Material to the Ethereal

[MarkD]

Hope it is smooth sailing going forward. Do you have a go-home target yet?

Lia got her second new knee on Thursday and finally came home late Saturday. Seen here eating her last lunch there. She was crawling the walls. They wouldn't let her take the meds she uses to control her blood pressure so as a result she wasn't allowed to walk at all at first two days. (No one knows anything about her condition, Pure Autonomic Failure.) She also wasn't allowed the 8 mg hydro morphone extended release she takes every morning to control the excruciating bladder pain she gets otherwise. The second night she couldn't sleep at all from the pain.

She is happier now at home and will get her first visit from a highly recommended physical therapist tomorrow morning.

It is hard for them to understand that while pain meds were needed to control pain in her new knee, that wasn't the only dish she needed to keep in the air. While in the hospital, all the staff is so focussed on following every protocol that no one will look past the surgery to address the big picture which she is the expert at handling. At least even at 83 she is adept at advocating for her self without going off the rails in anger the way I might.

 

[OneEyedDiva]

Hope it is smooth sailing going forward. Do you have a go-home target yet?

Lia got her second new knee on Thursday and finally came home late Saturday. Seen here eating her last lunch there. She was crawling the walls. They wouldn't let her take the meds she uses to control her blood pressure so as a result she wasn't allowed to walk at all at first two days. (No one knows anything about her condition, Pure Autonomic Failure.) She also wasn't allowed the 8 mg hydro morphone extended release she takes every morning to control the excruciating bladder pain she gets otherwise. The second night she couldn't sleep at all from the pain.

She is happier now at home and will get her first visit from a highly recommended physical therapist tomorrow morning.

It is hard for them to understand that while pain meds were needed to control pain in her new knee, that wasn't the only dish she needed to keep in the air. While in the hospital, all the staff is so focussed on following every protocol that no one will look past the surgery to address the big picture which she is the expert at handling. At least even at 83 she is adept at advocating for her self without going off the rails in anger the way I might.

I will pray for healing and adequate pain relief for Lia. What she had to endure because of "protocols" is terrible! BTW...I like that name.

 

[hearlady]

Hope it is smooth sailing going forward. Do you have a go-home target yet?

Lia got her second new knee on Thursday and finally came home late Saturday. Seen here eating her last lunch there. She was crawling the walls. They wouldn't let her take the meds she uses to control her blood pressure so as a result she wasn't allowed to walk at all at first two days. (No one knows anything about her condition, Pure Autonomic Failure.) She also wasn't allowed the 8 mg hydro morphone extended release she takes every morning to control the excruciating bladder pain she gets otherwise. The second night she couldn't sleep at all from the pain.

She is happier now at home and will get her first visit from a highly recommended physical therapist tomorrow morning.

It is hard for them to understand that while pain meds were needed to control pain in her new knee, that wasn't the only dish she needed to keep in the air. While in the hospital, all the staff is so focussed on following every protocol that no one will look past the surgery to address the big picture which she is the expert at handling. At least even at 83 she is adept at advocating for her self without going off the rails in anger the way I might.

Tell her when you're pretty in the hospital you are very pretty. I hope she's better soon.

 

[MarkD]

I will pray for healing and adequate pain relief for Lia. What she had to endure because of "protocols" is terrible! BTW...I like that name.

Named after her aunt Lia, who like the rest of her father’s family was born in Italy - except for the baby Jim. Her father was the only one born here so they gave him what they thought was a good American name.

 

[MarkD]

Here is a picture for you I took of a painting in San Francisco a while back. Hopefully those are guardian fairies or even medical .

 

[feywon]

Have been in rehab since Monday evening. Biggest issue at that point was i failed, rather my bladder failed me, when they tried to get me off the Foley catheter. Retained fluid, couldn't urinate belly so swollen the had to put another one in.

