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Mom to ER - admitted

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Loss of bladder and bowel control. Onc nurse said take to ER. She was admitted. By the time I left her in the Telemetry Unit she was not making sense. She would scratch at her IV and say, "Take out the lard." She was making up words - gibberish. She would have coherent times and tell me to go home or sit down. (She knew I could only stand in the ER - no chairs and no room for any).

I want chemo (5FU on 24/7 drip) to stop. It's making her much too sick. ER wouldn't touch the chemo lines or pump. They started their own IVs.

One nurse messed up the IVs and set Potassium to 50 instead of 20. Mom's IV started burning. She set the sodium at 20 instead of 35. She said she set them both correctly and didn't know what happened. She did NOT set them correctly! What if I hadn't been there to hear my mom complain or to see for myself that the monitors were off?

She looked so little in that hospital bed. ER said all her blood work numbers were bad... potassium, sugar, electrolytes. On a positive note, she did use the bathroom once before I left - she maintained bladder control!

I really think chemo needs to stop or be lowered or something.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Ginny,

I am so sorry to hear of this lastest issue. Hopefully her oncologist will be able to determine quickly what has happened.

I also hope that you don't experience any additinal incompetent nurses. How incredibly scary that has to be to entrust your dear mom to that.

Please keep us posted. You know we worry.

Love, hugs, and prayers for better days,

Terry

Wpturner05
Posts: 120
Joined: Aug 2011

Ginny,

Prayers being lifted for you and mom. I know how difficult it is to see your loved one in the hospital so weak and powerless. May this trip to the hospital bring her back to you feeling better.

As said before, keep us posted - even for those of us that can't post often, I read and follow almost hourly.

Whitney

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

Ginny,

I am so sorry to hear your Mom is in the ER. It looks like they really need to evaluate modification of her chemo medications. During the time I was on chemo therapy they had to give me a break from the 5FU 24/7 drip for a few days twice. They also reduced one of my infused chemo medications on one cycle. In my case it was because I developed bad mouth sores.

Your mom is very fortunate to have you there as her advocate.

I hope with some modifications in medication she will be feeling better soon.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Luvs24's picture
Luvs24
Posts: 78
Joined: Oct 2011

I am so sorry to hear about your mom's issues, and as Paul said, she is fortunate to have you as her advocate. It is so important that there is someone watching out for her and to question what they are doing. Be observant and keep the faith!

Best Wishes,
Beth
Daugher of Roy

DX 6/17/11 T3N1M0
chemo/radiation
10/7/11 Robotic Esophagectomy
Clean Path

sangora
Posts: 218
Joined: Mar 2011

It is not unusual for the first day or so to be unbelievable when the 24/7 program starts. It sometimes takes time for the oncologist to get the dosing right for each individual especially an older patient. Part of her problem may be deydration and a laundry list of other possibilities. It's a scary time. Take a deep breath and have a "nice chat" with her oncologist to find a treatment middle ground. I had been on the pump three weeks and was doing great and then one day, I could not stand or take a step. As did you all, I was hauled off to the ER, did a week in the hospital, got over the hump while they workewd with the doseing and all turned out fine in the end. I ended up doing the remaing 4 months without a hitch. Good luck and know that I and all your other family here is praying for her health and your stamina. Sam

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Finally! It took hours to get Onc to ok, but we pulled the battery from the pump. My bro had to do it since he was with mom and I am 30+ miles away. He was apprehensive, but he did it. Mom tried to tell him not to because she wants the cancer killed. I conveyed that once she's stronger we'll start again with a different dose.

Now she needs to get stronger, build up her bloodwork levels and EAT.

I'm so relieved. I am questioning this kind of fight vs. just pain drugs and let it go.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I hope they keep mom for several days to feed and care for her with the IVs. She was in bad shape when she got there. My brother said she is still bad.

At least she once again has bowel and bladder control!

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Way to advocate for her. Finding the right chemo mix has got to be challenging. I don't even the docs or the patients.

Glad your mom is still determined to rid herself of the cancer. It takes a strong spirit to overcome. Sounds like she's got that.

Prayers and strength to you all! Thank you for the update.

