Kidney stones

Hey ginger i believe the last time i saw him almost 6 months coming up here I believe it was at 42..... I will have to get my printout of them out to make sure that is accurate. It always could be different now of course cuz it has been some time and I have passed some stones since seeing them so it will be interesting to see what it's looking like now. I wasn't sure if insurance would approve a preemptive kidney transplant......I know I'm sure.theyll make me jump hoops to probably get it early but if it improves the odds and your health why not if it'll be cheaper in the end...... obviously I'm not an insurance person cuz I Know they pretty much hope you don't need it because then they are making money.

Thanks for your positivity it always helps, I guess when you work in Long term care you see a lot of sad things but the impact of making all of them smile can make my week. They truly probably know how I'm feeling some days more than I by the way I look it's kind of funny some days!

@tracilynn0418, My next appt. with nephrologist is also in August. She requires lab work done the week before the visit..no idea why she wants the lag time. Glad that you are seeing one who you like and who does a good job of explaining your lab results. I've found it sometimes harder during the virus stay at home restrictions to follow my kidney diet as religiously as before. Are you following a specific diet and doing a good job of adhering to it? I insisted on seeing a dietitian following my prediabetes and kidney diagnosis. My insurance required a signed referral from my pcp and the visit proved so helpful. I was given a plan for both diagnoses which really helped meal planning. Also http://www.kidney.school was a super online resource for me to learn more about kidney function and understanding labs. The members of the Mayo Connect Kidney forum are so helpful in sharing information and what helps them. Have you considered a referral for a dietitian?

@fiesty76 for the first time, my nephrologist said a six month recheck, two weeks ago. Since 2015, it has always been every 3 months, with my current dr being the fourth one in those 5 + yrs. [one left practice, one I substituted since he sent a PA to see me instead of himself, one I left behind when i moved] I get labs done 2 weeks ahead, since it takes a week before the lab will release results to me, and I can have a copy when I see the dr.

@tracilynn0418 Confidence in your medical team is critical to your well-being, physical and emotional! You have found that out. I will be curious to hear what they say about transplant prior to dialysis. Have you started looking for a donor?
Ginger

@gingerw, My goodness, you have really had the turnover in docs over a pretty short period. I now request appt.'s with the doc and not their PA's. I don't see any that frequently ... my pcp usually just once/yr... and others 6 mos...or at least until Covid breakout. I always tell the scheduler that with my multiple health issues, I really need my appt to be with the doc. Only once since starting that did a PA get substituted.

My CKD labs are done at a diff. facility from the nephrologist and I am so glad that I requested a copy while signing in for the appt. However, the doc took my copy and went over it with me instead of reviewing the results on her screen. Next time, I think I'll do labs, like you, 2 weeks ahead. Can pick up a copy from doc's office and then make a second copy for the doc at appt. The whole idea was for me to have something to look at as she covered the information. Had asked if I could get the lab results from the lab but was told that it would be much faster for me to get them from doc's office. Said it could take up to 4 weeks to post online

I second what you wrote @tracilynn418. It made wonderful difference for me when I finally got up the nerve to change cardiologists. The new one is not as personable but is much better at sharing information and answering questions.

Yes I always do labs at least a week ahead depending on which he wants done because there is one that takes longer to receive back I've started doing the 24 hour urine one more than a week in advance because when I cut it too close because it gets FedEx's to a lab he didn't have the results one time for my appointment. Luckily he's pretty good and leaves indepth voicemails to me so I can understand everything he always gives me a copy of all my labs since I started seeing him so I have started a binder so I can always reference back to them to see how everything has changed from visit to visit. As for donors no I have not necessarily really looked but I do have a few people that I know or have worked with that have said they would be willing to but I very well know that could change because it's a big ask of someone to do plus they also have to clear an evaluation also, so I know that. Though my one friend that really got me started on this and the hope of living with so much sadness at once and offered to be a donor and new alot about the whole process. Now I do know that the chances of the being a match is not certain and of course back when I was sick I cannot remember what blood type I am when they checked me because I needed a transfusion. But I have hope, Now not sure what transplant center I would use. I do know of the one closest to me is Omaha,NE other than that and knowing of the mayo I am not knowledgeable of any others. So I know there's still More to learn but hey maybe by the time I figure it out they will have more technology created lol but I do believe that dialysis being not needed would be a hurt for some people , so I do believe in that is why we aren't as advanced as we could be they depend on us needing all these things for the rest of our lives which as a human makes me said because I have so much compassion and don't think any of us deserve to suffer if there's a way to prevent it by all means. Ok end of rant. Hope you all are well!

Hey the last time I saw a dietitian was when I first started having recurrent kidney stones as a teenager my pediatrician referred me there so I have learned quite a bit about everything that way though she really didn't know much back then of how to help me really but we looked at.over eating healthy things in general. Yes it has been difficult during these times to eat exactly right! Because I have to consider the things that cause my stones then I think kidney disease diet. Everyone looks at me like I'm weird while I'm at work and don't eat much lunch and just move it around on plate. I often what will happen because of me being on potassium citrate for the stones because eventually I know I won't be able to keep my levels in Normal range with taking that. So that is another question id like to ask him next time I go. I believe I did download and went through the stuff you had posted previously when I was first diagnosed with it and was very good and helpful. Sometimes I wish they would just let me have a feeding tube so I wouldn't have to worry about what I eat all the time but I know that's not a realistic request 😂

Hi, @tracilynn0418. I am responding because I read that you mentioned transplant centers. I am a liver and kidney transplant recipient and I I have some resources to share with you - if and when you need them.

You can find transplant program-specific reports (PSRs) for every transplant center in the US at The Scientific Registry of Transplant Recipients (SRTR). This is a key resource for transplant patients and loved ones. https://www.srtr.org/
If you have not visited the SRTR site before, it can intimidating or confusing. So here is a post that explains what you will be looking at.
PagesTransplantJuly 2019 Program Summary Report Highlights
https://connect.mayoclinic.org/page/transplant/newsfeed-post/july-2019-program-summary-report-highlights/

I also want to share the Living Donor and Recipient toolkits.
https://connect.mayoclinic.org/page/transplant/tab/resource-36/

I am happy that you have joined us and that you are a part of this active discussion that in involved in proactively sopporting kidney health!

@feisty76 When they sent in a PA, I requested the dr. Dr. came in and said he was too busy to see all his patients, so I had to see PA. Told him I was paying out-of-network co-pay for a specialist, and would not pay that only to be seen by a PA. Went home and called insurance, complained, and changed to another out-of-network nephrologist, who was wonderful. She was the one who realized there were additional issues, and got me in to a hematologist-oncologist, where my multiple myeloma was discovered.

@tracilynn0418 Yep, some of my tests take longer to get back, too. I use the same lab, and they email me the results a week after samples for routine orders are taken.
Ginger

@gingerw, I appreciate that you have had a similar experience with a doc and seeing the PA instead. I've had more than one doc's scheduler tell me the same that the doc alternates appts with PA because of too many patients. It isn't easy making a change to a new doc but like you, my change from one cardiologist to another resulted in two new diagnoses and much more information shared by the doc. We are the only "us" we have so it is important to feel confident with our medical team. So glad your change was well worth it too!