A Few more Families

Now that my mom has her new kidney and is doing well I would like to use this blog to tell you all about a few families who are still in need of some help. Back in November when I had the amazing fortune to gain the attention of the Free Beer and Hot Wings show. Along with many people contacting me to offer a kidney, I also received a few from people that needed one. Through this  journey with my mom I have never stopped thinking about either family that contacted me. I always felt guilty about the fact that we had multiple people offering a kidney. Selfishly stockpiling donors, hording good will kidneys all to myself. Fearful to let go of any in case none, but the last we tested would be compatible. How could I sleep at night when there were people, families, out there with none. So I promised both families that once my mom had her transplant I would do what I could to help. I have forwarded their stories and info. on to the people that so generously offered to help my mom in hope that they would still be open to helping these families as well.

Rebecca Eddings contacted me the day my letter was read on air, her husband Antoine heard my story.
He is a 37yr old father of three, and has been on dialysis for the last 6 yrs while waiting for a kidney. Rebecca, though she was a match, had melanoma (skin cancer), and there for is not allowed to donate. Other members of their family tried as well, but were not a match, so he does not have a living donor....YET..... Until he can find one he will continue to wait on a list for a compatible diseased donor to come up. Time line for this? Who knows? He has already been waiting for 6 yrs. A  Until then he will continue dialysis 3 days a week for 4 hours each day. A living donor can end this cycle. Antoine's blood type is A+, so he can accept an A+/ A- blood type or an O+/ O- blood type.

Melissa Kurek also contacted me after hearing my story. She became a single mother of 3 after loosing her husband five years ago. Her mom is now in need of a kidney, and she is not a match. She would consider a paired kidney exchange if she is able to be a donor though. Her mother's blood type is B+ so she can accept B+/B- or an O+/ O- blood type. She is located in Grand Rapids, MI.

For anyone who is willing to help either of these families in need I have put there contact info. on the donor page of this web site. You can also contact me and I will put you in touch with them.

REUSE: an organ save a life
REDUCE: the # of lives lost
RECYCLE: the gift of a healthy organ






                                          ORGAN DONATION SAVES LIVES!!!!!

Thank-You All!!!

The transplant

Today saw us up at 3:00 in the morning for the drive in to get my mom a kidney. The check-in process was smooth and anti-climactic. I'm not sure what I was expecting. Doctors and nurses urgently shuffling around, spouting medical lingo, "nurse jenny I need 2 cc's of  xyz stat!"
Their were plenty of needles and pokes, backless nighty's, hair nets, and hand sanitizer to go around though. The prep went fairly quickly. Well, all but my moms i.v. that is. The first try went o.k. but not good enough, then their was the second try which had her vein blow out, and the third with another vein blow out (not a good start), forth times a charm right. After that they hooked her up to some prednazone (not sure of the spelling on that one) and it was smooth sailing......for that part anyway.

Right about now my sister is in the o.r. having the good doc. reaching in and pulling out a kidney, the left one just in case you all wanted to know. Something about it having a longer vein and artery, and less guts to move about.

For my mom, well..... she will now look something like this on the inside. Both her kidneys will remain, but will no longer be in use, and the new one gets tucked in the pocket of her hip so it will have some protection. Amazing!

Both my sister and my mom will be able to leave the hospital by this weekend. My sister, having had the kidney removed laparoscopicly will only have about a two week recovery time. My mom will be about two month, if we can keep her still that long.
We are all excited for things to settle down, and for my mom to be back to super human mom capacity. Faster than a speeding bullet, leaping tall buildings in a single bound, bending time and space to fit her schedule, moving mountains because they aren't conveniently located. You know mom stuff.

But....for right now, I wait, and happily so. Today is a great day.

Cocktails For a Cause fundraiser:

Cocktails For a Cause

Raising money, raising awareness, and raising a glass (or two)

to help fight kidney disease. Drink sales will be generously

donated to a local transplant recipient, and the Maine Transplant Center.

