[memaw5]

HI,
My mother is 79 and has been in and out of the hospital several times over the past 2-3 months and she has cancer (CLL). The good thing is that she is in remission still. We have been through a terrible ordeal and probably millions of people go through similar things as far as healthcare. I want to share our story with you because I can't express enough how important it is that you keep your eyes and ears open......you could save a life...maybe your own.

Since this is a very long story I will shorten it as best as I can without too much extra detail. If I don't I will probably find myself face down asleep on the keyboard in the morning.

Momma had polio when she was 8 and ever since I can remember she has suffered at times with her legs hurting. About 5 years ago she had shingles and was told it had settled in a nerve (may be moms southern lango for some medical term). At any rate the pain was severe. After she moved up here it wasnt long before she was diagnosed with CLL, Chronic Lymphocytic Leukemia. She's gone through serveral chemo treatments and is in remission right now. Mom told me her Primary care Dr. thought she was crazy (her words) and wanted her to see a shrink, well her CA Dr. told her that it was quite common and he didnt think she needed an appt. So..she cancelled it. It hasn't been that long since pops died and then her being diagnosed with CA so when she would talk about him visiting her we, and her Dr. didn't put too much stock into it, not until she fell in the basement and eventually pressed her lifecall button. Well the ambulance crew came out and even though mom continued to talk about being in the basement on the floor, she didnt want to go to er so they didnt take her. (wrong) Mom didn't have a basement! Well Charlie (my son) and I took her to the er because she was weak, sore and confused. They admitted her and after the usual battery of tests, mri, cat scan, xrays, bloodwork, etc, and a couple of days in the hospital they decided that the confusion was due to her not taking her meds right and gave her a dx of taking too many pain pills then discharged her to go home alone. I guess to overdose herself. I took her to her family practice Dr. with severe leg pain and complaining of bumps.......well of course she had already heard that mom was a pill popper so brushed her off.....hmmm...a few days later...turned out to be another case of the shingles. Well after that we had several more trips to the er, main complaint, seeing things that werent there. They didn't pay any attention to me and I guess the little child size people with no faces were still normal sightings and would not refer her to a psychiatrist but since she was living with me, "exactly how many pain pills are you giving her everyday?" so here we go again with same dx. I took her to her family practice dr. and she also told her this was normal, (the one that missed a good case of shingles). I made many attempts to have them refer her but was finally told that the dr. couldnt make the referral and mom would have to do it. I questioned that and was told that too many kids, when their parents get old try to send them away, etc etc.. well I couldnt believe that any of this was happening but kept going forward. I eventually took her back to the family practice Dr. with very low bp readings.They are always either high or low, once in a while her bp looks normal. Not forgetting the treatment I received over the phone by her I was determined to "open her eyes". At first she said, I told you that was normal and I should let my sweet mother have her comforting visions. "Mom, tell her some more", well the story about the little lady that lived in the back of her scooter chair made her almost fall off of HER chair and she called me into the hall. As soon as the door was closed she loudly told her assts, "Its True, make that referral asap!" They were surprized and one even said, "We didnt believe you: and there was laughter. I have never been treated that way before in my life and by professionals that took an oath to work in the medical field. I started to cry, not squalling but I felt so much heartache and betrayal. "All I wanted was for my mother, however much time she had left here, to have a happy, peaceful and normal life, I don't understand." Nothing was said and nothing was expected. I dont know if the appt was ever made because soon afterward mom took a swift downward spiral with her health, she couldnt walk by herself with her walker or with her cane...and her little visitors were still around.....off to the er again. I must mention that her Oncologist gave her Ritoxin the day before she started going down hill. She did have some side effects during the procedure and I am concerned that she may have some major ones now! Well back to the hospital stay, finally the nurses I guess got too weirded out and a psychiatrist was called in. He dx her with depressive psychosis, a condition that can occur when someone is very depressed for a long time without treatment. He put her on meds and wala....no visitors...and much less pain in her legs by the way. So this was her brand new dx...along with a dx of muscle weakness (a sympton, not a dx). Well to shorten this story more, I took her to Columbus to a different hospital and they kept her over night for dehydration....she wasnt eating or drinking enough because it would just wear her out. I starting feeding her...she was hungry. Her vision had worsened (more double vision) and with the symptoms her ophthalmogist referred her to a neurologist, along with her CA dr. She missed the appt becasue she went by ambulance with a pain on her right side that felt like a broken rib. They decided to treat her for a heart attack, 2nd dx, muscle weakness. Now we come to this past hospital visit. There has been some changes at our hospital this past year thats not sitting too well with ,most folks. Your Dr. can admit you, but the only Dr. you will see is a "Hospitalist".......they know nothing about you, YIKES, The "hospitalist comes in and tells us, right in front of mom that she has been in and out so many times and they can do nothing more for her and we should prpare and she should be in hospice. He said he could put in a feeding tube..well mother has a living will NO FEEDING TUBE, he should have knew that! She can eat and wants to eat but she cant get the food on the utinsil or to her mouth, she eats good but you have to feed her. In other words they gave up on her, why bother , you know? Well, this go round, mom has a blood clot in her leg, and has fluid in the lower right lobe...you know, remember the pain on her right side under the lower rib...oh yeah...that was a heart attack....my bad! Mom looks near death now and they do the procedure to remove the fluid, which they say looked clear so maybe its not her CA....of course the results arnt in yet..so lets just guess.

