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Monday, December 27, 2010

Indications of Higher Protein Levels - Update

As noted in earlier posts, my weight is a good indicator of my protein level. If my albumin is low, my weight increases over time due to edema.


Inversely, when my albumin is higher, my weight (edema) decreases..


I believe my weight is dropping significantly right now, so my protein must be up. 22 days ago I weighed 199 pounds. Yesterday, I weighed 176.


Also, since I’ve been ill, I notice I have no hair on my legs after a long period of time with low protein. Then, as my weight begins to decrease due to an increase of protein, hair begins growing on my legs again.


Another more personal way I can tell my protein level may be on the rise is sexual arousal. I’ve noticed this aroused state more frequently lately.


Medication changes: I was taking Budesonide 1 cap every day. I decreased this to every other day.


Diet change: Over the past week, I’ve increased my fish intake significantly.


Dec 6-11 I was in the hospital getting albumin infusions and Lasix tid (three times a day) q8


The week I came home, I changed that budesonide dose. That week, my weight started creeping back up.


Then, I broke my leg on Dec-19. It seemed that immediately following that event, I began feeling less edemic.

Monday, December 20, 2010

Unexpected Accident Sunday

I broke my leg Sunday. My left Tibia fractured high (close to the knee). They called this the Tibia Plateau.


This injury occurred as I innocently threw an object into a tree. You see, I kicked my dogs ball high into the tree where it became lodged amongst its branches. I was attempting to knock the ball from the tree with a heavy socket.


When I threw the object upward, the lateral portion of my left leg was put in an un-natural bending angle, then it popped loudly. Of all ways to break a leg, this has got to be the lamest!


The orthopedic doctor who saw me said this type of fracture most commonly results in surgery. But in my case, he thinks if I keep my leg immobilized and don’t bear weight on it, that it’ll heal.


So I’ve got a knee immobilizer on and use a crutch under my left armpit, and a cane in my right hand.


It didn’t take long for me to realize how much of a workout I’ll be getting using these mobility aids.
One of my secondary issues that crept up due to my hypoproteinemia is osteoporosis. I’m not sure if this contributed to my leg break, so my VA doctor is going to schedule me for a density scan in the near future.


This doctor also told me to be watchful of blood clots. Since I don’t have a spleen, my platelets (Thrombocytes) are a lot higher than normal. That means my clotting factor is higher.


I am at risk of developing embolisms.


This is all for now. If you’d like to help me keep this blog going, feel free to donate using the button on the page.

Monday, December 13, 2010

Video Update about My Latest Hospital Stay

As my previous post indicates, I was recently in the hospital.  I made a short update video to fill you in on my latest treatment.

Friday, December 3, 2010

Dec 3, 2010 Update - Not Doing Well, and Why

I’m having a bad week. I messed up and ran low on my Lasix (fluid pills) and man, am I paying for it now!


Anasarca has set in with a vengeance! I think I have at least 30 or more poinds of fluid. It is VERY uncomfortable.


I’m paying close attention to my breathing, because fluid overload like this can cause the space between my lungs and their lining to become fluid filled. This is not good.


My belly is protruding like… like I don’t know what, and my legs, arms, hands, and face are bloated.


I definitely have to go in to the hospital Monday. My new supply of lasix did come in today, but they are not very effective right now because the edema extends into my intestinal tract and interferes with their absorbtion… hence their decreased effectiveness.


This situation as a great example of why it’s important to keep up with your meds.

Wednesday, November 24, 2010

Thanksgiving Message from Daniel Taverne (Blog Owner)

A Protein losing enteropathy (hypoproteinemia) is pretty tough to deal with. I know what it’s like to attend family functions only to lay on the couch with my legs elevated while everyone else visits having a great time.


I understand the feeling of not being able to eat because food in my stomach, and excess fluid in my belly makes it hard to breath.

This is why it’s so important for people like us to grab onto the moments when we feel pretty good. Since they are few, We know that such moments are not to be wasted.


Maybe you are chronically ill with another affliction, this applies to you too. Actually, this is just as important for the perfectly healthy, though they may not realize it.


Is this an advantage we have over them; that We learn the value of moments?


I saw a TV show this week where a man told a woman to take pictures of moments, not people.  That’s what we need to do. We all need to pay attention to (and value) moments...Even in the midst of illness.

Friday, November 12, 2010

Anatomy of My Illness

A tough condition like yours and mine has an anatomy, and I’m not talking about ‘the illness’ in itself. I’m talking about all the aspects of a person that an illness touches.


I wrote this letter to a fellow on television a few years back. I feel compelled to include it on this blog to let you know a little about my illness anatomy.


Here’s the letter: I don’t want to die yet. I have a young spirit! There are things I want to do. I’m not one of those old people who refuse to do things because those things are jouvenile. I love laughing, riding my bike, camping, hiking and I have interests.


I was a brick layer/ block layer as my illness raised it’s ugly head, and I remember my last day on the job when I couldn’t see good enough anymore to lay some soldiers across a lentle at a Corky’s BBQ Resteraunt. While driving home that morning, I could have caused an accident as I skidded through an intersection because I couldn’t tell that it’s light was red until I was only a short distance from it. That was also the last time I’ve driven my car on the streets.


There was a while when I placed 2 donation cans in a local convenience store, we didn’t have money for food, or Christmas, and the usual food bank was out of food because it had already given out its inventory because of the holiday.


We’ve had to file bankruptsy and only have about 2 more years to pay on it. I am getting social security disability, and until recently I had a job as a physical therapy tech. I was having to go to the hospital too much, and my supervisor could see I was trying to work through a lot of pain which I was unsuccessfully trying to hide. They eventually replaced me because of this. I loved the job too because in 2002 I had just about completed COTA certified Occupational therapy assistant college and finally had a chance to feel like I was benefiting others by using a lot of what I learned.

