I dont know where else to turn to so maybe someone here has had the same experience. I've been diabetic for 32 years now. I found out I had kidney disease in 1996 while pregnant with my daughter. Since her delivery, all has been well and maintained until recently. About 2 weeks ago, I started swelling in my lower legs and feet. Mt Family doctor thought I might be having a reaction to some meds he prescribed since my thriot was itchy also. He sent me to the ER where they came into my roon after many blood test and an EKG and said that they believe me to be in renal failure (not allergic reaction to meds). They also believed that it was possible that I had-had a small heart attack due to the EKG numbers being so high. I follow up with my family doctor who refers me to my Nephrologist. I call my Nephrologist and explain whats happening. They call me back about a week later (after me calling them daily and getting no where), and tell me that the doctor will see me on January 27...OVER a month away. In the meantime, I can barely walk due to all the swelling, I have a lack of appitite and also a fear of eating something that might make the swelling worse, some mornings, my face is so swollen that I have to call off work because I look as though I have been beaten to a pulp, and work is wanting me to take a leave of absence due to the missing of work. The swelling is bad enough that by evening, I cant walk down my steps because my skin feels as though its going to rip open if I stretch it any further. I have continued to call my Nephrologist and they say they cant get me in any sooner. Im miserable and I have 2 children who depend on me. Any suggestions on how to help myself with this swelling??
Hi Nyxy. Welcome. You might want to add something along these lines on the kidney board. I think I am the only one here who has diabetes and also renal disease.
First off, cut out all processed food and don't add salt to anything. I had the same problem at one point and it was a salt issue. If it is a salt problem, the swelling will go down quite quickly. I looked like Fred Flintstone my feet were so swollen. I had no ankles at all.
In addition to this it might be a potassium issue as well. So I would cut back on foods like potatoes, anything citrus, tomatoes and bananas. Your new neph will probably send you to a renal dietitian as part of the plan so that you will know (based on your blood work) what you can and cannot eat.
I have to say I'm a bit disappointed in your family doctor that you were not sent to a nephrologist in the 90s when it was first established that you had kidney disease. You would be better prepared and possibly could have learned some tricks to delay the progression of the disease.
That said, another issue to keep an eye on is your blood pressure. Do you know what it is? Is it high? You should have been put on an ACE inhibitor (a type of bp med like lisinopril) that is often very helpful is slowing or stopping the progression of kidney disease.
In the meantime, try to keep hydrate with clear fluids (not pop or juice) but don't over do it if the swelling is still severe.
I have cut back on all my food simply because this is a whole new ball game for me. I am afraid of making my swelling worse by eating something that may cause more trouble for me. To put things bluntly...I am scared. My swelling has not gone down any and I wake up at night 2 or 3 times because I have pressure on my chest and its hard to breathe. My Nephrologist put a "STAT" on all my blood work but I have to collect a 24 hour catch first. Im on 80 milligrams of lasix but hardly peeing anything at all. At this point, I almost welcome dialysis so I could at least walk again without worrying about my skin splitting open. I work on my feet also so by the time I am off work, I am extremely swollen. Im miserable and hungry too. I do eat little things here and there but not nearly enough for a diabetic. When this all happened, my potassium was at 6.8. Its down to 5.4 now but the damage has been done. The doctors believe I had a mild heart attack at some point so that scares me also. I've been going to the National Kidney Disease Association website to try to figure things out to eat. Its helpful but also confusing. Things that I should be eating for my diabetic are things that could hurt me otherwise....such as broccoli and leafy foods that are cooked. But I do appreciate your reply to my blog and if you have anymore information, please pass it along to me. I would appreciate anything you have to offer.
I know it is difficult when it comes to diet, but the renal diet (which you will get from the nephrology team) will have to trump the diabetic diet. I don't want to scare you but you could have ended up in serious trouble with a potassium that high. Unfortunately, anything really high in fiber has a lot of potassium. Don't forget to avoid the foods I mentioned before.
I know dialysis is a scary proposition, but try not to be too afraid. Nothing is ever as bad as you imagine it's going to be. I was on hemo dialysis for a year before I got my new kidney from my cousin (7 years ago).
If you have any questions, don't be afraid to ask.
Just having someone to talk to about his is helpful. But I started looking up foods that are high in potassiumand there are a lot out there. I work in a pharmacy and I asked the pharmacist if there were any medication that is over the counter that I can take to help reduce potassium and he said there were some medications the doctor could prescribe but none that he knew of from over the counter. I am on lisinipril now for my blood pressure. All I seem to want ot do anymore is sleep though. I simply feel exhausted all the time. My face is so puffy and the puffs under my eyes are bad. At times, it looks like I have been in a fight. I guess thats normal though. Its wonderful to hear that you received a kidney and it is working out for you. I was adopted so I have no idea who any of my blood family are. Once dialysis starts, do they automatically start looking for a donor for you? My case file for adoption was sealed but maybe I can get it un-sealed if I can prove there is a need for it. I have 2 children...a son who is 16 and a daughter who is 13. My daughter is a diabetic also so this hits home for her. Im hoping she will never have to go through all this and maybe she will learn how important diet and such are for a diabetic. I didnt take good care of myself for several years and now I am paying the price. My fears arent stopping me from wanting to feel better and learn how to continue to care for myself. Thanks so much for all your information. It is so helpful.
There is nothing OTC for potassium, but there is a drug called kayexalate that is a potassium binder. Your family doc won't know about this, but the nephrologist will.
As for looking for a donor, it is often better to get the ball rolling before you start dialysis. In fact, a pre-emptive transplant is often best. The donor doesn't have to be related. In fact, my cousin (actually a half cousin - my father and her mother are half-sibs) was the worst match you can be (1 our of 6 antigens) and still do the transplant. I haven't had an episode of rejection either (knock on wood). I know of a lot of couples who match and donate a kidney to their partner. Friends can offer too. If you think about it, it makes sense because if you get a cadaveric donation, you weren't related to the person who died and the match still works.
Try to keep you head up. You will feel better at some point. Best of luck.
Thanks again Cora
I have already had several friends say that they wanted to be tested to see if they matched. It will be a process but Im sure if and when that point comes, my friends and family will be there. I have 14 adopted brothers and sisters so who knows...one of them could be the match : ) I completed all my blood work this morning so now the waiting process has begun. I keep hoping the Nephrologist calls and and says " Here's the plan" but I know it will be a while yet. I am blessed that everyday, God see it fit for me to still be here so I make the best of everyday...even though I feel miserable. I wish other people would do the same. But thanks again Cora...just having you talk and your kin dwrods are re-assuring.
I had my appt with my nephrologist and she has scheduled me for a biopsy later this month. She isnt sure about a few things and she thinks a biopsy will help answer a few questions about whats going on with me. My potassium level is down now and I have removed as much salt as possible to my diet and it all seems to be helping me with some of the swelling. She also increased my lasix amount which has helped a lot also. Going to have to have an ultra sound done on my kidneys also. She wants to see how much blood is circulating through my kidneys. But dialysis isnt in the market for me at this time. My kidneys are working at 32% which isnt good but she wants to try to find out what caused such a quick problem with them. They were at 62% just 9 months ago. But we are on a roll now and hopefully we can get to the bottom of things that are going on. Once again, thanks for your help and I will try to keep you informed.