Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 Dearest HRH you have been very courageous in calling the Hospice for help. You have taken stock of your situation & even though you don't recognise 'that other person' you sure know what she needs! >> Hi Group, Well I just made "THE" call. is gone to the store so I > called hospice. someone will be out around 1 or 2 pm tomorrow.> We'll see what they have to say.. can I tell you all I HATE THIS > DISEASE. I just feel like this will be such a help for .> I talked to my PA yesterday and she said it would be a good idea what > they offer and just feel them out.> > The craziest thing is like I am doing this for someone else. I feel > detached from the person who can't go out the front door> much less care for herself any longer.. This is a really rough part > group, hang on tight. When I get back into bed from the bathroom I> just have NO air.. even on 12 L sooo thats the way it is.. I don't > know if anyone else has experienced NO AIR but it is painful in your > chest.> I feel like I need "DRUGS" lol yes a little help will be a good thing.> We will see how their plan works then decide.> > Anyhow please keep us in your prayers.> > > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Hi Group, Well today a nurse came and brought some meds.. I will be getting calls and visits this next week and then things should be settled. I do have total say over the care I receive, the amount of meds. I am comfortable with them this far. and Bill were here today and seemed to have a rough time. Lord knows how much I love them.. anyhow I sent off with a friend of his for the day. He didn't need to be here today nearly as bad as he needed to get away for a little while. I think tomorrow I will meet MY nurse. the one today did an eval. They will be sending a over the bed table and a bedside potty--- it will never be used.. I promise. OH YES.. so far two nurses-- never heard of IPF.. YES I gave them a patient hand book and pamphlets and a crash course on our disease. More later.. any questions welcome. Love & Prayers, Peggy Florida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Dear HRH, I can hear the relief in your 'voice'...now you can rest easy knowing that some of the load can be lifted...I do hope they realise you require right ROYAL Treatment...just direct them to moi if they need nay training in THAT department...curtseys & so on....polishing of Tiaras..that sort of thing..Oh & the right way of presenting the Royal Supper..dainty little Cucumber Sandwiches with the crusts cut OFF....Slivers of delectable delights....ANYTHING our Princess Peggy fancies! lots of love n' hugs,>> Well, The lady from hospice came and talked with us for probably > three hours. , Bill, & me. we all ask questions, got > answers. It> was a very interesting visit. She told us what hospice does for the > patient, patient care, patient comfort. They do not change your meds > or your 02 L flow. They supply whatever meds you are on. My Dr. will > still be MY DR. They do have dr's here in Ocala> that will be approved my care from here but Dr. Antony will order my > care. I am not sure that makes since or not.> > The nurse comes in the AM to do an assessment of my needs. Judy > (hospice rep.) was wonderful. Christian lady. prayed when we > finished.> Wonderful prayer.> Hospice has a group of volunteers that will come help with my bath or > any needs I have. Then they have Crisis Care for end stage.> > I know this doesn't make much since so I'll try to do better next > time. LOL> I am good today. Sitting talking -- how can I not be good. lol> > THANKS for the support.. love .. and prayers.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us to our feet,> when our wings have trouble remembering how to fly."> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Peggy, Now I am going to post a few thoughts about the bedside potty. I have a bedside potty that I used in 2005, Eddie placed it close to the bed every night. I always had to get up in the middle of the night to use it. I really liked my potty. I didn't have to walk very far so I saved my energy and breathing abilities. Later Eddie stored it so I couldn't use it anymore. I was not very happy about that. But I still have it if I need to use it and I wouldn't hesitate to not use it. Peggy, I know the potty chair would not only be useful for you, but useful for those who are your caregivers. So it's okay. You will feel more cheery if you aren't exerting yourself so much. Love & Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> >> > Well, The lady from hospice came and talked with us for probably> > three hours. , Bill, & me. we all ask questions, got> > answers. It> > was a very interesting visit. She told us what hospice does for the> > patient, patient care, patient comfort. They do not change your meds> > or your 02 L flow. They supply whatever meds you are on. My Dr. will> > still be MY DR. They do have dr's here in Ocala> > that will be approved my care from here but Dr. Antony will order my> > care. I am not sure that makes since or not.> >> > The nurse comes in the AM to do an assessment of my needs. Judy> > (hospice rep.) was wonderful. Christian lady. prayed when we> > finished.> > Wonderful prayer.> > Hospice has a group of volunteers that will come help with my bath or> > any needs I have. Then they have Crisis Care for end stage.> >> > I know this doesn't make much since so I'll try to do better next> > time. LOL> > I am good today. Sitting talking -- how can I not be good. lol> >> > THANKS for the support.. love .. and prayers.> >> >> > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> >> > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Hi Peggy, my name is Tina IPF/UIP-2004 I'm 54 .I went through a lung biopsy .Doctor at that time said he would give me 3 years.scared me to death.Right now they say i'm stable.I go in every 3 months for chest x ray lung volume and to see doctor.I'm on no meds for my lungs.well I'm on the c pap.But thats all right now.But i know how this disease can work. Can i ask you how old you are?Did you say you was diagnosed in 2004 have you been real,real sick since then or has this came on slowly.I'm sorry for asking maybe i should wait for a reply before saying anymore.Take care of your self and god bless you.Tina To: Breathe-Support Sent: Sat, November 7, 2009 1:06:20 PMSubject: Re: Hospice Help... PeggyGet them through their aides to provide as much service as you need,whether help with meals or baths or getting up and walking around orwhatever that might be. I know its not in your character to assert yourright to be treated like a Queen. But, everything they can do for you,means more moments you and and the kids can just socialize and hugand talk. I was a bit surprised when you talked about volunteers comingand helping with some of the things as they are things that I understandthe hospice aides to normally do as part of the service. I want youtaken care of as if you're living in the lap of luxury.