Responses from the ALS team at UCSF

Status
Not open for further replies.

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
I’m better. Still uncomfortable but my hubby is with me and does a great job getting me to bathroom, etc. waiting for instructions on how to feed. Should be out by Friday they say!
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Good news and a perspective to be home for the weekend! :)
 

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
Well, procedure done by midnight on Tuesday. At least that’s when they tucked me in for the night. Started tube feedings on Wednesday and all went well. Continued today. Again, all ok. Targeted home on Friday afternoon. Now tonight being told I have to stay until Sunday! Blood tests all look fine, at least in my eyes no big ups or downs in anything. Told this afternoon my electrolytes are just fine. I know of no post anywhere where someone stays six days in the hospital for installing a PEG under IR with conscious sedation. All I get is “for your safety”. Any idea what specific questions to ask? My husband is staying in a motor inn but with SF rates, by Sunday we are $3000!! I’m getting panicked.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,842
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Yes, that seems quite excessive. Someone likely wanted to play it [very] safe given the distance from Idaho to SF. Do you have care established w/ a hospital w/ an ER there? That might be something to point out (and certainly to have done).

The last time Larry was in the hospital, we listened politely to the plan for another few days and declined it, whereupon we were politely discharged in the usual fashion -- without prejudice, you might say. Were I facing the hotel bill you are in the condition you're in, that's what I'd do. "I think we will want to be discharged on Friday, as originally planned, absent any concrete evidence that justifies changing that plan." (You can put that into words that sound like you.)

Without the courage of your conviction, they don't need to justify the change of heart.

Best,
Laurie
 
Last edited:

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
All here know that we also have a home in Chico California which is 3 hours from SF. We have Enloe Hospital which is a trauma Center for the five surrounding counties. I like your suggestion. Will run it by my husband tomorrow morning. I really think once they change the dressing and feed me tomorrow morning, should be fine. I do need to see the case manager to see how to get supplies. She may not even work the weekends! You have given me a starting tool and I greatly appreciate it
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
You must both be so exhausted with the back and forth of this place! Get to the bottom of this, mayb also let your husband talk to the docs and tell him about your grieves. If you worry about cost that won't help with recovery.
They wanted to keep my boyfriend for longer than a week (11 days they suggested) after the procedure because inflammation values were up and they put him on antibiotics on iv. So there were minor complications but he already had slightly increased values the week before he got the peg. He so hoped to leave on Friday and was so destroyed when they wanted to tie him down for another week. I told him to speak his mind about staying there longer, he did in no uncertain terms, that he would completely lose his mind. The doctor heard him and made the deal to stay through the weekend, have two more rounds of antibiotics on Monday and then be discharged.
You are free to leave at any moment, it's not a prison. If you feel comfortable enough traveling three hours you can check out like Laurie suggested. If it's just because they haven't had a talk with you yet about stoma care and supplies that doesn't have to stop you. Waldo's kind offer stands, you or your husband can ask any question regarding it right here, so we got your back in a new situation like this.
 

whereswaldo

Active member
Joined
Mar 3, 2018
Messages
83
Reason
PALS
Diagnosis
06/2013
Country
US
State
Ca
We have everything that you need short term. You will need a prescription for the formula, but we get it through Option Care delivered here. I don't know about Idaho delivery, but I'm sure they ship there also.
 

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
I read my postings and sound like a brat! Just hard to stay optimistic when the rug keeps getting pulled. I guess the delay is because of how much weight I lost. Want to be very cautious about giving me too much just out of the gate. Needs to get me to 375 mil, 3 times a day. I’m finally at 280. Tomorrow I should be at 375. Haven’t had any problems so maybe Sunday. Appreciate all your support! Waldo, I’m hoping that this order goes through in time to have it delivered. I’ve a friend who works at Option Care and she is looking for the orders. If not, I will take you up on your generous offer
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
You don't sound like a brat at all!
Good to hear that their interest is to cocker you up some before they release you into the wild.
 

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
Will I see someone about stoma care..? Haven’t so far, but they tell me a home care nurse Will come to the house probably the day I get home. Is it possible they I’ll wait for her?
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
177
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
Don't count on home health to be knowledgeable about a G tube or stoma care. While the nurse they sent out when I first got my tube was really nice, I am not sure she had ever dealt with a PEG before.

Everything I know about my tube came from research on the web. There is a really good Facebook group called Adult GTube Feeding that has an extensive repository of information under the Files some of it written by others with G tubes. Might also search for Tube Chic. Her site has a lot of good information as well.
 

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
That’s scary, but sure appreciate the other information sources! Heading back to my house today. Can’t wait to be in my own bed and wash my hair!! Still pretty slow and I hurt, but I’m sure that will quit soon
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
You settled in alright back home?
 

Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
150
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
Wishmobbing, thanks for checking up on me. Yes, I’m home, showered and hair washed, and feeling much better. I thought my weight would stabilize but am down another pound. That, too, should adjust. I think I must be impatient! I’m learning about myself more and more.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,605
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Completely unrelated to your actual procedure or to ALS in any way, but there is NOTHING better than that feeling after having your hair washed and that layer of hospital smell washed off when you get home. Any time in my life I've gone through an operation or hospital stay, the thought of that very thing is what keeps me going. It's the little things- and clean hair and my own "smell" is pretty high on my list. Glad you are finally home and on the mend from what sounds like quite an extended stay and a confusing procedure.
 
Status
Not open for further replies.
Top