Terry

JimboC's picture
JimboC
Posts: 270
Joined: Mar 2011

I'm glad you finally got it stopped Ginny. I hope mom is feeling better now. 5FU is a tough old drug but it's usually very effective on a lot of cancers. Bad part is it can be rough on us as well. There is simply no excuse for medication errors like your mom experienced. Many hospitals have safeguards built in to avoid such errors. Please give your mom our love and wishes for feeling better soon.

megmacmd
Posts: 94
Joined: Jun 2011

I have been through 11 treatment of flofox 5fu cispatinum and oxipaltinum I sailed through most of it but eventually the cumulative effect from being a fairly healthy 56 your old stage IVa to lots of side effects memory peripheralneuropathy caught up with me I am fighting this alone as my husband of 30 years died suddendly 3 years of a brain anuersym and my children are in thier own lives one married working for JP Morgan chase in Delaware one in Richmond as an occupational therapist with boyfriend in Vermont in Law school and the youngest a third year at UVA university of virginia.I have decided to stop chemo and let things take there course since the side effects seem to be as bad as the disease I watched my mother and sister die of breast cancer my mother tool the non invasive way out and seemed to have an easier time my sister went for everything and it was very prolonged and agonizing my dad had bladder cancer and he took a middle way some chemo then just pallative and he too had a fairly good end of life quality vs quantity hard to decide when that choose must be made.But I believe your body tells you when enough is enough despite what the doctors and everyone else thinks. I personally have come to my enough is enough although I had good results with 11 flofox treatments it eventualy wore me down to little energy and no appetite nausea peripheralneuropathy I want to work until I cant any more so I have decided no more chemo just pain control until I cant work then sit back and take what comes May seem like giving up but I dont want to drag it out especailly for all my loved ones Dont really know what Im in for but willing to face it on my own terms without being poisoned dragging things out All or Nothing is my motto not everyone will agree but my children are on the same page after seeing 3 cancer deaths and an unexpected death of their father If any one has any secrets on how to get through this gracefully Id be all ears.Less is better simple and serene is my wish Meg

BMGky
Posts: 666
Joined: May 2010

Sure hope your Mom is doing better and is more comfortable. It is so good you are there to help her. Please keep us posted. BMGky

Wife of patient...
Posts: 129
Joined: Oct 2011

Ginny, what a stressful time. I hope moms oncologist can straighten the situations out. We are her for you.
Sal

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Going to see mom tonight. Brother was there for about 4 hours. Seems she was out of sodium! A drug she takes normally conflicted with the chemo and zapped up all her necessary things - sodium, potassium, electrolytes, etc. Now that we've stopped chemo and she's getting loaded with IVs we should see some improvement. Doc said they'll keep her a couple days.

Now that I no longer need folks, they are all calling! Oncologist, Radiologist, etc. Sheesh... return calls when I need them not now that everything is smooth sailing. Oh well. Tells me that WE have to stay on top of things and call call call call. 3 calls to the Onc nurse w/o a return call yesterday!

Gotta read those IV bags too. And the pump meters.

I'm glad mom wants to fight the cancer though. Up to this point all she'd say is let me die, i want to die, etc. It's hard to hear that, so I said, ok, we'll stop everything. Well, no... she doesn't want that either! Whew!

Thank you everybody for your information and your support. I'll report back tomorrow.

Jim - hope you are doing ok!!!

Jenny32's picture
Jenny32
Posts: 23
Joined: Oct 2011

Glad to hear that they figured out what she needs! It is scary how much you have to push to get things in order between the nurses and the doctors. My dad was just released from the hospital this evening after going in Monday morning to have his feeding tube put in. I had to call the doctors office twice and I made sure to go to the hospital each day to make sure he was getting what he needed. We were very unhappy with the staff at the hospital my dad was at. You really do have to stay on top of things when it comes to getting adequate care. Phone call, after phone call... I know the feeling. When my dad was in the nursing home for 6 months, I felt in part like I was his physician the way I oversaw his care. I think doctors take on way too many patients to focus on the needs of any one particular patient and that is why it is important that we are always advocates for our loved ones.

