really losing faith in medical profession

[BERIGAN]

this is very rambling, I apologize.....

You may recall me posting 2003 about my Mom having stage 4 Cancer,(large tumor under her armpit that was mentioned on a radiologist's report a year before we knew anything about it) going thru Chemo and radiation since then. She is also a diabetic, with edema problems in both legs(and now her right arm, since radiation destroyed the lymph nodes)with Atrial Fibrillation (irregular heart beat)

Mom has had breathing problems ever since she was diagnosed with Pneumonia in march.(Then they called it MRSA, a type of staff infection) She has been on Oxygen and using a nebulizer ever since. Well, the last week or so, she was really having trouble getting back in bed from the port a potty. We had to lift her right leg from the ground. She was just getting weaker and weaker. Mom couldn't get out of the wheelchair to get in the car Thursday, no matter how many times we tried. So had to call 911.

Mom has been anemic since she got off the Chemo in August, but it has gotten much worse in the last few months. Don't know if it is the lung problem or since she wasn't up to getting her twice a month red blood cell shots for 6 weeks just made her that much worse.

Mom had a 2 pint blood transfusion a few weeks ago, and a red blood cell shot , but didn't do anything for her. In fact, her numbers were even lower.

So, while in the hospital, she got 2 more pints and a double shot of Procrit(She was on another red blood cell booster before)as well. X-ray shows no Pneumonia, her heart sounds better than ever, her Kidneys are ok (for a diabetic), but something is making this illness chronic, and anemic.

We asked, does she still have MRSA? No definitive answer. She had another sputum test, which takes a few days to get back. Her Oncologist saw her one day, but otherwise, doctor of the day for the 6 days she was in the hospital.

One nurse came in while I was visiting, and was talking about the MRSA like it was still there(They put up a sign on the door saying MRSA when she was admitted, some nurses even bothered to put on masks) We were told in March that any time she came into the hospital since she once had it, she would always be treated as if it was still there. So, I asked her, was there a result of the sputum test, or was it just what was originally in her file. She said she would check. After asking her nicely about 5 times, she finally remembered to look(Nurses are very busy in hospitals of course) She comes back and wrote down Serratia Liquefaciens, moderate growth. Like MRSA, a bacterial infection, resistant to antibiotics.

No, nurse had never heard of it.

Ok. This is where I get mad at the medical profession. Did my Dad or I ever see a doctor when we visited her at separate times each day she was in the hospital? No, not until she was discharged. Could a nurse or tech tell us roughly when the doctor would be in? No, of course not. Mom said doctors came in at 6 am, 10 am, 7 pm. The doctor she liked best left for her days off just before the Serratia Liquefaciens diagnosis. No one EVER mentioned to Mom she had this. No one seemed to know or care about the diagnosis either. One day a doctor came in and said since Mom had been on antibiotics most of the year(First for a sinus infection she has had for literally years) there was no point putting her on another one, then a few hours later, the nurse brought in...an antibiotic!! No reason given.

The Oncologist who we really like, great guy who follows up with her other doctors, and is a caring guy, went out of town for the Memorial Weekend Friday, so don't know if he knows about the Serratia Liquefaciens issue, or not. We tried to call over there, but couldn't get anywhere(He had told Mom that Dad or I could call and talk to him) so had Dad drop over a letter to his office.

A visiting nurse who checks on Mom once a week, saw her right after she got out of the hospital Friday, and took off pressure bandages that were on her lower legs(Edema problems were so bad fluid was leaking out of her legs) and she discovered a large pressure sore on Mom's heal. The nurse was NOT impressed by the care given Mom in the hospital. She says it doesn't matter that her legs and feet were wrapped up, they should have looked at her feet in the 6 days she was in the hospital. Oh, the day Mom was released, she was still as weak as ever, but since all the vitals were good, out she went. I went downstairs to get a milk, and in the 5 minutes I was gone, the doctor came and went. So I ask the nurse where he was, he was in a small cubical next to the nurses station. I ask him about the Serratia Liquefaciens...he said is was no big deal, pretty common. Ok. Like pulling teeth to get anymore info out of him. I can see he is already thinking about the golf course over the weekend.

