Amazing Update: Reclast is possible source of Protein Improvement

I expressed my apprehension about being infused with the drug, Reclast.  This drug, taken to increase bone density, also has some complicating side-effects, one of which is osteonecrosis.

If I have to have a tooth extracted after taking this infusion, I might experience my jaw not healing... and possible jaw-bone death!

So, I was extremely hesitant to take this drug and consciously or unconsciously, avoided this for as long as possible.    I finally 'bit the bullet' and got the drug a few weeks ago.

Approximately 3 days later, I noticed my wedding rign was much looser.  It was loose to the point that it fell off into the bottom of the deep-freezer while reaching for something.

So, I weighed myself.  My weight decreased 15 pounds from what it was at the doctor's office.

I also noticed an energy increase.

I called my doctor and informed her of the new changes.  She said that it was "interesting" because Reclast has some T-Cell effects similar to Humera; which seemed to help me for a time.  I had to discontinue Humera because of some negative side effects.

 The bottom line is that for my idiopathic Protein losing enteropathy, one medicine, Reclast, may be helping with two problems.  

I'll let you know how long these positive effects last.

Update - Doing Pretty Well - Protein Stable

I've been doing surprisingly well over the past several months with less severe edema and  low energy.  

I've been able to begin a more serious exercise regimen and have seen an increase in muscle tone as well as an increase in muscle strength and endurance.

At my last doctor appointment  my Albumin and total serum protein were still lower than normal, but higher than they have been in the not too distant past.  If my memory serves me correctly, my albumin was around 1.9 and my total protein was about 3.2.

My Rheumatologist  attributes the stability of my protein  to the drug, Spironolactone, and increased my dose from 25mg to 37.5mg.   I've been taking this new dose for about 2 months now.


I often wonder if my desire to exercise, and my subsequent actions, are related to my protein level.

What psychological (inner speech) is leading me to exercise at this point?

Consciously, I tell myself I need to exercise.  I thought and told myself,  I was looking bad.  I told myself many times, "You need to start working out again."  

So, is it because I have the energy that I began exercising?  Or, is it because I like exercising, or think I really need it.  In other words, If my protein level drops will I begin to stop my exercise program despite my desire to continue?  I don't know if I will have a choice if my protein falls again.

For now, I'm  enjoying my wellness and taking advantage of this up-tick in energy.

Update - Still Kickin' - Protein still Low But Stable

I know it has been a while since I checked in.  Sorry about that.  I have been blogging; getting a little political, and it has taken up much of my time.

That said, I'm taking tome out from political blogging to write this post informing you of my progress and a medication change that was made.

I'm taking Spironalactone (not sure on the spelling I don't have the bottle in front of me).  The medication's stated use is 'a water pill'.  It's adiuretic.  I suppose it does help me to urinate, but the major impact of this drug seems to be how it helped to increase my protein.

Since beginning this drug, I've been able to live my life without frequent hospitalizations.

I foret the dosage, but I'd been taking 1 pill once per day for a long time.  At my doctor appointment, I was told to try increasing my Spironalactone dose by 1/2 a pill.

With just one pill, my albumin has risen from .8 to 19.  My total protein went from 1.1 to about 3.2.
We hope the increased dose will improve my condition even more.

This sounds really good.  I do have my reservations though.  Is it really the spironalactone that's helping me?  I'm not sure.

I started exercising lately.  I've been working my staff most of the summer, but over the past week I've been doing puss-ups and pull-ups.  I cut the grass one day last week and will probably cut it tomorrow, as well.

The point is, when I get enough sleep, I seem to have more energy to do productive things.

Thanks for reading my posts.  God Bless.

No Downside to Exercise

Exercise.  You have to make yourself exercise so you can be stronger and so you will develop stamina.


I know what it's like to want a break, but there are times when we cant leave poor health alone.


Does exercise have to be boring drudgery?  I say, no it does not.


Riding a bicycle, playing in the yard with the dog, gardening, yard work, and hiking are a few things you might try.


Sometimes you can combine activities to create even more interest for yourself.  You could ride your bike to the beach, then hike a little, or go swimming.


You could  walk your kids or grand kids to the park and take pictures.  


If you are wheelchair bound, you can do stuff to keep your body and mind active.


Have you ever thought of painting?   How about writing poetry.  Maybe you could learn a few exercises using items around your home as weights.


You could, for example, use a broom as a bar-bell.  With 2 hands lift the broom over head and down.  Repeat 10 to 20 times.  You could move it side to side, and push it out in front of you parallel to the floor... then bring it back to your chest.


