I'm posting this for my (74 year old) sister. It will be long. I'm trying to be a good advocate for her. Sorry if I rant a bit. It's all new and scary. She entered the hospital 3+ weeks ago as an emergency having felt I'll and not eaten or drank much for 5 days. She was diagnosed with complete kidney failure and potassium so high they told her she probably wouldn't have survived the night. They got the potassium down and admitted her. Started dialysis. She was nauseous and weak but in about a week was able to go to a nursing home on a Thursday night.
The nursing home missed her Saturday dialysis appointment and so stepping in to say that it was unacceptable to wait for her next scheduled appointment (not until Tuesday) they sent her back to the hospital.
They did dialysis and started antibiotic for pneumonia because white count was up.
It should be noted that throughout all this she couldn't eat and was probably surviving on nepro and some ensure.
White count came down well, but they were concerned about edema in her legs. Called in their team's ESRF big wig and he ordered a 5 hour dialysis. Got the fluid off her legs but she became delusional and somewhat combative.
That has gotten much better after a couple of days, although she still has trouble finding words and forgets sporadic parts of the day which really upsets her.
She is still only sipping nepro.
They put her back on antibiotic after finding fluid around 1 lung. (She has trouble staying upright and always slides down the bed.)
Yesterday she seemed good. We chatted and she drank an entire nepro while I was there. Still says she too sick and no appetite for solid food. Today she has awful stomach pain and nausea.
No nepro and no food. They give her Zofran but doesn't seem to help.
I'm at a loss and don't know what to do. I haven't gotten updated in a few days. The nurses say her "numbers are good" which I guess is vitals and blood sugar. She's incredibly weak. The antibiotic was unhooked from her iv today. Maybe that is making her so sick? I'm worried about her not eating. I have a feeling no one is reporting that but i don't know.
Should I ask about a feeding tube? Is it normal to be so nauseated and not want to eat with dialysis? I don't know where to turn. Again sorry for the rant. Thank you.
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Wow, your sister has been through a lot. She's a fighter for sure. The thing with kidney failure is the water retention AND the toxic buildup. She probably still has a ways to go before dialysis is going to make her feel better. But it will. On top of all that, having an infection and then the antibiotics, that too will make her nauseous. Good that they got that under control. It's all steps, one thing at a time. Speak to her doctor about the feeding tube. We really wouldn't be the ones to say. I know you are scared, and rightly so. But it sounds like she is on a path to help her. The fact that the nursing home missed her dialysis is VERY troubling. But then, going back to the hospital, they found the infection. She is lucky to have you.
I do not tolerate when nurses or doctors brush people off with "the numbers are good." What does that mean? Do you understand labs readings, such as GFR and creatinine and the other factors for numbers? Make them explain things to you. YOU have the right. Here's some information: kidney.org/atoz/content/und...
Thank you. At the hospital early to try to catch a doctor. Going to talk about iv nutrition or feeding tube. What is scary and troubling now is a form of psychosis. She's been in the hospital (less 2 nights at the rehab place) for 3+ weeks now and periodically has these psychotic periods that may be ICU psychosis. She also doesn't sleep much at all. That is concerning too. So hard to watch someone go through this. Thank you so much for the support.
Thank goodness, your sister has you. The only advice I can give is to try to be a little more assertive. You have a right to see and speak to the doctors so don't be put off. Bassetmommer gave you good information about how dialysis take time. However, don't let up about questioning her need for better nutrition as well as sleep. Your visits have to be very important to her as well as your advocacy. God bless you for being there for her. Please keep us posted as to how things are going. You're doing such an important job for her.
Thank you. We spoke to a doctor this morning. She now has delirium which will make it even harder to get nutrition into her. The doctor talked about inserting a naso gastric tube, but with delirium she might pull it out. I must admit I'm losing hope for much of a recovery.
