|
|
 |
Reply
| | From:  ravenbleu0 (Original Message) | Sent: 5/14/2008 11:58 PM |
Hi I'm raven.. and I have PKD.. I've known about it for several years and have been folllowing my lab work for years.. I'm the genetic mutant in my family.. and my children also have PKD. The past 2 years I've seen my Creat. slowly elevate.. since I've been hooked up for several years with a neprhologist we just keep a watch.. Started on some ARB therapy to help preseve some renal function.. so I"m in the waiting stage... I try to be pro active but sometimes I feel like I"m just waiting for something terrrible to happen... Pretty much deceided that I"m not going to let it rule my life and try to make the best of things.. I work in healthcare.. specifically research.. so I'm interested in the Tolptovan study...and peoples experiences raven |
|
Reply
| | | From: Falon0 | Sent: 5/18/2008 3:52 PM |
Hello Raven, Welcome to you! I think that feeling of waiting for something bad to happen, has crossed almost everone here's mind at some point in time. I also have known for some time that i have PKD. I do try to just enjoy life, just as i am sure you are! Maybe we will never have to worry about our children or our grankchildren thinking these same thoughts! That would be wonderful. Melissa |
|
Reply
| |
Hi Ruth... funny you would mention that about children being diagnosed versus knowing they have it and having it documented in their medical records... when I found out that I had PKD the kids pediatrican kept saying that they needed to have ultrasounds to find out if they also had PKD.. for quite some time I struggled with them being "diagnosed" and having it on their "records".. I was concerned that they would be denied health insurance and life insurance.. after a bit I went ahead and had them scanned..kept telling myself it's better to know. From my perspective, I've not been denied health care.. always being a part of a larger group and at open enrollment... also being careful not to have a lapse in coverage... having PKD and having chronic renal failure is different... as I now know .. with age not only comes wisdom but more health issues. I've been upfront with employers and haven't had a problem... I've found more issues with another chronic disease that I have.. crohns- but that is currently under control with Remicade.. Since my children know.. when the oldsest was having his first child.. there were high risk perinatologists and scans to be sure that the baby didn't have it.. only time will tell there... who knows what the future holds? Raven |
|
Reply
| | | From: Bridget | Sent: 5/18/2008 5:19 PM |
Raven , welcome to our family. Thank you for sharing some of your story with us all here. I also have children diagnosed with PKD. Two of our three have been diagnosed with it. Our oldest daughter does not want to know anything about it. It has scared her very much and it is her choice to just not want to know right now. She has taken some steps in the right direction such keeping all of her Dr. appts for yearly check ups. She is aware of eating properly and getting plenty of exercise but that is as far as she is willing to go right now. Our youngest and oldest both have had a child and so far both children show no signs of PKD. I look forward to talking more with you in the future. Take care and thanks again. Bridget* |
|
Reply
| | | From: Liz_d44 | Sent: 5/18/2008 11:00 PM |
Welcome Raven, For me having a child (now a man!) diagnosed with PKD was harder than my having it. I too am the first in my family to have it so have learned as I go with great help from this group. Hopefully you have a long time to go before you reach the time for dialysis or transplant. Liz |
|
Reply
| | | From: merlin | Sent: 5/19/2008 6:18 AM |
Hi Raven-
I just celebrated my 37th birthday! I found out about my PKD when I was 25, and I am also a genetic mutant. And my son was diagnosed at 6 months, officially.
I am on the Tolvaptan study, and I strongly recommend you try to get in, even if you don't think you can.
Though my function is still good, my kidneys are so big that I was in chronic low level (and sometimes mid-level) pain. I really don't like to take medication, but every once in a while I would take a pain killer. Mostly I felt like lying down a lot, my energy was low and I was always cold.
I am doing two things which are helping immensely, and I haven't been in pain in months. One, I have been in the Tolvaptan study for a year, and my BP is lower and I feel warmer. Two, I take a nutritional supplement called Mona Vie, and my energy level is great, and I don't get sick anymore. I used to catch everything my son catches. We both take it now. It is a strong anti-inflammatory and antioxidant, and I can feel the difference.
In the last five months I have had so much energy, I started a weight lifting class and I am doing more aerobic exercise, too. It all makes me feel so much better. It's just hard to get over the inertia when you feel crummy and don't have energy.
I hope you find something that works for you!
Be well,
Gwen
|
|
Reply
| |
|
HI, Raven, Gwen and all-
Sorry to 'lurk' but- Gwen, could you tell me more about this Mona Vie and all? I need something for the energy levels. (I have full function, by you know, the pain and funny you should mention it, the 'cold all the time' and low energy issues.)
Thank you so much!
