Living with Hypoproteinemia (Low Protein)

Haven't come to Terms with your Illness yet? Try Journaling

2012-01-31T07:29:00.000-08:00

Although the following article is focused on mesothelioma as the illness, journaling can help people across the entire spectrum of chronic mental and physical illness.

If you never tried journaling, read the following article and get started.

My journaling experience has been in the form of poetry. The practice has helped me cope with many situations over the years.

Here is the article:

Journaling as a Way of Life
by Melanie Bowen

Composing and organizing thoughts and goals in a journal aids individual self-assessment. Writing is a way to stimulate the brain to think in new ways. From one being diagnosed with diabetes to those with breast cancer, or stated mesothelioma prognosis, keeping a journal helps with the healing process. Writing down hopes, dreams, wishes, desires, ideals and future accomplishments contribute to a person’s overall psychological and physical well-being.

Dr. James Pennebaker, noted psychologist and researcher at the University of Texas-Austin, explains that writing in a journal helps to strengthen immune cells referred to as T-lymphocytes. Recording stressful events is a way to reduce the toll that the stressful experience may take regarding overall physical health. Tear production during journal writing may also occur according to studies conducted by Dr. Pennebaker and his associates.

Journaling is a way to help mesothelioma patients cope with the illness and reduce stress. It is an effective way for these individuals to clarify thoughts and feelings and learn more about themselves through creative writing and expression. A daily log helps with problem solving and tracking patterns, trends and daily improvements in physical and mental health.

The best way to begin writing in a journal is to begin with an open page and an open mind. Start with a recent story about a life-changing incident or dream. Individuals from long ago have relied upon story telling as a therapeutic way to heal and achieve personal growth. Individuals who have the ability to construct a written narrative are more likely than others to experience the positive benefits of healing through creative expression.

Writing stories in a journal helps to identify the emotions and thoughts of the mesothelioma patient after a doctor issues a prognosis. Jotting down notes about future goals, aspirations, hobbies and interests in a journal are ways to stay motivated and inspired. The key to happiness lies with establishing lifetime achievement goals and then writing about them. This helps individuals maintain a positive and productive outlook on life.

Journal writing is a very personal process. No one else will read the journal so there is no need to worry about correct spelling or grammar. Writing for at least twenty minutes or more every day is therapeutic and beneficial. Think of it as a road map for lifetime achievements and constructive daily activities. Jot down every passionate interest and activity. Perhaps learning a new language or musical instrument has become a new interest. Think of journaling as a way to stay motivated and interested in life.

For more information, help, and encouragement, visit the MCA blog Mesothelioma Cancer Alliance

What to know About your Inpatient Medicines and when to Refuse them

2012-01-14T23:02:00.000-08:00

Suppose you are admitted to the hospital and given your regular dose of fluid pills intravenously. Then, suppose the nurse came in your room handing you the same dose orally. What would you do?

Because of a mix up in the orders, this exact same thing happened to me. Of course, I refused the oral dose.

This brings up a great reason to refuse inpatient medicine. If you suddenly, without your previous knowledge are given an exceedingly large dose of medication, or if your nurse departs wildly from your normal doses, or if the medication you are being given is suddenly different than what you normally take, you should refuse your medicine until it‘s reviewed by your doctor.

You have the right to refuse any medicine as long as you are mentally competent to do so.

That being said, it is in your best interest to ask your medication nurse exactly what medications you are being given.

Any time there is confusion over your medications, you should have your concerns addressed by your medical staff before taking them.

I have refused medications a number of times while in the hospital. Since I am a somewhat professional patient, I am aware of certain characteristics of IV Lasix and Albumin related to my weight and edema.

I know, for instance, that I am getting dehydrated when I’ve been given these medications for several days, lose over 20 pounds of fluid, and start experiencing muscle spasms. I have refused doses of Lasix under these circumstances.

Nurse reactions to my refusals vary with the nurse. Most of the time I get an indignant look as they turn and stomp back to the med cart. Other times, they ask, “Why, Mr. Taverne?”

When I get a nurse who tries talking me into taking the medication, I tell her, “I’m not taking the medicine until I talk to my doctor.”

As a side note, there are times when I have reported medication waste; when I was supposed to get a certain amount of a medication but did not.

