Oh the temptations

Since Christmas in right around the corner I thought I would share some kidney friendly recipes, and web sites where you can find some more.

This can be an especially difficult time of year for some. Watching everyone indulge (read gorge) themselves with such treats as honey glazed ham, mashed potatoes, squash, stuffing. Not to mention all the cakes, cookies, pies, chocolates, eggnog, and all the other irresistible treats that will be dangled in front of our faces. Hard enough for anyone to resist in the attempt to avoid a bulging waist line, now imagine being someone who, because of medical restrictions can NOT stray from their diet.

So how can we help so everyone can join in on this epicurean event? With a little planning it can be more than just palatable, it can be delicious too. Be sure to have a little something for each course.

A great way to start is by letting them bring something that they may already like to make. Then find out what their particular restrictions are and go from there. Who knows you may find a fantastic variation on an old favorite. Here are some tasty recipes I have found.

Breakfast:
Breakfast sticky buns: 16 servings, 2 slices per serving
1 packet active dry yeast                                    3 to 3 1/2 c all-purpose flower
1/4 c warm water                                               1/2 c unsalted butter
3/4 cup rice milk, heated to a simmer               1 package(4 servings) butterscotch jello instant pudding
2 tbls sugar                                                        1 tbls ground cinnamon
2 tbls canola oil
Dissolve yeast in warm water. Mix warm rice milk, sugar, and oil and cool to lukewarm. Add 1 1/2 c flour, yeast mixture and stir together. Add enough of the remaining flower to make a soft dough. Turn out on a lightly flowered surface and knead about 8 min. until dough becomes smooth across the top when it is shaped like a ball. Place the dough in a lightly oiled bowl, cover with plastic wrap, place in a warm spot, and let it rise about 15 min. Punch down, knead out the bubbles, and shape into 16 balls. Melt butter add butterscotch pudding and cinnamon together. Dip each piece of dough into the mixture and place into a pre sprayed, oiled, non-stick bunt pan. Cover and refrigerate overnight. In the morning bake at 350f for 40 min or until the dough is browned on top. Let cool, and flip out of the pan.         

Frittata:
8 eggs
1/3 c rice milk                                      1/4 tsp ground sage
1/3 c chopped green peppers                4 vegetarian sausage patties, browned, cooled(optional)
1 tbls chopped chives                            and diced
3/4 tsp dijon mustard                            vegetable oil spray
1/3 c chopped onion                             1/3 c diced swiss cheese (optional)
Whip together all ingredients except the spray. pour into a skillet and bake in a 350f oven for 15 to 20 min or until firm.

Fruit plate: a mixture of some or all of these fruits suggested serving is 1/2 c
blueberries, raspberries, strawberries cut in 1/2, pineapple sliced, cherries, red grapes, and apples sliced

Finger foods:
Horseradish spread:
6 tbls reduced fat cream cheese              1 tsp worcestershire sauce
2 tbls sour cream                                     1 tsp mrs. dash onion herb seasoning
1tps horseradish

cream both sour cream and cream cheese together. Add other ingredients together and serve with Melba crackers(bagel chips), carrot sticks, cucumber sticks, cauliflower, red pepper slices

Filo cups:
3 sheets thawed filo                                                                             cooking spray or drizzle evoo
2 tbls melted unsalted butter                                                               1 tbls mrs.dash onion herb seasons
1/2 med summer squash, onion, zucchini, and red pepper diced        Parmesan cheese
1 inch mini muffin tin
Roll out filo and butter each sheet, layering them while buttering. cut into 2 1/2 in X 2 1/2 in squares. Meanwhile, dice and saute your veggies with the oil and seasonings. Place filo squares in small inch muffin tin and fill with veggie mix, and sprinkle with Parmesan cheese. Bake in a 350f oven till filo is browned, about 15 min.

