I really hope someone can help me. I have known for 6 years that I have been spilling protein. The last time they told me how much, it was 2000. Last week I get sent to the transplant clinic to see the kidney doc. They run their test an 3 hours later she comes in with one of the fellows. She tells me they don't get many patients as bad as me, complication wise. I admit I'm in bad shape. That will happen when ya don't have insurance for 8 of the last 10 years. She rushes out an her PA comes in to explain it to me. Suddenly I'm told I'm in stage 4 Chronic Kidney Disease. It kinda shocked me an now I don't know what to do or who I can talk to or where to find info.
Why didn't that clinic help? That would seem to be the place to get the help you need.
You obviously need the help of a specialist and might need to file for disability so you can get Medicaid benefits to help.
In the meantime, get your blood sugars down, avoid eating meat, and avoid salty stuff (especially pop or anything carbonated). For people who have low protein levels doctors prescribe low cost ACE inhibitors which are blood pressure medicines that improve kidney function. But I'm not sure what will help in your situation.
There's another person who posts occasionally on this site. Corvah had kidney disease and had a kidney and pancreas transplant. Hopefully she'll see your message and offer her insight.
Sorry to hear about your diagnosis Mark. That must have been a scary shock!
It sounds like there are some other people dealing with the same problem in the "complications" group on our forum -- here's the link to their thread.
Do you have insurance now? JDRF has some resources for T1's w/o insurance if you check their site.
Thanks, I'm already on SSI from other complications. I have lowered my A1C to 7.2 but it hasn't helped. Finally 10 months after my last appointment they had me come back in. They ran labs and 45 minutes later they said I had to go the hospital right away. I guess my potassium had gone up to almost 7. Halfway to the ER my heart stopped for 3 minutes. Two days later I left the hospital. The next day I collapsed at work from high creatine and phosphorus plus a major infection in my digestive tract. I also found out the my bladder was backing up into my kidneys because of obstruction. It just all gets overwhelming sometimes. Don't really have anyone to talk about all of it.
You have a lot of diet changes to make to help maintain some health to your kidneys. I know it will be incredibly difficult for you to make all these changes, but the more you are able to stick to these guidelines the "healthier" your kidneys will be.
As a dietitian, here is a link to diet guidelines we follow quite often. Because you are not on dialysis, you will want to follow a LOW protein diet and NOT a high protein diet like is laid out on the website. Should you ever start dialysis, then you will want to change your protein intake.
www.kidney.org/.../dietary_hemodialysis.cfm I encourage you to take a look at this website and see what things you are already doing and where you might be able to make some changes. Good luck, Mark. We are here for you to talk when you do (and when you don't) need us.
Hi Mark. There are several things you can do in the meantime to help yourself feel better. First off, cut back on salt andn animal protein. Both of these are hard on the kidneys. The clinic you were at should have given you guidelines on how much potassium you can safely eat. I'm afraid yoiu've already seen what can happen. High potassium foods include all citrus, tomatoes, and anything very high in fiber. Cut back on this too. Of course working on your blood sugar will help as well. Another good site for info is transplantbuddies.org.
Take heart, stage 4 is not the end. You may remain stable for a long time before needing any intervention. Bst of luck and feel free to ask lots of questions.