Tuesday, November 9, 2010

Emergency Treatment for my Hypoalbuminemia

Will there ever be a need for me to have  “emergency” treatment for my hypoalbuminemia?


My kneejerk reaction was to answer "no", but thinking back now, I remember instances when my breathing was impaired due to acites (fluid accumulation in the abdominal area), so I have to answer my question with a "yes". This fluid was interfering with my mechanical ablility to inhale deeply enough to maintain a normal oxygen level.


I have also had fluid accumulate around the lining of my lungs (plural effusion) which would impede the full inflation of my lungs.


In my case, the fluid overload I was experiencing was treated with a combination of Albumin infusions, and intravenous Lasix. That said, the plural effusions were taken care of manually by physically draining them with a needle.


I can’t say that because of my low albumin that I was in danger of death because of these two issues, but I was extremely uncomfortable, and in some pain.


Another emergency, not necessarily due to the fluid overload, are serious infections. When these unfortunately arise, I’m usually given strong intravenous antibiotics as well as intravenous immunoglobulins to help boost my immunity.


Many of my hospitalizations I was given the albumin and lasix at 8 hour intervals for a week, then before I left, they were followed by a final dose of the immunoglobulins.


This final dose sometimes seems to help the other proteins gain a foothold in my circulatory system as evidenced by unusual spikes in my total protein level.


Questions, comments or criticisms can be left either in a comment or in my guestbook.

Wednesday, November 3, 2010

Healthy Eating Video - very good

This is good stuff, and it's very interesting. I think I'll incorporate some of these ideas in my home. What do you think?

Thursday, October 7, 2010

My Situation Update

My protein level is not as low as it has been in the past. I don't know exactly what my albumin is, but judging by my edema level it's around 1.5.

I, as you may already know, am a veteran. Well, I went to the VA hospital in Jackson, MS a week and a half ago to see my primary care doctor.

I had been taking spironalactone (sp?) and my potassium needed checking. It turned out to be fine.

My edema on a scale of 1 to 10 was about a 5 and I was uncertain about being admitted because ther were things I wanted to do the following weekend. Being hospitalized would have put a damper on those activities.

Well, I did go back home with instructions to take a larger dose of the spironalactone (sp?). I was also instructed to come back in 2 weeks for another potassium check. I informed them I wouldn’t be able to come back that soon due to the cost of travel.

It costs me about $70.00 each time I go. The doctors seemed unsympathetic and sent me home thinking I was going to comply with their instructions.

I called them today and rescheduled that in 2 week appointment . I’m also taking the original dose of the spironolactone and will increase it 2 weeks prior to the new appointment.

Well, as you can tell, juggling finances due to health concerns is tough. I may be “wrong” for the way I am approaching my situation, but I’m doing the best I can.

Monday, October 4, 2010

Is there a Cure for Hypoalbuminemia?

Is there a cure for Hypoalbuminemia?

Well, depending on what the cause of your case is, there just might be. 

Some albumin loss can be contributed to conditions that can be addressed.
Heart defects, Celiac disease, vasculitis and other conditions can be addressed through surgery, diet or medications.

  However, other conditions may not be curable, in which case treatment of symptoms might be the doctor’s only recourse.  I have an idiopathic form of the condition.  This means the cause of my low albumin is unknown. 

While the doctors haven’t yet given up on finding a specific cause to address for me, they have been focusing on the treatment my symptoms.

Diuretics, Albumin infusions, infection control, dietary and other strategies have been brought to bear.

Also, I’ve tried a number of drugs, both injections and oral, to try to address the low protein issue itself.  I’ve had moderate success with Humera, but had to discontinue it due to a Tuberculosis side effect.  I’ve had some success with Prednisone but had to stop due to Vision and other uncomfortable side effects.

I tried a chemotherapy drug called Cytoxan, an IV drug.  That was rough on me.  It seemed to help a little too.  That’s not a drug to be on indefinitely.

Well, this is all for now.

  

Wednesday, September 22, 2010

5 Nonessential Items I Bring when Hospitalized

If I know I'm going to be hospitalized there are 5 items I make sure I bring with me.  Some may seem silly, but they all contribute to a more comfortable stay.

1. Safety pins : I go to the VA hospital where we patients
are given “pajamas” instead of a gown to wear. Problems arise if the fly-snaps on the bottoms are worn out making them unable to fasten well.

I’ve had occasions when, while walking the hospital corridor, the fly-snaps suddenly gave way leaving the elastic waistband free to rapidly yank my fly wide open!. When this happened I couldn’t reach for my drawers fast enough!  They all too quickly fell to  my ankles.

So you see a safety pin or two will always be carried with me when I think I’ll become an in-patient.!

2. Cuetips: That’s right, cuetips. Do you know how frustrating it is to be someplace where you can’t swab your ears with a cuetip? When I get desperate, with out cuetips, there is no telling what objects might be shoved in my ear. 

3. Nail clippers:  Have you ever asked a nurse for nail clippers? You might as well ask the nurse to get you a Straight Razor.

4. Lip balm: In the hospital, my lips have dried out like worms crossing the highway at noon in the Mojave' Desert. Hospitals keep the air so conditioned that the humidity is very low. Therefore, I always keep lip balm on my packing list.

5. Tabasco or Hot Sauce: Yes, I bring my Louisiana Supreme hot sauce to the hospital. I learned in the army that otherwise unappetizing food can be made more palatable with a couple shakes of hot sauce.

Staying at hospitals can always be made a little easier with the “not so essential” items. That said, consider this post and then decide what your own are.

Saturday, September 18, 2010

5 Disciplines that Might Diagnose Your Hypoproteinemia

Hypoproteinemia is not a diagnosis, it is a manifestation of some other cause.  Hypoproteinemia simply means low blood protein.  That said, the following disciplines, and possibly others, may get involved in finding the cause of yours. 


