I was diagnosed with IGAN in 2013. Back then it wasn't bad. Can't remember what my GFR was at the time but I felt fine and didn't take the diagnosis seriously at all. So 4 years go by and I decide I should probably at least get it checked up on. These are the results of my blood work from 5/17:
Protein, Total-5.6 g/dL
Albumin-3.1 g/dL
Calcium-8.9 mg/dL
Bilirubin, Total-0.4 mg/dL
Alkaline Phosphatase-52 U/L
AST-28 U/L
Glucose-85 mg/dL
BUN-19 mg/dL
Creatinine-1.75 mg/dL
Sodium-141 mmol/L
Potassium-4.7 mmol/L
Chloride-104 mmol/L
CO2-24 mmol/L
Anion Gap-13 mmol/L
ALT-15 U/L
eGFR- 47 ..
Now in December my glucose has risen to 111, BUN is up to 26, Creatinine is up to 1.94, and my eGFR has decreased to 42.
The Nephrologist has had me on ramipril 10mg for BP (usually around 140/90), just started me on Lipitor, and today started me on Prednisone.
And now for the reason i'm writing this post. They want to start me on Cytoxan which is a potent chemotherapy drug used to treat cancer and in my case could be used as an immunosuppressant. But the side effects are scary. A few are hair loss, nausea/diarrhea, ulcers, infertility (i want to be a father someday), extreme fatigue, and an increased risk of developing certain cancers like leukemia.
So, in the past year my GFR has dropped 20 points. While I know there's no way to predict the rate at which my function will decline the math suggests I'll be in end stage kindey failure in 2-5 years. While I understand the cytoxan will probably slow the decline is it worth the side effects? Especially if kindey failure is inevitable?
I guess i just don't want to make a risky/hasty decision. Especially if there are other treatments. For one my diet is absolutely horrible and I barely exercise. I'm not in bad shape (BMI is 28) but there is ALOT of room for improvement and I think I want to try that before chemo. What do you guys think? And does anyone know any other non-prescription methods for improving kidney function? Thanks in advance!
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RustyIGAN
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...and don't beat yourself up about this. The important thing is that you are now aware of what is going on and are formulating some kind of plan for yourself and your care.
Being reluctant about the chemotherapy drugs is very normal. Do your homework and gather questions for your PCP and nephrologist. They are getting paid to work with you. Bear in mind, everyone is different and responds differently to various medications.
Right now they have started you on the base treatment, Rampril, Liipitor and Prednisone. Give all of them a chance to take effect.
I am on Lisinopril, which I have doubts about, but was prescribed this to lower protein spilling., not for BP ,and was given Lipitor which has not agreed with me, yet other people on this site have been successful with it. I can't stress enough that everyone is different.
As far as your diet, you can address that today. Limit your sodium! Low protein; chicken, fish or turkey and no red meats, cold cuts etc. Easy on the dairy and lots of water.
Eggs and egg whites are fine.
Lots of fresh or fresh frozen vegetables, no cans or canned soups. Best fruits are apples, blueberries, strawberries and pineapple.
Many people use the davita site. They are a big help and also provide recipes. Davita has classes locally and also on line.
If you google The National Kidney Foundation, they have information on food suggestions and even eating out.
See a dietician at the hospital at which you are being treated and heed their suggestions.
The important thing is that you stay positive and remember that by addressing this that you go forward not backward!..
. . and the hardest..kidney disorders and getting the treatment plan that works is a process.
You have come to the right place for support here! You are never alone as we are all here for you.
Bet117, this is excellent advice all around. I couldn't of said it better myself.
RustIGAN, I, too, have igA Nephropathy and interestingly enough was diagnosed around the same age as you, 23. I am now 36 and at age 35, I learned I was headed into renal failure (which came on rather suddenly). Months later, I was blessed enough to have a kidney transplant (and doing great, btw).
Although this was my journey, as Bet117 mentioned, it's important to note that everyone's journey is different. I was a bit in denial during the initial stages of my diagnosis, as well, but I've learned how important it is to be as proactive as possible in your own healthcare. Also, should the time ever come that you do need a transplant, you'll feel that you did everything you could up to that point to try and slow the progression of the disease.
As for the doctors medicinal recommendation, I'd seek a second opinion. Big decisions should always involve more than one persons opinion (I even got a second opinion before my transplant). Also, and this is a big one... make sure you feel that you trust the doctor you are working with. You want to know that the person that is working to keep your kidneys functioning on their own for as long as possible is making the best decisions possible for you.
As for ways to being an advocate for your own health:
1) regular (every 3-4 mo.) nephrologist checkups w/ lab work (this is important so that your dr. can adjust various meds accordingly)
2) exercise
3) diet (Bet117 is right. DaVita is an excellent resource for kidney patients. They have delicious recipes geared specifically towards kidney patients.)
Great that you reached here. Bet117’s reply to your post, very well sums up the way forward in my view. Do give weight loss, healthy eating excercise and even dietician a serious try in any case. This is bound to help you regain your over all health. And yes can’t stress enough the importance of staying positive and in that context don’t think too much about ‘the math.’ With improved diet, excercise, positive ‘can do’ attitude you can stall and even improve your numbers🙏👍 Yes the right medication is important too. And this is different for different people. My son takes losartan for blood pressure and proteinuria and this has helped.
Do check with your doctor if holding off of chemo for a couple of months as you work on your diet/ excercise is possible? Is there any down side to it? Hope you get the right guidance in this regard.
If you are really concerned on fatherhood I would suggest checking in with getting your sperm frozen then when it does come time you have it. It's unsure what will happen in the future might or might not, but you have it for backup just in case the medicine you have to take has those side effects.
I hope I caught you in time before trying the meds.
I also have IGA Nephropathy. I will send you a private message as I have much to share with you. There are some things to try, but you have to be disciplined and willing to make big changes.
IF you have started the meds, what I tell you will also help as well. There are several groups on facebook that are IGA Nephropathy groups. I highly recommend joining them and asking about the meds you are considering. It is a large community on Facebook and you should find some answers there as well.
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