I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: flipperfun on February 26, 2012, 03:33:50 AM
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Hello everyone, you know how reserved us Brits are but I think this IHD community is amazing. The support, humour and advice given is wonderful. Thank you all.
Can anyone shed some light on my small problem? I have been on HD for 4 years now. The first year was scary but I was amazed at how much better I felt eventually, no more nausea and sickness, apart from low blood pressure problems. I was happy to feel well again. The second year a major achievement I went on my first overseas holiday and dialysed in Italy. I can't tell you how happy I was to do that. The beginning of my third year I was very unwell and prevented from travelling for 3 months. I didn't go away but that was OK as I intended to go the following year. This is the crunch really, I did go away last year to my dream holiday destination, the Caribbean. Wow, I was so happy. Since then a creeping melancholy has crept over me. I won't call it depression as it is more sadness than anything. It's as if I have suddenly woken up to the fact that this is my new life! Yes I know, I have been slow to get to this point, but why do I now feel like this after all this time?
I do constantly battle with my weight and that does get me down. I am very small and lose weight really easily but am slow to put it on again. I hate being this skinny! My blood pressure is up and down like a yo yo! High one minute then the nurses reduce my dry weight, low the next and they eventually put it back up again. They are very slow to raise my dry weight which is a bugbear of mine! This is the only thing that really gets to me but cannot believe it is this making me feel sad. Can anyone shed some light on this? How do you feel?
Thanks everyone
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The skinny problem would be fixed by a visit to America. Do you have Twinkies over there? Or Frito Lay?
Yes, the fact that dialysis will be the rest of your life without a transplant is a sobering feeling. But, it too will pass. Start planning your next trip even if it is two years away. You need something to look forward to.
:flower;
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Hi Flipperfun (heee) When I needed to put in weight I started eating roast dinners, like every day. And eating crackers with full fat cream cheese (with a binder). By the way doing D 4ever is 'not nice', and at least 3 times a week I feel like really depressed cos I have to go again, and at least 4 times a week I feel great for still being on this planet. My bp is still up and down (after 14+ yrs D) so I adjust my bp meds accordingly. Probably not much help, but I think it is normal in some people.
Good luck, love Cas
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Hi Flipperfun (heee) When I needed to put in weight I started eating roast dinners, like every day. And eating crackers with full fat cream cheese (with a binder). By the way doing D 4ever is 'not nice', and at least 3 times a week I feel like really depressed cos I have to go again, and at least 4 times a week I feel great for still being on this planet. My bp is still up and down (after 14+ yrs D) so I adjust my bp meds accordingly. Probably not much help, but I think it is normal in some people.
Good luck, love Cas
I think with you only doing D 3 or 4 times a week is why you fluctuate weight so much. When doing it 5x a week with home hemo weight doesn't fluctuate nearly as much especially with fluid intake control. If you have trouble eating I'd recommend Nepro so you at least get a good amount of nutrition. As for gaining weight yeah come over to America..I believe 1/3 of our population is overweight :puke; . If you don't eat that much during the day don't be afraid to get some fast food just watch the sodium. If you can manage to just eat fast food once and don't end up eating anything else the rest of the day you should get a good amount of calories, fat and protein. Whether or not it's good protein who knows. You can also try drinking some Sprite soft drink/pop/soda whatever you prefer..it'll add calories and is safe for kidney patients.
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Thanks everyone. The last time I visited the US was in 1997! I love the states but would find it hard to go now (emotionally) without my Mum. She's no longer with me and I miss her. She too loved travelling to the US, in fact she wouldn't go anywhere else with me!
Rerun, I've never heard of Twinkies neither do I know of Frito Lay. I will have to ask my nephew to send me some, he lives and works in Seattle, or better still go and visit him. Now that's a possibility!
Cas I love roast dinners. In fact I am making one tonight. Not sure I could eat them every day. I got told off for dropping one of my BP meds, I kept crashing so it seemed the best thing to do! I will have to learn to use my own judgement more. Good tip about the full fat cream cheese. I used to eat this but went off it a while ago. I must put it on my shopping list again.
