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Comment by Marie-Agnes Cederborg on October 13, 2009 at 6:35am

The new World Kidney Day Website is there!
Please visit www.worldkidneyday.org and sign up now!

Comment by Bobbiejo Winfrey on September 29, 2009 at 7:10am

Dear Betsy,
I am sorry that you are also having trouble building muscle. I admire you for how much you have gone through and how much determination you have shown to get yourself in the best of shape possible. Are you making sure that you are getting in enough protein as this is also an important aspect in building muscle? I hope that you can find a diet and regimen that will work well for you. Is it possible that you could ask your doctor whether it might not hurt for you to see a physical therapist to help you find exercises that it would be okay for you to do since you cannot do core exercises and that would help build up muscle tone? My doctor had me meet with a physical therapist a little while after a hospital stay during which I seemed really weak and that helped me out some. Best of wishes to you and many hugs.

Comment by Bobbiejo Winfrey on September 29, 2009 at 7:02am

Thanks again, Vanja, for your encouragement. I hope that you can find a good combination of exercises that will work well for you. I agree that swimming can be a good option especially as it is easy on the joints. I probably though could not swim at the moment because I have an open wound I am trying to get to heal (it is from a j-tube, or tube that provides access to the small bowel that was removed as it was not working right). I always have enjoyed walking so that is probably what I am going to focus on first along with stretches. As I get stronger, I might try running, but I have too little muscle and am too weak for that now.

My doctors have never really given me a reason for why my entire digestive tract slowly over time just deteriorated. I have been tested for autoimmune disorders without any positives. Once I think the doctors were going to look into whether it might be a mitochondrial disorder, but once mentioned, it was not brought up again. Although they may not be the sole cause, I think that some of my abdominal surgeries that I had probably did not help, and now I have had so many surgeries I think it would hard to untangle the basic cause.

Yes, the TPN I mentioned does refer to total parenteral nutrition. I do not think that it is always so detrimental to liver or at least so quickly or to such a degree but there is always a risk. My liver just turned out to be extremely sensitive to it. I think it surprised my doctors just how sensitive it was. I probably also did not help that the TPN at that time was my sole source of nutrition.

I hope that you are doing well and I wish you all the best. Many hugs.

Comment by Vanja Celin on September 29, 2009 at 3:00am

I read about your problems with weight, Betsy. I also work on exercising to gain muscles but it's hard because I have to avoid too much strengthening. I had ascites four months before operation so my abdomen has weakened. Now I have visible belly, bud hernia and inguinal hernia. So no lifting and hard exercises. This is really punishment for me. There is no other alternative but treking every day and orbitrek every second day. Swimming is very good for such problems because of discharging all the body.
Take care

Comment by betsy on September 27, 2009 at 3:11pm

About 9 months before my liver transplant I couldn't walk. I had to go into a nursing home with a rehabilitation department to learn how to walk again so I could go back home. I knew then that my arm strength woud help me get through. With patience, and perserverance I did eventually get myself up again and walked again. I did go home, soon after I was hospitalized 22 times in a 6 month period, the last time for a month. I had ascites and was getting drained weekly, sometimes twice a week. (6 to 7) liters at a time. My problem is now after my transplant I am having a hard time getting muscle back and also getting the flabby parts toned. It's been 14 months now and I'm still out of shape. I am told not to do any core exerciese which is leaving my stomach flabby. Is anyone having this problem and if so what are you doing and is it helping.

Comment by Vanja Celin on September 27, 2009 at 12:30pm

I understand your condition about reflux and dumping syndrome, Bobbiejo. Then it's really hard to work on gaining weight. Obviously you need more time to build your body again, but don't worry, these are going to be appreciated kilograms and quality at all. I show each gram on my legs with pride although my doc say I have only five muscular fibre. But I gained already 12 kg post operation and need "only" five to seven. Hard work, I could never imagine.
And osteopenia besides. Unpleasant thing I know. It affected me also, already five years ago.
These supplements like high caloric snacks or liquid are very good. I had drunk some chocolate liquid before surgery...disgusting..I'm not fan of chocolate, but only this taste was available. And at that time I couldn't eat solid because my liver and whole system were on strike and were working so bad that I had ascites four months. Once they punctured more than five litres liquid from my abdomen. Crazy, I was breathing hard sometimes.
You say Palmer's cocoa butter, probably Palmer's Cocoa Butter Formula Vitamin E Scar Serum, it seems good. It's important you have good feeling.
I was diagnosed with autoimune hepatitis and primary biliary cirrhosis 1998. I thouhgt I will need new liver at least seven years ago, but my condition was so stable to live just normal life until last year. Your disease is also autoimune probably? Is TPN Total Parenteral Nutrition? Can be so agressive to harm the liver? But your will power so strong to give to disease beans.
Many warm hugs. Vanja

Comment by Bobbiejo Winfrey on September 26, 2009 at 7:56am

Dear Vanja,
Thank you so much for your kind words. I am sorry that you also are struggling to gain weight too. I agree that it is important to still incorporate exercise in my daily routine even as I try to gain weight because if I do not, I could become weaker and my bones too could get worse (I already found out that I have at least severe osteopenia). The problem is to find the right balance so that I do enough to keep strong and rebuild muscle but not enough to prevent me from gaining. I believe that it was the daily walks that I made myself do each day while I was on the transplant list that helped me survive the long and difficult recovery because I was so thin and weak as you were before which did really concern my doctors also.