Please join us at the Falmouth Sea Grill

on Saturday evening, April 14th from 5-7pm

               


















* Cash bar
                            


Well we did it!!! The date is set and the event is on. The event as you can see will be a cocktail hour at the Falmouth Sea grill on Saturday the 14th starting at 5pm. All you have to do is show up and enjoy a drink or two. Donations are made in the form of your drink purchase. You buy the drink, we donate the money. I hope to see you all there, and don't forget to forward this to everyone you know. For directions please visit www.thefalmouthseagrill.com

Fundraising for dummies

I love control, but who doesn't right?
Saying that having no control is a problem for me would be huge understatement. Its just not in my nature to lay down and take the cards that have been handed to me. If I don't like what I get, I throw it back.
Dealing with my moms kidney disease diagnosis was no different. But once you or your love one has changed diets, started the donor process, or found someone willing to, what more can be done? Well....... LOTS!!!

It looks like my mom could receive a kidney relatively soon (provided my sisters tests come back negative). Like all who receive a transplant she can look forward to paying the exorbitant fees that accompany such a procedure. Insurance will cover the transplant, and most of the immunosuppressant medication she will have to take for the rest of her life, but they will not cover all of those drug costs.

How do you bridge the gap? After all this is no minor expense. Ahhhhh....the point of this blog..... Fundraising!!!! Like all things worth doing in life, this too takes effort.

Its been a long time since I've been in school, and my job doesn't require any letter/proposal writing skills of any type, so I was about as rusty a WWII tank left in the pacific (that's really rusty). So I started where everything starts these days... on line, and it all came flooding back to me.

• First, decide what kind of fundraiser you want to have (this is the easy part), a dance, a walk/run, spaghetti dinner, bake sale, raffle, or like me, a cocktail party. Not so hard.
• Now you need to decide where you would like to hold your event, and when.
• Then how will you advertise the event? A little more difficult, but easy enough.

Next comes the real fun. Writing a proposal, and like I said, unless you do this with some regularity (which I do not), it may be something of a hurtle.

• step 1: Introduction, a quick story to grab at the heart strings and pull them in
• step 2: Why them? What are they going to get out of this? After all, for most people/business, unless they are personally affected or will gain something they usually wont get involved. Sad but true, I speak from my recent experiences.
• step 3: How are you going to make it easy for them to help
• step 4: Ending

Sounds pretty simple, and for some more practiced people I'm sure it would be, but this took me two months. Two months of outlining, writing, refining, tweaking, finessing, cramming in, scratching out, ripping out, re-writing, begging it to write itself (yup.. I talked to my paper), and finally.....sweet Jesus..... I was finished!!!
Writing that is.... advertising was is a whole other topic. For that I called and e-mailed every newspaper and radio station I could. Most radio stations never responded, but a few did. The newspapers I had better luck with, but when you're willing pay for an advertisement of course they will respond. I was able to get the Sun Journal to do an article, and I'm pretty happy with that. I will also print up fliers and hand them out all over Portland, Falmouth, Poland, and any other town I feel like littering. I will also use this wonderful new thing called social networking, if any of you have heard of it please help me spread the word. I'll be posting the info. (date/time/place) shortly.
When I was all done I had my proposal printed out and took it around to all the local restaurants, asked nicely to see the owner/manager, and handed over all my hard work. I'm happy to say it paid off too. We are just starting to discuss details so...more on that later......

Moving forward

We are finally moving forward! After the slow, but necessary process of making sure my sister and I were able donors, the decision needed to be made as to who would be moving forward. Since both my sister and I are more than willing to be a donor, we made the decision as a family. My sister will go though the testing first. If for any reason she is not able to continue, I will then continue being tested further. 

My sister has a meeting with the entire transplant team next Wednesday morning, and in the afternoon she will have an x-ray of her kidneys. This will be the first in a long line of testing to be done over the next month, and we will be sure to keep everyone up to date on the progress. We hope now that a decision has been made, and the responsibility of completing the testing is in our hands, we will move through this faze swiftly and have a transplant happening soon!!
Feeling really good today :)

Baking Soda its not just for cooking anymore

BAKING SODA, this brilliant, remarkable, outstanding, multi-tasking chemical composition is the Chuck Norris of the molecular world.  The more I read about this stuff the more I love it! I used to think it was only good for making your baking goods light and fluffy, and torturing children with when you ran out of toothpaste (stuff tastes like..well we all know what it tastes like), but it will whiten those not so pearly whites, and freshen even the most atrocious breath. So what else will this stuff do? What doesn't it do!