But when they took me off it here, success. In meantime i searched what besides drinking water would help. The only advice staff at either place gave was drink lots of water but gently doing some kegel exercises can help too. Had to laugh when i coughed and urinated barely 10 minutes after fussing at my body for the occasional leaks when i've coughed or had sneezing fits last few years & now i needed it to it wouldn't! Such a relief! And makes getting around independently much easier.

Thank you all for the well wishes! Have actually surprised many staff people with my progress. Have post op visit with surgeon on Monday.

 

[feywon]

Hope it is smooth sailing going forward. Do you have a go-home target yet?

Lia got her second new knee on Thursday and finally came home late Saturday. Seen here eating her last lunch there. She was crawling the walls. They wouldn't let her take the meds she uses to control her blood pressure so as a result she wasn't allowed to walk at all at first two days. (No one knows anything about her condition, Pure Autonomic Failure.) She also wasn't allowed the 8 mg hydro morphone extended release she takes every morning to control the excruciating bladder pain she gets otherwise. The second night she couldn't sleep at all from the pain.

She is happier now at home and will get her first visit from a highly recommended physical therapist tomorrow morning.

It is hard for them to understand that while pain meds were needed to control pain in her new knee, that wasn't the only dish she needed to keep in the air. While in the hospital, all the staff is so focussed on following every protocol that no one will look past the surgery to address the big picture which she is the expert at handling. At least even at 83 she is adept at advocating for her self without going off the rails in anger the way I might.

Glad to hear she's back home. Hope things go well.

Did they explain why they wouldn't let her have her 'home' meds. The only reasonable explanation is if they interact badly with what they needed to give her. I brought my 3. But they provided the morning Levothyroxine and evening statin saying insurance companies might refuse reorder later because they know you were hospitalized and the facility would provide. My eye drops which last longer, and which i had just reordered is the only thing they dispensed from my supply.

Here at rehab they provide the levo and statin but let me do my eye drops myself.

 

[MarkD]

Glad to hear she's back home. Hope things go well.

Did they explain why they wouldn't let her have her 'home' meds. The only reasonable explanation is if they interact badly with what they needed to give her. I brought my 3. But they provided the morning Levothyroxine and evening statin saying insurance companies might refuse reorder later because they know you were hospitalized and the facility would provide. My eye drops which last longer, and which i had just reordered is the only thing they dispensed from my supply.

Here at rehab they provide the levo and statin but let me do my eye drops myself.

I'm very happy you are mending so well. I imagine you must really miss your four footers though you at least know they are in the best of hands. Keep up the good rehab!

Some meds she shouldn't take because of her stage 4 kidney disease but she has to take drugs to raise or lower her blood pressure which no longer respond automatically due to her Pure Autonomic Failure. The bladder issue was 'fixed' long ago by having her take 8 mg of hydromorphone extended release every morning. The doctor who came up with that ended her frequent trips to the ER, but of course with all the Ddilod they wanted her to take for her knee surgery there were fears of her O.D.'ing. For her it was an obvious choice to stay with what she was already taking and then add as much of the other as her system could handle as needed.

Lia can actually handle a lot of pain - but not the bladder kind. That doctor explained that the only way to stay out of that pain was to get out of it and preemptively keep out of it because once it flairs up it is much harder to make it go away again. But all of that was way more than they wanted to think about. Her knee surgeon was on her side and helped her go home sooner where she could have the final say again.

She just has to be careful and use a walker to move around when she doesn't feel the need. With her volatile BP she is more apt to take a spill with would really set her back. She has walked around in our garden and has been to the our local dog park (where she overdid it a little). But today she wanted to go to our favorite walk in San Francisco at Fort Funston. So I walked with her to the first bench and then left her to enjoy the ocean breeze to take our pup down to the beach. As I traversed the beach to come up a northern path, she worked from one beach to the next begin sensible. We met up on my way back and headed home.

 

[Jules]

Feywon, I‘m just catching up. Good to see you’re doing better. Slowly but surely.