Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 , Oh my heart just goes out to you. This dialysis sounds like it is just miserable for you. I don't know why they are not figuring out your BP right. Are they working up any potential donors for you so you have a transplant on the horizon? I am just so sorry this is so hard on you. I am sending you lots of prayers and hugs. Please rest and try to take it easy. I hope you feel better soon . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Sue, You are one special Mom! is blessed to have your support. I just know it has to break your heart to watch her going through this. I hope you match for her and can give her a kidney. In a message dated 7/29/2004 6:33:17 PM Pacific Daylight Time, pegairheart@... writes: > , > Let me answer that for . The workup hasn't started yet, but the > potential donors started calling while she was still in the hospital. > In my heart, I believe that I'll be her donor. I'm ready & willing, > just waiting on the process to play out. > Sue ('s Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 , Let me answer that for . The workup hasn't started yet, but the potential donors started calling while she was still in the hospital. In my heart, I believe that I'll be her donor. I'm ready & willing, just waiting on the process to play out. Sue ('s Mom) > , > > Oh my heart just goes out to you. This dialysis sounds like it is just > miserable for you. I don't know why they are not figuring out your BP right. Are > they working up any potential donors for you so you have a transplant on the > horizon? > > I am just so sorry this is so hard on you. I am sending you lots of prayers > and hugs. > > Please rest and try to take it easy. I hope you feel better soon . > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 , " Normal " is overrated, you know, & I wouldn't recognize it if I saw it. I do wish that you felt ly again, though. Have you contacted or SLU yet, or have you been too tired & sick? I love you, Baby Girl. I'm hugging you again. Mom > After dialysis my BP was so high it felt like the back of my head was > gonna blow off, then I ate some lunch and threw it up for the next 4 > hours. By the time I left the ER at midnight I was so sore and > exhausted I didn't care what they had to tell me. It all boils down > to the same thing " I NEED A KIDNEY!! " Dialysis is so hard on my > body, I feel drained all the time and even on dialysis days I have no > energy. > > I feel like all I do is whine. Is there a point where I'll > be " normal " again? > > BRANDY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 (((((((())))))))) I'm so sorry they still haven't balanced things out for you. I hope that you are able to get a kidney soon and that normalcy returns to your life sooner rather than later. You have one wonderful lady in your mother..Hi Sue.and I know she is pushing for things to move quickly for you regarding transplant. Hang in there, while you are still breathing there is always hope. Amy Yesterday was hard After dialysis my BP was so high it felt like the back of my head was gonna blow off, then I ate some lunch and threw it up for the next 4 hours. By the time I left the ER at midnight I was so sore and exhausted I didn't care what they had to tell me. It all boils down to the same thing " I NEED A KIDNEY!! " Dialysis is so hard on my body, I feel drained all the time and even on dialysis days I have no energy. I feel like all I do is whine. Is there a point where I'll be " normal " again? BRANDY To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 , It was so much easier when I was actually there with her. I could listen to her when she wanted to talk about things, or when she spoke out in her sleep. Or I could simply sit by her bed & not say a word while she slept. Or I could reach out & touch her to remind her that I was there. Several of my new friends in this group have commented that I'm special or somehow unique, but I'm just me - a Mom who would do anything to make her child's quality of life better. I'm not any different from any of you. Thank you for your kind words of encouragement. Sue > Sue, > > You are one special Mom! is blessed to have your support. I just > know it has to break your heart to watch her going through this. > > I hope you match for her and can give her a kidney. > > > > In a message dated 7/29/2004 6:33:17 PM Pacific Daylight Time, > pegairheart@y... writes: > > > , > > Let me answer that for . The workup hasn't started yet, but the > > potential donors started calling while she was still in the hospital. > > In my heart, I believe that I'll be her donor. I'm ready & willing, > > just waiting on the process to play out. > > Sue ('s Mom) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Sue, I certainly empathize with what you and are going through. I donated a kidney to my 21 year old son three years ago, and it was one of the most gratifying things I have ever done. We were so pleased to be able to do a preemptive transplant so he didn't have to start dialysis. I hope the testing goes well and you - or someone - will be able to do the transplant soon. Betsy > , > It was so much easier when I was actually there with her. I could > listen to her when she wanted to talk about things, or when she spoke > out in her sleep. Or I could simply sit by her bed & not say a word > while