Archive for March, 2010

The Big Push for a BMI of 35 or lower….

March 29, 2010 Leave a comment

At my suggestion, to avoid getting removed from the RWJ Transplant list, Mark called the dietitian over there. First of all, the dietician said that Mark was not in immediate danger of being removed from the list, and he was not sure why Mark got the letter in the first place. He also talked to Mark about ways to lose the 20 pounds needed to get him to his goal BMI and ultimately put him at the weight required to get him on the “Active Status” list.

Many of the things that the RWJ dietician told him contradicted the things that the dietician at DaVita told him to do. For example, the dietician at DaVita told him to have a lot of protein with every meal to keep up his red blood counts. While this is definitely important, the larger amounts of protein are adding a lot of calories to Mark’s diet, which will keep him from losing weight.

The RWJ dietician told Mark to step up his exercise regimen. Mark is using the treadmill three times a week. He was told to exercise 4-5 times a week, for longer periods of time (instead of 20 minutes, he should do it for 30 minutes), and he should also set a goal to walk at a faster pace, and possibly even with an incline. That extra boost of exercise will help him burn calories and keep his appetite in check. He also told Mark that a good workout will keep his metabolism “up” for two hours after he stops exercising. He told Mark that he needed to cut his calorie intake, eating lower calorie, higher fiber, and leaner protein meals. He feels that if Mark does all that he suggested he will lose the 20 pounds very quickly.

Mark decided to create his own diet. Go figure. I have never quite understood how Mark diets. He does these “one step away from starvation” diets, loses weight quickly, but ultimately ALWAYS gains it back (plus some). His diets are always very low calorie and not even close to being nutritionally sound. But he is a grown man, and I have learned that nagging him or telling how to run his life is not going to change what he feels, thinks, and knows is right for him. I tried to discuss his kidney disease with him years ago when the disease was in the early stages, but he kept telling me that he was fine.

So you see where this ends up? Mark is right. Mark is always right. And he will always be right… until he admits he was wrong — but by then it is too late. I tried to make suggestions to him during his last bout of gout/neuropathy. I suggested that it might be related to his gout. He swore it was just neuropathy. I told him to try using the Advil and/or the prednisone. He didn’t want to do it. After three straight days (and nights) of itching, he finally took Advil… and guess what? It helped a bit!!! And when he used it regularly and took a burst of prednisone, the attack went away! Gee, how about that?

Anyway, his new diet for this week consists of an orange, apple, and fruit juice mixed with orange soda. This will be his breakfast and lunch. For snack at dialysis, he will have some Doritos. And when he gets home from dialysis, he will have a can of Campbell’s Mega Noodle Soup (aka sodium in a can….). I can’t really see how this is nutritional. He lacks protein. He has no calcium in his diet at all. It is too much sugar which will make his blood sugar too high. But this is what he wants to do for about two weeks. He says he is going to step up his exercise, and continue this diet, and hopes he will lose the 20 pounds he needs to lose. He will probably lose it, but once he goes back to his regular diet, he will gain it back — just as he always does.

I mentioned that some of my low fat cheese would be a good snack. It is high in protein, low in calories. He would have no part of it. I suggested yogurt. Nope, won’t eat it. He is going to stick with the fruit and soup diet. On the positive side, the RWJ dietitian did tell him that for the short-term, lower protein and a less than nutritionally sound diet would not do him any harm. I just don’t think it is too healthy. I worry mostly that his blood sugar will get too low… but he says he will be fine.

I suppose that I have no other choice that to let him do what he wants… after all, he is a 47 year old man. Of course, I do wonder how different our lives would be now if he had actually listened to me… or his doctors when it came to his weight, kidney disease, and diabetes. I know I am not the “Poster Child for Healthy” but I certainly do not have the problems that he does. I know I need to lose weight… and I need to follow my Weight Watchers again. I also know how hard it is to lose weight. Eating good meals and yummy snacks is one of my favorite things. But I also do not want to get kidney disease or heart disease or any other nasty disease. I wonder if I really kick in the “Weight Watchers regimen” if it will jump start Mark to eat better and healthier? I know when I lost 40 pounds on Weight Watchers, he still ate his normal foods while I was eating healthier foods… and much small portions. But there were times when he would eat healthier with me, and I did cherish those times. He did say that we were not going to eat “fast food” this Friday night. He always stops at Wendy’s (or chinese or Burger King) and picks up dinner for us. Usually it is a Value Meal of burgers and fries. We even get burgers for the dog — who is also in need of more exercise and less food! If he stopped at Wendy’s I would usually get a small chili and a side salad which would fit into my Weight Watchers regimen. But it was hard to watch him eat salty fries and a burger dripping with mayo! I think the best idea is for us to stay out of those “take out” places. I can do that, but can Mark? He has a soft spot for BAD FOODS! I can snack on fruits and veggies… and I can be pretty satisfied. Mark doesn’t really like that. He prefers cakes, cookies, and sweets.