In one such incident, I was prescribed Intravenous Immunoglobulin at a certain dose and rate. But, because the pharmacy (who mixed my large dose from several small bottles) took one of the labels off a small dose and put it on the transparent IV bag which incorrectly indicated a dose and rate.

I, as I received this medication many times, knew the nurse was making a big mistake when she stopped the IV after infusing only 1/3 of the bag’s contents. I mounted a protest which was ignored, and the nurse threw the other 2/3 into the trash!

That stuff costs over $8000.00 per bag! The second time this was about to happen, I stopped her. I tried explaining that I was supposed to get the whole thing, but she wouldn’t listen to a “lowly patient” and call the pharmacy.

I got out of bed, still hooked up to the IV, went downstairs to the pharmacy, and asked her to explain why my nurse would throw away 2/3 of the contents of this bag as I pointed to it.

The pharmacist looked shocked as I explained what happened to the previous dose. She promptly called the charge nurse on my ward and explained that I was, indeed, supposed to get the entire bag.

I suppose the point of this post is to let you know its okay to question your medication nurses. It’s smart to question anyone who is giving you medicine.

Here are three questions to ask:
1. What are you giving me?
2. What are they for?
3. How often will I be given them?

These are great questions to start with.

If there is ever confusion about your medications, get it cleared up. Remember, it’s your doctor who prescribes your medicine (even if you are in the hospital) so when a question can’t be cleared up by your nurse, ask to speak with your doctor.

Be mindful, however, that while you are hospitalized, your doctor may prescribe medications to you without your knowledge. If this happens, and you are uncomfortable with the situation, it is okay to request a talk with your doctor.

One more note: The contents of this post are only suggestions. Any action you take in the hospital is your responsibility. I'm simply sharing my stories and making suggestions based on my own experiences.

Magic Fruit stabilizes Protein level?

2012-01-05T23:33:00.000-08:00

I think I found a product (a fruit) that seems to help me hang onto more of my protein.

I can't remember the name of it. I think it was pronounced, "oh-seye-ee". (But I could be wrong).

I'm visually impaired so I never actually read the container. I ate this fruit and drank some tea containing this fruit and blueberries. I had the fruit each night for 3 nights, then started the tea, nightly. It seems it took about 2 weeks when I noticed that my legs didn't seem as heavy with fluid. I ate this fruit several months ago, like April of 2011, and since, I've only been to the hospital a few times. My protein has gone up. It's still not normal, but it is better than it has been.

So, if you have idiopathic protein losing enteropathy, try this fruit. What have you got to lose. The next time I buy this stuff, I'm going to pay attention and get the name right. I'll post it when I find it.

Nursing Styles say Much about the Person

2011-12-10T00:46:00.000-08:00

The style-labels I use below describe how nurses relate and interact with patients while performing their duties.

Fast and efficient: These nurses usually appear strangely calm while moving 100 miles per hour. They seldom speak, but when they do, their words are short and direct.

These nurses zip in, do what they have to do, then zip out.

I liked this style best in the middle of the night when trying to sleep.

Warm Helpful & Caring: I’ve had lots of experience with this style of nurse. One such nurse, Gaylord, is a sweet woman. If I show up on the ward after a lengthy absence, she greets me with a giant hug.

One afternoon she had to give me an intramuscular Octreotide hip injection. Octreotide is very thick so the needle was quite large.
I must say, when Gaylord started crying because she had to give me that shot, I realized just how caring she is.

Knowledgeable and compassionate: These nurses exude confidence and control. On many occasions, nurses fit this category might make remarks about how a nurse on the previous shift messed something up.

This nursing personality believes the needs (comfort, safety & Medical) are their top priority.

Another nurse, Lorraine, fit’s the this style.

In 2009, I was hospitalized with very painful necrotic toes. It didn’t take long for me to discover that morphine didn’t work for me.
I needed something stronger, but because the doctor suspected I was a “pain-seeker”, she wouldn’t do anything else for me.

Then I had to have my toes amputated. As you might guess, it was very painful. This time, Lorraine advocated for me, insisting to the doctor that I was, in fact, in pain and the morphine wasn‘t helping.

Lorraine’s advocacy for me ensured my pain was properly treated. That said, Lorraine’s knowledge and compassion continue to give me great confidence in her abilities.

