Newly diagnosed

[Nikki J]

Yes those are certainly consistent with carbon dioxide retention which can be very dangerous even fatal

I know you haven’t gone to the ALS clinic yet but presumably ( hopefully) your diagnosing neuro would be able to advise you. Try calling now If s/ he is in the same hospital system s/ he could review your hospital record

 

[Grhbr]

Nikki
Thanks so much for the fantastic advice. I just got 5 hours sleep for the first time since Wednesday. I feel so much better since putting down the oxygen! I was starting to become quite desperate thinkig this was my new normal. I will be texting the neurologist today. He's great and gave me his cell phone number and usually gets right back to me. I think you just saved me!

 

[Nikki J]

I am so glad you feel better. I was worried about that oxygen. Hopefully your neuro can direct you now.

Did they make plans for follow up blood work as you said you went home with a diuretic? That can throw your electrolytes off no matter who you are!

Happy your neuro is accessible. Be sure to mention what happened when you go to your second opinion

Good luck. Let us know

 

[Nikki J]

What did your neuro say? You also were expecting a home visit yesterday I think? I hope you got answers and some direction!

 

[Grhbr]

Surprisingly, no word yet from the neuro. I called my PCP and his office said I must come in in order to get a prescription for a BiPAP as I'm on an HMO plan. I made an appointment, the first available was Friday at 4 and I'm attempting to get a ride. I'm still very weak but my breathing is okay for now I really need to get some help- a health aide or volunteer or someone who can come and help with things like cleaning, laundry and perhaps bathing. I dont have the extra funds to hire someone but I can't continue like this.I also need a ramp as I can no longer manage the stairs. It's overwhelming. What Id like to do is enjoy what time I have but my state of mind and tasks at hand keep me stressed out, sad, depressed.

 

[lgelb]

I'm not clear on your financial resources, Sarasota, since you have mentioned travel but also limited funds. In any case, you might ask a social worker via your PCP, hospice or clinic to evaluate your eligibility for Medicaid and any other support, that could facilitate the help at home that you lack. With an ALS diagnosis, you might be eligible for more than what you had for the lymphoma.

I'd also contact your city's senior services/disabilities department and community senior center to find out about any other services for which you are eligible. Some communities have volunteers who help people in your situation.

 

[Grhbr]

The travel would be donated miles from a friend who travels for business and staying with friends. It will also mean selling possessions which Im happy to do. They need to go anyway.