We haven't even started down the path with my dad and chemo yet. That was put on hold until the feeding tube was put into place. Maybe next week that will start and they will resume the radiation treatments.

Just wanted to let you know that I am relieved for you and your mother. Good to hear that she is ready to push forward and hopefully tomorrow will be a better day.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Ginny,

I am hoping that your mom is feeling a bit better. I'm sure she will perk up now that the electrolytes are getting back to normal.

Be sure to get some rest for yourself too..

Lisha

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

I'm so glad that your mom is in hospital. I know it's a miserable place to be, and they do make mistakes, but it is good that they are able to stabilize her levels, and give her some bed rest.
I've heard the 'please just let me die' too, and it is truly heartbreaking. I'm sorry you had to go through that, but now that they've got her more comfortable, I hope that the mild hallucinations stop and she can be her wonderful loving self again.

be well,
Chantal

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Mom is still in the hospital, but oh what a joy to see her with her eyes open! She was talking and asking questions and responding to whatever was being said! Still argumentative, but that's my mom. She is still confused at times - I wonder what causes confusion. Does not remember anything about the ER or the day leading up to it. She worries about the least little things - who is going to take out the trash, not having underwear on (funny), too much noise from the patient in the next bed and that patient gets too many visitors who talk too much.

Mom told me she does not want to go too many days before we start chemo again. She looks well enough to be released - so maybe today. If they keep her one more day and continue the IVs it will be ok with me.

I will talk carefully with the Onc doc to make sure the levels of chemo are mild enough for mom - I do not want another episode like this, but now I think we are better able to nip it before it gets this bad. Mom needs to understand that she needs to tell us more explicitly what is wrong. She just kept saying "I'm so sick. I want to just die." Well, chemo and rads make people sick. I am going to assume that we need to proactive from the point in time where she appears to be getting weaker.

Thank you everyone!

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Thanks for letting us know, Ginny! Glad you and your brother are there and able to stay on top of this for your mom.

Wonderful that she's having a better day. Hope tomorrow and the next day and the next day....

Hugs & Strength to you, brother AND MOM!

Trrry

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

I spent 14 days in the hospital after my third round of chemo. It is tough and I am only in my mid 50's. Seems like they bring you to the very brink of death and then bring you back with fluids and time. I knew that the hospital bed was where I needed to be at the time and I have no regrets. I am sure that your mom will get well enough to come home and continue with an adjusted dosing of chemo and move ahead to recovery. I wish you guys the best.
Jim

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

So glad your mom is feeling a little better. She needs to be strong if she wants to continue the chemo. Like the doctors told us, chemo is extremely hard on an otherwise healthy person but what it could do to her in a weakened state is something you don't want to deal with. I'm happy you were there with your mom to oversee some incompetence at the hospital. Man, you just shouldnt have to deal with that along with everything else but I guess all medical people are "practicing" and they are, after all, human and can make mistakes. Take care Ginny and keep us updated.
Rita

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Brother was with mom almost all day. (He is also taking care of his wife who is undergoing round 6 of chemo for recurring breast cancer. It's got to be hard on my brother.)

I am heading to mom's house to get her some things. Yesterday she said she wanted a toothbrush. I took her a nice new toothbrush. When I got there she said I don't need a toothbrush! Now she needs chap stick, so I've got that to take. I will pick up some things at her house and take them in case she wants them.

Brother said they gave her an insulin shot today. Sugars were 168. I really agree that she is much better off in the hospital, so I am not going to complain if they keep her. I wish I had known which hospital to take her so she could be visited by her Oncologist and Radiologist. They are not admitted to where she is now. Today was the day for the PICC line dressing change and new chemo bag. I am sure she'll be ok for a few days w/o chemo. I want her back to normal then we can fill her full of poison again and radiate the hell out of the tumor. I'm glad she wants to fight the cancer!

MissusB's picture
MissusB
Posts: 112
Joined: Jul 2011

I'll be praying that your Mom gets stronger every day and is able to get back to her fight as soon as possible. Sounds like she's in the right frame of mind now!