Lost, lazy, incompetent Some nurses make me nervous as can be. They stomp into the room, and struggle to get things right.

For example, some nurses have a difficult time setting up IV pumps. Some don’t know, for example, that most albumin bottles have ‘vent caps’ in their necks. Removing this cap allows air to flow into the bottle so the albumin can flow out.

I had one nurse stabbing the albumin bottle’s ‘spike-port’ with syringes; injecting air into the bottle. This eventually works, but the albumin bottle looked like a pin cushion and albumin dripped all over the top of the IV pump.

Some of these nurses don’t like answering nurse call buttons and act like they are doing me a favor when I ask for something like water, for example.

Occasionally, these nurses don‘t want to hear it when the patient trys to explain how something should be done.

The example of this is when I began explaining to nurses about opening the vent cap and they don‘t do it. After they leave the room I get out of bed and open it myself.

Obviously, this list of nurse types is not all inclusive. The idea I wanted to get across here is that the way each nurse cares for patients is a direct reflection the nurse’s personality.

What are your thoughts? Do you have any memorable tales about one or more nurses? If so, leave it in a comment.

5 Reasons Men Avoid Doctors - How to Help?

2011-12-04T14:50:00.000-08:00

1. Uphold a tough guy image - “I’ll be alright!” “It’ll heal on its own.”

2. Financial imposition - “It will be expensive.” “I don’t want to miss work.”

3. Fear - “I might have cancer.” “They might find out I’m REALLY sick, and if I am, I don’t want to know.

4. Stubbornness - Don’t like doctors and nurses telling them what and what not to do. “They’re going to tell me to stop smoking.” “They are going to tell me to change my diet, and I like bacon!”

5. Embarrassment - “I don’t want a digital rectal exam, or a Colonoscopy!”

Okay, I admit this list of excuses is not all-inclusive, but it does illustrate the point that the inner dialog of men can result in avoidance of medical evaluation and treatment.

That being said, avoiding doctors sometimes means allowing treatable conditions to grow into untreatable nightmares.

How do we change the inner dialog of men to reverse this situation? Maybe we can’t, but there is something we can try.

Those of us, men in particular, who have met our own medical challenges, who didn’t allow negative dialog to stop us from seeking medical attention can start looking out for our fellow men.

If we know any adult male coworkers, friends or family members who despite health issues, refuse to see doctors, we can use our own experiences to address their concerns and encourage them to seek medical attention. END

Do you have any thoughts or ideas on this matter? Leave a comment or sign my guestbook.

Pets can Improve Quality of Life VIDEO

2011-12-02T00:06:00.000-08:00

It has been demonstrated time and time again that pets can improve people's quality of life.

That said, my wife and I weren't looking for a pet when we came into possession of Holly, but now that we have her, we couldn't imagine life without her.

Here is a video of me interacting with my little doggy, Holly.

Trust in the Patient -Doctor Relationship in Western Medicine

2011-11-20T22:18:00.000-08:00

There are good doctors, and there are bad doctors. I think we all know that. Doctors will similarly say, however, there are good and bad patients.

I think the relationship between my doctors and I begins with me and my attitude.

I don’t go into an appointment with prejudices about the care I’ll receive, though some folks say I should.

I just finished watching a video of a guy with Hepatitis-C talking about how modern medicine is designed to sell illness and push pills. CLICK HERE TO VIEW IT.

I, however am not that cynical. I think most people who become doctors do so because they genuinely want to help people. They are taught medicine, which they then practice on you and I.

Does modern medicine have all the answer? I don’t think so. There are ancient healing practices that modern medicine should investigate and incorporate to create a more effective healthcare experience. One such ancient healing practice is acupuncture.

Here is a video showing how this healing method is being used today.

I don’t like the fact that I have to take over 20 pills every day, but right now, that’s all I have. They have kept me alive and comfortable for 10 years now. That said, some medicines I have taken in the past have hurt me.

So, when it comes to my relationship with my doctor, I pay attention, I ask questions, I expect answers, I insist on explanations that make sense, I am gracious, I follow their instructions, and I try keeping them informed on any and all possible changes in my condition.

From my doctor, I expect to be informed. I want my doctor to be direct and truthful about test results. I don’t want to be patronized or otherwise put off when I seek their advice.