Ham and turkey are fine to cook as usual (turkey is better if salt is an issue for your loved one)

Side dishes:
Mashed potatoes: these need to be started the night before. Serving size can be up to a cup

1 sm. head cauliflower chopped and boiled                    white pepper to taste
5-6 med sized potatoes peeled diced and leached           mrs. dash onion herb seasoning(if desired)
3-4 tbls unsalted butter                                                    1/2 tbls garlic and onion powder(not salt)
2-3 tbls sour cream                                                          each if desired and not using mrs. dash                                                          

To leach your potatoes(this is very important) peel and cut into chunks. soak in a pot of water over night, changing the water several times. This cuts the potassium by a third. Boil the potatoes as usual, they will cook a little quicker. At the same time boil the cauliflower till tender. Mash both potatoes and cauliflower together. Start by adding 1/2 the cauliflower at first along with the pepper and other seasonings if desired. Then add the sour cream and butter one table spoon at a time. Adding the ingredients this way helps you find what tastes best to you. I tried a cauliflower mash once as a mashed potato substitute and did not think it was even close. By chance, with my leftovers I mixed the two and came up with this. When mixed with the right portions of potato and cauliflower I couldn't tell that it wasn't all potato. The cauliflower also helps to moisten the potatoes without having to add milk or lots of butter.

Glazed carrots: 1/2 c serving size
 2c carrots, sliced 1" thick                      
1/8 tsp salt
1tbls sugar                       1/4 c apple juice
1tsp cornstarch                2 tbls margarine, melted

Cook carrots in water until tender. Mix together sugar, salt, ginger, apple juice, cornstarch, and margarine. Pour mixture over carrots and water in the pot. Stir until thick.


Deserts:
Easy Pumpkin Cheesecake: portions:8  serving size 1/8         1/2 egg substitute
one 9-inch Nilla wafer crumb pie crust                                    1/2 c pumpkin puree
1 egg white                                                                               1 tsp pumpkin pie spice
2  8-oz packages cream cheese, softened                                 8 tbls frozen nondairy topping
1/2 c sugar                                                                                   (like cool whip)
1 tsp vanilla extract

Preheat  oven to 375f. brush pie crust with egg white and bake for 5 min. Reduce oven heat to 350f.
Combine cream cheese, sugar, and vanilla in a lrg. bowl and beat with mixer on high until smooth.
Beat in egg substitute. Add pumpkin puree and pumpkin pie spice and blend until smooth. Pour pumpkin mixture into pie shell and bake 40-50 min. until center is set. Cool pie, then refrigerate.
Cut into 8 slices, and serve with 1 tbls of whip topping.

I hope these give you all a place to start. There are lots of sights out there for more recipe ideas. A great place to start, and my favorite is www.davita.com . They have a great section called kidney-friendly recipes. www.kidney.org has a bunch just click on kidney disease, then a to z heath guide, then nutrition diet, and finally kidney kitchen. Its a lot of clicking but the recipes are worth it.  www.kidneywellbeing.com which is chef Laurence Keogh's web site, and also has great food. He is a chef who had a kidney transplant, and created a free cook book available to down load. I also always have a link to these on the blog. Enjoy!!

I hope you all have a happy holiday.

We'll take more than just your kidney

Just because you may not be ready to part with a kidney doesn't mean you can't donate. If you'd like to, the Kidney Foundation would love to take your car off your hands. Thats right, they want your car too!

No...not the family car (although they would take it if you're offering). You know the one, it's been sitting in the driveway taking up space because it costs too much to fix. The one you're planning on trading in, not because they're going to give you anything for it, but they'll at least get it out of the driveway. Yup...they want that one!

Here's how it works. You contact the Kidney Foundation at www.KidneyCars.org, and they come and take it off your hands, usually in a matter of days. It doesn't matter what condition it's in, trust me. I've donated three cars over the past ten years (I like to drive my cars into the ground). One had a blown engine. Not my fault, well maybe...who knew you should check oil levels? The other one I would have traded in, but they practically laughed me off the lot with it. The last one I donated had been sitting in my yard for four years, and consequently needed so much work done after that amount of time I couldn't afford to fix it. It had been a lovely home for some mice though, till the snake moved in.