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

When I got to the hospital, mom's IV machine was beeping. She looked distressed. (Mom doesn't like annoying things and the beeping really annoyed her.) I called for the nurse. When she came in she fussed with the IV and turned off the beeping. Said mom needed to keep her hand flat. Well, she continued to sip her water and the machine started beeping again. Nurse came in and administered something into the IV. Mom said it hurt and the nurse apologized.

I noticed mom's hand starting to swell, and that the IV was bleeding. I buzzed for the nurse a 3rd time. This time she disconnected the IV and removed the needle. Said she'd be back to find another vein. Mom used the "freedom" to use the potty. Then I straightened her bed and got her comfy.

In comes another nurse for temp and BP. Mom's BP was 189. Doc ordered atenolol to be administered. The nurses were going to return to take her blood sugars. They were not happy that on didn't touch her dinner. She just won't eat. Not because it hurts, but because she just doesn't want to eat.

Mom said she will be released at noon tomorrow. Nurse said there are no release orders. We just wait. Doc probably wants to read all her lab numbers before he releases her. I'm ready to get her if she is released.

I'm tired.

chemosmoker's picture
chemosmoker
Posts: 525
Joined: Aug 2011

Ginny,
I'm sorry i haven't written more. I've been in a pretty horribly place emotionally and am just hanging on now.

I am glad your mom is in a safe place and will hopeful get he cre she needs now.
KNOW that I am thinking about you both an that I love you,
More soon when I can,

God bless,
Eric

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Ginny,

I know things are starting to come at you in waves right now. Don't let that discourage you.

There will be more attentive nurses, days with fewer problems, and days that are just plain *good*. Sorry that today isn't one of them.

We are here for you to vent. Let us know how we can help!

With love & hugs for extra strength!

Terry

jon2311
Posts: 1
Joined: Nov 2011

Run. If the nurse can't even do that right, I would watch them like a hawk.
That reflects on their supervision. Tell them to show you when they set anything
and query them about everything, ask what it is , how it's taken, how much and why,
if you don't nobody will... I have had 5fu and I have had the Potassium burn, I pinched the line off until they fixed it, lucky for me, not everybody is strong enough to do that.
My wife was my advocate and nothing gets past her. .......You're not there to be their friend. They are working for you.........

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I got a call from the hospital Doc who said he was releasing her after 1:30 today. We drove to the hospital to get her. I asked what her BP readings were. The most recent was 188! I asked the nurse how they could release her with BP that high? She said she told the doc mom's readings and all were in the 180's. She offered to get him on the phone for me and I agreed.

When he called (within 3 minutes), I asked him the same question - how can you release her with BP readings of 180, 185, and 188? He sort of hemmed and hawed and finally said, he would change her BP meds and monitor her for 24 more hours.

Fine. Ok. I should not have had to fuss over that. The nurse was very happy that I questioned the doc. Within 30 minutes the nurse came back with Lipitor. I stayed with mom a few more hours and they were taking BP every 10 minutes. It got down to 177.

So, we'll try again tomorrow to see how things go.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

You should NOT have have to stand in this large a gap! I cannot believe the care provided your mom during this stay.

I'm sure you are at wit's end with the medical staff there. Thank God for you and your brother! and your poor brother! What a challenge facing he and his wife....

My heart goes out to you. Wish there were something I could do other than say

You're doing the right things! Thank you for being there!

Terry

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I think the nurses have been good (except for the error with the potassium drip). Yesterday's nurse was very concerned about the BP, but they can only argue so much with a doc before getting into trouble (I guess). I'm glad she let me talk with the doctor.

I will go back to the hospital today, check her BP on her new meds, and see if they'll release her. I am brining her to my house until Monday when we go to Radiology and Oncology. Chemo (5FU) and Rads start up again.

I hope it's ok for them to start/stop during these bumps in the road and that by starting/stopping we are not screwing things up.

Wpturner05
Posts: 120
Joined: Aug 2011

Ginny,

Lipitor is a medication to lower cholesterol - It may not have an immediate effect of blood pressure - it may over a long period of time if she has high cholesterol, but I don't think it will be lowering her BP to safely be discharged. Unless they are using it off label along with other therapies . . .

Just a thought.

Whitney

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