Hello , My husband that is home now with a pic line and IV antibiotics
And nephrology kidney tubes has zilch energy, if he does one thing he’s wiped out the entire day. Does anyone have any proven ideas for exhaustion and or
Energy aid? He’s done ensure no help. He takes multi vitamins , a handful a supplements from cancer centers Already.
Thank you
Kim (wife of Mel)
He has an infection--sepsis makes people feel wiped out--get him up in the am to do his ADL's--activities of daily living---shave, bed bath, eat, toilet, etc..-is he getting physical therapy or occupational therapy at home? If so, they will focus on getting him back on his feet/ doing ADL's.... as far as the nephrostomy tubes, be careful, they can be pulled out...
Some posters here endorse taking Birm for energy and their cancer... Get him to eat and sit up for as long as he can....when he needs to sleep--rest....
Best of luck,
Fish
Thank you for the great ideas , he is not getting any therapy at home but it’s in the top of our list now.
Great idea ! Thank you
Needs to eat, get calories.. I was exactly the same..need help out of chair and bed. I did RT and double adt at the same time. the prob for me was that I could find no comfort , sleep time was a bit nighmarish having those bags fill at night. So much pressure on his urology. Anything to find any comfort. comfort . Tell him to be careful not to accidentally pull a tub out. Immediate trip to cath lab . I did that twice on my right side. Painful and not good. If going out in public I recommend getting some stronger straps for those bags . Otherwise they’d can keep slipping. Anti biotics in hindsight did me damage. After tubes stents were put in then finally all,was good . Bu5 a y4 of every strong anti . I had constant u t is the entire time. The stents were colonized with staff , step , e-coli and others and required constant antis. Coprocessor and all strong antibiotics depleted me and caused much joint and muscle pain . Told not to lift over ten pounds while the tubes were on. I had chronic fatigue . Sometimes not leaving bed for a couple days at a time. Sleep was the on respite even though tortured . Only when he can rest his mind and sleep is brief escape from the misery. Sorry to be so blunt . Don’t want to scare you . You are seeing for yourself this ordeal. My wife basically put my shoes on and waited on me hand and foot. I was never one to have recieved this type of help before.. do keep strong , he needs you . I m happy he’s home. Easy to say . Hard to,do . somehow some you’ve got to divert some of pressure off of yourself. I praise you for helping him as I priase my wife for saving me.. He can only sleep on his sides. I found using many pillows between knees and even under arms helped comfort. I ve taken 20 mgs melatonin before bed since the first day. He will heal with rest. It helps .. My opinion is that his mental state can be propped up somehow ...focus him on getting those blasted tubes off . Tell him that he s not done yet. Scott
As my year continued with tubes and then stints I was left with only one anti-biotic that still worked . Bactrim , and it’s a bad one. My UTI s became resistant to all of the other anti-biotics like Cipro . That alone took a big hit on my immune system. The good news. Once the tubes then the stents were out . Never had another uti .. We know he’s bad now.. he can get better. This an all out assault on him. God be with you both .. best wishes..
You always give me hope Scott! I’m blessed to have two of my daughters at home with me. My oldest is 32 and a pure heavenly blessing, she helped 10 years ago when my husband had his first Dx with our youngest child being a mother basically to her. Then she was 22 and my youngest was 6 that go around. Plus our middle daughter now 26 was finally diagnosed at age 11 with the most advanced case of crohns two specialists had ever seen, we’ve spent years in and out of the hospital with her, once again my oldest being mother to the youngest . God bless every time her dad get his cancer she stays well. Gods blessings to me. I’m so happy you have those dreaded tubes out.
Your friend,
Kim
Poor little girl with blasted chrohns .. what an ordeal.. I can’t tell you how good I feel that you have these girls with you. I did not know if you were alone.. Thank God ........ until he gets out of this dark woods it’s a precarious and fragile existence.. with love he is covered... Thanks Kim for this great news.. we ll keep praying until he improves and beyond. Peace ..
You have my adult daughter crying from your beautiful words, I think your writing made her feel better that we’re not alone. She said your fellow form members have their own troubles how wonderful of them.
Kim
I’m joyed. You’ve cheered me up too..Thank you . With support we’ll do our best and take it as it comes. We are all getting a chance to examine our life’s. Suffering exist for reasons beyond my scope. Stay close Love cures all.. my sherry would get me up . Sometimes with a great fight and resistance from me. I knew if I was alone , I would have never gotten up. She did it any wAy It was easy at the worst to just feel like curling up in a ball and giving up.. when we are hardest to love is when we need it the most. You all are his reason to endure. I believe that we are not in charge of our own birth or death . These are in more able hands than ours .I was a bad patient . Not happy, in fact enraged.. that took until last yr to start to calm down . Hope he is calm . Build hope and keep his spirits up any way possible. 😊
Great Nal. Wish I had known of this back then .
Do you know why when my husband had his exploratory exam when he was in the hospital last week why he would have a lot of calcification in the bed where his prostate had been. That’s also what has been in his catheter when he had them and they would clog, a crystal classification would clog them up. Not sure about the kidney tubes they never said when they changed his tubes out.
You know when he was diagnosed with his recurrence they also were at first concerned with a adrenal gland spot that showed up on his scans at first they thought maybe it was part of the recurrence that went there but it didn’t light up during the pet scan so they lost interest in the cyst there or whatever it was.
Hi Kim.
It sounds like your husband is very sick and has been going through a lot. I know that lack of energy can be very frustrating and frightening at times for the sufferer as well as for the relative. But I wouldn't do much to change the situation to be honest. Help your husband to sit up a little bit every day, make sure that he is eating little but often, give him plenty of water to drink or light herbal teas, and let him rest and sleep as much as he needs to. Later, when he is perhaps a little stronger, you can see if little walks around the house or even outside are possible. But don't push it. That s my strong advice.
Good luck
Mel.
So how do we get the drs to take serious the adrenal Tumor. Once they decided they didn’t think it’s cancer because it didn’t light up they said to seek out further follow up on our own. We went to endro and they didn’t do anything further than looking at the scan. They said it was fairly small and since he was dealing with PCA they didn’t want to deal with this now ?
Hopefully Mayo Clinic on Mar 4 will be helpful . How are you doing?
Rochester MN
I’m not for sure if he could handle the trip any sooner , praying we make the mar 4th one.
Help me ask
Some hopeful test news:🙏🏻
Steroids and Radium 223
Headaches, Confusion... Zytiga?
Gleason score without prostate biopsy
