How to Talk to Doctors

If you're like me, you've had some experience with doctors.   I've found many of them to be distracted, overly technical, and sometimes pompus. 

I've discovered a few strategies that enable me to communicate better with my doctor.

Any time emotion becomes a player in the patient-doctor conversation, chances are communication effeciency will suffer.  If you find you are getting angry or upset, excuse yourself and take a break.  Go to the restroom, take a short walk, go get a soda or anything that will allow you time to calm yourself.  Take a few deep breaths, then resume the conversation with a clearer mind.


It always helps to have someone with you when talking with your doctor. 

Sometimes doctors forget who they are talking to and  use language more appropriate for other doctors.  If you're concerned this is happening, use the line, "So, you are saying..." then repeat back what you think the doctor said, using your own words. 

Go into the doctors office with a mini-recorder in your shirt pocket.  This will help with recall of doctor instructions later.

You might take some notes.

Try making a connection with your doctor.  For instance, I discovered my doctor is a martial artist.  I let her know I am as well.  I often ask her about her practices and tournaments.  This helps us make a connection so maybe she'll give my case a little more attention than she would otherwise.

How Can I Find My Miracle?

I pose this question since I can’t tell where my miracle begins, or where it ends. Perhaps my miracle is a sudden, unpredicted, divine intercession, or maybe it’s some combination of events like moves on a chess board that lead to a check mate.

Maybe my miracle will occur at a single moment in time or then again, maybe it lies with a personal decision made with much thought. Either way, It’s entirely possible that my miracle begins with what I thought was a curse, and finally maybe my miracle is the current outcome, or some future benefit.


In truth, though I have faith in my miracle, to answer the question, “How do I find my miracle?” only God knows. My job is to praise Him, and give him the Glory.
Fall 2002, I was diagnosed with idiopathic protein losing enteropathy, something I never heard of, The Doctor at Glenwood Medical Center, West Monroe, Louisiana asked me, “Don’t you eat?”


“Of Course I eat.” I answered.


She said, “You have the serum protein level of a child in an impoverished country.”

So, I spent the next several years in and out of hospitals getting tested out the wazoo, I prayed a lot, I asked for miracles, I promised God I’d do this if He’d do that, and I felt cursed.


Then one night I had to stay over at the hospital. I was placed to spend the night in a room with another patient who seemed to have some minor affliction. He was up, and out of bed from time to time, but slept most of the night.

Something unusual occurred this night: I felt the urge to speak to this man, my room-mate, about Jesus, and I (for whatever reason) failed to do so. The next morning, this man, in the bed not 3 feet from mine, died.


Guiltily, I’ve thought about this often; coming to the conclusion that I should have spoke to the man about Him.
I learned from this that instead of being so worried about my own miracle, I should try being a miracle to others.

Endogastric Doudenoscopy (EGD) What its Like - First Hand Account

What does it feel like to have an EGD?

An EGD stands for Endogastric duodenoscopy. Simply put, they are placing a scope down your throat, through your stomach and into the first portion of your small intestine called the Duodenum. This is a pretty painless procedure.

The first thing they do is make sure you are “prepared’ for the procedure.

Usually, the night before, you can’t eat or drink anything after midnight. This ensures their will be nothing in your system to impede or conceal any defects in the areas being looked at.

I was told I could take my medications with a sip of water that morning.

You have to put on a gown, then they put you on a gurney and roll you to the procedure room. You’ll probably have to sign consent to do the procedure which informs you of the procedure’s risks. They could tear the lining of any areas scoped. They let you know if this were to happen, you might need surgery to fix it.


Then you have to gargle e a slimy lidocane gel, and swallow it. Also, you have to swallow a substance that expands the air in your stomach.


Next, you lay down, they put a ‘sleeve’ in your mouth. Like a piece of PVC pipe about 2 inches long with a phalange on it. The phalange rests against your lips , and the sleeve keeps your mouth and throat open..
I had an IV and they gave me a little something to make me feel more comfortable… to relax me. I did appreciate this.

The next thing I knew, they were snaking something down my throat. at one point they told me to swallow. They were in my stomach with the thing. I could see on the monitor that they were in my stomach and were taking biopsies.

A 3 prong clutch was grapping pieces of my stomach and pulling them free. They did the same thing in my duodenum. This was painless, although I did feel the pressure against ‘something’ inside me.



They got what they needed then pulled the scope out. I Gagged a few times during the procedure, but it wasn’t bad at all.

After, my throat was a little sore, but that soreness went away in just a day.

Protein Powder's 'Other' Benefits

I began using a protein powder supplement a few years ago to address hypoproteinemia (low serum protein). Unfortunately, my body can’t seem to keep protein where it belongs. According to my doctors, it spills into my gut and is then eliminated.

Indeed, my protein loss is so severe, protein supplements don’t increase my serum protein level at all. It does, however, help in a couple other ways:

1. As you might be aware, some people with low serum protein levels may struggle with watery – loose stools or diarrhea.

I’ve found the protein powder helps to firm things up making me much more comfortable.

2. I often get dietary cravings. My body seems to yell at me, “YOU NEED TO EAT SOMETHING!” Unfortunately, I’m rarely told what that thing is.