If this big push for a BMI of 35 works, I guess the next step is to maintain it… and eventually get to a healthier weight. The BMI of 35 is the HIGHEST at which they would allow a transplant. That would put him at a weight of a 258. That is still not a very healthy weight for someone his height. Supposedly, a BMI of over 25 is indicative of being overweight. In order for Mark to be at a healthy BMI of 25, he would need to weight 185 or less. I am not sure that Mark can ever maintain that weight – even if he were to achieve it. But that would seem like a very healthy weight to me.

Mark says his ideal weight is about 240-250. At that weight, he is still considered obese. I am thinking more along the lines of a weight of 210-220 lbs. would be good for him. He would still be overweight, but at a much healthier weight. He is at such a high risk for stroke and heart attack, especially at his current weight.

During one of the snowstorms this season, I realized just how out of shape Mark really is. Just shoveling for a few minutes made him winded and tired. It was kind of pathetic. Now this particular snowstorm dumped about 14 inches of snow. We have a double driveway (that can hold about 4 cars). I park my car in the garage, and his car gets parked in the driveway. I started shoveling the driveway while Mark cleaned off his car. When he was done, he helped me shovel, but like I said, in about 10 minutes, he was wiped out and done. I have found that in most snow storms, I wind up shoveling about 80% of the driveway and walkways. Most of the time, he is just standing there watching me… or watching the neighbors. My hope is that he will lose weight and get in shape. Or if that is not in the cards, I would like a snow blower!!!

Well, I think I have babbled enough… time to post this and move on with life!!!

Categories: kidney disease

A Bout of Gout (Ugh!) and too many TV shows!! (LOL)

March 23, 2010 Leave a comment

Things here are pretty good overall. They can always be better, but then again, it can ALWAYS be worse!! So having said that, life is copacetic!

Mark is feeling well overall. He is doing well on his dialysis. He did however have a BAD case of neuropathy last week. He gets severe itching in his feet (usually one foot at a time). Sometimes the itching turns to burning that he says feels like a hot poker it being pushed into his foot. Sounds lovely, huh?

There are no cures for neuropathy. Some people have luck with Cymbalta or Lyrica. Although they are prescribed for other conditions, they have been helpful in the treatment of neuropathy symptoms. Mark has tried both. Cymbalta made him very nauseous, so we never found out if it worked. The Lyrica did not help him, and it made him very tired. When he has bouts of neuropathy, he uses a steroid cream for some temporary and minor relief.

A few years ago, Dr. Richard Goldstein treated Mark for his intense itching. At that time, we had no idea what was causing the itching. Initially Mark thought it was athlete’s foot. But Dr. Goldstein diagnosed it as a flare up of Mark’s gout that causes inflammation which irritated the nerves in his foot, and that caused the neuropathy.

It sounds a bit far-fetched but over the years, we have found that treating the symptoms of gout often cures the neuropathy. This particular bout of gout was not typical with pain in the joints, so Mark never suspected it as the cause of the itching.

After three days of itching, I suggested he start the Advil and a burst of prednisone. Guess what? It knocked it out in 36 hours!!! Who knew that it was a bout of gout that caused all of this? We are just both glad it is over — for this time!! He is miserable and itching. And I am miserable because he is miserable and itching!! LOL At night he will scratch his foot (awake AND in his sleep), and I wonder if I am in a cheap motel in one of those vibrating beds!!