When I think of my doctor, only one comes to mind. Dr. Sanders. She’s not even my primary care doctor. She is the Rheumatologist that has been keeping tabs on my condition for 7 of the last 10 years.

By keeping tabs I mean she has been there through almost every up and down I’ve experienced. She seems genuine when she talks to me and when ever I call her personal office, she has always spoke to me with polite dignity.

If, or when, she ever leaves, I’ll probably be pretty sad. I have really appreciated having access to her. I don’t think I’ll ever meet another like her.

Video Update on my Health Status

2011-11-19T22:58:00.000-08:00

This time I decided to make an update video to inform about my condition.

Go with me on my Ouachita River Bicycle Run

2011-11-19T09:29:00.000-08:00

I'm fortunate to be able to engage in the activity below. If you watch this, and you are able to ride, may I suggest you make a video? Show the world a beautiful (or interesting) part of your corner of the world.

Afflicted Strangers Can Lift Spirits in ways Family Can't

2011-11-03T22:13:00.000-07:00

Being afflicted with a chronic illness like idiopathic protein losing enteropathy (PLE) means experiencing unpleasant things.

It means feeling pain, sickness, despair, getting tested, poked, prodded, questioned over and over, sleepless nights in hospitals, and even contemplating what death will be like.

Sure, your family members are with you every step of the way. My wife has been with me every step of the way, and I thank her for that.

Unfortunately, no mater how close she has been, she doesn’t understand being ‘the one’ who is sick.

I’m not holding this against her, I’m just stating the fact.

I eventually discovered that It is very nice to speak to other people who know those experiences I’ve spoken about above.

Whether or not they have PLE, doesn’t matter as much as if they are also chronically ill. We speak of pain and tests as if we are siblings of a sort, and emotionally and psychologically, it feels good.

So, if your illness is getting you down, and you need to talk to someone, try speaking with someone who is sick like you.

Fear of Bad Medication Side effects is Real

2011-10-31T16:11:00.000-07:00

For the first time, I am truly fearful of taking a medication. The doctor wants me to take “Reclast” which has been known to cause death to jaw bones of folks who have had dental work while on the drug.

The drug, taken to increase bone density to treat osteoporosis, has been known to cause mandibular osteonecrosis, so the doctor made sure I had my dental work done prior to getting this medication infused.

My osteoporosis is secondary to my hypoproteinemia; caused by low calcium and a probable absorption issue.

I’ve had my dental work done, and now its time to get the Reclast.

Should I, or shouldn’t I?

What if my jaw does die? What would that be like? Would it rot? Would I then have to have it removed? How would I eat? How would I go out in public?

This is a side effect I’m not sure I want to tangle with, but alas, I have severe osteoporosis and that can be very harmful as well.

What to do… what to do?

Prednisone was another drug I had to take that had serious side effects, but I was brave and took it like a trooper. It ended up causing me to be legally blind.

My advice to you is; you should take those medication warnings seriously. I used to think those side effects would never happen to me… now I know different.

Ultimately what I will do is weigh the benefits against the risks… as difficult as that is… and make the best choice.

I’ve already put off two appointments for getting the Reclast infusion. I think I’ll go next time and get it.

So Far, 112 posts Containing Intimate Knowledge of my Hypoproteinemai Struggle

2011-10-18T21:53:00.000-07:00

Most of the time, medical information found on the internet is cold, sterilized and hard to understand.

That said, the idea for this blog came when I couldn’t find real life accountings of what it means to live with hypoproteinemia.

I’d ask the doctor for a prognosis, and get, “With your particular condition, Protein Losing Enteropathy, we just don’t have enough information to know what to tell you.”

I found this hard to believe. I asked them to make an educated guess as to my prognosis, and they wouldn't give me one.

You would think that if they know the function of proteins within the body, they would be able to surmise what might happen to me in the future, but they wouldn't.

So, I’ve been keeping this blog; a journal of sorts to document my various treatments as well as side effects, successes, failures, and general experiences that have arisen due to this condition.

If you came here looking for information about hypoproteinemia, the kind of information that might benefit you or someone you love, feel free to look through the links on the right hand side of the page or go through my archives.

I do have a medical background, so I was able to keep pretty good accountings of medications took and their relative effect on me.