Why would they want your junk you ask? Well, they don't, but some scrapper at an auction does. The Kidney Foundation takes them all to auction and sells them (for scrap if it's like mine), and viola, money.

And for you, a tax write off. Once your car has sold someone from the foundation will call. They'll let you know what it sold for, and send you some papers (and a cool bumper sticker) you can give to your accountant (you keep the sticker). He/she/or you can then turn this into a tax deduction, aka less money you owe the government. We all know why this is good. Win win.

You see, it's not just your kidneys they'll take off your hands, though if your offering you do have a spare.... Your car can make a big difference too.

So the next time you get a new car, or notice your trashy neighbor(me) has too many cars not moving from their yard, give the Kidney Foundation a call. And don't forget to tell your friends... and that neighbor.

Right now my other cars are saving a life.

You never know

When I was young my mom would always call me Mr. Magoo. This was because no matter where we were or what I was doing, walking, riding my bike, I payed attention to were I was going...oh ya never. My feet may have been moving forward, but I was almost certainly not looking in that direction. She would tell me to stop lolly gagging and pay attention before I ran into something or got lost (which I did with some frequency). I would tell her I was paying attention, and I was... to everything but where I was going. I like being aware of my surroundings. She thought I had my head in the clouds, and sometimes I did. I also like to stop and smell the roses. This comes with consequences, I'm still always bumping into things and getting lost. I can get lost anywhere, ask my boyfriend and he'll tell ya I get lost in the Maine Mall. If you're not familiar with it, its TINY!!

My point? Ahhh....yes there usually is one, but I like the scenic route remember.
The other day I was headed into the transplant clinic to have my blood tested for compatibility, and as I walked through the door (and yes, maybe I was looking, well... not forward) I bumped into someone as they were leaving. Though I smiled and apologized, they still seemed pissed. Were they, I don't know, but they could have said no problem, or its o.k.... right? Instead they kinda just grumbled something, then kept going. At first I was annoyed, I mean I hadn't done it intentionally. I did make eye contact, smiled said sorry and meant it.

Then I remembered where I was, and what door it was that I had just walked through. Truth is, this door isn't like most other doors, this door, is different. If your going through it, its likely because you or someone you know and love is not well. And while for right now, I feel I have a reason to be hopeful, others may not. I have no way of knowing what the person I bumped into heard behind these doors today. What they were thinking, and what they were feeling. But I did have the benefit of  knowing were they had just been, and that perspective made a lite flick on. Having this knowledge made it easy for me to understand their reaction at the door. Often, we don't have this benefit.

Now, since the smart phone explosion has enabled us to indulge our narcissism 24-7, it's easy to forget that we share this world with others. Gasp...its not all about me all the time! What I'm trying to get at here is this. The next time someone doesn't hold the door for you and it slams in your face. When you hold open a door for someone, and that someone doesn't seem all that thankful. Or when you receive any number of un-courteous gestures that seem just plain rude in the surface...try to remember, and I will too. We have no way of knowing what they may be going through, what's on their mind, or what kind of day they just had. It's no excuse, but we've all had bad days, and I'm pretty sure we've all been "that guy" before.

 So for this holiday season I'm asking each of you to put on that big toothy smile the next time you and "that guy" cross paths. Maybe they really are a huge D, and in that case nothing usually pisses them of more than someone being nice when they want to be an ass. Or... who knows, it might make a difference in their day. Maybe it will be just the thing to make them smile again too :)

Oh ya...one more thing. Try putting down that smart phone for a minute or two (after you read my blog of course). Stop and smell the roses, or heaven forbid take the long way home. You may like it!!

Taking steps tward donating: is it right for you?