1. Rheumatologist - A Rheumatologist may check a number of areas of the body since autoimmune causes of low protein can be found in  multiple systems. Here is a list of some: Blood and blood vessels, Digestive tract (including the mouth) Glands, Heart, Joints, and Kidneys.

2. Gastroenterologist - Since the cause of your low protein might be digestive in nature, this type of doctor may want to examine you. He/she may scope your upper and lower GI tracts.  This discipline would probably do CT scans of your digestive tract first though.

3. Cardiologist: May look at heart issues in infants, children, the elderly, or others for issues causing low blood protein. It’s my understanding that weak hearts can cause protein loss. Also, there are some heart birth defects that cause  hypoproteinemia in infants and children.  Fortunately, doctors can fix some of these.

4. Hematologist: These doctors may look for clues in the blood for what might be causing a decrease in protein.

5.  Geneticist: This kind of doctor would look at your family history, and examine you for clues as to a genetic cause of your hypoproteinemia.

As always, this list is not the end-all list of specialists that might see you. Your low protein may cause secondary issues that might require even other types of doctors.

It’s for this reason that it’s extremely important to have a good primary care doctor who can, and will coordinate your care with all these specializations.

I’ll soon post some suggestions for primary care doctor’s that may come in handy for you, the patient.

I gratefully accept corrections and/or suggestions for this blog. Any input can be left in the form of a comment, or by signing my guestbook.

Thursday, September 16, 2010

My Health Update

I've been feeling pretty poorly the last few days.  It started with a pretty bad sore throat which has gone away.  But it didn't just go away, the illness moved into my head and chest.  Arrgh!  I can't stand colds.

I have a full prescription of Doxycycline hyclate that I'm going to start taking.

Hopefully I'll start feeling better soon.

As far as my hypoproteinemia symptoms, they are on the stronger side.  I feel pretty bloated.  My edema is pretty high now. 

At the beginning of the year, I weighed less than 130 pounds.  I am now up to 185 at least..  I'm hoping my eating hasn't resulted in much of that weight being fat instead of fluid.

I know some of the weight is muscle thoug because I've been exercising all summer.  Some of the nurses at the hospital the last time I was there were making comments like, "Look at Mr. Taverne... all buff!"  And, "Boy you been working ou. t huh?"

I didn't know working out would make my butt bigger.  I can't fit into my 140 lb pants anymore.  Ane, I'm not happy about that.

I'll stop typing now.  I hope you, where ever you are, are doing well.  Please feel free to post comments.  If you want I'll share your story here.

Tuesday, September 14, 2010

Chronically Aflicted - Pay Attention to Moments

A Protein losing enteropathy is pretty tough to deal with.  I know what it’s like to attend family functions only to lay on the couch with my legs elevated while everyone else visits having a great time.

I understand the feeling of not being able to eat because excess fluid in my belly makes it hard to breath.

This is why it’s so important for people like us to grab onto the moments when we feel pretty good.  We know that such moments are not to be wasted because they are few and far between.

Maybe you are chronically ill with another affliction, this applies to you too.   Actually, this is just as important for the perfectly healthy, though they may not realize it.

Is this an advantage we have over them?  We learn the value of moments.  I saw a TV show this week where a man told a woman to take pictures of moments, not people.  

That’s what we need to do… pay attention to moments and not take them for granted.

Friday, September 10, 2010

Positive Outlooks Improve Quality of Life

First of all, why maintain a positive outlook? A positive outlook, regardless of your situation can improve your quality of life no matter how ill you are.

When recently hospitalized at G.V. (sonny) Montgomery Veteran’s Medical Center, I met Len. He was my roommate, and he had multiple Sclerosis.

When I first entered the room, I thought, “Great, a guy who is ‘out-of-it’ and I don’t have to worry about what he wants to watch on TV, I can change the channel at will.” But I was wrong, he is very much with it.

His mind is sharp as a tack. His body however was another story. You see, he couldn’t move anything from the waist down. He could barely move his arms. The nurses had to do pretty much everything for him.

Furthermore, he isn’t exactly what I would call old; only 54, but his life’s endeavors seem to be forever anchored to his hospital bed.

You’d think Len would be unhappy and bitter, wouldn’t you? He isn’t. He is one of the most gracious people I’ve met. He regularly converses with the nursing staff as if talking to siblings. That said, when the staff orders-out for lunch or dinner, Len often has them order for him as well, and he often buys.

Additionally, he absolutely knows what shows are on TV as well as what time and channel. He said watching TV is one of the only things he can do, so he tries to enjoy it as much as he can.

I asked him how he manages to keep such a positive attitude. He said he used to feel sorry for himself. He used to be angry, but eventually, he realized his negative emotions were solving nothing.

He decided to make the most of his situation, and turned his attitude around. Isn’t that the only thing any of us can do? We have to decide to be positive. We have to decide to make the most of our situations. Think of the things you CAN do, instead of missing the things you used to do.

Sometimes the realities of life are cruel, and it’s up to us to change our attitudes which will improve our quality of life.

Monday, September 6, 2010

Hospital Woes Overcome (humorous)

If you are hospitalized alot, maybe you can identify with this article I wrote a few years ago.

Hospitals are wonderful places, aren’t they? Where else can you go where it is common practice to get jabbed with needles, be expected to expose yourself without question, and talk to highly educated people about the consistency of your poop? I say there is no other such place.

Now I realize that for many, hospital stays can mean the difference between life and death, but I’ve found through my many experiences that hospital stays can also be a real drag.