And now onto why I think Mark watches too much television. A few days ago, Mark’s cousin and childhood friend contacted him on Facebook. His cousin (also named Mark…. so this could get confusing!!) told him that he worked as Federal Agent for Homeland Security in California. His cousin also told Mark that he knew all about the renal disease, and told him not to use it as an excuse! In his last correspondence to Mark, he told him that he knew about his weight battle and that he was facing the possibility of being removed from the transplant list due to not meeting the weight requirement.

Mark, being an avid television watcher and having an active imagination, made a comment about information that federal agents could obtain. And how it was amazing that his cousin knew all of this!! I said, those are health issues that are regulated and protected by HIPAA laws. I said that while he MIGHT be able to find out information, it would not be health related. Mark swore up and down that as a federal agent, his cousin had access to this sort of thing.

I think Mark just loved the idea of “Federal Agent” and he thought of all of the movies and television shows about what government agents can do and the whole “big brother is watching” scenario.

I hated to burst his bubble. But I had to tell him that a simple google search of himself and/or me, would bring up any number of links to something that I have written on the internet. I have posts on forums, groups, and similar places. I told Mark that, even though he wanted to believe that his cousin “pulled his records”, the most likely scenario was that we were googled and my personal website (which contains a link to this blog) came up in the search. The other scenario is that his cousin stumbled on this blog. My money is on my personal website which linked him to my blog.

Mark is going to ask his cousin how he found out about his health issues. I know Mark wants to believe that his cousin had access to personal files on people, but I am a realist, and I think google was the key factor here!!

Categories: kidney disease

High BMI + Time (could) equal Transplant List Removal

March 4, 2010 Leave a comment

Things have been quiet here, which is always a good thing. Mark has been feeling pretty good these days. We use a rating system in regards to how he feels. It works on a Scale of 1-10 w(with 10 being excellent). Lately he has been feeling about an “8-9” which in my opinion is darn good.

He does complain about being tired. I don’t think it is directly related to the ESRD but more so to the fact that he does not get enough sleep. He is one of the people in the world who needs a good eight hours of sleep each night. He has always been like that for as long as I have known him (and it is over 10 years now).

I, on the other hand, can get 5-6 hours each night, and I am good to go. Anything less than 5 can cause me to be tired, cranky, and have an incurable case of the “yawnies”. But I have never needed 8 hours of sleep a night. If I sleep more than 8 hours a night, I feel drugged! I will feel sluggish and suffer from brain fog!! Definitely not something I need to do!

Mark did get his “Report Card” from DaVita. All looks good except that his phosphorus has been a bit high. They put him on Phosphorus binders (I think the med is called Renvela or something like that). And his phosphorus came down to almost normal. The PTH was also slightly elevated but Dr. DeSimone (the nephrologist) says that is due to the high phosphorus, and it will come down. He is relatively pleased with Mark’s progress and his overall health. So am I!!

Robert Wood Johnson’s transplant center sent Mark a letter about his inactive status. He is inactive due to the fact that he still needs to lose weight to get his BMI at 35 (which is the highest it can be for a transplant). When we went to RWJ in early December, they told Mark that he needed to lose 20 lbs to get his BMI to 35. I thought that would be easy for him since he had already lost close to 60lbs. But since December, Mark has only lost 5 lbs.

RWJ sent him a letter saying that DaVita told them that his dry weight is 273 lbs which gives me a BMI of 37. He needs to be at a weight of 258 to get to the BMI of 35. So he still has to lose 15 pounds. The letter also said that Mark needs to contact the dietician so they can work out a way for him to get to the goal. If he fails to lose the weight in a timely matter, they will remove him from the transplant list!! That was enough to scare me, but not scare Mark. We worked so hard to get him to lose the weight, and make the appointment with RWJ, and get on the list. And we were thrilled when we got the notification that he was put on the transplant list — even if he was inactive.

I will NOT be happy if they remove him from the list. His reply to all of this is “Don’t worry, I will lose the weight”. I know he can, but I hope he is taking this all as seriously as he did when we first started the process of transplantation. I guess time will tell.

I can’t force him to lose the weight. I can’t nag him or anything. He is a grown man, and it is all up to him. But at the same time, this dialysis schedule does affect our normal life and routine. And it takes away from our “family time”.

There is not a whole lot that I can do thought. I am just the wife. Sigh…..