> >> > Well, The lady from hospice came and talked with us for probably> > three hours. , Bill, & me. we all ask questions, got> > answers. It> > was a very interesting visit. She told us what hospice does for the> > patient, patient care, patient comfort. They do not change yourmeds> > or your 02 L flow. They supply whatever meds you are on. My Dr.will> > still be MY DR. They do have dr's here in Ocala> > that will be approved my care from here but Dr. Antony will ordermy> > care. I am not sure that makes since or not.> >> > The nurse comes in the AM to do an assessment of my needs. Judy> > (hospice rep.) was wonderful. Christian lady. prayed when we> > finished.> > Wonderful prayer.> > Hospice has a group of volunteers that will come help with my bathor> > any needs I have. Then they have Crisis Care for end stage.> >> > I know this doesn't make much since so I'll try to do better next> > time. LOL> > I am good today. Sitting talking -- how can I not be good. lol> >> > THANKS for the support.. love .. and prayers.> >> >> > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> >> > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009  Hi Tina... welcome to our board. You couldn't be in a better place for support and information as we fight our common disease. I was dx 3-06 and have stayed fairly stable since. I take no meds but may after some pending tests are completed...Dr suspects PH and then there will be meds. I also use a cpap...w/o2 at night. I've become so used to my cpap I won't leave the house for an overnight visit without it. I was given 3 to 5 years too, many of us here have the guess. Peggy says there is no expiration date on our fannies! Keep on keepin' on. MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there! Re: Hospice Help... PeggyGet them through their aides to provide as much service as you need,whether help with meals or baths or getting up and walking around orwhatever that might be. I know its not in your character to assert yourright to be treated like a Queen. But, everything they can do for you,means more moments you and and the kids can just socialize and hugand talk. I was a bit surprised when you talked about volunteers comingand helping with some of the things as they are things that I understandthe hospice aides to normally do as part of the service. I want youtaken care of as if you're living in the lap of luxury.> >> > Well, The lady from hospice came and talked with us for probably> > three hours. , Bill, & me. we all ask questions, got> > answers. It> > was a very interesting visit. She told us what hospice does for the> > patient, patient care, patient comfort. They do not change yourmeds> > or your 02 L flow. They supply whatever meds you are on. My Dr.will> > still be MY DR. They do have dr's here in Ocala> > that will be approved my care from here but Dr. Antony will ordermy> > care. I am not sure that makes since or not.> >> > The nurse comes in the AM to do an assessment of my needs. Judy> > (hospice rep.) was wonderful. Christian lady. prayed when we> > finished.> > Wonderful prayer.> > Hospice has a group of volunteers that will come help with my bathor> > any needs I have. Then they have Crisis Care for end stage.> >> > I know this doesn't make much since so I'll try to do better next> > time. LOL> > I am good today. Sitting talking -- how can I not be good. lol> >> > THANKS for the support.. love .. and prayers.> >> >> > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> >> > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2009 Report Share Posted November 8, 2009 Dear Peggy, You are so.. doing the right things at the right time , it is very commendable , but then we should expect nothing less than that from you. I am so glad yo could go off and enjoy yourself at Chattanooga, now you got the hospice help. It will help both you and , I am sure you will take help only as much as you but it is comforting to know someone else will be responsile for you, you are so unselfish in thinking aout , calling the hospice in his absence and asking him to go away and have a nice time with friends. keeping away the bedside potty is such a brave act, one can give easily in these conditions.. now you can read , listen to music and use the comp as much as you want ,take care Peggy, lots of love and prayers Geeta > > > > Well, The lady from hospice came and talked with us for probably > > three hours. , Bill, & me. we all ask questions, got > > answers. It > > was a very interesting visit. She told us what hospice does for the > > patient, patient care, patient comfort. They do not change your meds > > or your 02 L flow. They supply whatever meds you are on. My Dr. will > > still be MY DR. They do have dr's here in Ocala > > that will be approved my care from here but Dr. Antony will order my > > care. I am not sure that makes since or not. > > > > The nurse comes in the AM to do an assessment of my needs. Judy > > (hospice rep.) was wonderful. Christian lady. prayed when we > > finished. > > Wonderful prayer. > > Hospice has a group of volunteers that will come help with my bath or > > any needs I have. Then they have Crisis Care for end stage. > > > > I know this doesn't make much since so I'll try to do better next > > time. LOL > > I am good today. Sitting talking -- how can I not be good. lol > > > > THANKS for the support.. love .. and prayers. > > > > > > Love & Prayers, Peggy > > Florida, IPF/UIP 2004 > > > > " I believe that friends are quiet angels who lift us to our feet, > > when our wings have trouble remembering how to fly. " > > > > > >  > > > Quote Link to comment Share on other sites More sharing options...
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