Re: need some help

[Guest guest]

HI ,

I'm so sorry that you're going through this. So sad that your grandmother lost your grandfather so recently too.

I'm guessing that the headaches and nosebleeds are due to the oxygen--it can be so dry. I just asked the oxygen company and they brought him a humidifier bottle for his 02 tank--why they don't automatically bring it is beyond me. That might help some. Our pulmonary doctor warned against using anything with petroleum jelly/vaseline in it as there is a slight risk of explosion with the use of oxygen (i was shocked to hear this too!). He suggested a "water-based lubricant"-- I know it sounds weird but I think KY Jelly is probably your best bet where that is concerned. My Dad uses something called Secaris but I believe it may only be available in Canada.

I hope this helps a bit. Please know that I'm thinking of you and your grandmother and you are in my prayers.

anne (dad ipf 03/06)

need some help

I joined a couple of months ago and I apologize for not being very active. I stay and help my grandmother every morning and I also have 3 children so it is tough to get on the computer. My grandmother was diagnosed with pulmonary fibrosis over a year ago. She is now on oxygen full time and at 4 liters. Her pulmonary doctor pulled me aside at her last appt. and told me if her levels stay in the 70's and 80's like they have been then her heart could go at any time. He even went as far to ask if she had a DNR. I know she is not getting any better but this is so hard. I am concerned right now because she has been running a 101-102 fever every afternoon for the past week. She went to the ENT last week and he put her on antibiotics, I think just because she wanted them. She has been complaining of headaches and nosebleeds. I dont know if anyone knows if these symptoms mean anything. I am just so worried about her. She is wheelchair dependant now and rarely leaves the house. My grandmother lost my grandfather in July and she is just so sad. She has also been complaining of sores in her nose, most likely from the oxygen. If there is anything out there that helps with the sores please let me know. She has tried vaseline, neosporin, and saline spray. None of which has worked. Thank you all for your help.

[Guest guest]

by the way nicole, no need to apologize for not being active on the chat--it's here to help however you need it. i don't post a lot either but have learned a lot from the wonderful people here. whatever works for you,

anne (dad ipf 03/06)

need some help

I joined a couple of months ago and I apologize for not being very active. I stay and help my grandmother every morning and I also have 3 children so it is tough to get on the computer. My grandmother was diagnosed with pulmonary fibrosis over a year ago. She is now on oxygen full time and at 4 liters. Her pulmonary doctor pulled me aside at her last appt. and told me if her levels stay in the 70's and 80's like they have been then her heart could go at any time. He even went as far to ask if she had a DNR. I know she is not getting any better but this is so hard. I am concerned right now because she has been running a 101-102 fever every afternoon for the past week. She went to the ENT last week and he put her on antibiotics, I think just because she wanted them. She has been complaining of headaches and nosebleeds. I dont know if anyone knows if these symptoms mean anything. I am just so worried about her. She is wheelchair dependant now and rarely leaves the house. My grandmother lost my grandfather in July and she is just so sad. She has also been complaining of sores in her nose, most likely from the oxygen. If there is anything out there that helps with the sores please let me know. She has tried vaseline, neosporin, and saline spray. None of which has worked. Thank you all for your help.

[Guest guest]

Hi ,

Glad to see you posting. Your grandma probably has headaches due to having too much carbon deoxide. Our lungs have a hard time getting the carbon deoxide out. Patients on oxygen therapy are advised not to use petroleum products like vaseline because of fire hazards. There is a product called Ary for sore noses, but I use KY Jelly, it is cheaper and is essentially the same thing. I also use Neosporin in the cream form, not gel.

The fever is a real indicator of infection in her lungs. Did she see the pulmonologist? She may need IV treatment.

Thank you for taking care of your grandma. You will always be glad that you did. And, you are setting a lifetime example for your children.

Hugs, Joyce PF 1997>> I joined a couple of months ago and I apologize for not being very > active. I stay and help my grandmother every morning and I also > have 3 children so it is tough to get on the computer. My > grandmother was diagnosed with pulmonary fibrosis over a year ago. > She is now on oxygen full time and at 4 liters. Her pulmonary > doctor pulled me aside at her last appt. and told me if her levels > stay in the 70's and 80's like they have been then her heart could > go at any time. He even went as far to ask if she had a DNR. I > know she is not getting any better but this is so hard. I am > concerned right now because she has been running a 101-102 fever > every afternoon for the past week. She went to the ENT last week > and he put her on antibiotics, I think just because she wanted > them. She has been complaining of headaches and nosebleeds. I dont > know if anyone knows if these symptoms mean anything. I am just so > worried about her. She is wheelchair dependant now and rarely > leaves the house. My grandmother lost my grandfather in July and > she is just so sad. She has also been complaining of sores in her > nose, most likely from the oxygen. If there is anything out there > that helps with the sores please let me know. She has tried > vaseline, neosporin, and saline spray. None of which has worked. > Thank you all for your help. >

[Guest guest]

Dear :

I am sorry you are having to go through this so soon after losing your grandfather. You are to be commended for bringing comfort to them at this time.