We get Mom home by ambulance, she cannot get out of bed and on her feet, but she is fine to release!!! We needed the help of My Uncle's wife who was visiting for a few days from L.A. to just get her into bed. She had to have a catheter put in the next day. Clearly, she should not be home. My Dad is 73 and we both have bad backs, and Mom is overweight, and can't help us get onto a portapotty, or back in bed but Mom really hates being in the hospital, wants to be home with her family and cats. Besides, she was fine to go home!

Maren has been a big help, I PM'ed her a few times,(She mentioned that I need to talk to the Infection disease specialist that most hospitals have, but I saw that info after we brought Mom home) and like me should could find precious little about Serratia Liquefaciens on the web, except for the same story over and over about a Kidney Dialysis facility in Colorado which had an outbreak because of double dipping needles. I don't know if Mom got this from one of her many blood transfusions, or what.

I really feel Mom is close to death, she has been thru so much, she is in constant pain from back problems, nerve problems, and now being a prisoner in her own body, unable to even lift up from her pillow to turn on her light has really, really depressed her. But, her vitals are fine, so we can't get anyone to care except for the visiting Nurse. She called the Oncologist's main nurse today, but still haven't heard back from them as of 6:15. Her GP, another great guy, has no voice mail,( I know the visiting nurse has left a message with someone) but one can leave one with the prescription Nurse, big deal.

Why don't we just call 911? Mom doesn't feel like the hospital will help at all, it was a waste of time the last visit. No IV antibiotics, or IV diuretic, everything in pill form which she can take here. We need to do something very soon. We just keep waiting for her to get stronger. She will seem a little stronger early in the day, then be weak as ever later on. Dad and I are stressed beyond what we would think our limits are. Up late every night, up early every morning...part of the reason this is so very rambling, is I can't really sleep much...I think I hear her calling, I hop out of bed only to find my mind is playing tricks on me. Then she really does call a half hour later. People have mentioned a rehabilitation facility being the best option,(Insurance will cover that, but not a 24/7 nurse which would no doubt be cheaper for the insurance company) but Mom sees that as a Nursing home, a place with strangers, a place to die in...I want to know what she has first, she isn't going to get stronger if she has an infection she cannot shake.

I know there are good people in the medical profession, but doctors no longer come out to the house, hell you can't even get them to call you back. I figure like always, something will happen where even Mom will agree we need to call 911 (and wait hours and hours in the E.R. before they finally admit her again, or will they say her vitals are fine, and send her home, which almost happened the last time?)

As you can see, my Dad and I are at a loss right now....I can't run my home based business well without leaving the house, We can't both be gone at the same time, hell I had to call Dad to come back when he was at getting Mom dinner a few days ago....

what do you all suggest????

Mom made career sacrifices to spend time with me as a kid, and I want the very best for her, all she has done is suffer horribly since 2001, but I am as powerless as she is right now........Thanks.............Conrad.

Edited May 31, 2005 by BERIGAN

[RonF]

Really sorry to hear about your medical nightmare, Beri. We went through a similar trip to hell with my Pops. Your's sounds worse. About all we can do is be there to constantly ask questions and hope they have some idea of what they're doing. I hope your Mom gets better.

[maren]

Hey Conrad, I'm looking online for "post-acute care facility Atlanta" and "skilled nursing facility Atlanta" but so far not much has jumped out at me.

Anybody else from the area have any suggestions?

I do think that if you can find a good facility, that could really help all three of you. Maybe the visiting nurse has a recommendation? She sounds like a good person and a good nurse -- I'd say lean on her as much as you feel you can without burning HER out. Does the hospital you went to have a social work department, patient advocate or ombudsman? Sometimes, tucked away in a corner, hospitals do -- and these might turn out to be people who care. Hospital social workers (at least here, where I work) are not "welfare police" types or therapists -- their job is to help take care of all the things the patient and family need that no one else is taking care of. Here, they're also the people responsible for a discharge plan, arranging visiting nurse service or transfer to "post-acute facility."

[ghost of miles]

Really sorry to hear about your medical nightmare, Beri. We went through a similar trip to hell with my Pops. Your's sounds worse. About all we can do is be there to constantly ask questions and hope they have some idea of what they're doing. I hope your Mom gets better.

←

My sentiments as well, Conrad. My heart goes out to you on this stuff, my friend... I wish I could offer more specific medical advice, but you and your mom & dad are in my thoughts and prayers.

[catesta]

Sounds rough.

I'm sorry your mother has to go through this.

I think Maren is on the right track. Do some research, and ask the questions.

