Questions and Topics to discuss with your doctor.
Making your relationship with your doctor more of a two way street often ends up with both doctor and patient being more comfortable with each other.
Most doctors respect a well informed patient, especially those who have been diagnosed with very serious conditions like IgA Nephropathy. Doctors who don’t like informed patients are a problem.
The topics here are meant to be a very general lay persons guide, not nearly as detailed or specific as one will expect a doctor to cover.
A few questions you can ask yourself is a good way to start, you’ll be ready for your talk with your doctor.
Do you have foamy urine? If yes that means lots of protein is leaking through your kidneys into your urine, not good but there is a large range of proteinuria and there are simple dip stick tests to rank it.
Is your urine tea colored? If yes this indicates blood is leaking through your kidneys into your urine, also not good, but there is a wide range of this hematuria and there are simple dip stick tests to rank it.
Do you have any back pain below your rib cage and to one side? This can be kidney pain.
Is your blood pressure normal. Do you feet or ankles swell at the end of the day.
Do you engage in vigorous physical work or exercise? Or have you been banged up and bruised recently? Your urine and blood chemistry can show signs similar to kidney problems due to a lot of muscle damage, aka very sore muscles following workouts.
Are you taking any sort of health supplements? Protein drinks, creatinine, ??? You might be able to overload your system and skew your test results. So be aware and don’t spoof your lab tests by going to the gym or running ten miles the day before.
Have you recently had a bad sore throat or tonsillitis or mouth/tooth infections… or some chronic ear, nose, mouth, throat infection… a sure fire way to boost your circulating IgA.
Is there anyone in your family who has been diagnosed with kidney disease, high blood pressure, high cholesterol, these are all commonly coincident with IgAN. Many people with high blood pressure have or had un-diagnosed kidney disease.
These next “questions” for your doctor are not necessarily just questions but rather topics of conversation you might make use of. Take notes if you can to keep your own medical history.
There is a first step in this and that is to determine whether your doctor is a “general practitioner” or a kidney specialist, a nephrologist.
For your General Practicioner doctor(s)
If you have NOT had a kidney biopsy.
If my condition and symptoms are diagnosed as being IgA Nephropathy what are the symptoms that lead to this diagnosis? High blood pressure? Lab results showing high protein in urine, blood in urine, creatinine. Have you provided a 24 hour urine sample for more accurate protein loss and creatinine clearance. Blood test results showing out of normal range creatinine, BUN, high cholesterol, ???
Based on my lab tests what is the level of remaining kidney function that you have… more than 50% is good, less than 50% is very serious, below 20% is dire.
Do you think I should have a kidney biopsy to confirm the IgAN diagnosis? Mostly the answer to this question is yes, but there may be extenuating circumstances.
If you have had a kidney biopsy with a definitive pathologist report diagnosing IgAN. Likely at this time you now have a kidney specialist doctor called a nephrologist.
All of the above plus. What does the pathologist report show? How many “crescents” were seen the fewer the better for you, the more the better for a safe diagnosis. Other pathology questions require much more study.
What is your prognosis? Slow IgAN to rapidly progressive IgAN and “End Stage Igan” requiring dialysis and transplant.
If you have slowly progressing IgAN, and you surely can’t know this with less than a few blood and urinalysis over some months. But if it is slow then you can relax and not worry too much. But the more you understand your disease and your health the better.
Your symptoms and prognosis will define a treatment plan.
The more you study up and can talk intelligently with your doctor the better treatment you will receive.
Low grade slow disease may not warrant any treatment for years or even your whole life.
Be aware. Watch for symptoms of worsening like more frequent bouts of foamy or tea colored urine especially when you have a sore throat or a cold or other oral infections.
If you become pregnant your pregnancy is going to put an extra strain on your kidneys so you need to become much more aware of your IgAN status. A family or personal history of pre-eclampsia, kidney problems, in pregnancy is a serious issue!
If your urine goes foamy or becomes tea colored when you have a sore throat that is a sign of more active IgAN.
Low dose aspirin that is good for your heart is also good for people with IgAN. It helps reduce all inflammatory disease processes, IgAN is inflammation of your delicate and vital kidney membranes.
Zinc supplements look to be useful read elsewhere in this blog about it.
If you have more rapidly progressive IgAN, as I was diagnosed with, you might want to become even more of an expert.
More than low grade disease warrants an increasing awareness and medication regimen.
Controlling high or rising blood pressure with medications, ideally ACE inhibitors, is a good and common course of action. Most modern blood pressure meds have rather low side effect implications. ACE type inhibitors and their chemical kin are best for IgAN.
Control of high cholesterol which kidney disease has an insidious role in elevating your cholesterol is also a good idea, cholesterol lowering meds have some side effects to watch out for and require closer monitoring.
Tonsillectomy is a means to reduce ones own auto-immune process and is for a great many people highly effective in putting the disease into remission and even reversing the damage done. It has almost no side effects other than the worst sore throat you’ll ever have but you can have only once. Tonsillectomy is very commonly performed as elective surgery to help reduce snoring so your bed mate can get a good night sleep.
Aggressive treatment of throat, mouth, nose, and ear infections is a good course of action especially if you see IgAN signs increase in your pee!
More serious disease warrants dramatic medical intervention and treatment.
Strong medicine such as steroids like prednisone are commonly prescribed and frequently have serious side effects. You need close medical supervision on these meds. Steroids are meant to suppress your immune system which given that IgA Nephropathy is an auto-immune disease the less auto immune your are the less damage you will be doing to your own kidneys.
Other immune suppressing meds such as MMF, mycofenelate mofetil, or its kin may be your doctors choice. These are tough drugs with many side effects.
Dialysis – yikes I don’t want to go there, the last resort which is highly subject to how and who performs it.
Transplant – if you are lucky