First of all, when I go to the hospital, I no longer expect to get good quality sleep. If you had ever spent time in hospitals, then you know what I am talking about. The carts with the squeaking wheels moving up and down the halls at all hours, the intercom that seems to squawk something every ten minutes, and the janitors with the floor buffers whirling outside my door seem to grind my much needed rest into little ashy piles of soot that get blown away by frigid Yukon-like winds emanating from the arctic ventilation circle mounted in the ceiling above my bed.

Additionally, there are the middle-of-the-night-voices that also keep me from sleeping soundly. Such as the chatty voices of nurses and clerks who don’t seem to have anything to do but chat. Then there are those occasional mournful voices of suffering patients crying for help. I often hear those voices floating up and down the halls, gently drifting in and out of rooms as if belonging to spirits of patients long since forgotten. It’s too bad for those poor souls when, strangely, their call buttons seem to quit working during the graveyard shift.

Another problem I have with hospitals is that they don’t put enough food in my meals. I’m sure the demand for hospital food doesn’t result with patients fighting amongst themselves for the delicacies they serve, and I know patients who despite being unable to eat are brought trays of food anyway, so why not offer seconds to those of us still hungry? Yes, I’m still hungry after eating since a serving of mystery meat is not much larger than a postage stamp.

Another problem I have with hospitals pertaining to food has to do with the ease and speed in which I am unsympathetically placed on a salt restricted diet. Have you ever had scrambled “hospital” eggs? Let me tell you, they “need” salt! Keeping that in mind, I sure would like to know how those “eggs” are made. Are they eggs at all? I mean they look like they were cooked while being churned through a hot hamburger grinder. Oh how figuring such puzzles helps to pass in-hospital time.

I have discovered that I might be put through some fairly unpleasant procedures while in the hospital. Take the colonoscopy for instance. I don’t care how dignified a person might believe himself to be, but once the preparation for such a procedure begins, dignity goes out the window.

When I had mine, I thought I would take the procedure like a “man”, with maturity, dignity and poise. But once I began drinking the “go-lytely”, I felt like a protesting-face-making six year old as my wife stood there saying, “You’re not getting up from there until you finish!” And, that’s just the preparation!

The next day, I found myself side lying on a gurney, surrounded by at least 3 men and 2 women, with my back side roughing up with goose bumps thanks to a chilly wind blowing across it’s vast hairy nakedness.

Unfortunately, sometimes one procedure can force the necessity of another procedure. You see, following that colonoscopy I developed the worse case of hemorrhoids that I have ever had. I suffered with them for 5 days before my doctors agreed to surgically remove them.

Now aside from its location, this (as you might guess) was a very different procedure. First of all, prior to my colonoscopy, the doctor didn’t actually look at the area to be scoped. Prior to the ‘roid removal procedure however, I was surprised to discover how willing and how interested at least 8 different doctors were to look, discuss, and laugh at the size of my ‘roids. Let me tell you, bashful they weren’t. They spread my cheeks for me and everything!

Secondly, I was going to be under general anesthesia, meaning I was going to be put to sleep. I was glad of that, because I was only sedated during the colonoscopy which allowed me to feel some unpleasantness, and during this hemorrhoid removal surgery, they would actually be “cutting” on a very sensitive (yet already painful) part of my body.

As I lay there on the gurney, I wondered how such a procedure would be performed. My question was answered after I surveyed the room. I noticed that the actual surgical bed had a huge mound of foam sitting on it in addition to a log like cushion. I figured I would be unflatteringly placed in a jack-knife position mooning God and everyone. I thought to myself, ‘I only thought my backside was showing during the colonoscopy’. That said, I can’t tell you how glad I was to be knocked out prior to my positioning.

Another problem I have with hospitals is IV pumps. They can be really annoying! That said, just one time I’d love to blast one of those beeping IV pumps to smithereens with a shotgun. In the hospital, they seem to love keeping me tethered to one at all times. Now I know getting fluids can be important, but it seems like the nurses forget that I do have a functional mouth and I can utilize it to swallow water! But what do they do? They hang a bag of saline the size of Rhode Island, set the pump at 50 milliliters per hour and expect me to live with dragging that dead weight in and out of the bathroom for the next 16 hours! It’s just plain ridiculous!

After seeing so many doctors, I’ve discovered that bedside manner is a direct reflection of their integrity as well as personality. That said, I am not impressed with doctors who are supposedly listening to my breathing when they quickly move the business end of the stethoscope from place to place on my back as if trying to trap a run away Mexican jumping bean.

Finally, let me set the record strait by saying I am grateful to the staff employed at the hospital I use for taking such good care of me over the years. It remains a sad truth, however, that unavoidable discomforts will present themselves each time I’m a patient. I will, therefore, keep my past experiences in mind and be confident that hospital woes can most certainly be overcome.

Make the Most of Your Hospital Stay

Making the most of your hospital stay requires you to keep in mind why you are there in the first place. You may be there to heal from an accident, recover from an illness or have some surgery performed on you and then be observed for a time.

These primary reasons for being hospitalized should be your primary focus while you are there. This means that following the directions of your doctors and nurses should be paramount to you. Keeping this in mind, the hospital staff is available to help you while you are there.

It’s a mistake though, to assume someone is always available to answer your call button depressions immediately, every time you press it. Remember there are probably 20 or more other patients on the floor and a minimum of staffing to care for all of you. This doesn’t mean however that the staff should continually ignore your calls.

Neither does this mean it’s okay for you to call the nurse every 5 minutes for every little thing. To minimize the need for pressing the call button, try to request everything you think you’ll need while the nurse is in your room making rounds. Usually before they leave the room for checking IV’s and giving medications, they’ll ask if you need anything. This is the time to make your requests: extra blanket or pillow, water, to see your doctor and the like.

If you feel you are ignored by the hospital staff, don’t be afraid to ask a nurse why this is so. However, you should use a nonjudgmental voice and indirectly phrase the question withholding blame. For example, you could say something like, “You guys must be really busy huh? I’ve been calling for a nurse for 30 minutes. Do you think you have time to get me some ice water?”