-jeanne
Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site. |
|
Reply
| | | From: VickiO | Sent: 5/19/2008 5:16 PM |
Hi Raven, Welcome to the group! I laughed when I read the line about you being the "genetic mutant". We're all genetic mutants here in one form or another. I've been there with the "waiting for something terrible to happen" feeling, too. I had to get past some major depression episodes aggravated by some financial problems. The problems are still there, but I'm learning to deal with them. I am also being proactive. My thinking is that if I'm not doing anything bad to my body, maybe the PKD won't be so bad. It has taken a couple of years to reach my healthly living goals, but I'm almost there. I say "almost" because although I quit smoking three months ago, I have now gained back some weight that I had previously lost. So now I have to get rid of the small tire around my middle again. Walking isn't cutting it -- I've got to get back on my bicycle. Just for your info, I am unable to do the Tolvaptan study because my kidneys are too small. I was also unable to do the HALT PKD study because I have "renal artery involvement". It seems like you are doing the right thing by understanding and tracking your lab work, but the best thing you are doing is not letting it rule your life. I know I would rather do things that make me happy than sit around and wait for PKD to take over. Glad to have you aboard! |
|
Reply
| | | From: merlin | Sent: 5/26/2008 8:21 AM |
Hi Jeanne-
Sorry it's taken me so long to respond. I didn't realize this was in the "introductions" section and I couldn't find it. Not the brightest bulb sometimes!
Let me tell you more about Mona Vie.
Mona Vie is made from the fruit of 19 different fruits: acai, apricot, aronia, acerola, purple grape, passion fruit, camu camu, banana, lychee fruit, nashi peas, kiwi, pomegranate, prune, wolfberry, pear, bilberry, cranberry, blueberry, and white grape. It uses the whole fruit, peel and pulp, not just the juice, so it is high in dietary fiber and has a low glycemic index. Some of the fruits were specifically chosen because they are good at regulating blood sugar.
Acai has the highest ORAC score of anything ever tested, which means that it is exceptional at scrubbing your body of free radicals. There is a ton of research around anti-oxidants and how so many diseases and the aging process itself is caused by free radical damage, so a strong anti-oxidant is a great thing.
Also, Mona Vie is a strong anti-inflammatory. Many diseases, including arthritis, asthma, diabetes, heart disease, etc., have a process which includes chronic inflammation.
How does it affect people? I have found that people who are healthy and don't suffer from disease sleep better, have better energy, and have a stronger immune system. For people with disease, especially painful diseases, people are getting relief. My mom has bad osteoarthritis, and she was able to bend and use her fingers again after a couple weeks. After taking it regularly for 6 weeks, I found that I wasn't having pain anymore, which was especially noticed when I got my period because that's when my kidneys hurt the most. A friend of mine is in her 70's, and she has had chronic asthma, and after taking it for a couple weeks she stopped using her inhalers.
People have a lot of negative opinions about supplements, and especially network marketed supplements. And that's fine. But I'm convinced that this is the real deal, not just more snake oil!
Gwen |
|
Reply
| | | From: pkdLin | Sent: 5/26/2008 12:42 PM |
| In regards to the MonaVie juice I could not find a medical study done by a reptuable research institute. It is over 28$ a bottle. There are many sites online explaining how one can sell it an become part of what is a pyramid scheme. These things in themselves would make me very suspicious. Free radicals are mostly from bad habits so I would rather just kick the bad habits. Lin. |
|
Reply
| | | From: Bridget | Sent: 5/26/2008 5:49 PM |
Lin , I also have been looking for any crediable research done on this....I also found non. It is a product made by Amway / Quixtar company. A couple of years ago our daughter called from Florida saying a couple approached her at mall claiming to have a "miracle" potion of sorts. It was called Noni juice. She called us so excited that this couple had told her they had the "cure" for my kidney disease. Heidi was devestated to find out it was just someone's way of trying to make a fast buck. I am not saying that is the case with Mona vie. There are many good products on the market to boost our energy, the question is are they safe. |
|
Reply
| | | From: pkdLin | Sent: 5/26/2008 11:57 PM |
| I didn't know about the Amway but that certainly would make sense. I did hear they had a bit of legal woes over their pyramid "plans", or a sales plan where the higher up on the ladder the more you make. Of course safety is always a concern and since it touts itself as a food product should be but how do we know for sure? It's expensive juice and highly processed so I would opt for eating my fruits and vegies the old fashioned way. Noni juice seems to have fallen by the wayside. I think most people can figure out that if something has health powers it better have somethiing to back it up. I couldn't afford it anyway. Lin. |
|
Reply
| | | From: merlin | Sent: 5/27/2008 7:22 AM |
Hi folks-
A few things... Mona Vie is not an Amway product. The company is owned by Dallin Larson. A team of doctors and scientists developed the product.
