Dodged a Home Healthcare Bullet Last Night

[NeuroNixed Craig]

My last primary care doctor visit didn't go so well because I didn't look so well. He took a pulse-ox, normally 98% to 100%, mine was from 87% to 91% and concerned him quiet a bit. He mentioned I may need to go on home oxygen, I didn't want to hear or discuss it and told him to simply call my wife about it.

Last evening a home healthcare nurse came in and did a complete evaluation. I literally squeaked by with about 3 to 4 percentage points above the oxygen required standard. She did admit it is only a matter of time due to my rapid progression. OK! Tell me something I don't know. What I do know is I'm not going to have to deal with that at this moment.

This is a case of count your blessings, no matter how small they may be. I don't know what's going to happen next and will deal with it when it does. Until then, I have stuff to do. I look on the bright side, there is still no blue ink stamp on the bottom of my foot with and expiration date. When I find it, I'll try my darnedest to wash it off.

I you can still breath, life is good!

[stillstANNding]

Craig,

I am sorry that there is need for medical equipment.

OTOH, if portable O2 helps keep you awake more and helps you do the things you want to, it might not be a bad idea.

My sister, grandmother and father all had portable O2 as needed and did very well w it. The reasons were all different and different from yours.

And yes, my sister, in particular, was bummed about it but it did help her and served as another tool to keep her independent.

Best to you,
ANN

[SalpalSally]

I'm glad you don't have to do the home oxygen but I agree with Ann. It may help you to have more energy to do more of what you want to do.

Love and hugs,

[agate]

It's too bad you've had this news. But why not keep an open mind? There are lots of types of home oxygen set-ups, and you might find that it's not as bad a deal as you thought.

I've known quite a few people who had to have home oxygen. Some had it going for many years. One neighbor with COPD was on it for years but then was able to go off it--something her doctor had told her wouldn't happen, but it did.

[Mariel]

I'm chiming in in favor of the oxygen, too. Primarily to give you more energy, possibly? I too know of someone who was on it
and then went off it.

[renee]

Craig-
I like to call it a home health scare.
Health scare aides.
Scary.

I should be doing breathing exercises with the plastic
ping pong ball toy I was given and then ran over.

You got one of those?

R

[NeuroNixed Craig]

I don't disagree with anyone regarding the benefits of having oxygen.

What got me was in the aftermath of;

• A tough beach vacation and long hard recovery in September,
• Realizing my big travel days are over when my doctors determined the risk was too high and I couldn't join my family on our long planned reunion to Disney World in October,
• The disease now having a serious impact on my GI system and bladder,
• Then hearing my diaphragm and lungs are involved and progressively weakening to the point of requiring oxygen

It was all just too much to deal with at one time feeling like the oxygen was just another "nail in the coffin." Even I can only be beat up so much, with so much and so quickly without having a negative affect.

Thank you all for you words of support and concern because it does make a difference coming here and freely expressing myself while receiving positive feedback.

[Gabriella7]

Home Health Care

Hi Craig, I had a bad experience with a home health care nurse of a different type. After I was in the hospital in April my neuro wanted me to have a home health care nurse and a PT. Both came by in a few days but not when they were scheduled. The health care nurse was to be at my house at 10:00. She called about 11:00 and told me she would be coming around 2:00 then came around 4:00 which is usually my nap time.

She took my temperature, blood pressure, and pulse and then proceeded to lecture me to her rules of conduct. She told me if she ran into me in the mall I would be taken off her case load. I didn't reply but was thinking to myself "I haven't even been to the mall in about 6 years!" The next day I called the main office and told them I could take my own temp, BP, and pulse and not to send her to my house again.

The PT was even worse. I have had a lot of PT over the years as an outpatient and will have it again if I need it in a real PT facility. She had me lay down on the floor and try to do sit-ups without even the benefit of any kind of warm up. I fired her also.

It was going to be a waste of Medicare funds.......

Sorry, about the oxygen but it might really help with the energy levels. I went for hyperbaric oxygen treatments and paid for them myself. I found they helped with my walking and energy level for several days after. I am thinking of going again since the weather is cooler and I can get out again. You might want to try the oxygen to just see if it helps. You can always quit it if it doesn't. I understand it just seems like another set back but it might just be a step forward.

Blessings,
Gabriella:angel:

[Cherie]

Craig,
You , of all people, have every right to be discouraged and feel like "enough is enough". I hear you about not being ready to deal with all of this.

However, it sounds like if you want any real quality time left with Joyce and the kids and grandkids, the oxygen just might give it to you. It will add to clarity of thought and expression and lessen the incredible fatigue. Yes, it's one more thing that reminds you that you have a rapidly progressing illness. But in my experience, it may progress even more rapidly and less comfortably without this "comfort measure" of adding oxygen.

Whatever makes it acceptable to you, you must do. Pretend you're going deep sea diving and this is your air tank. You have the ocean surrounding you in your office. Pretend you're in an "oxygen club" and getting your "hit" without having to pay the cover charge. I don't care. I know you are creative enough to come up with a mental excuse that will lighten the load. You've done it before and can do it this time. Without the oxygen, you will look less well, feel less well, act less well, and be less well for the time you have left.

I ask you to do this not just for you but for Joyce and the kids and grandkids so they don't have to watch you struggle to breath on top of everything else. This doesn't prolong the inevitable but it can make it less scary. I love you Craig or I would not be putting this as strongly as I am.

Once you have the O2, you don't have to wear it continuously but it could help while sleeping and doing anything that uses extra energy. And it'll be there when you need it instead of you making a decision a week from now on a Friday afternoon that you should have done this before then having to wait for the whole thing to be processed only to find you're going to end up in the hospital instead.

[NeuroNixed Craig]

I understand and appreciate the support for utilizing oxygen and honestly will not refuse it by any means when the time comes. However, having or not having oxygen at this specific point in time is not my decision but the findings of the home healthcare nurse who performed my evaluation. Her exact determination was I do not qualify, or meet the standards, at this time for in-home oxygen. She did admit that time is not too far off into the future.

Sure I'm not happy about moving to the home oxygen stage, but that doesn't make it any less of a benefit than my power wheelchair, power scooter or parking in a handicapped spot. I gave up that kind of pride a long time ago and fully appreciate what having the proper oxygen saturation on a daily basis would make in my life.

So again, to have or not to have the in-home oxygen at this time was not a decision for me to make, I failed to meet the requirements to receive it due to my O2 sat levels observed by the evaluating nurse. Had I met the minimum standards to be able to receive it, I definitely would/will be taking advantage of it.

I apologize for creating confusion throughout my comments in this thread regarding the above point and greatly appreciate everyone's insights and recommendations. Trust me, they will not go unheeded.