Donating organs saves lives!!! Kidneys in particular, since more than half of all transplants needed are kidney transplants. The good news here is that unlike other organs most people are born with two kidneys, and provided they are healthy we can continue to live long healthy lives with just one. So, if we were fitted with a spare why not give the other one to someone who needs it. Think of all the people we could save. All the family's that would get to keep their loved one around a lot longer.

 Wait.... Sounds great but, before you put me on ice and yank out my kidney how do I know if its right for me. Well keep reading, hopefully this will answer some questions for those of you who might be interested. For those of you who are on the fence, maybe this will be the nudge you need to jump off. For those that feel donating an organ just isn't a decision they can make,( lets face it its a lot to ask, and having someone take out a perfectly good organ is some scary sh..t) a little information is good for everyone. Getting the word out for a worthy cause is never waisted breath.

Steps to living donation:
Do you even qualify? Here are a few easy questions:
-are you physically fit & in good general health
-do you have or have ever had: high blood pressure, diabetes, heart disease, cancer, or kidney disease
If you said yes to the first two questions and no to the others then you passed the first stage to be becoming a living donor. Next is to contact a donor registry if you don't already have a recipient in mind. You will be asked to contact the recipients transplant center and they will get you started by sending a packet of info. and some papers to sign. You will need to send these back along with the last three years of your medical history. Once you have filled these out and sent them in they will decide if you may be a possible donor. This does not necessarily mean you'll be able to donate.

How will I know if I'm a match?
Provided you have had a regular check up within the year the next step will be a blood test for genetic testing ( a kit gets sent to you with instructions for the lab). This step can take up to two or three weeks. All tests at this point(including the genetic testing) will be still be done by your primary care physician and a local lab, but will be covered under the recipients health care coverage provided the testing was ordered by the transplant clinic.
What they are looking for with the blood test is a compatible blood type, and if it is, your blood will then be spun with the recipients blood. This is done because your DNA will always be present in your kidney even after it has been transplanted. The doctors look to see how the recipients immune system reacts to your DNA. A positive match means the recipients immune system has killed off all the donor's blood cells during testing, and would do the same to the donor's kidney (not so positive).
If the test is negative then the donors blood was not attacked and testing continues.

Next test... HLA or human leukocyte antigens:
This test identifies the markers we inherit from our parents. Though we are made up of thousands of pieces of DNA, this test will only need to look at six individual pieces. The best match would be a"six antigen" match, which means the donor and the recipient match all six. This doesn't happen very frequently, and usually will only happen between siblings. The cross-match only determines if the donor's kidney would be accepted by the recipient. Only after that is determined will the doctors move forward and test if the donor is healthy enough to donate.

After these tests have been performed and a potential donor has been selected the next series of evaluations begins. This includes the required laboratory tests, which are:
-a twenty-four hour urine collection
-blood work
-a urinalysis with urine culture that will indicate your kidneys are healthy and functioning normally

If every thing goes well you will be scheduled for a physical and history check, done by the transplant surgeon and nephrologyst(kidney specialist). You also meat with the transplant social worker and living donor coordinator at this time. Blood will be drawn and you will have an electrocardiogram(EKG).

Assuming you make it past all of that you will then have a three dimensional CT of your kidneys and a chest x-ray. They do the CT to make sure you have normal sized kidneys, that you have no kidney stones, and to determine the number of blood vessels that supply each kidney.

Great... you look very healthy....we'll be taking that kidney now please... O.k. so maybe they wont put it quite like that but, after all that testing the rest goes fairly quickly. It's just finding a time that works for everyone.

The primary goal of the living donor evaluation is to minimize risk to the donor. No one wants to cause another person to be ill!! The goal is to save people not injure them. If at anytime during these tests they where to find something wrong they stop testing, and send all the information they have to your doctor and the proper specialist. Any testing after this however, would not be covered by the recipients insurance.
As a donor you also have the right to stop testing for any reason, and end the donor process.
During part of the living donor evaluation you will meet with an independent living donor advocate. This person is here for the donor only, and is available at any time.