Phrasing your discontent this way does not put the staff on the defensive, instead it aligns you with the staff as a pleasant and understanding patient they will want to help. Conversely, constantly voicing your angry disapproval might put off their answering your calls in the future. That said, not many people have a truly intrinsic desire to help crabby people.

As for me, the hospital staff is a constant source of human interaction that helps me cope with being hospitalized, so I don’t limit my interactions to the nursing staff and doctors alone. That said, I also carry on a light hearted banter with the maintenance and cleaning personnel that come in and out of my room. This type of give and take does a good job chasing away in-hospital depression.

Another aspect of being hospitalized where attitude can help is the infamous hospital food situation. Okay, so you suddenly find you’re stuck in the hospital which means you’re at the mercy of that hospital’s cooks and your doctor’s dietary rules. Let me suggest you utilize this time as a learning experience.

Although hospital food may not always taste the greatest, you can get a good idea of proper food portion sizes, and eating it might help you discover your ability to eat foods that are low in saturated fat and prepared with little or no salt. Furthermore, if you realize and accept that your diet does matter in the continuum of your health, you might adjust your diet at home accordingly.

When you’re in the hospital, you may find getting restful sleep to be a difficult proposition. With nurses going in and out of your room at all hours, janitors running floor buffers, loud squeaking wheeled carts moving up and down the halls, cabinet doors and drawers opening and closing and people talking, sleep can be as elusive as a hiding phantom.

I’ve found getting angry over this situation to be counterproductive. I surely can’t relax and sleep if I’m angry, so instead I consciously tell myself that Maintenance to the hospital must be performed, people must talk, and my not being in my own bed at home can’t be helped. If you find yourself in this situation, don’t let yourself get angry either. Instead, try to be understanding and your sleep will come naturally, regardless of nearby noises.

Another way to make the most of your hospital stay is to bring a “Notebook of Strategic Memory” and a pen with you to the hospital. I have found doctor’s names, and their departments impossible to recall without writing them down. That said, there have been many occasions when I wanted to ask the nurse to contact a particular doctor for me only to realize I couldn’t remember his/her name.

The Notebook of Strategic Memory also comes in handy when questions arise and the doctor is not around. I jot the questions down as they arise, then pose them to the doctor at a later time.

You can do everything in a hospital bed. From going to the bathroom, bathing, watching TV, eating and even exercising, the hospital staff can remove every reason why anyone ever needs to get out of bed. I say if you are able, and you have your doctor’s permission, get out of bed and go outside.
Don’t use your hospital stay as an excuse to live in your bed. I used to do this, but I’ve found I get better faster when I get out, regularly, for sun and fresh air. If you are like me, then not only will going out help you physically, it could also improve your attitude which could improve the other aspects of your hospital stay.

Video Explains Protein Function

What are proteins for? This video does a good job explaining them. While watching, don't blame me if you feel your brain growing with knowledge.

Sunday, September 5, 2010

Anatomical Position and a Few Medical Terms (Video)

Not my best vodeo I know, but it does explain Anatomical position and some basic medical terms.  I know I could have done a better job on this, but I wasn't feeling like doing all the editing.

Note, I didn't go over much lower extremity stuff, but I will if requested.  As alwayx, question or comments can be left by using the comment link below.  You can also sign my guestbook if you're feeling up to it.

Thursday, September 2, 2010

A Note to my Russian Federation Visitors

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I have noticed a number of Russian Federation visitors here at my blog.  I want to thank all of you for visiting, and for Elena who signed my guestbook.  I hope all of you are living well and send my best regards for the future.

Wednesday, September 1, 2010

5 Things to Know about Your Medications to Avoid In-hospital Errors

As a professional patient,I speak from the pulpit of experience when I say make learning about your medications a priority.

Insist that you and the doctor are clear on exactly what medications you’ll be given. Furthermore, you should be familiar with what your medication’s general purposes are, as well as the dangers associated with their improper administration.

Why do I make these recommendations? Because people (including medical professionals) make mistakes. The following story illustrates this fact.

While a patient at G.V. (Sonny) Montgomery VAMC this past weekend, I avoided a hazardous situation because I asked my nurse what pills she was giving me.

I knew from speaking with my doctor that I was prescribed Lasix at 60mg, 4 times a day intravenously. This is all the Lasix (Furosemide) I was to be given while in the hospital. However, among other pills, the nurse was handing me the same Lasix dosage in pill form. Now add that up and it’s 480 mg/day.

Lasix is a potassium losing diuretic that can cause people’s potassium level to drop which could cause a serious (even fatal) cardiac incident.

I refused the extra doses because I was aware of:

1. What medications I was taking
2. How much I was supposed to take
3. How It was to be administered
4. Why it is given
5. What could happen if I took too much

You have to be your own advocate. You have to be aware there are nurses out there who don’t think for themselves. That said, they seem to be drones who don’t pay attention to anything except how to do the least amount of work, and how long till quitting time.

Unfortunately, some nurses have a bad attitude. They think they‘re above the patient‘s reproach, because patients don’t know anything. The following story illustrates this nicely. It also happened during my latest hospitalization.

Many of my nurses always administer my Albumin piggy-backed with saline flush bag. They do this because they think it is easier to prime the tubing with saline(Albumin is really thick), and so the tubing flushes clean automatically with saline after the albumin empties.

The problem is, many times when they do this, I get all saline, and none of the Albumin. Saline (fluid) is THE LAST THING I need when I’m going for diuresis (fluid reduction)

I tried avoiding this error by suggesting we clamp off the saline tubing like other nurses do. To make a short story shorter, she said, “If patient’s know so much, what am I here for.” with quite a note of sarcasm.

