Fear of Bad Medication Side effects is Real

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


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


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


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


Should I, or shouldn’t I?


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


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


What to do… what to do?


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


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


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


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

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

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


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


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

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


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


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


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


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

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


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


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


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


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


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


Regards;


Daniel Taverne

Reported Gout Remedy

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


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


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


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


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


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

Tea Party Inclusion cards Counter Left's Lies

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

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

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


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


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

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


Here's the Card:

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

Update - Spironolactone may be Helping to Retain Albumin

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


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


Why is this a good number?


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

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

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

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

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

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

Dangers situations Associated with Poorly Managed Pain

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


Let me suggest this situation can cause unintended risks.


Here are two of my own examples:


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


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

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


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


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


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


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


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


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


Be ready to talk to the doctor about your pain.


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


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