I discuss Albumin replacement therapy, cytoxan, prednisone, other drugs, diagnostic procedures, doctors, nurses, medical mistake avoidance, and a lot more.

The only problem with this ‘blog’ format is that my ability to subject index is difficult. So for you, finding specific information can be difficult.

If you are looking for specific information, use the search box on the top left corner of this page. If your search terms don't work, try substituting other words and search again.

In addition to low-protein specific topics covered, this blog, also covers topics that could be helpful to patients of other chronic illnesses.

I have even posted videos explaining some symptoms related to edema, my own diagnosis, and more.

Thanks for visiting, and I hope this blog is of help to you.

Regards;

Daniel Taverne

Reported Gout Remedy

2011-10-13T23:16:00.000-07:00

If you or someone you know has gout, listen up!

I am a ham operator so I know a lot of folks from a lot of places.

This evening, I overheard a conversation between two men who were talking about gout.

I over heard that a product called Dimethyl sulfoxide, DMSO can really help.

DMSO, according to what I heard is a veterinary lineament that folks with gout can rub on their affected areas and get relief.

It is absorbed into the skin, and smells like garlic.
CLICK HERE TO READ ALL ABOUT DMSO.

Tea Party Inclusion cards Counter Left's Lies

2011-10-12T12:27:00.000-07:00

Sorry for going political here, but I have to do something to counter the lies made by the left and mainstream medis. Scroll past this for the hypoproteinemia posts or use the links in the right hand sidebar.

Purchase the cards, then leave one behind for 'just-met' persons of color to find following your friendly, amiable conversations.

The bus, in cafeterias, libraries, schools are some examples of where you might come in contact with minorities, and when you might leave a card.

We've got to respond to the lies being spread by mainstream and let minoriies know we stand for them too.

Click on the card below to purchase a bunch from my store. I created these so I get a royalty from each sale.

You can also help me by reposting this on your facebook and twitter accounts. Thanks in advance.

Here's the Card:

Tea Party Inclusion Card by Observations
sell your paintings online for free at Zazzle

Update - Spironolactone may be Helping to Retain Albumin

2011-10-12T07:45:00.000-07:00

I traveled to the hospital with the expectation of being admitted for another round of Albumin infusions and Lasix via IV push.

Upon getting my blood work back from the lab, my primary care doctor and I happily discovered that my Albumin level was 2.1.

Why is this a good number?

I left the hospital after a 4 day stay September 2nd. and my Albumin was 2.7. That is only .6 higher than it is now and I have been out of the hospital, (away from 3 infusions of Albumin a day) for at least 40 days.

When I went into the hospital, that stay, my Albumin was 1.7.

So, at least for now, my Albumin seems to be trending upward.

My Rheumatologist believes the reason for this may be the Spironolactone I began taking several months ago.

I just looked up this drug and see where some folks claim it helps with fluid retention for folks with congestive heart failure. I DON'T HAVE CONGESTIVE HEART FAILURE but It may be helping with my fluid retention problems because somehow it is helping my body retain my protein (which, when low, causes a change in osmotic pressure allowing fluid from the cells to move across the cell membranes and 'third-space').

Since my Albumin showed this 2.1 measurement, we decided I didn't need to be admitted for agressive diuresis. We decided that I'd increase my spironolactone as well as my daily lasix.

Dangers situations Associated with Poorly Managed Pain

2011-10-03T00:13:00.000-07:00

Have you ever endured severe untreated pain? Maybe you were hesitant about asking the doctor for pain medicine, or perhaps you felt you could gut it out leaving you to suffer through the nights unable to sleep.
What ever your reason for not getting your pain managed, they aren’t good enough.

Let me suggest this situation can cause unintended risks.

Here are two of my own examples:

I was in such pain that I couldn’t sleep. So, I was laying down on the futon in the living room.

I would sit rubbing my painful toes and foot all night long thinking I wasn’t ever going to sleep. I found out, however, that (actually) I did sleep some.

You see, I was a smoker back then. I smoked a lot of cigarettes because (psychologically) they seemed to help.

One night I was sitting there rubbing my foot, then the next thing I realized, the room was filled with toxic-burning-foam-smoke. I had dropped the smoldering butt onto the futon mattress, and it almost caught fire.

Another incident occurred one night, same pain situation, I put the tea kettle on for some hot coco. Again, I unknowingly fell asleep.

