I am not a dietitian.  I am not familiar with the patient.  It would be insane for me to try to formulate a diet for him or her.   Begin immediately to request dietitian's services-- or at least written guidelines- from your hospital, your doctor or whatever agency you have to go to in order to get taken care of.  Don't give up. 

Thank you.  Yes, I would appreciate your offer (to receive the free Sneaky Kitchen newsletter). 

Actually, the discharge from the hospital was highly unusual.  The patient, my husband, was eager to go.  There were numerous delays.  The Physician in charge was attempting to get recent x-rays and ones 5 year prior in our hands before we left.  His nurse wanted to be a CEO at Software.  There was a great deal of confusion. 

What is unforgivable is that after 3 phone calls to the dietician in charge of giving information to the patient, (she) has ignored three SOS calls today.  Her name is Fran and she works at St. Joseph's Hospital in Tampa, Fl.   Pass the word. 

Warm regards, and thanks again. 

Thanks for getting back to us promptly.  To be charitable, maybe Fran was having a bad day or was overloaded.  But in my personal opinion, acute pancreatitis is one condition for which consultation with a dietitian BEFORE discharge should take highest priority.  There are few conditions where so much harm can be done in such a short time by eating or drinking the wrong things.

Good luck and please let us know how it goes.

Marilyn Sherman:  More Diet Delay

Apr. 27, 01

Ok, Friends: 

...I called the hospital, I finally got an answer from FRAN from ST. JOSEPH's, TAMPA, FL.   Heavens to Betsy.  She hadn't had time to answer her phone (in her office that had the message "I am momentarily out of my office. Leave a message and I will get back to you.) 

When, for the 3rd time, someone did not give me her office but paged her.  Worst luck, she was on the line trying to call me.  It seems no one checked off the need for a dietician on the "GREEN PAGE FOR DISCHARGE."  Thus, if you believe the system of the best rated hospital in Tampa, there were not only 2 dieticians in charge (not true, on every call the dietary department gave me her exchange) but the other dietician should have been in charge.  No reason given for not answering my calls.  One started out "SOS."  It was much earlier in the day. 

(They) should be roped off.    A major danger zone. 

 

Bess W. Metcalf:  More Diet Delay

Apr. 27, 01

So when you finally got in contact with a dietitian, did someone satisfactorily answer all your questions?   Do you have diet instructions you can understand?

Congratulations on taking the bull by the horns and demanding answers.

One more question:  Do you belong to an HMO?   Private insurance?  Medicaid?

Hoping to hear from you again soon.

I just got out of the hospital with pancreatitis, and kidney failure.

Could you tell me what foods would be good for me, like can I have bacon for breakfast?  What kind and how much bread, meat, milk and dairy products and such?  Thank you. 

I have no idea what is going on in our health care system, but it certainly isn't good!

Why should any agency, insurance company or medical group, whether government or privately funded, release a person from the hospital without any assistance in helping them avoid another episode?   It's outrageous.

• Without diet guidelines, the person will end up ill and hospitalized again, raising all our taxes and/or insurance premiums,
  
  
• Without health, a person frequently cannot work, thereby often becoming a public burden instead of paying taxes and contributing to society and the economy,
  
  
• This practice shows a lack of compassion for human suffering,  both physical and mental,
  
  
• It also practically guarantees that sooner or later the patient will need assistance with basic living skills, perhaps in a publicly supported nursing home, as when health is lost, it often cannot be regained.            
  

In my opinion, HMO's and hospitals should be paid on a sliding scale according to the health of their patient, and be prohibited from denying services to anyone.  Bonuses for good health, penance for disasters (except, of course, those who are adjudged terminal).  And a big penalty for any hospital that releases a patient where dietary restrictions are required, without providing a dietitian's services.   That would shake up the health industry in a hurry!!!

Please write back and let me know your progress in resolving your dietary questions.

I am the one that just got out with pancreatitis and kidney failure. There is no dietitian here in this small town to help me. Would you be so kind? I am so afraid to go through that again, I am afraid next time I will die.  Please tell me what you know.  Eternally grateful. 

Annette, you said you were hospitalized.  The hospital should have a dietitian who should advise you.  If it is impractical for you to go back to the hospital, they can mail or fax you a diet.  What country to you live in?   Perhaps a third world country where such services are often unavailable?

Please answer as soon as possible.     

Dear Bess, thank you for replying so quickly.  I have asked home health from our local hospital that has been coming out here to check on me about the hospital's dietitian making me out a diet, and they could not get a reply from her.  

Thanks for your help, and please keep trying.    

Wow!  A letter like yours makes anyone appreciate their health, despite the normal aches, pains, scrapes and bumps along the way.

I just don't know what to say.  I'm afraid that the health care industry is so strapped for time and money that whether you have private insurance, government coverage or whatever, persons with multiple problems as well as the elderly in failing health often are given a bit of a fast shuffle.  Sometimes some members of the health industry seem to practice triage -  that's what they do in war, when they bring in the wounded. Those with minor injuries that can wait are put to one side to wait, and those that can survive given treatment are treated immediately, and persons with mortal wounds are tended to last.   You can bet that if you were as wealthy as Bill Gates you'd have doctors, nurses and dietitians fighting over you.        