How does living donation affect the donor?
Studies have shown that one kidney can be more than enough to keep the body healthy. Living donation does not change the life expectancy, but, as with any surgery there is risk of complications. After surgery, the living donor can expect to lead a normal healthy life.
Recovery time is fairly short because the surgery is done laparoscopically. Most people are out of the hospital within 2 days, and back to work and daily life within 2-6 weeks depending on how quickly your body heals.

Many long-term (20yrs) studies have followed donor patients and found that they are no more likely to suffer from kidney failure or shortened life span than the average person who has not donated. There is lots of research that supports this, and that talks about how many donors have an above average life expectancy. This is due to the fact that donors are picked because they are the healthiest people.

I'll refrain from going on any longer. There is so much info. I could ramble on for weeks, but if you would like even more info. I have some great links so check em out. Class dismissed.

Getting schooled

   A short history:
The science behind organ transplants has advanced enormously over the last fifty years. In 1954 the first successful kidney transplant was performed from a living donor to his identical twin. Since then doctors have been working tirelessly to find new and less invasive ways to transplant kidneys and other organs. Researchers have also been inventing countless new immunosuppressive medications. The advancements that have been made with these medications in the last 25 years has had a tremendous impact on the outcome for transplant recipients. As a result transplantation has proven to be a viable option for people suffering from end-stage organ failure.

  The Kidneys:
The kidneys are located on both sides of your spine, behind the liver and the stomach. Only one healthy kidney is needed to live a normal healthy life. Most people are born with two kidneys, however some people are born with only one and some people have three. Kidney disease will rarely affect only one kidney, so end-stage kidney failure affects both kidneys equally.

The Kidneys play a very important role in our body. They:
 -clean and filter waste products from your blood
-regulate minerals such as potassium, sodium, calcium, phosphorus and other chemicals in the blood that regulate the blood ph(acid/base balance). This is why watching your diet can play an important roll in helping to lighten the load on your kidneys.
-control water/fluid balance
-regulate red blood cell production, and blood pressure control
The kidneys also filter waste material and excess fluid from the body, making urine.When kidneys work properly they keep waste products in the blood at a healthy level. When the kidneys do not work properly they lose their ability to filter waste products from the blood. Excess waste and chemicals start to build up in the body. This is kidney failure. There are many causes of kidney failure, the most common are: diabetes mellitus, hypertension(high blood pressure), glomerulonephritis, and polycystic kidney disease. There are only two forms of treatment, dialysis and transplantation.

 Dialysis is where a machine is used to filter your blood for you. This can be done in a hospital or at home. Its very time consuming, needing to be performed 3-4 days a week for 4 hours each time.
  Kidney transplantation:
There are two types of transplants: living donors and deceased donors(only available for dialysis patients with few exceptions).
The one-year success rate for recipients of living transplant is 95%. The success rate for recipients of deceased donor transplants is about 85-90% at the end of the first year after transplant. Because of the  better outcome with living donor transplants, the transplant program strongly encourages living donation. The functioning transplanted kidney is about five times more effective in replacing kidney function as compared to dialysis.

  Advantages of living donation:
-With a living donor there is more time to find the best possible match among donors.
-Kidneys that come from living donors are usually in better condition and begin to function immediately after transplantation.
-Transplant surgery can be scheduled at a convenient time for both donor and recipient rather than an emergency operation.
-The recipient is able to start taking immunosuppressant drugs three days before the operation which decreases the risk of rejection.
-The recipient will not have to take as much anti-rejection medication after the transplant as they would with a diseased donor. Therefore likely experiencing fewer side effects due to medication.

  Steps for receiving a living donor:
Before donors are evaluated, the recipient needs to be evaluated to be sure they are healthy enough to except a kidney.
-They will likely receive a physical exam, discuss meds, take a blood test, get an ekg and chest x-ray. The doctor may also have a tissue typing done. Counseling may also be recommended by the doctor before they go any further.
-More tests will then be done, such as: hepatitis vaccine, mammogram and pap smear (for women), gallbladder ultrasound, bladder ultrasound, heart echo, heart stress treadmill, cardiac catheterization, blood vessel ultrasound, dental exam, and more.

