One thing the hospital cannot get a handle on since Tuesday is his sodium levels. On 9/7 and 9/27 blood work at Moffitt his sodium level dropped on both to 131 from 139 previously. At the hospital after the seizure his sodium was critically low. His sodium today is 126. Normal is 135 or higher. Below that becomes dangerous and can cause seizures etc. They put him on Iv fluid with sodium but it falls after. They told us to bring Gatorade yesterday. It still falls. He is drinking several high calorie boosts with benecalorie in it at 860 calories per shake but he’s mostly on a high calorie shake diet. Anyone have any ideas or experience with this? The fact the hospital has no answers scares me. If they release him with a low sodium level it’s not going to be good.
Low/falling sodium levels?: One thing... - Lung Cancer Support
Lung Cancer Support
No sadly I don't, but the hospital certainly should? And clearly it needs to be addressed before discharge.
No idea here. It must be a rare side effect.
Hi again Lisa. So sorry your dad is still struggling. As far as sodium, my own levels fell inexplictedly to 127 in February & April , 2017. My Dr’s were concerned as I was. As I was otherwise in acceptable health ( for me, lol ) I started consciously eating a LOT more salt ( HEAVILY salted carrot sticks and popcorn, sodium rich soups, Gatorade, chips et al ) . Slowly over the next 4 or 5 months I got my levels back up into the low normal range where they remain today. An IV with sodium is great when hospitalized, but to maintain the sodium levels, he needs to intake more sodium. The only other thing that the Dr’s need to look into is that his body is not excessively ridding itself of sodium. That is obviously a question for the Dr’s and specialists. All Best Wishes to You and your Dad, judg69
Thank you so much for your help! I think with him just drinking the high calorie boost he’s not getting the sodium he needs? But not sure that’s the only reason BUT maybe it is and it’s that simple?! The Gatorade is definitely going to become a daily staple!!! I hope you all know how invaluable you have been to me with your help. Without you all I would be struggling more so than I am. You all have helped me more than you know and I cannot thank you all enough. Being an “only child”, it’s hard to feel alone helping my family. But you all make it better and help me tremendously. Please know I thank you and everyone so much!! How are YOU doing??
Is that the same as low potassium? I had problems with that. Had potassium IVs and took potassium tablets. At least that is what my doctor called it. It made me very dehydrated. Went to hospital for this as well. It made me incredibly week and gave me chills. I still take potassium tablets daily. I have another friend with a different cancer hospitalized several times due to low sodium. I don’t know what causes this.
The advise to "eat" salt is good advise. One thing to think about. If the hospital is ready to release him before you feel he is ready or you are prepared to care for him at home, you might think about a rehabilitation hospital in the mean time. It is good that the hospitals don't keep people very long as there are so many germs there, but sometimes people just aren't ready to be home just yet. I have experienced that myself.
Hope you get some answers soon about salt and brain MRI.
Good advice! You might want to push for a rehab facility. Also, if you don’t feel safe having him released you can demand that they keep him another day.
Thank you, Gloria! I don’t think they will release him soon now as I got that impression today. But maybe I’m wrong. His eyesight is going blurry today. I’m so lost and on edge. I have this sense of urgency and yet I don’t know where to turn. I don’t deal well with situations I feel helpless in. I am a hands on, take control type and I don’t know what to do right now or where to turn. The only thing I know to do is drive what imaging and records I can gather from hospital in Orlando to Moffitt in Tampa tomorrow or Tuesday. His oncologist knows nothing about all this except that he was admitted. He needs to be involved!!!
Please know I understand how you feel for several reasons. I am the same type of person you are. "just tell me what is wrong and let me find the solution". Very much hands on. The second reason is, I have also been in a position several times in not knowing where to turn. I would guess there are other people on here who have been in this same situation.
I have always felt sometimes patients fall through the cracks when being treated by both medical and radiol Oncologist. Not sure that is what has happened to your dad at this time or not. Who is treating him in the hospital?
You know you can have all of his records faxed over to his Oncologist prior to talking to him, if you could get an appointment with him right away. However, I expect he might want to confir with the doctors who are treating him before he talks to you.
Lisa, who do you have confidence in? There needs to be a # 1 person (doctor) who you can go to and who you can count on who knows what is going on with your dad's total health. Kind of a director. You and your dad have to make the difficult decisions when they come up, but you have to have someone to turn to at times like this. Is he in a study? I can't remember.
