Last week a rep from Breathe Technologies met me at Dr Marks office and did a demo of their new non-invasive ventilator.
He said I'd have to do two 6 minute walk tests. One on regular oxygen and one with the ventilator.
I laughed at him. I KNEW I couldn't do it. Well, I lasted 45 seconds (on 8 liters) for the first test.
Recovered for about 5 minutes and changed to his tank (the ventilator needs a specific canister that I'd need to change to)
There are three settings and I needed the highest to walk but I did it! For 6 minutes! On 4 liters!
My SAT rate stayed at 99! It's never on 99 unless I am staying totally still on 7 to 8 liters.
The ventilator weighs just about a pound. It needs a specific "pillowed" cannula and the tube right under the nose is double the size of a regular one and is UGLY, but I can breathe with it.
I instructed Ann to tackle the guy for the machine but she refused so we're waiting to see if I can get insurance approval. If not the machine is $5500 and I'll have to sit in my wheelchair at a major intersection and beg if I have to in order to collect enough money to buy one.
I might even be able to go to physical rehab again! My muscles are SO weak now from not being able to move without being out of breath and cramping all over.
Thursday, June 5, 2014
Friday, May 16, 2014
Shar came for four days last week and it was great. I ended up having too many dr appts and it was nice to have her with me when I saw Marks. We are considering Rituxan rather than Cytoxan because I really can not tolerate throwing up and possibly aspirating again.
Marx is trying to get insurance approval. We'll have to wait and see.
Arizmendi sent me to see Greiner to make sure the wicked fluid retention in my leg wasn't due to heart issues. An EKG and Echo later I am fine and I think we finally have the swelling under control and the cellulitis gone. At least my leg doesn't hurt as bad anymore. More Scripts... Potassium and magnesium.
Shar has offered to take a leave of absence when I feel I need someone here 24/7. She is worried I'll be afraid but I'm really not yet. I don't want to die. I REALLY don't want to. I want to see all my babies grow up but it isn't going to happen. It is so hard to move at all now but if I stay still and calm I can breathe easily and be ok. Existing more than living but it's better than not existing. I still have lots of books to read, sewing projects to plan and conversations to have.
Ann brought the kids over and they went swimming. Gareth liked his Dominos but Æmilia really loved the art kit and clay. They played lots of games on the iPads after dinner. Grandpa brought Firehouse subs because his middle appt. canceled then they couldn't even quote the last appt due to mold.
Marx is trying to get insurance approval. We'll have to wait and see.
Arizmendi sent me to see Greiner to make sure the wicked fluid retention in my leg wasn't due to heart issues. An EKG and Echo later I am fine and I think we finally have the swelling under control and the cellulitis gone. At least my leg doesn't hurt as bad anymore. More Scripts... Potassium and magnesium.
Shar has offered to take a leave of absence when I feel I need someone here 24/7. She is worried I'll be afraid but I'm really not yet. I don't want to die. I REALLY don't want to. I want to see all my babies grow up but it isn't going to happen. It is so hard to move at all now but if I stay still and calm I can breathe easily and be ok. Existing more than living but it's better than not existing. I still have lots of books to read, sewing projects to plan and conversations to have.
Ann brought the kids over and they went swimming. Gareth liked his Dominos but Æmilia really loved the art kit and clay. They played lots of games on the iPads after dinner. Grandpa brought Firehouse subs because his middle appt. canceled then they couldn't even quote the last appt due to mold.
Friday, April 25, 2014
Sick as can be yet again
Went to Arizmendi because my calfs were hot, swollen and painful. Had a Doppler done Wed. Afternoon that I thought was going to kill me. My inner thighs are black and blue and painful.
Thank God, no clots found but even with antibiotics and a second diuretic (Bumex) my ankles are still swelled. Fever on and off all week and now wicked pain across my back. It feels like the flu with no runny nose or more congestion than usual. Slept on and off for three days now. Ann has brought the kids by and they have been so great. They want to go swimming and I just can't get my act in gear.
Thank God, no clots found but even with antibiotics and a second diuretic (Bumex) my ankles are still swelled. Fever on and off all week and now wicked pain across my back. It feels like the flu with no runny nose or more congestion than usual. Slept on and off for three days now. Ann has brought the kids by and they have been so great. They want to go swimming and I just can't get my act in gear.
Sunday, April 20, 2014
I'm mobile!
After weeks and weeks of trying to get approval for a decent scooter or wheelchair we finally caved in and bought a used one on Craigslist. After the mess of tring to find a used POC. I was really nervous about spending the money and having an unusable item but I think all is well. If not we're out $450.
The couple that sold it to us said they'd bought it used, in Sept. for a niece who had a soccor injury. They put it in Chris' car for us and when we got home Chris backed up to the block wall in front of the apt and the height was perfect.
I took it for an intial spin, out to Huebner, almost to Bandera but a pole blocked me from continuing but I may be able to get past it if Chris moves the right arm in a bit.
Met Tina, the other "baby" of the Villa's. She is also 56. Says there is a new guy who is 55 so we aren't the youngest here anymore.
Also met Liz, I think was her name. Tall beautiful woman who has a 7 lb.teacup chihuahua that has a wicked deep bark. Adorable.