I’m so sorry you and your sister have to go through such pain. As Bassetmommer and drmind said, she is very lucky to have you by her side. You have the right to be informed about every treatment and medication she takes, also you can ask whatever you need to understand without ant doubt the whole treatment. Talk to her doctor, visit the national Kidney Foundation, (NFK Cares) They offer support for people (patients, family members and or caregivers) to cope with dialysis. There’s also the Renal support network - rsnhope.org or Neph Cure - nephcure.org (they have support groups and distance education via Zoom. If she is not able to manage her treatment you can become her guardian or caregiver and can be able to intervene whenever you have any questions, concerns or complaints. It is a lot to process at the beginning but you can be able to handle it, I’m sure, you have the love and care for your sister and you have the strength to fight for her, you are not alone, we are all here for you!
Tuesday Thursday Saturday was to be her regular schedule. If they have to cut short because of low bp they might finish the next day. Now she is experiencing hospital acquired delirium. It's just awful. The doctor is afraid she'll rip a naso gastric tube out. I don't know how they'll get nutrition into her.
I looked up hospital induce delirium and found this info. It say nutrition and hydration are critical. I cannot imagine that they have not had anyone else who needs a feeding tube and know how to anchor it so the patient cannot rip it out. I would pursue this and insist on some better care for your sister. Many places are so overwhelmed and short staffed that patients become statistics and not a priority. Keep advocating. See if the hospital has palliative care also which will entitle your sister to better management. Palliative care is not a death sentence, its better care.
"Treating delirium involves providing good basic care, such as ensuring patients are getting enough fluids and nutrients. It also includes reorienting them to their surroundings. Family members should ensure elderly patients have their hearing aids, dentures, glasses or whatever else they need to engage their senses. Other things that can help include daily exercise, removing medications if possible and surrounding patients with familiar objects."
When you visit her, try to tell her where and why she's there and most important try to tell her what day and time it is. Try to reassure her that she'll be fine soon.Some people get disoriented when in the ICU and/or the hospital. Many years ago when working in a hospital, I was called several times to the ICU to help patients who woke up and were very confused and very scared. Staff there are usually rushing around with little time for chit chat. Sending continued thoughts and prayers. Hoping the naso gastro tube works.
Also, if allowed bring her something familiar that she can hold like a shawl, blanket, shirt, bathrobe, etc ..anything she may be very familiar with. I used to leave a little calendar notebook and mark each day for them. A small clock/watch if allowed is also.heloful.
wow your sister going through a lot. You are to trying to be her caregiver at this time . I know when I was in the hospital recently my low blood pressure and some toxins cause me a seizure is why I went to hospital but doctors said that doesn’t usually happen if a person is getting right dialysis which they were sure I was but they did increase it. But he did tell me how toxins can build and they can cause all kinds of things if you get to the uremia point it can cause delirium nauseous swelling so I hope they get that under control. Does she have Iv is she trying to pull them out. If she not touching them them maybe she may need a feeding tube. Ask a lot of questions how long will it have to stay . Ect.Prayers lifted to you and your sister .🙏🙏
I agree with others who think your sister has hospital acquired delirium. My father had that when he went through open heart surgery. What happened to him is that the mix of drugs and the environment caused his mind to go awry. It's important for a pharmacist or doctor recheck and rebalance the meds for interactions. They often give all meds all at once to a patient and that's not handled well. Or they don't check for side effects and swap out certain meds for others if that is needed. Then, take a good look at the nurses station and where it's located. Are nurses laughing and chatting throughout the night, making it look like daytime? Are they barging in at all times of the time to check on vitals? Then, also look at the room. Are the curtains open during the day? Do they close them at night? Do they dim the lights at night? Is there a clock in the room to show the time? Is there a noisy partner that keeps her awake? Does she get a little physical therapy at an appropriate time during the day? It's very easy for seniors to lose their bearings and become delusional. Give the staff a call, pay your sister a call, and then bring to attention those things that you notice. Don't ignore her drug regimen either, ask for a review. This condition is generally reversible when enough attention is given to it. You're a wonderful sister for caring so much. Thank you!
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Preparing for a new chapter
So sad
Feeling likr dialysis is making me worse