It will clean the heck out of your grout, take the grease off an oven, polish chrome, silver, & stainless steel, dry clean upholstery & carpets, help sooth burns & stings of all kinds, remove crayon. Wipe it on your windshield or windows to make them repel water,  put out  small fires (unless you have a dump truck full, then a bigger fire too), make a volcano, rocket, or any number of other fun science projects, turn it into clay, add it to water and keep flowers longer, clean veggies with it, repel pests from the garden with it. It will deodorize just about anything, your house, your cloths, you (for all those w/ gas this is a great product). It can soften skin, just add a cup to the bath.
It can be used to exfoliate, giving your face that much needed peel (no chemicals necessary), unfortunately it will not turn back the cruel hands of time, and no amount of exfoliating is ever going to scrub the ugly off, but every bit helps. This stuff has been used as an antiseptic, anti fungal, and antacid for years, so why am I waxing all poetic about it here? Well because in addition to all those other admirable uses, it turns out it may also stall our kidney disease, shrink kidney stones (or stop us from developing them all together), and decrease our chances of ever developing kidney disease in the first place.
 
 You heard me, Baking Soda, also known as sodium bicarbonate has been shown to stall the progression of kidney disease (in some to almost a normal level) in a study done in Great Brittan. It was also shown to help people suffering from kidney stones and several different types of cancer as well. This may not be a cure, but it sure is an encouraging step in the right direction. Don't just take my word for it though, here are some links to the study, and ask your doctor:

 http://sodiumbicarbonate.imva.info/ , http://www.m.webmd.com/a-to-z-guides/sodium-bicarbonate-baking-soda-for-kidney-stones , http://www.nhs.uk/news/2009/07July/Pages/Bakingsodaforkidneypatients.aspx , http://www.sciencedaily.com/releases/2007/04/070430094018.htm , http://www.ehow.com/how_5616960_drink-bicarbonate-soda-health.html

So when life gives you lemons, add baking soda and cure what ails you, because physics is bound by the laws of Chuck Norris.
Also........
Chuck Norris kills 99% of all bacteria...he leaves 1% as a warning.

These jokes are addicting when you have a dry sense of humor like me, sorry.

Seeing green

Ever notice how when something is brought to your attention, that something starts popping up all over? Like when you buy a new car.  Now, before you get this car you would be hard pressed to spot one. Even at the car lot they seemed to only stock a select few, always in lime green or Avon pink. However, buy one......and they multiply. On the road, there everywhere. Pull into a parking lot, and its pact full of them. Almost like your emitting a sent, attracting them to you like male cats to a female in heat, your surrounded. Think you found a unique ______. Nope, every one's got one, I've got two. You get the picture.

 Why does this happen? Is it that once you have something new, or hear a new word, your more in tune to it, and there for notice it. Is it the marketing genius of  stores everywhere that just make us all want the same things at the same time. Probably both, but it's been happening to me ever since my mom found out she needed a transplant. I'm seeing green everywhere (the ribbon color for kidney disease, everyone has a ribbon now). I have read two articles on organ donation in different papers. I saw a story about a girl who received a transplant, on the TODAY show. I've heard a few stories  about organ donations on NPR, and even a couple adds for kidneycars on there as well.

Though my mom has always monitored her kidney function, I only recall being slightly aware of her doing so. I cant really remember ever hearing very much about organ donation. It has always been there, just more as a peripheral issue. I am an organ donor, and have the mark on my license to prove it. I even donated a few cars to the kidney foundation at my moms urging ( I got more as a tax deduction than it would have been worth in a sale).  DONATE YOUR CAR www.kidneycars.com .