I awoke to the smell of melting plastic as all the water had boiled away, a hole burned into the bottom of the aluminum, and the plastic button and whistler cap melted away.

These were two instances where improperly treated pain could have really been tragic.

My advice: If you are in pain, you really should get it effectively treated. You can’t let your worried that they’ll think you are a “pain seeker” (someone seeking pain medicine to feed an addiction) stop you from asking for help.

I started telling my doctor, I don’t care what you give me as long as it works. If the medicine didn’t do the job, I let the doctor know.

Be ready to talk to the doctor about your pain.

What hurts? How does it hurt? When does it hurt? What helps the pain? What makes the Pain worse? What have you taken for pain in the past and how effective was it?

Having these answered when you talk to your doctor can help determine your own effective pain management and avoid sleepless night dangers like those above.

Effects of Low Protein on Hair Growth

2011-09-24T10:21:00.000-07:00

These are not my legs

I have experienced hair growth changes that vary with my protein levels.

When my Albumin is less than 1, for instance, I seem to lose the hair on my legs, and my facial hair as well as the hair on the top of my head seems to grow slower.

When my Albumin increases to 1.7 or more, I begin to notice stubble on my legs.

I have never been an excessively hairy fellow, but prior to my hypoalbuminemia medical condition I did have hairy legs. I’m a guy, and I don’t shave them, but for the longest time, my legs have been bald.

Now that my Albumin level is above 1.5, I’m noticing lower leg hair growth and I kind of like seeing it.

I started taking a drug called Spironolactone last spring, and since, my albumin has seemed to remain above 1.5.

Observations - Severe Edema & Albumin Replacement Effectiveness

2011-09-04T23:29:00.000-07:00

Update - I went back to the hospital this past week. I went in on Tuesday August 30, and came home Friday 3 days later. I went in with a wet weight of 189 pounds and left weighting a dry weight of 178 pounds.

My albumin level was 1.7 and my total serum protein was 3.2.

These levels are pretty good for me, and I suspected they would be according to where my edema was most pronounced.

Edema characteristics are different depending on what the Albumin level is. For example, when my albumin level is less than one, the edema uncomfortably manifestos on the dorsal (top) surfaces of my feet; painfully stretching the skin almost bubble-like. This situation is in addition to severe generalized edema known as Anasarca.

When the albumin level is less than 1, the edema commonly manifested in my scrotum, penis, as well as beneath my chin.

These areas are all known as ‘dependant surfaces’ because they are areas that water (edema) will dam up or collect simply because it can go no farther. Even my belly at the belt line (my abdominal tissue) would collect fluid and hang outward looking alot like a water bag!

In addition to severe edema affecting dependant areas, the edema at the less-than- one-level seems to manifest in my intestinal walls as well.

Furthermore, it has been my experience that I eat smaller meal portions when the level is less than one because there is not as much room in my abdominal cavity for my enflamed intestines, my diaphragm and large portions of food. I would feel full quickly, and would have difficulty breathing deeply (not enough room for diaphragm motion).

Prior to the severity of my edema progressing to this degree, I’ve noticed that my oral Lasix gradually lose their effectiveness. As they do, my edema gradually increases culminating into the severe symptoms described above.

Treatment I receive for this is simple: Albumin (human) 25%, USP In a Single Use 50MIL vial (every 8 hours), and 60 to 80ml Lasix 30 minutes following each Albumin infusion.

Blood pressure monitoring as well as electrolyte level monitoring are a must.

I have made some observations concerning this albumin replacement therapy.

First observation when my albumin level is so low, it takes about 36 hours before I really start urinating a lot and see a significant weight (edema) loss. Also, salty snacks can hamper this therapy’s diuresis effects.

Another observation of mine is that body movement helps the process of diuresis. (Diuresis is the medical term for eliminating edema via urination through the use of pharmaceuticals. Diuretics pull fluid into the bladder to be eliminated).

I have found that taking regular walks seems to help the diuresis process. I believe that this is due to the increasing circulatory activity.

A third observation pertains to how the edema decreases. The first place I notice it decrease is my intestines. Very quickly I begin to feel less bloated. Next, my arms, then my lower legs lose their edema. After that, I lose it in my dependant areas last.