  I'll stop right there for now. Quite a bit to digest I know, but I have been receiving lots of questions from people interested in the process. Next time I hope to cover a little bit of the donor side. This is not a step by step but just an overview for those who are curious about both kidney disease and donation.

Thanksgiving & giving thanks

 

This Thanksgiving I have a lot to be thankful for. Due in part to the Free beer and Hot wings show who read an e-mail and possibly changed my moms future. Also, to all the people who, with selfless generosity offered to give a kidney to save a strangers life. Yours is a gift unlike any other.

 A few short months ago I listened on the phone, feeling helpless as my mom told me she would need a kidney transplant. Two days ago we sat in the transplant clinic and listened to the devastating statistics of how many people with kidney disease actually get that kidney. Not many!!! In 2010  90,000 people were on the waiting list for a kidney, only 828 transplants were performed. Not very encouraging statistics, but motivating ones.

Then yesterday came. I sat in the car on my way to work and listened to the fbhw show as usual, but this time I was listening to them talk about me!!! The adrenalin stared pumping, my hands got shaky, and I had a smile on my face 10 miles wide that I haven't been able to wipe off since. I sat in my car as the e-mails came in. All total strangers willing to help save my moms life simply because they heard she was in need. To all those people I wish I could clone you, what a better world we live in because we share it with people like you.

The rest of the day I hugged and kissed just about everyone I saw. Nothing could have ruined my day. I called my mom and told her the good news. Its hard to relay how excited we both were, no words seem adequate. Jubilant, overjoyed, elated, euphoric pick one, we felt it!  Then, ever the reassuring mom she said, see I knew everything would work out o.k..  I can't wait to play the audio from the show so she can hear for herself all the responses.  

So, this Thanksgiving day as we sit around our table, you can rest assured we will have all of you who cared enough to come forward and offer a kidney in our hearts. And all the rest of you who came to my blog, read it , and maybe passes it along will be there too.

many thanks eric, freebeer, and hotwings!!!

       Holly S!!!!!  Never in my wildest dreams did I imagine this response when I e-mailed their show yesterday. I am absolutely overwhelmed by the amount of people who are willing to donate. Thank you all....I just can't say it enough.
      I'm going to get right to the contact info. since this blogging thing is very new to me, now I feel I'm not set up so well. Please hang in there w/ me. The best way to get in touch with me is through my e-mail, so go to suzyq_k@yahoo.com. Please feel free to also contact my mothers transplant coordinator, Heidi Bruce at bruceh@mmc.org . You can call her at 800-870-5230 or 207-662-7193 and let her know you are interested in donating to Nancy Harris. They or I will send you a packet of  information on donating. Again THANKS to everyone one who is interested in donating and the guys on the show. You have made our day!!!

Meeting moms team

    Take two... I had this whole blog written last night, only taking me oh.. about an hour to write( I'm a 2 finger typer) when poof into the Internet black hole it all goes with the touch of the enter key. How, why, I haven't the faintest, but gone all the same. With this lesson in my back pocket you can be sure I'll be preserving this laborious blog every 10 minutes!!!

    Alright, with that bit of venting out of the way I can begin. In a few days mom will be meeting her transplant team for the first time, and I'll be tagging along for the ride. I was extremely excited when I learned my mother would have access to a large team of varied professionals. The team consists of : a nephrologist, transplant surgeon, pre-transplant coordinator, nurses, social worker, pharmacist, and dietitian (who I've been longing to talk to).

   The passel of questions I have amassed for each of these individuals is so endless it makes my head spin! I feel like a tiny bird bobbing on a sea of infinite query. This list is so big that when my mom saw it she jokingly asked if I knew that the meeting was for only one day, and that she may also have a question or two for them. My response to this was, don't worry whatever the question, I'm sure I've got it covered. Maybe I should let her read off the list when we get there. I don't care who asks the questions, as long as someone does, besides people who know me say I can be kinda pushy, and yes maybe a little long winded too.