Steve I do not know what Nepro is and wonder if it similar to Ensure Plus a milkshake type of drink with nutrients and vitamins. I have recently started taking this so fingers crossed!
I understand what you say about D 3 times a week which is my quota and that would explain the fluctuations. Yes I do drink Sprite occasionally. I adore Mountain Dew but you cannot get it here in the UK! I got hooked on it during my trips (many of them) to the states. I do occasionally eat McDonald's but have been told off because my potassium went high! I really ought to just ignore the diet once in a while instead of being a goody two shoes!
Thank you again, one for cheering me up, and two for giving me tips to gain weight. Keep well and happy everyone.
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When it comes to losing weight it can be a good thing. If you're losing muscle you need to stop it. How? I eat a lot of whey protein and/or egg whites and/or protein bars. You have to shop for the lower potassium and phosphorus brands, take binders, and my secret weapon for good health: "Glutathione Precurosr Complex" that gets the most powerful antioxidant working in your favor. You also need to exercise. Swanson vitamins sells what you need online, cheap. I love the stuff.
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Any chanc of you doing 5/week home haemo? I am doing this, and my appetite is much better because I feel so much better. Also it is up to you to dtermine and adjust your dry weight when doing this and you can travel with NxStage?
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I have been at this hemodialysis thing thirteen years! I still get melancholy and a little depressed. It IS every other day, three days a week and your eating is watched like a hawk! It gets to me!
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Thank you whamo, amanda and kitkatz.
Home haemo is unfortunately not an option for me. I live in a small one bed flat, no room for any extras! I need to win the lottery and move to a larger home! Don't we all eh?
I've just found out I can buy "Glutathione Precursor Complex" from Amazon! Brill. Thanks everyone
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Thanks everyone. The last time I visited the US was in 1997! I love the states but would find it hard to go now (emotionally) without my Mum. She's no longer with me and I miss her. She too loved travelling to the US, in fact she wouldn't go anywhere else with me!
Rerun, I've never heard of Twinkies neither do I know of Frito Lay. I will have to ask my nephew to send me some, he lives and works in Seattle, or better still go and visit him. Now that's a possibility!
Cas I love roast dinners. In fact I am making one tonight. Not sure I could eat them every day. I got told off for dropping one of my BP meds, I kept crashing so it seemed the best thing to do! I will have to learn to use my own judgement more. Good tip about the full fat cream cheese. I used to eat this but went off it a while ago. I must put it on my shopping list again.
Steve I do not know what Nepro is and wonder if it similar to Ensure Plus a milkshake type of drink with nutrients and vitamins. I have recently started taking this so fingers crossed!
I understand what you say about D 3 times a week which is my quota and that would explain the fluctuations. Yes I do drink Sprite occasionally. I adore Mountain Dew but you cannot get it here in the UK! I got hooked on it during my trips (many of them) to the states. I do occasionally eat McDonald's but have been told off because my potassium went high! I really ought to just ignore the diet once in a while instead of being a goody two shoes!
Thank you again, one for cheering me up, and two for giving me tips to gain weight. Keep well and happy everyone.
Your potassium could have been elevated from the french fries at McDonalds. Keep in mind potatoes are high in potassium and need to be slow cooked to remove a good amount of the potassium. As for the Nepro I had mentioned it is similar to Ensure but the Nepro is made specifically for dialysis patients so you don't have to worry about getting too much of this or too little of that vitamin. Quite pricey but I try to get a case for my wife whenever I can. Like Whamo said protein is very important. It helps maintain muscle and helps the body recover and fight off infection. Try eating anything turkey or chicken. I usually get ground turkey or chicken and make tacos or burgers with them. Davita recommends a protein powder called Body Fortress. You shouldn't have any trouble finding it online.