You could use liquid washing powder and 'curl' it.  When we say curl, we mean you'll hold your bottle down at your upper leg with your arm strait... and you'll lift it, bending at your elbow, holding your elbow in a fixed location at your side.  You'll then lower the bottle back down.  You could press it up over head a few times and remember to switch hands and exercise the other arm.


Exercise is good for the mind and body.  While walking or riding your bike, you 'll have time to contemplate problems at home.  You'll have time to organize your thoughts and you gain the energy to deal with issues at home.


In most cases, there is no downside to exercise.  I highly recommend it.

Chronic Illness - I Refuse to Stop fighting

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.

Coping Day to Day with Chronic Illness

I don’t believe anyone can tell you how to cope with your chronic illness. I know I can’t.

I won't.

 What I will do is explain how I cope with mine, and offer some advice.


Let’s be frank. Nobody knows the extent of your physical or emotional pain. Nobody knows how it makes you feel when you are dependent upon others to meet many of your day to day needs. You are not a child after all! Yet, sadly, some of us feel relegated to the status of a dependent child. 

That said, nobody knows your particular emotional state better than you. And,  you are entitled to your feelings. You have every right to be angry, frustrated and insulted when people say, “I know how you feel”, or “stop feeling sorry for yourself.”


Having said this, and keeping in mind that I am afflicted with a chronic illness, it’s how we choose to deal with our feelings that will either help us, or make the situation worse.  It's my firm belief, therefore,  that no matter what our situations are, we can change our outlook by changing our thinking.   

 I chose, for example, to pour my energy into positive activities like writing and engaging in my favorite hobby,  rather than waste my time dwelling on my pain. I have found the more attention I pay to these activities, the less pain I feel.  Conversely, the more I allow my thoughts to center on my pain, the more negative my attitude becomes.


When I volunteered with a physical therapy clinic, I even experienced a spiritually rewarding warmth that I had never felt elsewhere. I would not have experienced this if I had not become afflicted.


So, while I can’t ell you what to do to cope, I can suggest that you get your mind off your problems by immersing yourself in something positive that you enjoy.


If you successfully cope, what are your strategies? Leave a comment below, or in the guestbook.


Thanks.

Deemed Disabled? Now What?

You've been Deemed Disabled, Now What?


Everyone in my life has told me I am disabled.  The government agrees with them and sends me a check every month.


As a result of this determination, and since I can no longer work, drive a car, or do many of the things that previously made me feel good about myself, I have a lot of time on my hands.

I'm sure you've heard the saying, the idle mind (or hands) is the devil's playground, right?  Well, I can attest to this point, but I won't.


I wan't to talk about what I have actually done to fill the new-found void in my life.


I went and got myself a hobby.  I thought about some of the things I've always wanted to do, but never had the time, and I picked one.


I became a ham (amateur) radio opeerator.


How has this helped me?


When I worked as a Brick Mason, my co-workers were my contact (my connection)  with the world outside my home.   That said, the community of hams have since replaced the void that I felt after  I could no longer work.


Amateur radio is more than talking to people over the radio  In fact,  it is club/community events as well that I enjoy immensely.


I'm not necessarily advocating that you should become a ham.  I'm merely suggesting  that you  search your own mind and find something into which you can  immeerse yourself.  Write poetry, build models, write a book, join a book club, play cards,  scrapbook, learn to play an instrument, try out new recipes, the list of possibilities is as varied as people themselves.


As in my situation, the added activity can take your mind off your problems;  if only for moments at a time.


Being disabled doesn't mean your life has ended,  means you might actually be enabled with time to spend on new endeavors.  Taking advantage of  the opportunities that present themselves will keep your mind and hands active.

Update - Albumin & Total Serum Protein is Up! Why?

Considering the fact that I was just in the hospital about 50 days ago, I'm doing remarkably well.

Prior to that hospitalization, my doctor and I decided I'd try a medicine that acted 'like' spironalactone, but didn't have the hypotesterone side effects.

A few weeks after that change, my protein began slipping to a low of .8 for Albumin and 1.1 for total serum protein.

I had anasarca, weighing 194 pounds upon admission to the hospital for diuresis, and was discharged 5 days later weighing 173 pounds.

Sinse that discharge, I've maintained a low edema-weight of about 175 to 180, and I attribute this stability to the resumption of the spironalactone.... and so does my doctor.

Now, If you are interested in my story; my trials and tribulations, its all in this blog.  Use the link list in the sidebar to find a topic.  After clicking, scroll down through titles till you see one that interests you.