   

    As time moves closer to the meeting the more anticipation I start to feel, and I can see some angst in my mothers face as well when we talk. Daily life can be a great diversion, but only for so long before these times of reality come knocking on the door again, reminding me of why I am getting lost in all these questions. Yes I'm excited to meet these people that will hopefully save my mom, but the weight of reality ways heavy as time narrows. There is no escaping the reason we need to have the meeting, mom needs a kidney. 

nutrition: getting the facts on the kidney diet part 2

 When it comes to kidney disease, diet just may be the one aspect where you can feel some control again. As I've mentioned before, with the help of a nutritionist and your doctor you will be able to get a grasp on what nutritional guidelines should work for you. From here based on your food preferences, the nutritionist can help you create a menu, and advise you on tasty alternatives to some of your favorite meals. Its also an invaluable asset to have someone that can help you decipher the the sometimes cryptic looking code of certain recipes offered by the nephrologyst or other related cookbooks.

      The biggest problem I've had was figuring out how to get the nutritional facts and necessary portions from a regular recipe, so I know how much can be served, or if I need to tweak a recipe somehow to decrease a certain element. For example most people with kidney disease need to track their intake of protein, potassium, phosphorus, and for some salt as well. These need to be mitigated because they are preeminently hard on the kidneys. The goal is to reduce the amount of work for your kidney, and sub sequential damage caused by these elements in our food. Decreasing these elements is the diets goal. So knowing  how much of this stuff is in every meal is important, but can also create a deluge of information coming your way.  

    Another frustrating thing about the diet can be the fact that the portions can be very small, and you may not feel that you are getting enough to eat. This is also where your nutritionist/dietitian will be a great help. They will be able to come up with menus for you to follow so you can be confident you're getting all the nutrients you need, along with enough calories so you aren't feeling hungry all the time. This may all seem like a lot of work, but if it can stall kidney failure keeping people off dialysis and/or needing a kidney, I think its worth all the effort and is a small price to pay.                                                            

     There are lots of lists to be had giving the nutritional breakdown of food items, some you can get right from the nephrologysts and others from web sites such as http://www.kidney.org/. Look under kidney disease and then a to z health guide. This web site has all kinds of very helpful information, like all kinds of great recipes with their nutritional breakdown included. I have also found a number of websites and cookbooks for people with kidney disease. I will try to link them all, some I have already, but here are a few to check  out.                                                              

kidneywellbeing.com, sknutrition.worldpress.com are both web sites for Laurence Keogh who is a chef who had a kidney transplant, and has created a free cookbook you can download off these sites.  

                    

The mayo clinics web site also has a few under mayoclinic.healthinformation.low.phosphorusdiet

 aakp.org/aakp-library/food-for-holiday or if you have a hard time accessing the site this way, try going to aakp.org ,look under my holiday food list in the aakp my health section. 

ehow will also have some good ones just go to ehow.com/way_5157456_renal-diet-recipes.html 

                      