My family and I came fully loaded with information and grilled the cardioligist taking care of my mother.

I'll keep the good thoughts going for you guys.

[Christiern]

Dear Conrad, I wish I knew enough to be of help--one feels so useless when things like this happen. I have not had to endure quite the emotional trauma and frustration you are undergoing, but I have come close. As you know, I am not one to pray, so the best I can do is to have your family on my mind, think positive thoughts, and wish for the best--I will do that.

How petty our differences seem when real life intrudes.

Chris

[Johnny E]

How petty our differences seem when real life intrudes.

So true. I think Maren's suggestion of a social work department, patient advocate or ombudsman is a solid one. And never EVER be afraid to get in their face. The squeaky wheel gets the grease in these places. Don't be afraid to be rude. Demand respect and attention.

I hope that your mother pulls through this and you can look back in a few years like it was all a bad dream. Your love for your mother is clear. I know she must love you dearly. You're being a very good son. Hang in there Conrad.

ps. I still think your politics stink

[Chuck Nessa]

I will pray for the best.

Be strong and help your dad if he needs it.

[GA Russell]

You and your family will be in my prayers tonight, Berigan. Best wishes.

[gslade]

Best Wishes

I too have been through alot with doctors this past year

My father went into the hospital to get a heart stint, instead he got a stroke,

the doctor wanted to do a bypass operation the next morning and thought that the stroke

was just a reaction to medicine, I pulled my mother aside and told her I did not think

that he was having a reaction (one of his eyes was bulging way out) and that they should not

operate she agreed. At that point the doctor called in a neurologist and determined that he

did have a stroke. Anyway he did get stronger and had a 5way bypass 1 month later.

The cardiologist who was doing the stint when he had the stroke was assigned as his followup

cardiologist. My father has had several problems since then (swelling in lungs and then pneumonia) and every time the cardiologist office just sent him to the emergency room and has twice prescribed the wrong medication for him.

The best care we have received has been the RN's at the emergency room.

He is doing better now.

Again I know how frustrating this can be, hang in there.

Best wishes for your mother and family

Edited June 3, 2005 by gslade

[chris olivarez]

[quote=catesta,Jun 3 2005, 03:39 P

I'm sorry your mother has to go through this.

I'll keep the good thoughts going for you guys.

Same here. It hurt me to read this. Nobody should have to suffer like this.

[SEK]

Conrad,

I'm very sad that your mother is having such a hard time.

I hope for the best.

Steve

[jazzypaul]

How petty our differences seem when real life intrudes.

So true. I think Maren's suggestion of a social work department, patient advocate or ombudsman is a solid one. And never EVER be afraid to get in their face. The squeaky wheel gets the grease in these places. Don't be afraid to be rude. Demand respect and attention.

←

Agreed. My mom's a hospital administrator, and she'll be the first one to tell you this. Even if the nurses and everyone start to think that you're overreactive/a jerk/whatever, they'll still get everything done just so they don't have to deal with you, and they'll probably dot every i and cross every t to make sure they don't get hit with a lawsuit. Also, use everything you have at your disposal. If there are names you can drop, do so (my mom actually suggests this to all of our friends when they need medical help at her hospital. Get to the registration desk and start dropping her name at the beginning and end of every sentence. It almost always works. Of course, when their job depends on my mom thinking they're doing their job, it helps...).

Add me to the list of well wishers that will be praying for you.

[BERIGAN]

Thanks everyone, EVERYONE, for the words of sympathy, and encouragement! (Someday, the lefties on this board will meet me in person, and we will all be pleasantly surprised by how much we have in common! )

It really has been as if we have all been living a nightmare of late, I wouldn't wish it on anyone....

A quick update...Mom has been in the hospital since Thursday. Mom's Oncologist got an Internist friend of his to admit Mom again(We had to bring Mom by ambulance to her office, and she checked her out in the ambulance!) The Oncologist and she both seem to think Mom is suffering from a combination of all her various ailments.

In fact, the Oncologist was basically saying since she was too weak for Chemo if the Cancer has spread, to just try to make her comfortable and call Hospice,(We had already talked to them a few weeks ago when she was in the hospital the 2nd time,(This is the 3rd time since March) we had been told they deal with non-terminal folks as well, but you can't call 911, do anything to prolong life etc, if you go with them, so we weren't going to go that route right now) had to convince him we needed to see if the infection might be her biggest problem right now...