One thing to know is that you have to use your weight to accurately assess fluid loss. This is because you can be fooled when in bed (supine) for a number of days, your edema will have a new dependant surface: your back.

If your back is your dependant surface, your shins (lower extremities) will be skinny though you’re edema hasn’t actually decreased. So, use your weight.

When being weighed by hospital staff, you should ensure the scale is accurate. If your weight when checking into the hospital wildly differs from what you know your weight should be, you should confirm the weight by weighing on another scale.

After you are confident the weight is accurate, you should use the same scale for every daily weight. Additionally, you should be weighed at roughly the same time each day.

Also, refer to your weights in terms of dry or wet weights. I have gone in the hospital with a wet weight of 200 pounds, and 7 days later discharged with a dry weight of 170 pounds.

Well, I’m going to leave it here. I hope this information is useful to you in some way.

Rare Disease and thought’s about Internet Searching

2011-08-18T23:28:00.000-07:00

One of the funny aspects of having Idiopathic Protein Losing Enteropathy (PLE) were the occasional search results that would take me by surprise.

I’m visually impaired, you see, so reading case studies and other medical literature is kind of difficult for me.

I use window’s magnifier program - an available utility that comes on computers running windows - and I only have the top 2 or 3 inches of the screen that is magnified enough for me to read the text. Whatever I hover the mouse over is magnified in the that 2 or 3 inch display window. I have the magnifier’s setting maxed out.

So, there I would be slowly reading along. I’d get deeply involved in an article and start thinking about getting a particular doctors contact info; only to get to the bottom where I’d discover the article was talking about dogs.

Another situation I’d run into is after getting to the hospital clinic appointment, I’d speak to the doctor using medical terminology. I’d also ask about stuff I’d read in articles and case studies. Additionally, I’d get him/her to explain why my etiology isn’t one thing or another.

I don’t do this so much anymore, but I seem to recall getting the impression that this annoyed the doctor.

Often, however, the doctor would complement me on having a thorough knowledge of what was happening in terms of current treatments, and my ability to explain my condition to medical students practicing their patient interviews.

I have heard some doctors don’t appreciate patients doing internet research. What happens, I’ve heard, is occasionally, some patients jump to conclusions; thinking the worst and believe that because their symptoms fit an illness (like cancer) they think they are going to die.

Still others look on the internet for what their strange illness might be and to end up self-diagnosing themselves with a minor condition. Feeling confident, they sometimes stop seeking professional medical advice only to have an illness that grows out of control.

One thing I’ve tried to keep in mind: Although some doctors are known to make mistakes, and although each doctor’s knowledge is finite (they don’t know everything), they are very well educated I. That said, have tried not to second- guess their judgment.

Could changes be Helping me? Update

2011-08-07T21:37:00.000-07:00

　I’ve been doing pretty well for the past 2 months or so. When I say “doing good”, I mean I haven’t had to go to the hospital for Albumin and Lasix infusions.

I can only speculate as to why this is so. A few things have changed.

You see, I realize the cause of my PLE could be a number of factors and I‘m trying to address them.

One cause could be environmental so I’ve made a drastic change.

It seems my protein losing enteropathy correlates with moving into the mobile home we now occupy. So, for the past year I’ve been sleeping in a separate building.

Also, I realize that some dietary changes could decrease inflammation and I’ve started eating some foods associated with this knowledge.

Also, I wonder on occasion if my PLE is stress related. For the past 10 years or so, the dynamic between my wife, my step daughter and myself, has caused much stress.

My step daughter has been quite absent form the situation over the past 9 months or so… especially after becoming pregnant and moving out.

Additionally, I’ve added some protein to my diet… on a regular basis: namely fish. I bake it, and try consuming fish at least 2 times/week.

Do you Like Chia Pets? The Seeds are High in Protein

2011-07-10T22:18:00.000-07:00

I'm reposting this here from THIS WONDERFUL WEBSITE that you should check out. There are all sotrs of questions answered there. I'm posting this one question and answer because It might help folks with hypoproteinemia.
Q: What do you think of chia seeds? — Elly, Port Orchard, Wa.

A: We think they do way more than grow a head of green hair on a guy made of clay. Chia seeds (Salvia hispanica) sprout “hair” and “fur” on Chia Pets, but on the healthy-food front, they’re a nutritional powerhouse.

