My daughter is 6 years old and 3 years post renal transplant. It has been very challenging with numerous bouts of UTI's and BK thrown into the mix. She currently takes tacrolimus (3.2 mg BD), sytron, bicarbonate, cefalexin and prednisolone (2.5mg every other day), alphacalcitol and darbepoetin. Her creatinine is very high and currently stands at 286umol/L and urea 23.9 mmol/L all other parameters are normal. Physically she is great with no signs or symptoms- she's a typical 6 year old.
I'm just wondering if anyone out there has a treatment which has worked for them (natural or otherwise). As I mentioned my daughter suffered with severe UTI's about a year ago. She would get a UTI every 3-4 weeks like clock work ending up in hospital on IV antibiotics. This lasted for about a year. Each bout effecting the renal function. After about the 8th UTI/ hospitalisation it was the pharmacist that suggested using D- mannose. Since then my daughter has not had a UTI and next month will be a year since the last UTI. It just goes to show that the doctors do not know everything and life changing information can come from any source.
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BlueistheColour1
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I am only 2 months post transplant and my creatinine has been consistently low but has bounced around a few decimal points. My doctor said the varying levels had a lot to do with the amount of water you drink, since creatinine is expelled through your urine. I was told that is one reason why it’s important to drink so much water after a transplant. So unfortunately the only advise I can offer is make sure she is drinking plenty of water!
I’m sure you have already but I would definitely follow up with her doctors and try to get a solid plan from them for lowers levels. She sounds like a trooper, good luck!
Thank you for your advice. She actually drinks copious amounts of water as directed- far more than I could ever manage. Her medical team are great and are monitoring her closely. Thx.
Hi - I am not familiar with all the meds your daughter is taking; however, I do know that prograf can be hard on the kidneys…but it is still the drug of choice for most transplant centers. When I was taking it or the extended release version of tac (envarsus), anytime my drug levels were high, my serum creatinine was also elevated. Best wishes for you and your precious daughter.
Two suggestions...just my opinion. I am 9 months post transplant, a 66 year old woman and have been on Tacrolimus since my transplant. Because I am always looking for ways to keep my lab numbers in check, this is what I have learned. First, ALWAYS drink 64 ounces of water EVERYDAY. This keeps the new kidney flushed and in good health and working order.
Secondly, on the topic of high creatinine. While we are new transplant recipients we are encouraged to get a lot of protein from our diet, however it does not have to be all from meat. If you cut back on meat of all kinds and add in protein that is plant based, you can bring done the creatinine. Legumes for instance, are a really good source of protein.. I am not suggesting you go completely plant based. I have no idea what your 6 year old eating habits might be, as young children can be picky eaters. I was as a child, so I speak from personal experience. Check out Google for plant based protein and try to add it into her diet ..
Yes totally agree about the water which she complies with. As for the protein issue we do strictly manage the amount of protein she eats- which is kept to a minimum. Thank you.
Agree. Doctors are diagnosticians in my opinion, while pharmacists are chemists. Our transplant doctors deferred to the team pharmacists in group meetings.
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