I know getting the saline pumped into me wasn’t dangerous, so I didn’t push the issue and allowed her to do it the way she wanted.

Guess what happened? 30 minutes later the Albumin was still in the bottle on the IV pole. I called that nurse back to my room and let her know I was not one of those patients who doesn’t know what’s going on.

My point is, if you are able, you should involve yourself in your care. Don’t passively assume your nursing staff will make no errors. Simply knowing what, how, why, when and how much will go a long way toward reducing the risk of inpatient medication errors.

If you’d like to discuss this further, or have a related story to tell, use the comment link below this post. I’ll make it a point to post your thoughts on this site. Thanks.

Tuesday, August 24, 2010

Avoiding Pain Killer Addiction

I think avoiding pain killer addiction begins with education. People who are aware of, and respect the possibility of becoming addicted have a reduced chance of becoming so.

Unfortunately, in many cases education isn’t enough.

While in the hospital, and fully aware of possibly becoming addicted, I kept asking for my hydomorphone (and extremely powerful pain killer). Oh, I really liked this IV push. It seemed like I was glad I had the pain so I had an excuse to het another dose.

But then, in the back of my mind I knew I didn’t want to be hooked. Eventually I was discharged from the hospital; sent home to deal with my pain with a few bottles of two other pain killers.

You can help keep from becoming addicted by remembering why you began taking the medicine. Do a self-diagnostic. That is, do an internal check; like say, Robocop. Try to assess if you are really hurting. Ask yourself, “When do I hurt the most?” Then you can control when you take your pain medication, and can better decide when you can cut back.

Another idea for avoiding adiction is keeping an accurate check on your dose times.  Make them at obvious times, like the top and bottome, or left and right sides of the click(12 and 6, or 3 and 9).  Keeping up with when you should dose yourself will help you avoid overmedicating. 

Cutting back on your pain medicine as soon as possible is another way to keep from becoming addicted. This way, you are not stopping cold turkey before you are ready.

Another thing to remember is that many medications cause constipation and ceasing the use of those meds can result in some uncomfortable diarrhea. Your body has to get used to not having the drug.

Even if you don’t feel any pain, you might feel irritable when you stop taking pain medicine. Remember these feelings will pass. Don’t use them as an excuse to keep taking them.

Life with Protein Losing Enteropathy (PLE)

Let me tell you, I know first hand how low serum protein can effect a person. You see, protein plays an important role in fluid equilibrium. Think of protein as little grains of sand that soak up water. Protein doesn’t really soak up water, but through atom polarity on a molecular level, protein holds H2O close to it (within the cells). When a large percentage of a person’s protein molecules are missing, it upsets normal osmotic pressure of the cells, and water simply runs into the tissues between the cells. This is often called, “Third Spacing”.

I’ve had as much as 60 pounds of fluid (water) third spaced at a time. Let me tell you it really sucks!

How I dealt with it? Well, I had a tough time. I was unhappy with looking like a little fat guy. I had a hard time cleaning my self, and at one point the skin on my legs was stretched to the point of causing much pain. I had a hard time walking and could hardly bend my knees. I could barely pull my pants up from the floor, and I often had to lay with my feet and legs propped up in the air even during “fun” family events like Easter, the fourth of july and so on.

How I copped? I took it one day at a time. I cut down, way down on my salt intake. This didn’t help me as much as my doctors felt it should have.

I put my shoes on in the morning because this is when I found my fluid there to be at its lowest.
I used lotion on my legs to help allow my skin to strech.

I complained… that is, I vented my frustrations to my wife which helped me face my emotions about my condition. I didn’t want to go anywhere because I looked so bad.
I tried Beneprotein soy powder as a protein supplement. This helped my loose stools, but did little for my edema.

My doctor agreed I was in a bad way and began me on intravenous Immunoglobuluns (ivig), IV albumin, and Iv lasix. This helped some. It helped boost my immune system, helped get some of the fluid off me, and raised my albumin level if only very briefly. I was placed on a drug called Methotrexate. I was prescribed a subcutaneous injection every week at .4 mg. After the 2nd week, my doctor said to give myself an additional .4 mg which I did. That was on a Friday. By Monday, I was caughing and hacking because I suddenly developed a pneumonia like condition called methotrexate lung. The lungs fill with some weird nodules, and got really sick.

The funny thing is, about 3 weeks after that first methotrexate injection, my protein levels shot up to just about normal. This lasted for about 3 weeks and I gradually began packing on the edema again as my protein levels started falling.

I subsequently took it upon myself to try a single dose one desperate afternoon just to see what would happen. 3 weeks later my protein again shot up. But I began to develop infection like symptoms in my chest so I told my doctor what I did. Let me tell you by the time she got done with me I was promising not to do that again.

I didn’t end up with methotrexate lung again, but I did have me a scare.
Then I went to the mayo clinic. Iwas eventually diagnosed with Menetrier’s disease and was advised to try octreotide. My doctor prescribed it eventually, and a few weeks after my protein began to rise. Albumin went from less than 1 to 2.0.

My total protein went from 1.9 to 4.8.

These numbers may sound like small changes, but believe me they make a world of difference in the edema department.

The skin on my legs was so tight at one time that a shard of glass falling from counter level cut my leg with a very light glancing contact. My leg then dripped water for over a month. Every pair of pants I put on soon had a soaked leg from the shin down..

Well, this is good for now. Any questions or any stories of your own, leave them in the comments please.

Monday, August 23, 2010

How I Cope with Hypoproteinemia

Some people might wonder what the big deal with protein is. To them, I say a lot!

Aside from edema, which I describe here in this blog, other issues have risen due to medication side effects.

Side effects I have suffered from are, weight gain, plural edema (fluid within the outer lining of the lungs), a positive AFB (acidfast bacillus) in my spinal fluid) indicating a strong possibility of having tuberculosis meningitis, legal blindness and some I’m not remembering at this time.

