PATIENT Q&A - Nephrologists I felt this one was important to share, sorry I got long-winded in my response. I hope this helps others who are feeling uncertain. Q: Since my boys diagnosis and thus the realization that my kidney symptoms are actually Alports, weve found so many physicians in our state of Maine still learning the most recent treatments. Is there a specific method or suggestion you have for keeping our physicians up to date? Or is it best to be referred to an major metropolitan area specialist whom would have a greater amount of patients with AS? A: The most recent treatment guidelines can be found here: link.springer/.../s00467-012-2138-4/fulltext.html My personal opinion is that you need to have or find a nephrologist you can trust with EVERYTHING. They should be the kind of person that treats the whole patient, not just your kidneys. I say this especially for women that are of child-bearing age b/c of the fragility of the topic of having children with any kidney disease. Since Alport Syndrome is so incredibly variable in women, you really cannot put a price on how important it is to have a nephrologist who is compassionate, understanding, and not (well, I have to say ignorant here) about women having a desire to have children. I was so extremely lucky to have found my first long term nephrologist to be such a source of support for me. I have come across many before her and after her that were less than enthusiastic (to put it mildly) about my desire for children. Needless to say, they didnt stay in my arsenal of care-givers for very long. I now have a neph who I trust implicitely. Is he an expert on Alport Syndrome? No, I dont think so (well, maybe after I sent him more than he ever wanted to read on it!). He is willing to do his homework, and he sees me as a whole person with many needs that may be impacted by my renal function (such as the need to start medication which essentially stopped our ability to have children). He has handled some very delicate situations for me with grace and understanding and doesnt budge when I break down in tears during a check-up. Hes my new anchor of strength and support and provides for my medical needs and my emotional well-being. This is what you want to find - it doesnt have to be a top researcher or someone who is still publishing papers, but it does need to be someone who will find out anything they need to know about your condition to properly treat you. When we werent sure about having our third, we asked my neph to do some homework.... he jumped right on it, and called me about a week later and left the most adorable and enthusiastic response on my voicemail giving us the green light to expand our family if we wanted with his full support. I was so nervous (I had some mild eclampsia after my second pregnancy and my great aunt had died in labor, so I was worried my kidneys wouldnt hold up) that I asked him to watch my whole pregnancy, and he did just that. My OB did as well, but even she was ever-reliant on the fact that we had my awesome neph in the next building watch-dogging my labs and checking up on me every month. So I guess this is a really long-winded way of saying that if you find a gem, like I have, dont leave them for anything! Follow our facebook page and I promise you will know as much as I know and you really shouldnt need anything else. Take the treatment recommendations to your neph and as long as he/she is willing to read them, keep them on file and refer to them or make calls if needed to others for specific needs, youre in good hands. If you havent found that neph that you can ugly cry and complain in front of or that has no bedside manner - I suggest you take a look around and see what you can find. Life is precious, and you should have full confidence in your nephrologists ability to care for your needs. These are of course, my opinions, and not meant to be medical advice. All my love, Joy
Posted on: Sat, 23 Aug 2014 04:35:07 +0000
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