she slept. Or I could reach out & touch her to remind her that > I was there. > Several of my new friends in this group have commented that I'm > special or somehow unique, but I'm just me - a Mom who would do > anything to make her child's quality of life better. I'm not any > different from any of you. > Thank you for your kind words of encouragement. > Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 , I hate to see someone have a hard time like that, but as I said before, it might settle down after a while. I've seen this time and time again over the time I've been on dialysis. It's not young people who have the ongoing problems, but more older people who are frail and diabetic. I hope it improves soon. Are you sure you're eating enough? Now that dialysis is cleaning your blood every other day, you might actually need to eat a lot more than you did pre-dialysis. You need a lot of protein, probably as much or more than you can handle, in order to stay healthy when you're on dialysis. It's possible your blood may not be acidic enough for the standard bicarbonate amount they use. Mine started out at 36. A month or so later, a neph changed it to 32. I was getting strange sensations of tingling all over and that solve the problem immediately. They also changed my potassium (K) bath, my sodium profile, etc. I've had my dry weight adjusted many times. Yesterday was my first day with a dry weight of 55.5 kg. For the past year, it was 56. When I started dialysis, it was 56.5 kg. Even though they took of half a litre more of fluid off me yesterday, I didn't feel any different, and my BP did not drop at all. I have never had low BP problems, but, I have to say, I don't hesitate to eat some salt on my dialysis days, and I don't hesitate to bring a coffee in with me (and not decaf either). Maybe you just have to eat more normally. The only immediate risk you have from eating is potassium. So that's one you don't want to eat too much of, but, you still have to eat at least the amount prescribed by your dietician. Dialysis can seem a lot harder when it's trying to remove things that aren't there in the first place. Eat, drink. Measure your fluid intake, and make sure you drink at least that amount so that you aren't always dehydrated. Everyone's different, but, unlike many others I dialyze with, I can't eat just before or during dialysis. It upsets my stomach too much. So, I make sure I eat enough earlier in the day on dialysis days, and I eat well after. There's a Mcs not far from the hospital, and I regularly stop there after dialysis for a cheeseburger. You will eventually get to know what works for YOU. My thoughts are with you... but, don't just lie there and take it. Discuss with your nephrologist. Maybe there are some adjustments that can be made. However, I'm not going to pretend dialysis isn't hard on the body. I feel drained and tired a lot of the time too. I don't know anybody who doesn't. There's a reason a transplant is recommended as the best treatment option. Pierre Yesterday was hard > After dialysis my BP was so high it felt like the back of my head was > gonna blow off, then I ate some lunch and threw it up for the next 4 > hours. By the time I left the ER at midnight I was so sore and > exhausted I didn't care what they had to tell me. It all boils down > to the same thing " I NEED A KIDNEY!! " Dialysis is so hard on my > body, I feel drained all the time and even on dialysis days I have no > energy. > > I feel like all I do is whine. Is there a point where I'll > be " normal " again? > > BRANDY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Sue, It will probably all work out. It takes a while and it can be frustrating to go through the donor evaluation process. Pierre Re: Yesterday was hard > , > Let me answer that for . The workup hasn't started yet, but the > potential donors started calling while she was still in the hospital. > In my heart, I believe that I'll be her donor. I'm ready & willing, > just waiting on the process to play out. > Sue ('s Mom) > > > , > > > > Oh my heart just goes out to you. This dialysis sounds like it is > just > > miserable for you. I don't know why they are not figuring out your > BP right. Are > > they working up any potential donors for you so you have a > transplant on the > > horizon? > > > > I am just so sorry this is so hard on you. I am sending you lots > of prayers > > and hugs. > > > > Please rest and try to take it easy. I hope you feel better soon > . > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 , I am so sorry you are going thru all of this, I can't even imagine how frustrated you must feel. I truly believe in my heart this will get better and once you get a transplant you will feel like a whole new person. You are in my thoughts and prayers. Jill > > > , > > > > > > Oh my heart just goes out to you. This dialysis sounds like it is > > just > > > miserable for you. I don't know why they are not figuring out your > > BP right. Are > > > they working up any potential donors for you so you have a > > transplant on the > > > horizon? > > > > > > I am just so sorry this is so hard on you. I am sending you lots > > of prayers > > > and hugs. > > > > > > Please rest and try to take it easy. I hope you feel better soon > > . > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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