[memaw5]

Then yesterday morning they put a filter in to help stop the clot from traveling. It would have been very nice of the nursing staff if they had put on the chart moms allergy to iodine. luckily I caught it at the last min because the physician doing the procedure was to be notified 12 hours in advance so mom could be treated, so she wouldnt have a reaction. so now would they be able to do it or would she have to wait...it worked out she was given the med and after monitering the procedure went fine. A mild allergic reaction one time to this iodine could be the equivalent of a pennicillen allergy reaction. I could have lost her.... well I just picked up the phone and called the front desk "I want to file a complaint, who is the highest person I can go to?" The CEO is where I went...all the way to the top. Of course they were on our side, and I truly believe that they were glad that I stepped forward so that hopefully none of the crap would happen to anyone else. I felt pretty darn good, except for mom....especially when I caught her nurse giving her the wrong meds. The whole time she had been in there she was getting the wrong meds. One she was allergic to (antihistamine) that explained the terrible thirst and tight dry throat that they shrugged off as nothing. Well this horrified the upper folks and had her hospitalist call in moms CA Dr., a neurologist for her muscle weakness. right before that when Dr. Hospitalist came in to tell us that they had given her too many fluids. I told him mom had also been given the wrong medicine and he talks so fast and knows everything, you know, so I said,"If you would just stop talking for a minute I'll explain this to you so you will understand!" The home visiting nurse who thought she might have the blood clot was given moms updated med list from PT (all from same hospital) and she faxed it to the hosp upon moms admittance....of course I brought all of her medicine bottles and they took all the info down. IF they had compared the two and noticed the discrepancies they might have thought to question it, but they made the decision to go by the home visit nurses list...which unfortunatly was never updated by the last PT that came out or put into their computer one.........................Well this morning it was decided that mom could be discharged to physical therapy but did not meet the requirements for Warm Springs....couldnt go fast enough...so they put her in the finest nursing home in town for therapy...if that doesnt work...she will reside there. I saw her later after signing a million documents............she was hallucinating..........guess someone forgot to give her her night time pill...I didnt stay last night , this is now day 3 and she thinks she walked to my house last night. Apparently she had been off of it for a few days and it will take time to get back into her system. Ok.....looks like me and the hospital are not through yet! I plan on taking her to Emory in Atlanta to the ER if I have to.

here are some medical conditions that have the same or almost the same symtems she has:
PPS-Post Polio Syndrome
Myasthenia Gravis
Parkinsons Disease
toxoplasmosis
Ritoxin (severe side effects) now I was with mom the day he gave her the ritoxon and he never once mentioned the side effects that could come along with it. She had a reaction during the procedure, they stopped it and then later finished it. She had a weak immune system at that time.
She was in 100% remission, that's what mom called it but actually I think the blood test were normal. The cancer may be there still.

** I don't know if the FDA has approved Ritoxin for CLL yet. If anyone could tell me I would truly appreciate it.
** Can you have too much iodine in your system (from tests, etc.)

Things going on with her now:
RLS, had for yesrs
1 month ago she was walking with a cane and a walker...now she can't walk or feed herself and is in a wheelerchair and hospital bed.
Bursitis

HX
shingles twice, once recently
Polio age 8
Total hip replacement
Osteoarthrits

Allergies:
Codiene
Iodine
Antihistimes

Of anyone has any ideas or suggestions...or thoughts, please reply....I am very worried and I will do the legwork if I have to......
Please assist me by adding citations to sources of medical facts, except for matters of personal experience.


Thank you so much
memaw5

[memaw5]

I am the first one to reply to my own post LOL

Could my mother have saccharin poisening?

She has been using sweet and low on a daily basis ever since I can remember and I am 51.