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Our perspective about IgAN

IgAN is a lifetime disease.  It's non-reversible and the best that can be hoped for is to slow the progression.  The path seems to be

      1) disease progression,
      2) dialysis, and
      3) transplant. 

The timeline seems to be anywhere from two years to as long as 40 years before dialysis, though the upper end may be even longer.  People live full lives with only 25 percent of kidney function remaining, so losing as much as 75 percent of kidney function can result in no noticeable symptoms.

From everything I've read there doesn't seem to be any proven pharmacological remedy for IgAN, though some are being tried.  There are a number of natural aids that can be used to reduce the progression of the disease and the symptoms that accompany it.  These include diet, fish oil, and attitude.

Modifying the diet (especially the protein intake) is often prescribed.  Proteinuria is a common symptom of IgAN so reducing the intake is a natural next step.  Nimfa has reduced her protein to no more than four ounces of meat (fish, fowl, or beef) daily based on recommendations by the doctor and a dietician familiar with renal diets.  She seems to have modified her diet without too much trouble though I think it would've been quite harder for me.  The effects of too much protein intake is readily apparent in the symptom of bubbly urine.  My completely un-medical opinion is that if the kidneys are working so hard to get rid of the protein, and yet can't, the added strain of the effort just adds to the damage.  See a dietician.

If high blood pressure is present with the disease than modifying the diet to reduce high blood pressure has definite gains.  High blood pressure is extremely important to keep under control.  Nimfa's was about 180 over 110 when it was first identified which really freaked out the health care professionals.  I'm happy to say that they took immediate steps to control it and it is now very much under control.  Additionally, one of the medicines she's taken is lisinopril which is also an ACE inhibitor which possibly has added benefits in reducing the progression of the disease. Ask your doctor and/or a dietician.

The Mayo clinic completed a study in November 1994 which indicates that taking 12 grams of fish oil daily may reduce the progression of the disease.  From what I've been able to find, this is the only study that has been completed on fish oil; it's certainly the only one anyone is willing to quote.  Many health care professionals give a lot of credence to this study while others are withholding judgment.  In contrast, one study received some press about the value of tonsillectomies as a preventive treatment for IgAN, but this study doesn't command the same respect as the Mayo Clinic study.  Still, I've been unable to identify any negative side effects, so why not.  Ask your doctor.
Your attitude towards yourself, life and the disease are probably the most crucial element to your quality of life.  This disease is an inconvenience but it doesn't need to kill you.  An old college professor of mine often said "If you feed it, it will grow."  This has so many levels of wisdom but from the perspective of IgAN, if you think it's going to make you miserable, it will.    Or it could provide you with some opportunities to grow, to learn, to love - opportunities that you wouldn't have had otherwise.  Ask your God.

Bone disease is common in people with long term kidney disease, more as an aftereffect rather than a direct symptom.  Apparently this is because the ability of the kidney's to break down phosphorus reduces over time; phosphorus levels significantly increase which leads to a loss of calcium which makes them brittle and more susceptible to breaking.  This process may last about ten years before the damage is done.  There are two ways I know of to reduce the effects of this problem:  1) reduce phosphorus from your diet and/or 2) take a phosphorus binder (Nimfa takes 667 mg tablets of PhosLo).  Ask your doctor.

Nephrologists seem to have differing opinions on education and dialysis.  Apparently, sometimes doctors don't provide all the information up front but only answer the questions that are posed.  This is fine if you know which questions to ask, but we sure didn't - at least not at first - and there is a tremendous amount of information to digest.

Regarding dialysis, some health care professionals seem to think a patient needs to get sick before going onto dialysis so that they  "can appreciate it more."  From what I've been able to gather a paradigm shift is occurring and a growing number of nephrologists are trying to educate patients first and make the transition to dialysis a planned experience, not a medical crisis.  Also, it is no longer unheard of for a patient to have a transplant before going onto dialysis at all. 

Still, the role of the patient plays a critical part of the entire process.  As with any disease, patients don't religiously conform to treatment protocols and the disease becomes complicated due to their own negligence.  The concept of dialysis is scary to some and instead of facing the fear, they may choose instead to ignore it until the consequences are too debilitating to ignore. 
                                            - Darril R. Gibson

A little about IgAN


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