much personality. > Talk to everyone later.> L> NSIPF 02/ PH 0/7 Transtrachael Oxygen Delivery Surgery 08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Joyce, I'm not but I got my latex foam mattress from http://www.thefoamfactory.com/mattress/mattress.html. Their products are very high quality and very reasonably priced. The mattress covers are that plain blue and white mattress ticking but what matters to me is the quality of the foam is very good. I like the latex because there is no odor as there sometimes is with other types of foam but they also have memory foam mattresses. Beth in NC age 48 Fibrotic NSIP 06/06 Re: Joyce/hospital bed , Where did you get the foam mattress? What size? Twin x-long or is there a hospital size. Did I tell you the new Pulmo that I seen on Monday asked me about the TT. He is going to push me for it, I think. I don't know if my hubby can handle helping me clean it like Tim does. You continue to amaze me! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Joyce,> I remember so well when I got mine. It was when I went home from the Hospice In patient place. Anyway, I didnt know it was coming. I cried and cried and said I would never sleep on it. I slept sitting straight on the couch cause I could not get my breath even in the recliner. We positioned the room so that the bed would be very very near our big bed and my husband and I could just reach out and touch one another . We got pretty sheets and a foam mattress for it. I tried a nice bedspread but it was just too heavy for me to manipulate. Anyway, took the rails off of the side that faced my husband but kept the rails up on the other side. I used the rails to help me turn positions because at that time, it just took too much breath. I hated that plastic sheet covering they had put on the bed but after getting the mattress, it helped. I found just the right position for sleeping . And when I got lonely, I would stretch out my hand and Tim's armm was always right there. It is a small bed, but once in a while, he would scrunch in it with me, just to be close and to calm when when I cried or got really anxious. I still hate the bed but have adjusted to it and am really glad for it. Just like the oxygen, I hate it but I also am glad for it. I am now on only liquid oxygen, two big tanks in the living room y'd together to get a higher flow. No noise, no heat and with my transtrachael neck thing, I dont even feel it at all. In fact, there are times I wonder if it is really going in my neck and my lungs. I am still on a very high flow, usually 10-12L and it plummets quickly, just like you. I am hoping that after my transtrachael matures (6 weeks) that I can use a lower rate but it really doesnt matter cause I dont feel it. No more nose bleeds, dry face or nasal prongs. I am still a little squeamish about putting it in and out for cleaning but my husband does it faithfully. My cough has begum to lessen and I seem to feel better. Just get out of breath so easily. I bought a pulse/ox against my doctors recommendation and she was right....I do panic when I see it go to 49 . If I sit completely still and do or say absolutely nothing, I can get it to stay at 88. But, once I get up......down it goes. I know dont use it so much. I KNOW when I am out of breath and seeing that low number just scares me. You know, I have proved all the doctors wrong so far and they are still amazed at how I am still alive. I know I am getting worse, but I still fight. Some days, not much fight in me...but other days, like today....well. ...I dont want to die yet. Assuming I am still alive and able to ride in a vehicle, we are renting an RV and going to attempt going to San in May. I have two children in Texas and friends in Dallas, Austin, Fort Worth and San Plenty of room in an RV for lots of liquid tanks. So, now I am fighting again...want to meet people and see my friends and family again. This time, not letting them see me in a hospital bed...but up. And Peggy, if you are reading this, my usband and I have started over in that book you sent me. Every night we read the days devotion. Thank you for it.> I dont post much anymore but I still read. I wonder about Bud Kilman and Joanie. And Beth, I lived in Raleigh for 15 years. That is where we moved here from. Make sure and go to Burlington to the stores and isnt it wonderful there? My doctor was Dr. Harvey Marshall at Duke. Really good looking but not much personality. > Talk to everyone later.> L> NSIPF 02/ PH 0/7 Transtrachael Oxygen Delivery Surgery 08> 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.