Your a trooper, Captain. I admire how much effort you are putting in to be proactive and engage with this difficult/complicated stuff. Its not easy. You are a tough cookie doing a great job.
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Thanks everyone- This is very hard, because I feel like I’m so symptomatic. Tonight I’m at work and my legs are so swollen I can hardly bend them. Thank god I wear scrubs to work, but it’s so uncomfortable just to move that I can’t properly convey it. I feel like there has to be SOMEthing that can be done about this swelling, and if I can just get a handle on that, and the headaches I keep waking up with, I will be able to tolerate all of this a whole lot better. I feel like my nephrologist isn’t doing enough to help me with my symptoms, but I’m so new to kidney problems that I don’t know if she’s being cautious, or careless. Either way, I want to SCREAM because I can’t deal with this swelling anymore. It’s ruining my life and I don’t know what to do about it. I’ve brought it up to my doctor and time and time again she makes me feel like there is nothing that can be done about it. I’m patiently waiting for my kidney function to improve so she will increase my dose of Diovan, and according to her, that will help with the swelling, but will it? WILL IT?! I have spent so many hours online searching for answers and come up with nothing. No one seems to have this problem as bad as I do. I just don’t understand it. I’m going to check out that website and see if I can find some solutions that I haven’t already visited, because at this point, i feel like I’ve tried everything, and I feel like the possibility of getting back to living a somewhat normal life is hopeless. Maybe it isn’t, but that’s just how I feel today, and I don’t know what to do.
Diovan belongs to the class of anti-hypertensives known as ACE inhibitors, and they have some side effects such as their characteristic cough and, occasionally, they can cause bone problems which are themselves damaging to the kidney. Reducing blood pressure helps the kidneys, but reducing it too far can cause problems too with dizziness and tiredness, so caution is always required in dosing anti-hypertensives, and this may be why your nephrologist is being careful with the dose. Interestingly, Diovan belongs to the class of anti-hypertensives which improve renal function even independently of their blood pressure reducing effects, so they are a good thing to use with patients in your situation. They won’t cure renal disease, however, though they will slow its progress.
Diuretics are not much help in renal disease, since their mode of action is to increase urination, which kidneys declining in function can’t do very well. You should ask your nephrologist if she wants to recommend a fluid intake restriction program for you, which may help with the edema. The main thing to watch out for is difficulty breathing from the accumulation of fluid in the lung area, and this can be treated by withdrawing fluid through a small puncture in the back.
I’m learning that diuretics are doing nothing to help with the swelling. Doctor put me on 40 of Torsemide twice a day, and they quite literally do nothing. She even gave me Metolazone to take a half an hour before, and that has not made a difference in the swelling, either. I am on a fluid intake restriction. I feel as though I am always, always, always thirsty because of it. I have also expressed my concern for the swelling to reach the point where I’m having difficulty breathing, but she doesn’t seemed concerned about the swelling, and just throws more Torsemide at me. Apparently when I’m taking a higher dose of Diovan, it will help me retain more albumin and reduce the swelling? This is what she has told me, but at this point, I’m not sure if that’s true or if she’s just telling me that to shut me up. The swelling is very concerning.
Albumin is a general measure of the patient’s nutritional status, while creatinine is a measure of the declining function of the kidney, which should be able to process the by-products of protein metabolism but can no longer do so adequately. Adequately, the level of creatinine should be around 80 to 120, but it varies a lot among people even without renal disease, and increases naturally with age. To determine how far your renal decline has gone, creatinine is a key value, along with glomerular filtration rate, which calculates the efficiency of the kidneys’ function. Protein in the urine is not only a symptom of renal disease but it also causes further renal damage, so you want to reduce this if you can.
Blood pressure control is about the best thing you can do to combat the decline of renal function. Theoretically blood sugar control should help as well, but studies have shown it not to be very effective once the renal decline is underway. Of all the complications of diabetes, renal disease is the one most driven by genetic factors, and the typical onset is 17.5 years after diagnosis of type 1 diabetes, despite the wide variation among patients in blood sugar control up to that point.
I’ll be hitting the 18 year mark in May, how convenient!
How are you now
How are you doing?