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.

My PLE Hard times

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.

Thanks,

Daniel

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

Observations Related to Prolonged Protein Increase

(Picture - a reminder: When flash flooding is occuring, turn around, don't drown)

Keep in mind here that my weight without edema is approx 127lbs. When I was healty however, my weight was in the 170's... that was back in about 2002.

For one reason or another, I've had moments (peoiods of time lasting weeks) when my protein would "spike". That is, my protein would suddenly albeit, enigmatically rise to near normal.

My doctor had discussed possible causes of the spikes, and had even tested some of your theories.

One such theory is the reason for this post. You see, my doctor, Suzanne Sanders of G.V. Sonny Montgomery Veterans Medical Center in Jackson, MS had suspected that some antibiotics were responsible for my protein spikes. When we tested this hypothesis with the administration of IV antibiotics while hospitalized, our hypothesis was not supported.

This past month I was admitted to the hospital with anasarca. My weight was 165lbs. I had pitting edema all the way up to my cranium.
I went in the hospital Jan 22, and came out Jan 27. I went from the weight of 165 pounds to 135 pounds. I was treated with albumin infusions as well as lasix IV push. I was getting 50mg Albumin infused over 1 hour q8 hours. Each albumin infusion was followed up with an IV push of 60 ml of lasix given 1/2 hour after each albumin. We chose this aggressive strategy of direusis since my last hospitalization yeilded little results with the albuming and only 40ml lasix given q 12 hrs.

Okay, back to the antibiotic angle: While in the hospital, the doctors found my white blood cell sount rose to 17. After investigating they determined it was probably an absessed tooth causing it so they prescribed an oral antibiotic, clendamyacin (sorry if I spelled it wrong).

I had 2 weeks worth of it. Today is Feb 9, and I'm still in the 130 pound range.

My oral lasix is still working very well. Usually, by now my weight would be creeping back up as my lasix slowly diminishes in effectiveness.

The reason I'm talking about my weight a lot is because that's how I (roughly) guage what my protein level is without a blood test. When my albumin is less than 1, and my total protein is 2 or less my edema (and my weight) increases dramatically.

Hence, when my weight stays low for an extended period of time, I can pretty well be sure my protein is in a more acceptable range. Anyway, I ran out of the clendamyacin yesterday. I have a prescription for another antibiotic i'm going to be taking till it is gone, then we'll see what my protein level does.

***25 Feb 2010:  147.6 pounds at 10:00 pm  I ate several pickles today.  I'm adding this at 1:30 am Friday morning.  I seem to have been urinating a lot tonight.  I think that's a good thing.  I don't want to retain that water (third spaced) it really sucks.

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.

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.

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.