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.