Originally, chia was the only foodstuff Aztec warriors carried into battle. Chia seeds are nearly as high in protein as quinoa and as high in omega-3s as flaxseed, but unlike flax, you don’t have to break open the seeds to get all their goodness.

This nutty-tasting food of the Aztecs can be stored for long periods and provides quick energy. It also keeps you regular, because chia is 50 percent to 60 percent fiber, as well as high in vitamin B, calcium and potassium. And there’s some evidence that chia reduces visceral fat, the nasty inner spare tire that can lead to diabetes and heart disease.

Sprinkle the seeds on salads or grind them and add to a whole-grain muffin recipe.
____________________
My Comment:

After reading this I think I'll give them a try. This is the kind of food my nutritionist would encourage me to eat.

High Cholesterol? Add Hot Chili Peppers to your diet

2011-06-13T11:39:00.000-07:00

While trying to find out why my bell peppers keep falling off the plant, I came across this interesting tid-bit of information.

Because of my hypoproteinemia, my cholesterol and triglycerides are very high. That's why I found this bit of information very interesting. Maybe this is is why I find myself craving them so much.

This is from a list of questions Located on this website.

13. Q. We have just moved to this area and enjoy the Mexican food. What makes Mexican food so hot? Is it the pepper they add?

A. The cooks add pepper alright but not the black stuff you shake from a can - they add green peppers, Capsicum annum. These peppers contain a chemical named capsaicin. When you eat these "green bullets from hell" there's a cellular response that releases neurotransmitters. These are proteins that mimic chemically the sensation of burning or pain. They go to the end plate of our sensory nerves and create the sensation of pain. The body's response is to remove the chemical irritant by increasing heart rate to increase metabolism, by increasing salivation and increasing sweating. Your nose runs and the gastrointestinal tract goes to work in high gear to remove the irritant. You sweat to cool yourself.

The body's strong reaction to capsaicin is why many people claim chili has medicinal properties. A paper by a New Mexico biologist noted that the death rate from heart disease in the state was about half the national rate. She also said the rate of heart disease among Hispanics and Indians was low. Presumed reason? They all eat lots of chile pepper and that reduces blood fat levels. Hot peppers are said to protect against blood clots that could cause thromboembolism.

So why do folks eat this hot food? When people eat hot chili the brain secretes endorphins, the opiate-like substances that block pain. Endorphins are produced when runners "hit the wall" and get their second wind. Who needs to jog and watch their diet? Just eat peppers and keep on burning!

A Tasty Fish Recipe from Daniel Taverne (Blog Owner)

2011-06-06T18:52:00.000-07:00

In an effort to keep life interesting, I created the following video of me preparing this baked fish dish. I call it "Baked Tilapia with a Tomato and Green Chili Salsa"... now doesn't THAT sound impressive?

Not only is fish high in protein and omega-3 fatty acids, prepared this way made it taste GREAT!

Give it a try then give me your feedback.

Study - Curb Overeating with Protein-Rich Breakfasts

2011-05-21T09:56:00.000-07:00

If you want to stay healthy, researchers at MissourUniversity are suggesting that regularly eating protein-rich breakfasts keeps you satisfied and wards off overeating... read full story. <---LINK

My Comments:

Many people with hypoproteinemia are subject to hyperlipidemia (hign levels of fats in our blood). I, for example, have high cholesterol and triglycerides).

So if I follow the advice indicated in the above study, I'll consider what kinds of proteins I consume.

Bacon is a protein food, but it also has a high fat content. Sure, I might eat a slice of bacon every once in a while, but that is not going to be what I turn to to increase my protein intake.

I may, for example, add some egg-whites to my scrambled eggs. Egg whites are high-protein, but low cholesterol.

I may consume a protein supplement such as a soy-protein powder mixed into my orange juice.
I think it would be okay to increase protein, provided it isn't a high fat/cholesterol protein.

What are your thoughts?

The article referred to in this post was a headline located in the right side-bar of this blog. The headlines are updated daily, so bookmark this site and come back often.

Meditation Prescribed More & More Often as Alternative to Medicine

2011-05-10T21:41:00.000-07:00

Watch this Video. I am a firm believer in meditation as a way to, at least, promote peace, well being, and health.

Why not give it a try.