These medication induced problems only compound problems brought on by my form of this idiopathic Protein losing neuropathy. For example, I had a clot in my spleen and it had to come out. I had some neuropathic pain in my toes along with necrosis and my toes had to be taken off on my left foot. I had to have a vain replaced (bypass) in my leg from my crotch to my ankle.

Because of this disease, this condition, I had hernias that needed repair (surgery) and a multitude of invasive tests including several of each of the following EGDs (scope down the throat), colonoscopy (scope up the butt), exploratory abdominal surgery, a Die squirted ON THE BRAIN scan test (this sucked), and many I don’t remember at this point.

How have I coped?

I have held on tightly to the aspects of life that I enjoy. I don’t sweat the small stuff as they say and I revel in life’s many wonderful mysteries.

I re-engaged myself into hobbies that I, at one time, set aside for more pressing endeavors and I stopped taking my relationships with others for granted.

I watch a lot of America’s Funniest Videos and find as many reasons to laugh as I can. But most of all, I pray a lot. I pray a lot and I live in the hope that better days are in front of me.

I do these things, and I persevere with a smile.

Friday, August 20, 2010

My Personal Advice For Coping with Pain

Yes, this protein conditiion causes problems that are painful.  I don't know how many nights I lay awake clutching my foot with the amputated toes.

In many cases, your pain will be temporary, as was mine.  Hang in there, it'll be alright.

Watch my Video.

Acupuncture Information Video

Interested in acupuncture as a treatment? Check out what it is, and how it works in this video.

Wednesday, August 18, 2010

Check out the following foods and their protein levels.  No wonder I like fish so much!
Naturally Ocurring  High Protein Foods
Food                            g protein  /  g carbs

EGGS ( 1 medium size ) 6 grams 0 g
MILK ( 1 pint or 568ml) 19 grams 24 g
MILK ( 1 glass ) 6.3 grams 8 g
SOYA MILK Plain (200 ml) 6 grams 1.6 g
TOFU (100 g) 8 grams 0.8 g
LOW-FAT YOGHURT (plain) 150g 8 grams 10 g
LOW-FAT YOGHURT (fruit) 150g 6 grams 27 g
FISH (cod fillets 100g or 3.5 ounces) 21 grams 0 g
CHEESE cheddar 100g (3.5 ounces) 25 grams 0.1 g
ROAST BEEF ( 100g or 3.5 ounces ) 28 grams 0 g
ROAST CHICKEN 100g ( 3.5 ounces) 25 grams 0 g
OTHER MEATS AVERAGE (100g or 3.5 ounces) 25 grams 0 g
---------------------------------
Processed Food Protein/ carb levels
Sausages (100g or 3.5 ounces) 12 grams 13 g
Bacon (100g or 3.5 ounces) 25 grams 0 g
Ham (100g or 3.5 ounces) 18 grams 0 g
Beefburgers - freezer type average(100g) 20 grams 6 g
Corned Beef (100g or 3.5 ounces) 26 grams 0 g
luncheon Meat (100g or 3.5 ounces) 13 grams 5.5 g
Meat Paste (100g or 3.5 ounces) 15 grams 3 g
----------------------
Protein Supplements

Met-RX Big 100 bars 27 g Metamyosyn 26 g
Myoplex Protein 42g 24g
Precision Protein 20 g 4 g
EAS Products 21 g 0 g
Whey Protein 23 g 3 g
IST Pure Glutamine 98% -

Tuesday, August 10, 2010

Can Cravings Address Nutritional Needs of Chronically ill?

By Daniel Taverne

I believe my food cravings are trying to tell me things. For example, I get serious cravings for pickles from time to time, and no I’m not pregnant. What could this pickle craving be telling me?

I also get cravings for cabbage, spinach, broccoli, cauliflower, assorted greens (mustard, turnip and collard).
I often crave fresh tomatoes, peaches, strawberries, blueberries and foods that contain a sour flavor.  Foods I don’t crave are meats like pork and beef. Yes, all my cravings are fruits and vegetables.

What could this mean?

Our bodies are designed in a way that gives us clues as to what this could mean. One such clue is our teeth. By looking at them we can see the vast majority of them are squared off; not pointy, as are the teeth of carnivores.

As we look at the “traditional” American diet, meat and potatoes, and the number one cause of death in America, heart disease, we might conclude that meat isn’t the best choice for humans to eat.

In an article titled, “Top Ten Cravings People Experience During Pregnancy",   Dacy Reimer asserts, “Pregnancy changes the chemistry of your body in strange and miraculous ways. Since you're eating for two now, you might get hit with some rather odd food cravings…” It’s this notion of changed body chemistry that causes me to make an assertion of my own.

I would like to assert that people, like me, who have dietary deficiencies experience cravings as well; cravings that if acted upon can address some of those shortcomings.  How pickles might help me, I don’t know, but when I get these cravings I try to obey them.

What do you think about this issue?  Do you have cravings and how do you think they might address a nutritional need of your own?  Leave a comment or sign my gurestbook to let me know how you feel.

Monday, August 9, 2010

Mild Exercise Reduces Poor Effects of Hospital Beds


Article available online at: http://www.therapytimes.com/092809Physical
Critical care experts at Johns Hopkins in Baltimore are reporting initial success in boosting recovery and combating muscle wasting among critically ill, mostly bed-bound patients using any one of a trio of mild physical therapy exercises during their stays in the intensive care unit (ICU).

“ICU-related muscle weakness is the number one factor in prolonging a patient’s recovery and delaying their return to a normal life, including work and recreational activities,” says critical care specialist Dale Needham, MD, PhD, the senior researcher involved in producing the report, to be published in the journal Critical Care Medicine online Sept. 21.