Does your grandmother have a humidifier bottle with water in it hooked to her oxygen? If not that would account for her nose getting sore. If she doesnt have one, ask her oxygen supplier for one. You need to use distilled water in the bottle. When I go out and have to use my oxygen without the humidifier, it only takes a couple of hours before my nose gets so sore it bleeds. The water keeps the nasal passages moist to prevent sores and bleeding. However sometimes additional moisturizers may be needed as well.

Carolyn

-- Re: need some help

HI ,

I'm so sorry that you're going through this. So sad that your grandmother lost your grandfather so recently too.

I'm guessing that the headaches and nosebleeds are due to the oxygen--it can be so dry. I just asked the oxygen company and they brought him a humidifier bottle for his 02 tank--why they don't automatically bring it is beyond me. That might help some. Our pulmonary doctor warned against using anything with petroleum jelly/vaseline in it as there is a slight risk of explosion with the use of oxygen (i was shocked to hear this too!). He suggested a "water-based lubricant"-- I know it sounds weird but I think KY Jelly is probably your best bet where that is concerned. My Dad uses something called Secaris but I believe it may only be available in Canada.

I hope this helps a bit. Please know that I'm thinking of you and your grandmother and you are in my prayers.

anne (dad ipf 03/06)

need some help

I joined a couple of months ago and I apologize for not being very active. I stay and help my grandmother every morning and I also have 3 children so it is tough to get on the computer. My grandmother was diagnosed with pulmonary fibrosis over a year ago. She is now on oxygen full time and at 4 liters. Her pulmonary doctor pulled me aside at her last appt. and told me if her levels stay in the 70's and 80's like they have been then her heart could go at any time. He even went as far to ask if she had a DNR. I know she is not getting any better but this is so hard. I am concerned right now because she has been running a 101-102 fever every afternoon for the past week. She went to the ENT last week and he put her on antibiotics, I think just because she wanted them. She has been complaining of headaches and nosebleeds. I dont know if anyone knows if these symptoms mean anything. I am just so worried about her. She is wheelchair dependant now and rarely leaves the house. My grandmother lost my grandfather in July and she is just so sad. She has also been complaining of sores in her nose, most likely from the oxygen. If there is anything out there that helps with the sores please let me know. She has tried vaseline, neosporin, and saline spray. None of which has worked. Thank you all for your help.

[Guest guest]

Hi , I just joined the group this summer too, and also don't spend much time on the computer either. My husband , he's 76, is starting to get worse. He also has other problems, renal failure, and an aorta aneurysm, which his vascular surgeon wants to operate on, a moderate risk operation. He's becoming more dependent on the oxygen, however, sometimes the shortness of breath and fatique is, in his case, due to anemia, due to kidney failure; that sometimes gets corrected. He gets do frustrated when he can't do simple chores; he can drive, and he still goes to his printshop to supervise. My husband uses a concentrator at home which has a vaporizer attached to it, that relieves the dryness in the nose; it's a little jar filled with distilled water

which has to be replenished when low. That could help your grandmother's nose. My husband gets depressed," what kind of life is this?" I try to be cheery, when he's not around I can have a good cry. It's good to have family! Take care Gretelnicolemommy3 wrote: I joined a couple of months ago and I apologize for not being very active. I stay and help my grandmother every morning and I also have 3 children so it is tough to get on the computer. My grandmother was diagnosed with pulmonary fibrosis over a year ago. She is now on oxygen full time and at 4 liters. Her pulmonary doctor pulled me aside at her last appt. and told me if her levels stay in the 70's and 80's like they have been then her heart could go at any time. He even went as far to ask if she had a DNR. I know she is not getting any better but this is so hard. I am concerned right now because she has been running a 101-102 fever every afternoon for the past week. She went to the ENT last week and he put her on antibiotics, I think just because she wanted them. She has been complaining of headaches and nosebleeds. I dont know if anyone knows if these

symptoms mean anything. I am just so worried about her. She is wheelchair dependant now and rarely leaves the house. My grandmother lost my grandfather in July and she is just so sad. She has also been complaining of sores in her nose, most likely from the oxygen. If there is anything out there that helps with the sores please let me know. She has tried vaseline, neosporin, and saline spray. None of which has worked. Thank you all for your help.

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