nutrition: getting the facts on the kidney diet

   When my mom told me about her kidney disease one of the first questions I asked was did she have a special diet that she needed to follow. She told me her nephrologyst just told her to watch her protein intake, keeping it to about 6-9g each day, and
she now also needed to be careful not to take in more than 2000mg of potassium a day as well. Other than that, nothing.
   With this in mind I started to search the web for recipes and cookbooks. I wasn't having much luck, but was coming across
some books and articles about a kidney diet. These spoke of how with the right changes one could potentially delay the decrease in their kidney function and also stave of dialysis, in some patients indefinitely if caught in the early stages. Wild claims to say the least, I know.  My interest was piqued, but I was very sceptical!
   Thus the research began. I only looked at sites that where either written by a doctor, nurse, professor, or was supported by one. At first I didn't find a whole lot, but what I did find seemed to support these wildly optimistic claims. The better I got at refining my search the more information I found on this theory. Turns out it isn't much of a theory anymore. Though not always a sure thing, and there is still the test of time for a lot of it, it appears that if one follows the dietary guidelines your dietitian and nephrologyst set for you, you can greatly reduce the load your over worked kidneys are carrying. Assuming your doctor mentions these facts. My moms didn't, and talked about a dietitian, but only as an afterthought and not putting a whole lot of insistence behind it...irresponsible I thought considering someones life was in her hands. You can imagine my confusion when I thought back to the previous conversation with my mom about her diet restrictions, or lack there of. I remembered how her doctor, other than a few suggestions didn't seem to put quite the same emphasis on diet as all these other people seemed to. Quite intelligent people, like a professor at Yale university, and several from johns Hopkins, even some of the sites her nephrologysts office themselves had given me had strict guidelines to follow. So how could it be that HER doctor didn't seem to get this memo. I was furious!!!! I called my mom and asked to speak with the doctor, she made and appointment.
    After the meeting, and a conversation with my mom about her previous nephrologysts I came away with the feeling that just shy of waiting for you to hit the transplant point, most doctors follow the, call me when you're ready for dialysis and then we can do something practice. I almost lost my sh*@#t. Had any of these doctors put more emphasis on this restrictive diet approach and less on drugs and wait and see approach she may not have ever gotten to the transplant /dialysis stage. Please take this as a warning....BE YOUR OWN ACTIVIST!!!! Make sure you do your research and push your doctors...hard, and if your still not satisfied, change doctors.

information overload on the information super highway

Sorting through the endless masses of information on the web can be a donting project. Though it is an invaluable resource, I almost always find myself overwhelmed when searching a new subject. Embarking on the arduous task of seeking information about kidney disease was no different!!I seem to go through this cycle every time: get entangled in the jungle of info., forget about what it is exactly I'm looking for, get frustrated, and then...I start making lists. Lots and lots of lists!!! Its cathartic, granted, most of these get lost or end up in the wash but it still makes me feel better.. It gives me a place to start, and a visual place to go back to once I enter the labyrinth that is the web.
The transplant clinic gave me a great place to start by giving us all packets with dozens of web sites. From there I started sorting through the ones that were the most helpfull, and crossed off the ones that were redundant or not applicable. Then of course I split these into lists. Web sites that gave general info. on the disease, and useful facts. Web sites that would help with fundraising. Web sites that offer support to those having a tough time, and need to speek with others going through the same thing. My favorites are those that talk about diet, and how changing your diet is important, offering up advice on meal plans and listing the foods to eat and stay away from. I think I like these the best because they enable you to feel more control over your health, and offer a glimmer of hope. I have started to put a link to some of the sites I find most helpful, and hope that my research will help some of you find some great sites.
It certanly is scarry going through the process of fighting a disease(especially one where the best "treatment" is a transplant, certanly not a sure thing or a cure), but information is power, and having access to all this knowledge at my fingertips makes me feel so much more powerfull in this fight.

A path is chosen for you

The phone rang, it was my mom... I just talked to the doctor she said, and my kidney function has dropped to about 20 percent. I'm going to need a kidney transplant! I felt like I had plunged into ice water, the breath was sucked out of me like a vacuum. I choked and tripped over my words whispering what little I could manage to get out.
Always the nurturer she repeated "it's going to be o.k. kelley, it will all work out." I continued to cry. When I was finally able to, I asked what now... can I talk to your doctor... are you on a list.. how do I find out if I can donate. The questions are endless. She said she wouldn't take my kidney, I was going to need it!!! That's the problem with moms, they're always there for everyone else. Giving help and advice, but when it comes time for them to take help that is given they don't know how.
So here we are, no longer faced with an option the path it seems has been chosen for us....no looking back...full steam ahead...WE NEED A KIDNEY!!!