I have many articles here related to my contition, and many still related to chronic illness and the medical community as a whole.

Relationships & Chronic illness

If you are like me, you have people in your life who have to go out of their way to help you.

I can't drive a car, for instance, so my wife has to take me anywhere I want to go.

I can't tell you how many times I've wanted to go somewhere but didn't want to have to ask my wife for a ride.

This situation  relegate my relationship with her  to that of a child.  She's the parent, and I'm the child.

Yes, since I've been diagnosed with ideopathic protein losing enteropathy, my relationship with my wife has changed.

I've had sleepless nights due to pain, and while my wife snored away. I was sitting up clutching my foot.

So not to wake her, I'd get out of bed and go get on the couch.  This is how we started us sleeping in separate rooms.

Relationships can (and do) change.  In some ways it's better, and in some ways it aint.

You have to realize your illness is affecting every loved one you come in contact with.  How you approach your illness is usually how others approach you.

Be positive, smile, talk to your loved ones.  Let them know you love and appreciate them.  You may not have much time left, so mend those broken relationships.

High Protein brownie Recipe

If you have hypoproteinemia like me, you might want to try this recipe.


The brownies in this recipe are high in protein, and low in carbohydrates.


They guy uses the recipe in terms of muscle  building, but this could potentially be a positive for folks with low protein.

Update: A couple weeks after my last hospitalization

You can see from the post below this one that I went to the hospital a few weeks ago to get the Albumin replacement.


Since my albumin was less than 1, I stayed for several days getting transfusions.  I also received IV Lasix immediately following each albumin dose.


My current weight is 173.2 pounds.  This is very good since my weight has not increased since I've been home.


This means that my edema has not been increasing.


I have noticed some fluctuation in my energy level, and at times seem to feel bloated.


Upon getting exercise (cutting the grass with a push mower) Sunday,  I have felt energized.


I have been able to do a lot of stuff today (Monday).


Do you think you need albumin replacement?  Tell me about your symptoms.  If you need a sympathetic ear to talk to, sign my guestbook or leave a comment and spill your guts.


Take care.  Remember, God loves you and you will be blessed if you follow Him.

Results of Latest Albumin Replacement Therapy

As indicated in my last blog entry, I did go to the hospital seeking treatment for severe anasarca (generalized edema over most of my body) due to my albumin being very low.

Since I have a great relationship with my doctor, she notified the VA hospital's red medicine service that I needed to come in.

Fortunately, hey arranged a direct admission.

I arrived at the emergency room at about 7:30pm last tuesday, March 6, but I didn't get my room until around 2:00am.

I received  my first infusions wednesday morning at around 5:00am.

As noted in my previous post, I recieved 3 albumin infusions every 24 hours; each followed by an IV push of Lasix. 

When I was admitted into the hospital, my serum protein was 1.9 and my albumin was .9. 

My weight  upon admission was 195 lbs.

When I was discharged monday morning March 12, my weight was 172 lbs!

In 5 days, I lost about 23 pounds of edemic fluid!

As you might guess, I felt a whole lot better.  I can't tell you just how good I felt to be thinner again.

I wish I could stay this way, but I know its only a matter of time till I start packing on the fluid again.
If you want to know the dosage of the Albumin and Lasix I was taking, you can find that information on this blog. 

Give it a look.  If you have any questions, use the guestbook or leave a comment.

Health Update March 4, 2012

My protein losing enteropathy is rearing its ugly head again.


My protein level has undoubtedly fallen since my last post.  In fact, at my last doctor visit my serium protein had fallen form 3.9 to 2.4 while my albumin had measured 1.3.


These levels were taken about a month ago, and I am doing far worse now.


I don't "need" to weigh myself to know my edema and my anasarca has returned.


This time, the edema seems to have concentrated mostly on my torso area.  It is almost as if I have gained about 15 pounds of fat on my abdomen, but I know it is mostly fluid.


The backs of my legs are also highly edemic.


I awoke 2 mornings ago shocked to find extreme edema in the torso area.  I had pitting edema on my ribcage, and still do upon the entire torso.


I plan to go to the hospital this week.


My treatment will be as indicated in previous posts.  


I'll get albunin replacement 3 times a day for about a week.  Each dose of IV albunin will be followed by an intravenous dose of Lasixx (60 to 80 ml).


Look through this blog for info about this condition.  If you came to this site because you want to know about hypoproteinemia and the possible treatments, I have laid out my entire fight with this condition here.


I hope  and pray for your health, or that of your loved ones, improves.

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

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

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?

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.