I am thin mostly everywhere although it seems most notable in my face and abdominal area where the rib cage shows. It seems too that a weight gain of even a pound or two will first show in my face. Usually my mother will notice a difference and if I check the scale, I will have usually gained a little. The same holds true if I lose, my mother can tell by my face even if it is just a little.

I am trying to find ways to get extra protein in my diet to help rebuild muscle. Unfortunately due to reflux and an esophagus that barely contracts like it should, I can not tolerate large amount of liquids at one time, so I mainly try to get my calories through solids. One supplement that I think has helped me some is Benecalorie which has 330 calories per 1.5 ounce packet which I usually end up putting in oatmeal. I have to be careful with high fat foods because I tend to experience dumping syndrome when I do eat them.

For my scars I use Palmer's cocoa butter formula recommended by one of the doctors who often did my colonoscopies or ileoscopies when I had a temporary ileostomy for awhile after my transplant. It seems to help some.

May we both be able to eventually obtain the weight and health that is best for us. I am very glad for you that you also made it through your transplant surgery and have received this gift of a transplant. I too admire you for making it through what sounds like a very difficult time. May I ask what you received? I will be sure to keep you in my thoughts and prayers. Many hugs.
Warm regards,
Bobbiejo

Comment by Vanja Celin on September 26, 2009 at 5:27am

Dear Bobbiejo,
At first I have to tell you that you are reaaly strong person to pass throuhg all this. I admire your courage and glad to hear you are doing well.
I'm just reading about your problem around weight and scars. I had a lot of problems with weight before transplantation also. I lost all my muscles, with another words I was like I came frome concentrate camp. People stared at me at the every corner. But that's not real problem. I was so weak that doctors feared I could die because of weakness and exhaustion and I could not survive the operation. Thanks god the things turned out well. I'm now seven months post surgery but gain weight very slow. Obviously I'm not such kind of person to only lie and overfeed. I care about food quality and just don't want to eat whatever. I'm doing around my muscles a lot, and I'm wondering if to much. Maybe I lose too much calories with sport (treking above all) with regard to how many I enter in my body. I don't use to be in such condition because I was always very fit. I see your weight is even smaller. Is all your body thin or just some parts. I have problem above all with legs. They are much better now, but still thiny. When I'm looking myself and my legs I'm saying uaau, they are like before, strong and muscular. But then I place in front of the mirror and realize it's not so good. Disappointment.
I try to eat high caloric food but not hard for digestive organs. So coconut (if it's posible rather the young green one), coconut butter, seeds (flax, pumpkin, hemp, salba - Inca people eat them; in America you can get them without problems). I drink a lot of smoothies. You can make them like mix from fruits, vegetables, seeds (grind) and different nuts (grind). They are light for digestion. I have ate only raw food almost one year before transplantation. Doctor wasn't satisfied at all but it was my decision. They reproached me irresponsibility. However it was attempt to cure myself and I don't mind any effort.
About your scars do you use any ointment like silicon gel. I do but I'm not sure if help. Beside that I keep moisture with almond and caritee oil. They are very nutritious.
Best wishes, take care. Vanja



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Comment by Marie-Agnes Cederborg on September 1, 2009 at 9:28am

Too many people ignore the close inter-relation between kidney diseases and diabetes or hypertension. Worldwide, 246 million people suffer from diabetes and the figure is expected to reach 380 million by 2025. Diabetic nephropathy affects a third of people suffering from diabetes. Sadly, less than half people diagnosed with diabetes undergo a screening test.
Next Word Kidney Day will be held on Thursday 11 March 2010 and will focus on Diabetes, the leading cause of kidney failure.

World Kidney Day offers a crucial, visible opportunity to inform and educate health policy-makers, people who are at highest risk of CKD, and the general public that kidney disease is common, harmful and treatable.

Join our World Kidney Day 2010 group and come to exchange your experience and ideas that could be proposed to World Kidney Day organisers over the world.

The success of World Kidney Day across the world is only possible because of each of you!

Comment by Bobbiejo Winfrey on August 15, 2009 at 3:59pm

Dear Alice,
Thank you for thinking of me. I would have gladly accepted the pounds if I could have. My weight is staying stable which is better than losing. I will be meeting with a surgeon at the end of the month to discuss my j-tube which is leaking lots of fluids and a little bit of solids. I am hoping that if this leakage could be stopped that this might help my weight lift up some. I remain hopeful and try to enjoy each new day as much as I can. I hope that you are doing well. Many hugs.

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