I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: Dkrotzer on May 09, 2013, 06:48:40 PM
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My name is Desirae. I am 27 and I am in stage 5 kidney disease. I have not started dialysis yet but I do have a 3 year old AV fistula placed and I am going in on Monday to get my PD catheter placed. I am choosing PD because I have a 3 year old daughter to take care of! I have never heard of this site until a friend told me about it. I have to say I am so very happy that I found it. Just reading other threads makes me feel that I am not the only person going threw this. I have already gotten loads of information from here, so thank you everyone! :bandance;
I do have a few questions though if ya'll do not mind answering them.
1. How do you deal with friends or especially family not willing to get tested to be a donor? I am struggling with this right now and I just have no idea how to handle this. My husband is in the military so we do not live close to family at all so we are dealing with this all on our own. I am thankful for my husband though.
2. How do you feel about PD? Do you like it better then hemo or vise versa?
3. One more lol :) I feel I can not eat anything on the kidney diet. I have been doing it a long time and can not find a good balance of yummy food lol. What are all your favorites?
Thank you and I am happy that I found this :yahoo;
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Hi!
1. A lot of us struggle with the knowledge that friends nor family have offered to be tested. Sometimes friends and family don't really understand how hard ESRD is because we don't tell them. We put on a happy face and pretend all is well. If you are certain that your friends and family DO understand how hard this life is, and they still don't offer to be tested, then you just have to get yourself on the list for a cadaveric tx and do your best to stay healthy until that call comes. How you handle it is entirely your choice. You can let it go, or you can let it ruin relationships.
2. Lots of people have their preferences. Lots of people change modalities. You just have to see what suits your body and your lifestyle best.
3. I did the pre-dialysis diet for 8 years. I grew up in a culture that prefers rice over potatoes, so I relied on basmati rice which is so much flavourful than regular rice. I also relied heavily on berries. As for vegetables, I'd pull out my list of renally friendly veggies and would roast them. Green beans are especially good roasted. I always was concerned about being undernourished, so I did eat taboo foods but really watched my portions. I'd let my labs be my guide.
I know you will find many supportive people here! I'm glad you found us!
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:welcomesign; glad you found this site! The people here are very knowledgeable and helpful. They have helped me so much more than they know!
1. I have tons of eligible family members who have never offered to be tested. I try to let it slide and understand their concerns, but it hurts. I think I would gladly give them my kidney if I could, but I am most certainly biased. I have several friends who are willing, so you never know where your angel will come from.
2. I do home hemo, but have read lots of posts from in-center and PD patients who do great on D! I guess it all depends on the person. Plenty of pros and cons for each modality.
3. Since I am on D, my diet has done a complete turnaround. I was so used to doing the low-protein, that I have really struggled with the dialysis diet. Protein is now my friend, and I have been eating lots of steak, chicken and fish. I will say that the thing I miss most is cheese lol! Funny how you don't crave something until you can't have it.
Best of luck to you!
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:welcomesign;
1. Both my hubby (Ed) and I are in kidney failure so we are really praying for donors. No family has said a thing about being tested. Which doesn't really bother me since most would not be able to donate. Ed has had several coworkers say they should get tested. One actually did this friend/coworker thought he was Ed's blood type but ended up being my blood type. The coworker signed up to do paired donation. the coworkers wife told Ed maybe he should donate to me. The ones that hurt are the people from church that tell me they are praying for me and my family daily. I think it's sweet but why can't they put actions behind those thoughts. I mean after all Jesus asks us to give our coat to those that need one. I'd do it if I could. But it's not like I can turn to them and shake it out. So I smile and say thank you I/we need it. Sometimes I cry at home.
2. Any home Dialysis is better for life I think. Ed was on in center Hemo for the first 7 months. It really sucked for the kids and the family as a whole. Then he switched to PD. which works around our schedule much better. But I hate the machine! It always seems to alarm most every night, we will probably have to replace it again.
3. really can't help you on that one. Me on pre-d diet, Ed on D diet, and the 4 kids on a healthy diet. It's hard anyway to slice it.
Welcome I look forward to hearing more from you.
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I do PD and have for the last almost 3 years. It allows me freedon. I am on the cycler at night.
As for your diet, once you start PD, you will find the PD rental diet, not quite as strict. Because PD removes the Potassium, you get to eat the vegetables again and for the most part there not fluid restrictions. On PD you do need lots of protein, because PD removes protein. :welcomesign; I hope I answered a couple of questions for you.
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Welcome Dkrotzer,
1. I was really surprised that only one family member and no friends offered to donate a kidney. The one that did didn't qualify. Much of the family has passed away. I haven't ask anyone directly, just explained my situation and that I needed a kidney donor. The typical response was an explanation of why they couldn't donate. I just accepted their position and have moved on.
2. I have been doing PD on a cycler at night for 4 months. I chose PD because it allows me to work fulltime. I realize that someday I may have to go to home HD.
3. I am became diabetic about 10 years ago and controlled it with diet and exercise. I was eating a high protein diet and lots of vegetables and only a small amount of carbohydrates and no sugar.
Then the kidney failure was discovered and my Potassium was high so I reduced the amount of vegetables because almost all vegetables I liked were high in Potassium.
Then I learned at stage 5 that protein was a strain on my kidneys and probably the high protein diet speeded up my kidney failure. Then my diet became no sugar, limited whole grain carbohydrates, vegetables eaten with a Potassium binder and about 30 grams of protein daily. At this point I was tired of trying to find food I liked. I just made a weekly pot with everything thrown in and cooked with some kind of spice. Generally it consisted of soy, some other beans, some different acceptable vegetables, some brown rice and/or Quinoa, garlic powder and olive oil to cook in. I would just get a bowl of whatever I had cooked and that was dinner. For breakfast I would drink Enterex diabetic drink and for lunch a sandwich or salad.
Now on PD I have been working on increasing my protein. For some reason I am having a hard time changing the diet back to what I was doing before high Potassium changed my diet. Generally we will go out to eat about two times a week. Those are really the only times I am interested in eating something I really like. By the way, I hate to cook. My wife has given up cooking for the most part because she works swing shift.
I haven't found any cook book or web site that provides simple recipes for a diabetic with kidney failure. I haven't found a dietitian that can help either.
You may not have the diabetic issue, but you do have a 3 year old daughter to feed in addition to your self! I would think that would make it tough to cook two different types of food.
papacat