How low can the oxygen level get before I need to seek emergency help?

My significant other is 28 years old, and has been diagnosised with IPF in late May of this year. He is currently using between 8-10L of oxygen 24/7. Recently, this past week he has been coughing much more frequently than usual, and I have been needing to use both our in home concentrator and our liquid O2 at the same time, meaning he is using about 20L when his oxygen levels begin to drop. With that said, this past week his oxygen levels have been dropping into the low 40s upper 30s, and it is taking more oxygen and time to recover. Has anyone had a similar experience, and when is the appropriate time to seek emergency medical help. He really does not want to go back in to the hospital? Any help or advice would help, thanks.

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I am so sorry to hear as he is so young to deal with this disease. Does he have a good pulmonogist? Levels in 30 to 40 range seems very low and I would suggest contacting his doctor. My husband was recently in hospital on vent and when his oxygen starting dropping below 70 they rushed in. I can only go by this. Have you looked into Pallitive care to help manage these issues. I think it would help for you to look into it. Keep us updated. All my best.

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Personally I would have called emergency already. They need to sort out in hospital how to manage his condition, you and the kids need help with this. If nothing can be done to improve things palliative care would help. My husband is on a type of morphine to help with the coughing because his sats go so low, 50s not 30 and 40. Does his dr realize how bad he is? Keep in touch.

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The biggest problem I face is that he does not want to go back into the hospital. He knows there is something wrong, but he does not want to do another week or two hospital stay. He has nurses, and PT and OT that come to the house. What is palliative care? All I can do is help when he can't breathe to the best of my ability. I have told the Doctors about his oxygen dropping in the low 40s-high 30s, and they just say that it just depends on how he feels. I will keep you updated if the prognosis should change.

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Of course he doesn't want to go to the hospital again, none of us do..but the doctors need to help you get his oxygen at a level that is comfortable..palliative care helps an individual cope with a disease...it is medical care to help a patient in any stage of a disease..comfort and managing pain is the main goal..it is totally different than hospice..interestingly enough, Dr Anhony Konaroff of Harvard Medical wrote an article today on this subject. Maybe you can google it..good luck..if you can't find it..let me know..keeping good thoughts for you..HOLLY

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I agree with what everyone has already said. I would have already called 911........or at the very least called the doctor. I always worry what low sats are doing to other organs. Like someone else said, no one wants to go into the hospital but sometimes the patient doesn't think clearly in the time of crisis and it's up to us to make the decisions. Best of luck and please keep all of us posted. Sending prayers

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I am so sorry for what you are going through and understand. I agree with the others although I was in the same place as you. my husband did not want to go back to the hospital either. I also agree they are not always thinking right. my husband waited until he was gasping for breath to say call 911. Your husband is so terribly young. I wish I could help. he needs to be in the hospital for both your sakes.

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Here is the link to the article on palliative care...excellent article!

http://thetimesnews.com/lifestyles/palliative-care-is-not-the-same-as-hospi ce-1.20937

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Informative article. Thanks for sharing.

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Yamatograd, thanks for posting the link. My husband has visits from palliative care but this article explained the subject so clearly it was useful to me.

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Doferg,

I am going to chirp in as both patient. I am like your hubby, on 9 liters 24/7. I have setup contact with a home nursing group. They only come visit about once a month and monitor my progression. But if i get much worse, we can call them and they will come. They will expedite with my doctors a response, such as approving and administration of low dose morphine to help with the cough. I think you should investigate this option, because it respects the wishes of your husband.

While its true during a coughing attack we don't think clearly, discussion ahead of time is very clear. I know i want to stay out of hospital, there is nothing they can do to make me better, that cant be done at home. In fact its easier to catch various things at the hospitals than at home. I would also discuss with him a DNR form so that if he has a heart stoppage or stops breathing at home the EMTs do not try to bring him back (which they legally must try) if he does not want that.

For me the cough attacks tend to occur at certain times of day, first in morning, around dinner, and once in middle night. You can help by giving codeine ahead of time. I would get morphine drops from your docs because that is severe desat. Setting up with home nusing is better than 911, because they already know the situation, where EMTS may not even understand the disease, and ER doctors may not either.

How long does his attacks last, how many times a day is he in this state.

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His attacks usually last a few minutes, but almost always in the middle of the night. They seem to be getting worse though this past week, and he has been complaining that he is feeling weaker. We do have a home health nurse, although he just indicated that she told him today that today would be her last day coming. We don't have another doctors appointment until the end of the month and that is with the transplant doctor. I was not aware that he could be prescribed morphine but I will definately look into this, and talk with him about this option. His home health care nurse recommended that he go to the emergency room, but again he really does not want to go. Thanks so much for your input and suggestions. It is just hard because I work full-time and we have no family around us, so I worry about him being at home alone for long such long periods of time, while I am away at work. But, I'm sure your family/friends have the same concerns.

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My husband had a double lung tranplant in July. I see you have an appt with the transplant md at the end of the month. Is your husband already on the transplant list. He sounds sick enough. If he is on the list...call and update them with his status change. It could move him up on the list. If he is not on the list...call and see if they can get him in earlier. (this is assuming a transplant is acceptable for your husband). My husband was diagnosed in July 2011, was placed on oxygen June 2012. Started transplant work up June 30, 2012. Was placed on active list July 13 and received a double lung transplant July 17 2012.

He is very young and sounds sick. Please look at transplantation as an option. It's not easy, but it can be life saving.

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