That said, I can usually silence those cravings with my protein powder. Thankfully, it is better to quell my cravings with the protein supplement then to try with salty, fatty and high cholesterol snacks.

How do I use it?
I get the 8 oz. cans that contain a 7 gram (1-1/2 tbsp) scoop. Each scoop contains 6g protein, and although the directions on the can tell me to stir 1 scoop into at least a 4 oz. beverage, I usually use 3 scoops into an 8 oz. glass of water.

At first, the taste of the product was less than pleasing. In time, however, I found the flavor to be strangely satisfying.

If you suffer from low protein, and your doctor recommends protein supplements, don’t be afraid to try them. In addition to increasing your serum protein, they just might help

Idiopathic Protein Losing Enteropathy - A First Hand Definition

You might be asking, “What does enteropathy mean?” Breaking down the word makes it easier to understand.

*** entero refers to the intestinal tract

*** pathy refers to disease.

Now I'll tell you what PLE means to me.

I have a disease characterized by the loss of protein through my gut.

After I began doing my own research, it didn’t take long to find out how many organ systems can cause a Protein Losing Enteropathy (PLE). Among others here are:
• kidney issues

• heart issues

• lymphatic issues

• rheumatic issues

• liver issues

• dietary or digestive issues


I had to have all of these checked. Let me tell you, by no means has it been easy.

First they changed my diet to gluten free. Then I had the endoscope and colonoscopy. After that, I had CT scans of everything. Following that I had my blood vessels checked for evidence of vasculitis. I had cardiac pressures checked, and I even had die squirted in my brain so they could scan it as well.

I drank stuff that would make a billy goat puke, and I’ve been hospitalized so many times I’ve lost count.


I’ve had all these tests and the doctors haven’t yet found out why I’m losing my protein. After ruling out all known causes of my PLE, it is said to be idiopathic.

Plasma Protein, Albumin Information

Living with this disorder has been a real struggle. As you may already know, protein in the body is important for a number of functions.

According to Wikipedia, human serum albumin is the most abundant protein in human blood plasma, and it is produced in the liver. Albumin comprises about half of the blood serum protein. It is soluble and monomeric.

Functions of albumin

1. Maintains oncotic pressure - I’ve had severe edema. The absence albumin leaves little for water, in cells, to bind with. So water flows across the cell membranes third spacing.

2. Transports thyroid hormones

3. Transports other hormones, particularly ones that are fat soluble

4. Transports fatty acids ("free" fatty acids) to the liver - I guess this is why my triglycerides and cholesterol are always sky-high. If fatty acids don’t get transported back to the liver, the liver acts like there is not enough in the blood and makes more.

5. Transports unconjugated bilirubin

6. Transports many drugs; serum albumin levels can affect the half-life of drugs – With this I’ve noted that when I have a high edema level (anasarca) my lasix (diruretic) doesn’t seem to make me urinate as much. Sometimes it stops working altogether.

7. Competitively binds calcium ions (Ca2+)

8. Buffers pH

9. Serum albumin, as a negative acute-phase protein, is down-regulated in inflammatory states. As such, it is not a valid marker of nutritional status; rather, it is a marker in inflammatory states - In my case, My ESR (erythrocyte sedimentation rate) an indication of inflammation in the body was VERY high.

Which of these functions have you noted issues with in your own life? Leave a comment and tell us about them.

High Protein Eating Ideas (Videos) Diet Ideas

Below: An anytime meal idea



Although the prupose of this next video is to help vegetarians and vegans build muscle, the foods he is showing really are great sources of protein for anyone.



Below:  A breakfast idea


diet ideas

March Status - Weights and Stuff

3/2/10 Had Dr. appt. at VA.  Lab results are: 
Total protein ---> 4.1  Norm = 6.1 to 8.2
Albumin--> 1.8   Norm =  3.4 to 5.0

Thrusday 3 March, in the morning I weighed 147.8 pounds.

The past couple days, my lasix hasn't been working as effectively as in the past.  Today however, it has been seeming to work well.  I'm still taking 60 mg  bid.

7 March : Morning:  148.4 pounds
8 March: Noon ......151.6 pounds  (Lasix working well this morning)

***Feel like I am coming down with a chest infection. There is congestion in my lungs, but nothing is coughing up yet.  Don't feel like I'm running fever.
8 March:  evening weight:   153.4 pounds
9 March:  150.6 Pounds at 7:30 am.  I woke with sore throat, and aoughed up greenish phlem.  I don't feel feverish at this time.

***Contacted Dr. Sanders today.  I related my new issues.  I am to begin taking antibiotics.***
******Began taking Doxycycline hyclate 100mg CAP this evening.  I'm to take 1 cap bid.

10 March 10:00am - 151.4 Pounds
11 March:  156 pounds at 10:00 pm
12 March - I took my the last antibiotic I had this morning.  Still waiting for the additional antibiotics to arrive from the VA. 
I'm feeling much more tired today than in the previous weeks.  Even yesterday I had enough energy to ride my bike 2.5 miles to the store and back.