The dear friend I mentioned in a previous piece is in this same dilemma.   There is still no diagnosis, tests have been scheduled but not done when the doctor didn't show up, others done but not analyzed, different doctors prescribed various drugs that interacted badly until she was much worse off than before and so on.   In this case, she is (1) elderly, and (2) has multiple circulatory problems resulting from over five decades of 2 to 3 packs a day of cigarettes.  A month and a half ago she was independent, driving, traveling alone, working a little part time, and as smart as a whip.  Now she can't remember what happened yesterday.  Having been warned many times in the past five years that she must quit smoking, her health care providers are now apparently letting nature take its course.

My mother-in-law, who had survived multiple illnesses, cancer, etc. and was still active and useful in her late seventies, within twenty-four hours became a stupid zombie in a partial coma.  After several days of deterioration in a hospital, my brother-in-law demanded some answers, and was told, "Listen, she's old, what do you expect?"  Her condition was very treatable once diagnosed, and she lived perhaps eight more years, all but the last 16 months or so independently, intelligently, useful and a joy to her family.

What I'm trying to say is, given that you have multiple, serious problems, and are cared for by a health system that isn't responding completely to your needs,  that you MUST take responsibility for your own health.   Be pro-active.   These are some ideas, with more questions than answers, as I am not qualified in any way to advise you on specifics, including diet.   Any thoughts I have on diet for one ailment might be wrong for another.

• If you smoke, stop immediately.   Don't let anyone else smoke in your house, either (second-hand smoke).   If you do smoke, and don't help yourself by stopping, it's not reasonable to expect others to go the extra mile.   
  
  
• Cut out salt, as you were told.  That's listed as sodium on labels, and hides everywhere.  Read all your labels.  If you decide to go for a salt substitute, check it out with your doctor first.  
  
  
• What about the gall stones?  Was your gall bladder removed?  Do you have more stones?  If so, what does the doctor plan to do about it?   This is a vital question.  By the way, my sister is going through the same thing with chronic pancreatitis due to the doctors' repeated failure to diagnose an infected gall bladder full of stones, and has been terrible ill for months and months as a result.   If you still have your gall bladder, and it's full of stones, sooner or later you're going to have trouble, such as another bout with pancreatitis.  You need to have a plan of action with your doctor in advance.      
  
  
• Your doctor told you to eat a low fat diet.  If your gall bladder was removed, this advice was to help your pancreas heal and assist your digestion.  If it was not removed, you need to know: just how low fat will be best.   High fat diets often contribute to or cause gall stones, as does, apparently, high cholesterol.   But a sudden completely fat free diet is believed to sometimes cause more stones to form IF your gall bladder was not removed.   
  
  
• You have a right to have better advice on your diet.  Call your doctor, call the hospital, call the nurse, the hospital's social worker--  if you don't get anywhere, start calling their supervisors.   Then call the administrators.  Work your way up the ladder.  Don't just wait for them to come to you.  Throw your weight around  (nicely) - you're entitled to counseling.   
  
  
• Be sure not to drink alcoholic beverages or take any medications or supplements  without checking with your doctor.
  
  
• If you have been seeing more than one doctor, when one prescribes a diet or drug, check with the others also to be sure there isn't a conflict.  Ask what each medication is for, then check with the pharmacist, who should have all your records at hand.  Errors and conflicts between medications are common, and lack of communication between doctors is rampant.
  
  
• If it won't upset you too much, do research on the internet.  But be careful, there's as much bad advice as good (sometimes I even give bad advice by mistake!).    Learn all you can about your diseases, their management, new discoveries and treatment alternatives.  By becoming an "informed consumer", your doctors and health care givers will pay more attention and give you better care and information, and you will better understand what they tell you, or know to ask questions if you think something's not right.
  
  
• Finally, with all the problems you have, the emotional factor is one of the most important right up there with proper diet.   Emotions play a very big part in pain management, the progression of  lupus, and the health of the entire digestive system.  If you are anxious and tense, you will not heal as well and will experience more pain and illness.  And I don't know how you could fail to be stressed, given the circumstances.    Here's some suggestions to think about:
  
  
  1.     Try to remove stressful situations from your life.   My sister had to stop being the primary caregiver for our elderly parents in order to protect her own health, although the rest of us all live at a distance.   Simplify your life by eliminating the things that cause you stress and anxiety.  Refuse to see people that upset you even if you have to offend someone.   Don't take on tasks that are beyond you.  Ask for help when you need it.  Please don't overlook the role that stress and anxiety can have on your health and recovery.
  
  2.      If you are religious, don't underestimate the power of prayer.   Ask others to pray for you, too (your church bible study group for instance, or contact your pastor).  If you are not religious, let me tell you that it's becoming a scientific fact that this often works, anyway.      
  