Sat outside most of the day while Brye and Tope cooked. I made German Potato Salad this morning and now I'm tapped out even though I probably slept 16 hours last night ~ on and off, of course.
Facetimed with Bran and Megs. Talked to Miz for a bit. Read a bunch and almost ready to sleep yet again.
The couple that sold it to us said they'd bought it used, in Sept. for a niece who had a soccor injury. They put it in Chris' car for us and when we got home Chris backed up to the block wall in front of the apt and the height was perfect.
I took it for an intial spin, out to Huebner, almost to Bandera but a pole blocked me from continuing but I may be able to get past it if Chris moves the right arm in a bit.
Met Tina, the other "baby" of the Villa's. She is also 56. Says there is a new guy who is 55 so we aren't the youngest here anymore.
Also met Liz, I think was her name. Tall beautiful woman who has a 7 lb.teacup chihuahua that has a wicked deep bark. Adorable.
Sat outside most of the day while Brye and Tope cooked. I made German Potato Salad this morning and now I'm tapped out even though I probably slept 16 hours last night ~ on and off, of course.
Facetimed with Bran and Megs. Talked to Miz for a bit. Read a bunch and almost ready to sleep yet again.
Sunday, April 6, 2014
No scooter yet. Supposedly I need to pay $600 if I want one, which is half the cost of a cheapie model. I don't have $600.
Chris borrowed an electric wheelchair from Janine at work but it needs a charging cord.
That will cost $350 (non-returnable) and no guarantee the chair will work if we get it.
Looks like I'll have to look for a used one on Craigslist or at a pawn shop. I just can't walk more than a few feet without wanting to pass out.
Dr. appointments this week with Garcia and Saigal plus two acupuncture appointments.
Christa, Avery and MaryEllen came for the weekend and Brianna and Anthony are coming on Tuesday. Margo and the boys are also supposed to stop in.
Chris borrowed an electric wheelchair from Janine at work but it needs a charging cord.
That will cost $350 (non-returnable) and no guarantee the chair will work if we get it.
Looks like I'll have to look for a used one on Craigslist or at a pawn shop. I just can't walk more than a few feet without wanting to pass out.
Dr. appointments this week with Garcia and Saigal plus two acupuncture appointments.
Christa, Avery and MaryEllen came for the weekend and Brianna and Anthony are coming on Tuesday. Margo and the boys are also supposed to stop in.
Sunday, March 30, 2014
My new normal sucks
No other way to put it.
I got the new, larger concentrator last week. I really believed the being able to turn it up to 8 liters to walk around would help but it doesn't. I no longer feel like I want to pass out if I stand up but it hasn't helped nearly as much as I'd hoped.
SAT rate falls to the low 70's if I move at more than a crawl.
I should be getting a scooter this week. Hopefully insurance won't drag it out too long.
I got the new, larger concentrator last week. I really believed the being able to turn it up to 8 liters to walk around would help but it doesn't. I no longer feel like I want to pass out if I stand up but it hasn't helped nearly as much as I'd hoped.
SAT rate falls to the low 70's if I move at more than a crawl.
I should be getting a scooter this week. Hopefully insurance won't drag it out too long.
Monday, March 24, 2014
Went to the movies! BIG mistake!
On Thursday Sally picked me up and we went over to the Regal Theaters on Vance Jackson & DeZavala to see Saving Mr. Banks. I left my second canister in the car assuming I'd need just the one as long as I sat still after recovering from the stroll in. Wrong!
From the minute we sat down I had to keep turning it back up from 3 to 5 lpm (and I wasn't saying a word or moving at all) Sally had to go out and retrieve my other bottle. Wicked time getting to the car and then at least a half hour to recover once I got home and had the continuous flow set as high as possible. for the past few days I use the big unit and a canister also when I have to move around. Good temp. solution.
Called Providacare again and they said they didn't have the orders for a bigger concentrator. Called Susan at Dr. M's. Her comment was a very droll "They Lied." Today I called everyone again and as of noon Jerry is on his way to deliver the larger concentrator. Still not sure how the getting out of the house thing will work but we'll deal with that later.
Seeing Marks later this afternoon. I don't think I'm "sick" right now. I just think this is my new low.
On Thursday Sally picked me up and we went over to the Regal Theaters on Vance Jackson & DeZavala to see Saving Mr. Banks. I left my second canister in the car assuming I'd need just the one as long as I sat still after recovering from the stroll in. Wrong!
From the minute we sat down I had to keep turning it back up from 3 to 5 lpm (and I wasn't saying a word or moving at all) Sally had to go out and retrieve my other bottle. Wicked time getting to the car and then at least a half hour to recover once I got home and had the continuous flow set as high as possible. for the past few days I use the big unit and a canister also when I have to move around. Good temp. solution.
Called Providacare again and they said they didn't have the orders for a bigger concentrator. Called Susan at Dr. M's. Her comment was a very droll "They Lied." Today I called everyone again and as of noon Jerry is on his way to deliver the larger concentrator. Still not sure how the getting out of the house thing will work but we'll deal with that later.
Seeing Marks later this afternoon. I don't think I'm "sick" right now. I just think this is my new low.
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