23 March 10  I went to dentist today.  I got 3 fillings and had 1 wisdom tooth extracted.
24 March 10  I havn't been weighing myself lately  since I know I'm increasing edema levels.. I don't need to weigh myself. I'm disgusted with my weight going up and I don't want to know the numbers. 
** Dr. Sanders correspondance arrived today via snail-mail.. Included in the letter are my lab results from my hospital visit  3/2/2010

Weight tonight  3/24   is  158.4 pounds

MY (PLE): New Development (Kind of)

I had an appointment with Dr. Sanders (Rheumatologist) as well as the pediatrist Monday March 1, 2010.

My Protein levels were as follows: 
*Total Serum Protein:  4.1
*Albumin:  1.8 (I think).

Anyway that's pretty good for me.  Usually I'm 1.9 and less than 1, respectively.

New Development:

The doctor is interested in weather or not oral antibiotics are contributing to my protein increase.  She said she was going to research my records to find a correlation of protein increase and antibiotics being given at the same time.

If the antibiotics are affecting a change in my protein, I may have a whipples (sp?) disease.  The problem is that diagnosis of this disease requires a small bowel biopsy and I've already had several of them; none of which showed any whipples.

whipples disease is characterized by bacteria in the intestinal walls that can and do cause  a PLE.

I may be looking at more biopsies in the future... ewww.

Albumin Replacement Therapy to Treat Protein Losing Enteropathy (PLE)

What is Albumin?

Albumin: The main protein in human blood and the key to the regulation of the osmotic pressure of blood. Chemically, albumin is soluble in water, precipitated by acid, and coagulated by heat.

(Note: albumin is spelled with an "i" while "albumen" with an "e" is the white of an egg, the part of the egg from which meringues are made. "Albus" in Latin is white.)

**MY EXPERIENCE***

The spilling (Loss) of albumin that I experience is severe. In fact, it was suggested by my doctor that infusing albumin in me would be a waste of time.

My serum albumin measured <1 while my total serum protein was 1.9. Over a period of 7 years, I’ve been given albumin at differing doses, intervals and speeds.

Most recently, I was given 50mg albumin infused over 1 hour. Then 30 minutes later I was given 60ml lasix IV (push). This was repeated every 8 hrs for 5 days.

The net effect of this was a decrease in edema. My weight dropped from 165 to 133 lbs.in that same time interval.

Side effects of albumin that I noticed was a dull, uncomfortable headache.

Albumin (Human) 25% USP

Indications:

Emergency treatment of hypovolemic shock, burn therapy, cardiopulmonary bypass

Hypoproteinemia with or without edema, adult respiratory distress syndrome (ARDS)

Acute liver failure, neonatal hemolytic disease

Erythrocyte resuspension, sequestration of protein rich foods

Acute neophrosis

Contraindications:

Chronic nephrosis

History of CHF, renal insufficiency, or stabilized chronic anemia

Precautions:

Pregnancy category C

Monitor against signs of circulatory overload. Albumin 25% is hyperoncotic, therefore, in the presence of dehydration, albumin must be followed by addition of fluids.

In presence of hemorrhage, albumin should be supplemented by the transfusion of whole blood to treat the relative anemia associated with hemodilution. When circulating blood volume has been reduced, hemodilution following the administration of albumin persists for many hours. In patients with normal blood volume, hemodilution lasts for a much shorter time.

The rapid rise in blood pressure may follow the administration of a colloid with positive oncotic activity necessitates careful observation to detect and treat severed blood vessels which may not have bled at the lower blood pressure.

Adverse Reactions (Side Effects):

Rare: Such reactions may be allergic in nature or due to high plasma protein levels from excessive albumin administration. Allergic manifestations include urticaria, chills, fever, and changes in pulse, respiration and blood pressure.

Dosage:

Always administered by intravenous infusion; albumin 25% may be administered undiluted or diluted in 0.9% Sodium Chloride or 5% Dextrose in Water.

Hypovolemic shock:
The volume administered and the speed of infusion should be adapted to the response of the patient

Burns:
After a burn injury (usually 24 hours) there is a close correlation between the amount of albumin infused and the resultant increase in plasma colloid osmotic pressure. The aim should be to maintain the plasma albumin concentration in the region of 2.5 , plus or minus 0.5g, per 100ml with a plasma oncotic pressure of 22 mm Hg. This is best achieved by IV administration of albumin 25%. The duration of therapy is decided by the loss of protein from the burned areas and in the urine, In addition, oral or parenteral feeding with amino acids should be initiated, as the long-term administration of albumin should not be considered as a source of nutrition.

Hypoproteinemia with or without edema:
Unless the underlying pathology for hypoproteinemia can be corrected, the IV administration of albumin 25% must be considered purely symptomatic or supportive. The usual daily dose of albumin for adults is 50 to 75g and for children 25g. Patients with severe hypoproteinemia who continue to lose albumin may require larger quantities. Since hypoproteinemic patients usually have normal blood volumes, the rate of administration should not exceed 2 ml/min as more rapid injection may precipitate circulatory embarrassment and pulmonary edema.

Store at room temperature not exceeding 30 degrees C (86 degrees F).