The only advise I can give you is don't be put off by anyone, even if you do have to hand deliver his records. If you can get through to him or his nurse about your dad's condition in the hospital without making a trip, it might be better for you until he sees the records. But, you just handle it the way your heart says. Every body is different and it sounds like your dad has a lot going on in his body.
You all are in our hearts and thoughts. You are a daughter to be proud of Lisa. Have a good cry and hang in there.
Thank you for your kind words and all of your help, Gloria!! I am still at the hospital now. He is swelling in his face and hands and with the SVC I’m not happy the nurses left him like this especially since I had it noted in the chart yesterday at nurses station that his face looked like it was swelling. His vision went blurry today and he’s more unsteady. Then come to find out they started him on Lyrica today and I didn’t want him on Lyrica! After a quick research I found Lyrica can cause blurry vision, unsteadiness AND arm and leg swelling so since Lyrica was started today and his blurry vision/arm swelling started today I had them take him off it. His nurse is very angry at this as she said he can make the decision, however I advised my dad Lyrica causes blurry vision and he has sudden blurry vision and my dad said yes, take me off of it. His nurse is angry at me and my mom right now. Too bad.
I can’t get his oncologist on the phone really so driving there and forcing someone to talk to me and give them his imaging cds and records seems the best way to accomplish it. I’m done with him being a number. Plus I am considering taking him out of network to MD Anderson if it is lepto. We won’t have insurance for it but st this point I just don’t care about anything other than getting him help.
Main doctor to rely on? That would be his radiation oncologist. His radiation oncologist is wonderful and has been there for my dad through it all. Has gone above and beyond. But oncologist? No. He’s good at what he does, don’t get me wrong, but we don’t have a personal level or any attention from him. That’s my point in going there face to face. My dad needs help and I need his oncologist to help him. Now. His radiation oncologist is the best ever but he can only do so much.
Because I got upset that his face and arms are swollen to double their size and his arm is turning purple and they have just left him here like this, they are now doing a chest ct and an ultrasound of his swollen arm. Truthfully, I think the nurses are sick of me but I can’t say I really care much. My concern is my dad. If I have to ruffle some feathers to help him and get him what he needs, so be it!
Everyone, Denzie!! Help. What do you think? It is my opinion she needs real help here. Change doctors, go to Anderson???
I am glad they are doing something immediately. I once had a very wise person who told me when I had a conflict/problem, go directly to the Eagle. That would be hospital administrator/ head nurse at the least.
I think you have to have a referral to go to Anderson but you could probably get it.
When I have been desperate in the past my question to the person sitting in front of me is this: "If it were your..........(father) what would you do? Who would you see?" You might sit your radiologist down and ask him that question. You would be surprised at the hesitation and then honest answers.
You did absolutely right in making your demands. If you are there now, I would ask to see head nurse of the hospital, on this shift and sit and talk to her.
I am still here and I did talk to the charge nurse. I also demanded a doctor come look at him now. Finally one did. They are starting him back on the heparin drip and a chest ct and arm ultrasound. The nurses don’t like me much. Did you see my other post where they are leaning towards leptomeningeal? It isn’t confirmed but highly suspected. I’m crushed. This is urgent. And mostly why I’m driving directly to Moffitt with his imaging cds for help and demand someone speak to me. They didn’t even call me back Friday. His CSF fluid from lumbar puncture is clear, elevated WBC, elevated protein and low glucose in CSF fluid. PCRs came back negative so far. The leptomeningeal is what is prompting me to consider taking him to MD Anderson even though we can’t afford it without insurance. I just don’t care right now.
I just read about Leto. But, I didn't take the time to see how it is diagnosed.
Many of the hospitals have grants that can be used. I quickly saw other institutions mentioned who treat that.
Lisa, most hospitals have a patient advocate. You might also ask to talk to her tomorrow asking for help in finding out about available grants at those hospitals I think Sloan in NY was another hospital mentioned. Maybe she could get to someone to find out what you would have to do to get him admitted. Couldn't help to ask and it would save you valuable time. If he has that, I doubt your Oncologist would be helpful.
I am 3 hours earlier than you, so will be up a few more hours. Write if you need to. I used to be a nurse 60 years ago and I can tell you if they are upset with you in your dad's condition, they are not very good nurses.
I just got home. I don’t really have much to say yet cus I just can’t quit crying. I haven’t cried like this in so long. I’m going to try to get sleep soon. Morning will come quick and I have a lot to get done today and hopefully test results to find out. Thank you for listening and helping me.
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