“Our ICU patients are telling us that they want to be awake and moving. Gone are the days when we should only think of critically ill patients on complete bed rest,” says Needham, whose 2008 publication in the Journal of the American Medical Association reported that a majority of ICU patients experienced prolonged fatigue and delayed recovery after bed rest. For the rest of the article click here.

Click here for a video I made of 3 exercises you might use to help you get back to normal.

VIDEO - 3 Hospital Bed Exercises for Hospitalized and Bed-Bound Patients - VIDEO

These exercises can be done right in the bed!  The diagnals are done  while supine (laying on back).

When I get hospitalized, it's eazy for me to lay around getting weak.  I decided this isn't what I want so I started doing some simple exercises to maintain my strength.  In this video, I share a few exercises you might do, when you are hospitalized.   Check with your doctor or nurse to make sure you are okay to do them.

Also, this video shows a very good exercise for morbidly obese people to perform as a start to losing weight.

Thursday, August 5, 2010

Do you know your Edema?

I have noticed there are different levels of edema.

I know about the “+” indicator of pitting edema, and I’m not referring to that. I am talking the anasarca.

Anasarca is generalized edema, meaning it is present throughout the body; not just dependant areas.

I have noted over the years I’ve been dealing with this that even my muscle fibers seem to become edemic. How do I know this?

When laying in the hospital bed one day, I had my right forearm resting in my right hand. When I tpositioned to sit up, I noticed the huge depression in my forearm where my hand had been.

Another observation I’ve made is that doctors will mistakenly think I have ascites (fluid within the abdominal space). I actually had one doctor try to aspirate fluid from within my abdomen with a huge syringe. It didn’t work!

My fluid was third spaced within the skin and was unable ot be drawn out. I would leak however whenever I was given a subcutaneous injection in that area.

So, the point of this little post is to get you to pay attention to your edema. What are its characteristics? Is it only in your lower extremeties, or is it also in your lower back area?

Do you notice times when your fluid level is worse? If so, what are tohose triggers.

All these questions and their answers may be important to your doctor, so be honest and pay attention.

Wednesday, August 4, 2010

Stuffed Chili (Pepper) Recipe

Cheese is loaded with protein so I thought I'd show you one of my favorite recipes.  Here's a video I made myself.

Monday, July 19, 2010

Fish: A Great Source of Protein - Cooking Idea Video

If you want some healthy ways to cook fish, listen to some people at a fish market in England.  Watching this makes me hungry.

Sunday, July 18, 2010

What is Hypoproteinemia?

Hypoproteinemia, simply put is low blood protein levels.  There are 2 main protein types: Albumin and globulin.  Abnormal blood test results  related to these are usually delineated with a corresponding 'hyper' or 'hypo' (high and low- respectively). 

For example, Low Albumin (a plasma protein) is called, Hypoalbumemia.  This condition can also be loosely referred to as hypoproteinemia. 

"Normal" Total serum Protein level (in humans) should be between  6.0 and 8.3 gm/dl (grams per deciliter).
Normal albumin level is from 3.4 - 5.4 grams per deciliter (g/dL).

The difficulties arising when these numbers depart from normal are quite astonishing.  That said there are many conditions that can cause departures.

Higher-than-normal levels may be due to:

**ChronicChronic inflammation or infection, including HIV and hepatitis B or C
**Multiple myelomaMultiple myeloma
**Waldenstrom's diseaseWaldenstrom's disease

Lower-than-normal levels may be due to:
**AgammaglobulinemiaAgammaglobulinemia
**Bleeding (hemorrhage)
**BurnsBurns (extensive)
**GlomerulonephritisGlomerulonephritis
**Liver diseaseLiver disease
**MalabsorptionMalabsorption
**Malnutrition
**Nephrotic syndrome
**Protein-losing enteropathy

Thursday, July 15, 2010

Exercising with hypoproteinemia

I have noticed that when my protein is very low, I don’t have the energy required for maintaining an exercise program. I think the best idea at times like tose is to keep from lying around doing nothing. Stagnation will conspire to atrophy your muscles.

There is a dilemma however. If you have low protein, will muscles atrophy regardless of activity?

I posed this question to a doctor. He told me the type of protein I’m deficient in is not the same protein used in maintaining muscle structure. I’m low in Albumin (a plasma protein).

I say get some exercise. You are still alive aren’t you? If you are laying around doing nothing, only you can change it. Do what you can…do what you are able. it’s that simple.
From SOLAE.COM - Visit them for a wealth of information and wonderful products.


Soy Health Benefits
Soy protein is a high-quality, complete protein with a variety of health benefits. Among soy's most notable benefits are its effects on lowering blood cholesterol levels. In fact, more than ten years ago, the  U.S. Food and Drug Administration (FDA) issued a health claim  for soy on the basis of its heart health benefits. Since then, government agencies in ten other countries have followed suit. Additionally, soy is the only widely available plant source of protein that is considered a complete form of protein; comparable in protein quality to meat, milk and eggs.

Heart Health
Soy protein can play an important part in your daily low cholesterol, low saturated fat diet by helping to reduce cholesterol and the risk of heart disease.
View more information on this topic

Soy: A Complete Protein
Soy protein is a high-quality, complete protein that can help you meet your protein needs.
 View more information on this topic.

Weight Management
Soy protein can play a role in weight management by promoting satiety.
-Download A Weight Management Brochure to learn how soy can help you in your weight management efforts- (PDF) CLICK HERE FOR SOLAE DOWNLOAD
Child Nutrition
Soy foods can be a major source of protein for children because they contain all essential amino acids and many are fortified with vitamins and minerals.
-Download a Child Nutrition Brochure and learn how soy can play an important role in children's diets- (PDF)   CLICK HERE FOR DOWNLOAD

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