I'm sure the topic had been mentioned on t.v., and written about in newspaper articles numerous times, but for what ever reason it just never took hold of my attention. Now  I am seeing and hearing organ donation everywhere. The other day I even saw a flier up at work for the Great Lost Bear best beer competition that said we need your liver. Sure.... they meant for drinking, but that's not what I read. I read donate your organs (I may have edited it  little too). And now "going green" has taken on a whole new meaning. Even recycling logos I now see as donation logos. So far I have resisted the urge to tweak these slightly, and add my own changes (graffiti not really being my thing, yet) My version looks something like this.

 REUSE: an organ save a life
 REDUCE: the # of lives lost
 RECYCLE: the gift of a healthy organ
 


So the next time you see some add for recycling, or going green, think about organ donation. You'll be surprised how well the two campaigns juxtapose. I hope now that you have read this blog, you too will start seeing green, and think, ORGAN DONATION as well. Hey why bury what someone else can reuse right? Now.... do I mean organs, or am I talking trash.

Kind of morbid, but I thought some what fitting  :0)

YES!!!

YES....Who doesn't love to hear this word? Well, I can think of a few things I don't want this word accompanying.  Like maybe... yes, the boat is sinking and we need to abandon ship. Also, oh yah.... those are bed bugs. Or, yup...that loud noise you heard was your muffler falling off.  O.k., a lot of times I don't want to hear the word yes, but today it was music to my ears. Yes was the word from the transplant committee!! My mom will be able to receive a kidney transplant as soon as they have a compatible donor. Who will that be? Well, we don't yet know. My sister and I have both started the testing. We were both a genetic match (no surprise there), however my sister displayed some hematuria. She will need two more urine samples to come back negative in order for her to continue. My samples have shown above average kidney function (first time being above average anything.. I'll take it) and no sign of hematuria. Since there is such a strong history of kidney disease in our family the committee wants to be extra cautious and double up on some of the tests, so I will be tested again. Better safe than sorry.

On another note, earlier this morning I sent an up-date e-mail to the guys on the Free Beer and Hot Wings show telling them the good news. For those of you who don't know here is a quick re-cap. They are a nationally syndicated radio show. Back in November, because of a topic they were discussing, I sent in an e-mail about my mom needing a kidney. They read it on air which touched off an avalanche of responses from people willing to donate a kidney to my mom. Hard to believe a stranger would be so selfless. Obviously fantastic news for us, since we aren't sure if  the clinic will allow my sister or I to donate. Its nice to know we have options. They have been following the story ever since. Mentioning the story, and bring the topic of organ donation to their viewers attention. This morning was no different. After I sent the update they read it on air, hopefully reaching all those who came forward, and maybe inspiring even more people to consider donating a kidney to others in need (of whom there is no shortage). Any way I just wanted to say THANK YOU AGAIN FREE BEER, HOT WINGS, AND ERIC ZANE.

Still waiting

Yesterday my moms case was presented to the board at the hospital for review. It is their job to decide if my mom can receive a transplant. The last visit we had at the clinic her coordinator seemed very optimistic that she was a good candidate, so there is that. However, the wait is killing me!!! Negative thoughts swirl around in my head, the what ifs start to get the better of me. Then I try to counter with my more reasonable, positive side. I've called twice already, and left messages. I'm fighting the urge to call again, instead I sit and wait. I know they will call as soon as they know something and have a chance, but would they call already.

An encouraging visit

This Tuesday we payed our last visit to the transplant clinic before we find out for sure whether or not my mom will be able to receive a kidney. We met with her pre-transplant coordinator, Heidi Bruce, who has been wonderful to work with. She went over all the x-rays and other tests my mother was asked to complete in the last two months, and was astounded with the speed in which my mother accomplished the task (she had them done in 2 weeks). She said quite often, most people tend to not understand the urgency in this part of the process, or maybe it's a little too overwhelming, and it takes some 4-6 months or longer. Either way, without these tests completed you don't get a kidney.