We were going to try to get Mom in a rehabilitation place for awhile if she could get stronger again, she wasn't looking forward to that, she wants to be home with her boys, and cats...but the Internist was going straight for Nursing home, saying she can't walk, so no point for the rehab place. Fortunately, I was there at 6 am to argue for Mom that she wants to see if she can get stronger first, before going into a nursing home for the rest of her life....

Hoping not to jinx her, Mom has gotten a bit stronger, in fact, the night before going into the hospital she showed more arm strength. (Did I say this would be short?)

Long story short, even though we have our reservations about the new Doctor, she is thorough, and finally a Pulmonary doc came to look at Mom, and had many ideas, suggestions....did a better job of giving Mom some hope. She is on 3 different antibiotics right now!!! Some different breathing apparatuses than she has tried before, and her cough has gotten much better, thank God!

Having a physical therapist come in every day, and Dad or me help her again at night has made a true difference. Mom now sees that after becoming completely helpless that she has to push herself, even if her arthritis, herniated discs are acting up, she has no choice...but feeling better, breathing better(Last Thursday, any movement brought her oxygen level into the low 80's, not good!) does make it easier to exercise(Still just in bed , but kicking from the side of the bed to the hand of the therapist is a big step for her!)

Still too early to get too excited, but ANY progress makes all of us feel much better, there simply had been nothing going right till late.

This time they seem to realize she is really sick, and to do more than monitor her blood sugar and blood pressure, they are finally attacking the fluid issues, even if the Oncologist and Internist act like you can't really do much about it at this stage, Mom had put on about 20 pounds of fluid in the last few weeks, and taking just that much off makes it easier to move!

Mom has been depressed of late, but she is as strong as anyone inside...most of us,(Myself very much included) would find it impossible to put up with the daily level of pain, and frustration Mom puts up with every day. She is just 64. Sometimes I wonder if it would be better for her to move on, but as long as she can/wants to fight, we will support her. She will always be an inspiration to me.....

[brownie]

Thanks for giving us an update, Berigan!

Your post looks more optimistic. Your mom has a fighting spirit

Give her the best! We're all rooting for her!

[DTMX]

She will always be an inspiration to me.....

←

I've been through this with my mother, grandmother, aunt, and best (female) friend and have been amazed at the amount of strength they were able to show during this difficult time. If your mother wants to fight, you owe it to her to be in her corner (she's probably been in your corner a few times over the years). Hopefully the care she's getting now is going to be more beneficial that what she was previously receiving. Good luck, and hang in there.

Doug

[porcy62]

Sorry to hear this, Beri. It was the same with my father's illness . I second the above suggestions: fight for your (and your mom's) rights! Medical professionist are human being like everybody, sometimes you have to remind it to them.

Edited June 7, 2005 by porcy62

[White Lightning]

Conrad,

I'm so sorry to hear about the nightmare you amd your family are going through. The best I can do is to keep your family on my find and I know that things will eventually work out.

keep the positive thought, man. To quote Beethoven's comment on the finale of his String Quartet in F Major, Op. 135: Muss es sein? Es muss sein! Es muss sein! (Must it be? It must be! It must be!). Things will get better!

Barak

[BERIGAN]

Not a good day yesterday.....

Chest CT Scan for her lungs showed enlarged lymph nodes in near her lungs, liver, and groin area. Doesn't look too good right now...what is strange is that being on 3 antibiotics at the same time, and having several different types of treatments to help her breath better, her cough was getting much better.... and with a physical therapist working her out, she was gaining some strength in her limbs that was not there a week ago....so this was quite a blow today....we are still hopeful, Mom has not given up, but have to be somewhat realistic. The Oncologist is sympathetic, but won't/can't offer any treatment options now(And are wondering why he was only having a CT scan from the armpits up, and why nothing showed up in late January.)

We have been giving her some Noni juice most days(When we can remember to bring some of it, it needs to be refrigerated) and was going to wait to give her something I ordered online called Paw Paw til she came home, but time is of the essence right now...she even had some lumps show up in her neck in the last few days, ...we are talking about stage IV Cancer right now, so everyone's prayers and Alternative Meds will have to do the job for us.....

Conrad.

[Free For All]

My thoughts and prayers go out to you and your family, Conrad. Hang in there, man.

[White Lightning]

Hang in there, Conrad. My thoughts are with you and your family.