  3.      Check out Dr. Weil's CD (or tapes) Sound Body, Sound Mind.    He teaches that there is a strong link between our attitude, bodily tensions, breathing style and state of health.
  
  4.      Another approach which may help, which is sort of a cross between acupuncture without the needles, Chi Gong and self-hypnosis is Emotional Freedom by Garry A. Flint. 
  
  5.    Massage can often give great relief and improve health, but if this is a possibility for you, check with your doctor as it might be harmful in your case, especially if done wrong.
  
  6.     Be good to yourself.  Pamper yourself.   Do things you enjoy as much as your strength allows.  Take each day one at a time, and make the most of that day.   

I have also forwarded your letters to our frequent contributor, Dietitian Jessica Setnick, who will NOT be able to prescribe a diet, I'll tell you in advance so you won't get your hopes up, because she hasn't talked with your doctors.  But she may have some ideas on what your next steps should be to get personalized advice, and she will certainly tell me if she thinks I have put my foot in it here. 

That's about all I can think of.   Don't give up, and please keep us posted on your progress.

I don't know that all hospitals are required by law to have a dietitian, but they certainly need one to be accredited by the JCAHO.  I wonder if (Annette) has any means to get an appointment with a dietitian at another hospital besides the one she was discharged from.  She may not realize that she can see a dietitian at any hospital or clinic that will see her as an outpatient and that will accept her insurance.  Also, there are some dietitians who will provide counseling over the internet, which this woman obviously has access to.  Legally this is a new area, but the general consensus seems to be that dietitians should only counsel people in the same state, to avoid violating state licensure regulations.  With this in mind, Annette could search by zip code on http://www.eatright.org to find a dietitian who might be willing to provide this service. 

Best wishes,  Jessica

My 84 year old mother has just found out that she has gall bladder stones and because of her age and the fact that she has Alzheimer's the doctor informed me that surgery would be risky and would make her more confused than she is right now.  Other than a low fat diet, which she is on now, are there any foods that she should be avoiding.  She does get attacks and does suffer from other arthritic pains and I would like to try and make her as comfortable as much as I can.

Any other diets or suggestions that would make her life more comfortable would be greatly appreciated.   Thanks a lot for your help.

If your mother isn't in the absolute final stages, (and I would guess not if she's able to eat solid food,) here's my first suggestion.  Insist on a consultation with a specialist if that hasn't already happened.   "Buttonhole" surgery for gallstones is a simple procedure in most cases, with only a day or two in the hospital.  There are also drugs that can dissolve gallstones, although they are costly, are sometimes contra-indicated, and the stones often come back eventually.  This recurrence may not be a consideration if your mother is fairly far along with Alzheimer disease.

I'm going to hazard a guess that your mother is a member of an HMO, on Medicaid or something similar.  Too many doctors are pressured to avoid spending too much money on lost causes (translate: old people with eventually terminal illnesses). This makes sense sometimes, if the patient would suffer more by having a treatment, but not when treatment could alleviate pain and future medical complications.  You don't know how long your mother has left to live, especially as new treatments are coming up all the time.  My father was diagnosed with Alzheimer's a couple of years ago.  He actually is not only holding his own but improving somewhat due to a new medication (see footnote!)  Meanwhile, your mother is not only suffering discomfort, but stones can eventually lead to an acute attack requiring immediate emergency surgery, a possibly fatal infection or an extremely painful condition, also sometimes fatal, called pancreatitis.   As her Alzheimer disease progresses, she may be unable to communicate that she is in pain, but that doesn't mean she won't be suffering.

Maybe it's true that she doesn't need treatment, but there are medications that can help, plus of course a low fat diet.  What little fat she does get should be distributed with other food, not all at one meal, which might provoke an attack.  Most important, keeping her well hydrated.  Make sure she doesn't have some other condition that would prevent her drinking 8 glasses of water or other non-carbonated, decaffeinated liquid every day.  This thins the bile and can help prevent the stones enlarging or more forming to some extent.  It will also help her to pass tiny gravel before they enlarge and stick in the bile duct.  One of our Fuller Brush reps who took on the care of his wife with several ailments due to aging including mild dementia solved a recurring and severe hydration problem for several years, with cut-up pieces of watermelon, papaya and other juicy fruits, Popsicles and lots of gelatin desserts always at hand for her to "snack" on.   (Naturally, diabetes was not one of her ailments.)

To repeat, if you haven't had a consultation with a specialist, insist on it, as no one, even old and with Alzheimer, should suffer needlessly.  There are drugs available to help, and modern gall bladder surgery is usually a snap.  A couple of days of confusion may well mean a year or two (or more) of increased physical comfort for your mother.

Footnote:  Please don't think I have a medical miracle to report.  My father is on a drug for Lewy Body disease, a medication that is being studied at a center near him in Springfield, Ill.,  I believe but am not sure at the Southern Illinois University School of Medicine.  Does he have Alzheimer's too?  Who knows - probably.  But he functions better and has regained a lot of his sense of humor.  

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