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Can you try out PD?? some people can and some people can not (or don't want to)
I can not even begin to tell you how many problems I had while on HD, not to mention I think I had EVERY single one of the side effects of HD-ESRD and once I started PD ALL have vanished with the exception of insomnia >:(
plus I can now eat and drink pretty much WHATEVER I want (no phos still though) and traveling becomes so much more easy especailly on CAPD b/c its so portable, funny story.......... my boyfriend (that handsome guy in my photo :guitar: ) and I love to go antique shopping and we went to one of the areas largest shops in NY and I had to do a treatment so my boyfriend is 6 feet talll so I made him stand outside of the car holding my drain bag to speed up my fill ;D you cant do that with HD hell you cant do anyting without the entire center knowing where and when you are going.............. the heck with that!!!
please note that I LOVE CAPD and strongly encourage people to at least try it out if they can do it!!!
I have seen such an amazing improvement in my overall health since starting CAPD.
now I also know that people can not or dont want to do PD either and I can respect that, this is just my :twocents;
good luck
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O tbarrett2533 I completely agree with you loving CAPD, I did that a couple of years and loved it. Then I could go on APD, and found that absolutely wonderfull, so if you get a chance you could try that. Its the same system but without the changes during the day. Just changes during the night which the machine does for you.
Keep strong, good luck Cas
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O tbarrett2533 I completely agree with you loving CAPD, I did that a couple of years and loved it. Then I could go on APD, and found that absolutely wonderfull, so if you get a chance you could try that. Its the same system but without the changes during the day. Just changes during the night which the machine does for you.
Keep strong, good luck Cas
I will never try out APD... sorry to say that it just does not fit into my lifestyle.... I enjoy going out to late night bars, casino trips, overnight weekends, and I dont even sleep at night (or during hte day either..... I have insomnia) I feel that APD would make dialysis-ESRD once again be in control of my life...... perfect example: "tracy wanna go grab a few drinks tonight?" me, "Oh no I am sorry I have to be home by 9pm so that I can hook up to a machine for 8-10 hours in order for me to continue to breathe." NOPE this is just not for me!!!!
I am in control of dialysis with CAPD, dialysis is not in control of me as it would be with APD.
I am lucky b/c my treatments only last from start to finish 15-22 minutes (inclduing gathering supplies) so my treatments last just over 1 hour a day vs. 8-10 hours a day with APD and being tied down to a machine (it reminds me of HD....oh how I hated that :stressed;)
I feel that if one person does not have a little over an hour to do their treatments then they really need to look at what they are doing that is so busy!!! not to mention a machine in my bedroom and alarms, and being hooked up with cords being all over me... I like to have relations with my man to (when I want to, and cant be "oh hunny hold on while I unhook." ) talk about planning your ENTIRE exsistance out..... eww :puke; its not for me.............
Just typing 8-10 hours being hooked up to a machine makes me cringe!! So I can not even understand what it would be like to actually have to do it!!!
I am also lucky that I can go HOURS with no treatments (exchanges) and still not absorb (the longest that I have gone is 24 hours and still did not absorb.) Now I do not make a habbit out of this, nor do I suggest anyone else do it, but I am lucky in that aspect!!
I am afraid that APD is not for me at all.......... I like how portable CAPD is
Now I am also very respectul for the people who enjoy it and can live it just fine to fit into their lifestyle, hell some people LOVE in center Hemo and boy when I hear that I literally want to jump through the screen and punch some sense into them..... but hey to each their own and if it aint broke then dont fix it ya know :cheer:
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fair enough tbarrett, I hope you keep feeling as good, as you do now for a long time to come. O, and Flipperfun do you like yogurt? Good for protein, and with syrup or sugar, nice calories
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TB is right about PD. It is an excellent modality and it is done at home. But if Flipperfin has no room for home hemo supplies, she certainly will not for the PD supplies. More room is required for PD than NxStage Home hemo. Um, Id probably say about half more!
Good looking men you have there with you TB. You go girl!
lmunchkin
:kickstart;
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Good looking men you have there with you TB. You go girl!
lmunchkin
:kickstart;
I am a very lucky gal!!!!! :guitar: >:D