Mona Vie is not a pyramid, but it is network marketed. The upshot is that distributors make the money, not corporate executives and shareholders.
I have researched the product a lot, and while there isn't research specifically on Mona Vie, there is a huge amount of reputable research on anti-oxidants. Free radicals are not just from bad habits, though bad habits do exacerbate the build up of free radicals. While the vast majority of complex life requires oxygen for its existence, oxygen is a highly reactive molecule that damages living organisms by producing reactive oxygen species (free radicals). Consequently, organisms contain a complex network of antioxidant metabolites and enzymes that work together to prevent oxidative damage to cellular components such as DNA, proteins and lipids.
It is a safe food product, and is third party tested to make sure it is free of metals and pesticides.
I'm not trying to convince anyone of anything. I'm just trying to get out accurate information. I feel lucky to be able to take it because it is working for me.
Gwen |
|
Reply
| | | From: pkdLin | Sent: 5/27/2008 2:27 PM |
Hi Gwen, Actually everthing I've read about the sale ptiches say that it's " Mona Vie is sold through a multi level marketing business model. which is also know as a pyramid scheme, the same as Amway was/is known for. There is a huge markup and those at the top make a huge profit. It's just juices so why would anyone pay such a high price for it? There are antioxidants in lots of fruits and vegies plus the fiber and their goodness is not processed. I don't even drink much juice because by the time it gets into the bottle it's vit. c and other things that oxidate out are gone and it's not nutritious anymore. I do like to drink some grape juice because of it's health benefits but make sure I'm getting just juice and not a drink that has sugar and water added.
I think our bodies normally do a fine job of dealing with cleansing and dealing with free radicals if we eat right, get exercise, and aren't abusive such as in smoking and excessive drinking of alcohol ect... There are people that swear by things like colonics too but (IMHO) they are also not necessary. I'm glad that you like the juice and it seems to work for you. I wish I could eat more fruits and vegies because there are some really powerfull healing things in the whole pkg. that can't be bottled. I have a never used Mr. Juiceman but when I went on dialysis my diet had to change.
I don't think that the whole Mona Vie juice plan is going to work out for the companies because I don't think most people are going to be willing to shell out all that money for it. As with most things it's buyer beware. If it makes you feel better and you have better labs ect.. that's great, but I wonder if it might be the case of a placebo effect for a lot of people. I know it just plain makes me feel better to just take some time out and do something nice for myself. Good luck with the juice and post on any other benefits you haven't posted on. Lin. |
|
Reply
| | | From: merlin | Sent: 5/28/2008 7:50 AM |
Placebo or not, I feel a lot better when I take it.
I think you are right that if we eat well (and the government recently upped the amount of fruits and veggies we need to eat from 5-9 to 7-13), exercise, live in a place that isn't polluted by industry and car exhaust, and live stress free, then out bodies should do a good job eliminating free radicals.
I think that just isn't the case for most people. Most people eat very few veggies and fruits, and what they eat is not fresh, and very limited in diversity. The did a study of what parents fed their toddlers, and the majority don't eat any fruits and veggies, and those that do, their veggie of the day was potatoes (Which I consider a starch, not a veggie.). So many people are actually willing to pay a lot to drink Mona Vie, because it gives their bodies what they need and they feel better.
I live in California, and I get a huge box of fresh picked fruits and veggies every week from my CSA. The farmer was telling us that out last batch of collard greens was healthier for us because it was slightly bug eaten, which makes the plant produce more anti-oxidants to defend itself. I thought that was pretty interesting.
Anyway, not trying to change your mind, just sharing my experience.
Go eat some greens!!! |
|
Reply
| | | From: pkdLin | Sent: 5/28/2008 12:32 PM |
Gwen, Really interesting about those greens! I used to garden and am just amazed by the whole process of growing vegies,,always have been. I understand that a lot of adults don't eat vegies and fruits so it would stand to reason that their kids probably don't get exposed to them also, My kids were always fed vegies and we didn't eat out. Even at home when I served something like hamburgers vegies were on the plate. My husband used to take fruit and yogurt to work and people would tease him. He had friends who never ate any fruit and vegies, just pizza, burgers and fries, If I thought Mona Vie could
ve saved his life we would've found a way to afford it.
I'm glad it's helping you in some way. If the groceries get any more expensive I might have to start growing some of my food and of course it will be organic. I bought a few apples the other day and could not believe how much they cost now.
The best I can do is to live far away from the city and eat as much produce as diet allows. I am on dialysis so restrcted but try to eat things that are in season and also try to eat a big variety of things so I can get as many antioxidants as possible. I love the greens especially spinach ( I know high in k). Lin. |
|
|
|
Free Forum Hosting
Important Announcement
First
Return to Introductions