  This is a hard process (emotionally& physically) for anyone going through it, and like anything it's harder for some more than others, but I still can't imagine not doing what was asked of me asap. Yes Miss Jones we just need you to get those tests done in two months, and we can then review your case and help you get a new kidney. Oh, ya sure I'll try to do that. Two months later, Ahh ...mam...those tests....we can not proceed with out them. Oh yay....sure sure....I'm on it, really. Repeat conversation 2 more times. O.k., mam, are you sure you really want to receive a transplant because we NEED THOSE TESTS!! She also told us of a recent case where a young girl, who was next in line to get a kidney, decided now was a good time for a trip to Mexico. She neglected to tell her doctor, or the transplant team. You guessed it, a kidney became available and no one could find her, it went to someone else. Can you imagine the conversation when she got home. So... Suzy.... we found you a kidney, but we gave it away because you went on VACATION!!  Now, your not expected to put your life on hold while you are on the list. Your wait is usually a long time, but when they tell you your the next on the list, maybe now is not the best time to go to Mexico. Again these limitation, and obligations are a hard reality for some to accept, and I don't mean to shit on people, but if that had been my mom I would have freaked out.

Anyway, to get back on topic, Heidi was able to tell my mom that all her tests looked good, and she's confident that the review board would recommend her for a transplant. So now we wait, (seems to be the theme) and in about two weeks we will get a definitive answer. So far so good!

As for my urine test, I haven't received the results yet. I'll be sure to share as soon as I do.

Jug O' Pee

When I first found out my mom needed a kidney, like every child would (I should hope)  I offered up one of my own.  Like every concerned mom, she said no way. Her concern was a valid one said her doctor,  but it would be worth it to test me anyway.

Fast forward a month and a few blood tests later. Turns out I am genetically compatible, not a big surprise, she is my mom after all.  I'm handed two large jugs and told that they're for the two twenty-four hour urine samples. So why all the pee? Well, they will be use to find out whether or not my kidney function is normal, or if I have, or may have in the future decreased kidney function. They will also be able to tell if I have hematuria (the presence of blood in the urine ) which is what runs in our family.

No big deal, fill a few jugs over a few days from the privacy of my own home. Small price to pay for a chance to save my moms life.  So... down the hall to the bathroom I walk, jug in hand. Then I pass Joel, and a smile cracks across his face, a chuckle follows. It's not everyday you see someone totting around a jug of  pee like it's their precious liquid. I felt like gollem and his golden ring, my precious..... it's golden too.

 After I do the deed I realized that I wasn't sure where to put it, I read the instructions again. IN THE FRIDGE!!! YUCK!!! You want me to do what. I know it's in a jug, and I did put it in another bag, but there it was every time I opened the door, my pee.

This will be gone in a few days Kelley, I told myself, and it's really not that bad. Peeing in a jug doesn't hurt, hardly a sacrifice. Again I was doing it to save a life, well worth it. But, every time I had to grab the jug and walk down the hall to my bathroom I felt just a little humiliated. Even when Joel wasn't there to have a little fun at my expense. For those of you lady's out there who have ever breast fed your baby and used a pump, you may know how I was feeling. I felt the same way every time I made the long walk, just me and my pump. I would sit in my room, cups suctioned to my boobs, brrr..shuuump...brrr....shuuump. Its amazing how defeated and humiliated one can feel even when no one is around to see. Carrying around a jug of my pee, and putting it in the fridge made me feel the same way. Why? I don't know. It's hard to escape the humor of this scene though. Me, holding my pee jug, trying to get it all in there and not on myself, or the floor. Why would you think that pee on the floor is mine Joel, my aim is great, I think it was you.
 Oh, and the little funnel (called a hat) that they give you to make it easier, yah, they forgot to give me that.  What a hilarious site, Saturday Night Live could have a field day with that scene.

 Now I wait two weeks to find out what the results are. In the mean time, my mom has finished all her tests that the clinic needs. She will be seeing her team the 10th of this month, and a few weeks later, provided all the tests look good, she will be able to receive a transplant. We will wait for all the people that came forward to return their packets and then, if my sister and I are not, we will find a compatible donor, hopefully in one of them, our heroes.