Walk For PKD Soon Approaches!

Afternoon everyone, how has your Monday been?

I have been busy with errands, decorating my new coffee bar, and searching for writing jobs but before I did all that, I made my donation to the PKD foundation and I hope you find it in your hearts to do the same.

The Walk for PKD is coming up on the 21st of this month and 100% of each donation funds life-saving PKD research. Find a local walk or donate to help my team at walkforpkd.org.

Last year your support made it possible to fund $2.5 million for research, advance projects involving 5+ potential PKD treatments now in clinical trials, and walk the road with thousands of patients and families in 60 local U.S. Chapters.

I made my donation in honor of my mother, who passed away in 2014 from complications of the disease after 18+ years on dialysis. She was a trooper and followed all of the rules, yet still succumbed to the disease. Some of you may know that I found it in myself when I went to be tested to give her a kidney, which is just one reason why I am such an advocate for fundraising today.

PKD is a fatal disease of the kidneys, short for polycystic kidney disease and affects 600,000 people in the US annually.  Close to half the people diagnosed with PKD will end up with end stage renal disease or will need dialysis or a kidney transplant.  It can affect anyone but research shows females inherit it more than males and Caucasians inherit it more than African-Americans. Also, if you inherit the disease, your child has a fifty percent chance of having it, so they need to be tested at some point as well. Just make sure they have insurance first!

The hope is that once they figure out how the cysts in the kidney form and experiment with drugs that can inhibit or block that formation,  that a cure will be found. Please get yourself tested if this disease runs in your family will you? The sooner you know, the sooner the doctors can monitor your progress, like they do mine.  Thankfully all I have is too many cysts to count,  yet they aren’t so big they interfere with kidney function.

This is what the donation page looks like

To donate in my name, go to support.pdkcure.org and search for my name. I am only $200 away from my goal, so if every one of my generous readers/followers only donated $5…well, you get the picture. I know there are many causes that need our attention this year, it has been a frightful year with all of the natural disasters that have taken place on top of the many people struggling with these and other diseases. Donate where your heart tells you and really, I do understand. Thanks in advance if you choose to donate to PKD. You can also donate in memorial of someone you knew that passed away or someone that is currently struggling with the disease.

 

Tomorrow I will have the MRI of my neck (on an unrelated issue) and I will keep y’all posted on that outcome as well. I’m hoping I can put the surgery off until after the holidays, but we do what we have to do right? Just keep me in your prayers and I will appreciate it. Y’all have a wonderful night, enjoy the cooler weather (if you have it) and I will see you next time on the patio! 

 

PKD Awareness Day!

I am helping to spread the word about PKD today because 600,000 Americans are living with this chronic, life-threatening genetic disease.

Anyone who knows me and/or follows this blog, knows I have PKD in the early stages and started participating in promoting awareness by talking about it and walking in the yearly WALK FOR PKD.

PKD Awareness Day is today, Sept 4 so I am again trying to do my part and make everyone out there understand more about what these folks are dealing with. Since I am in the early stages, I have too many cysts to count, yet they are so far small, so they are not affecting my daily life or my kidney function. Many others are undergoing dialysis or some other form of treatment to deal with their disease.

I’m helping raise awareness by placing the teal PKD ribbon on my Facebook page, and soon you will see some links from the PKD foundation to help understand what it is, fundraising efforts and how you can help, how to talk to your doctor if you or a loved one has been diagnosed, and more. I realize that right now the focus is mainly on several natural disasters ravaging the nation right now, from the hurricane in Houston, to fires raging from California to Montana, but just take a few minutes out of your day, if you don’t mind, and say a prayer for all those fighting their own battle with this disease.

Polycystic kidney disease is closer to home than you realize.
Let’s do the math: If every American has 150 acquaintances and 600,000 Americans are living with PKD, then there are only 1.2 degrees of separation between the healthy American and person with PKD.

 

I hope you don’t mind me spreading the word and helping raise awareness, you all may or may not know that the Walk For PKD is coming up in October, so you will be seeing more updates as the time gets closer.

Everyone have a spectacular Labor Day and take a minute to think about those people dealing with all types of debilitating diseases including PKD and continue saying prayers for those on the Gulf Coast affected by Hurricane Harvey.

Day 314-Because Of You

Today I am not going to do my normal Throwback Thursday instead,  I want to thank everyone who has given to my PKD walk or otherwise supported the Foundation and ask that you join me again this year as I prepare to walk again this fall. This is one of several posts you can expect before October, I will try to make future posts more exciting and fun!

PKD Foundation

Those who know me and follow my blog have all heard my story, but for those that might be new here, PKD stands for polycystic kidney disease. Currently, my status is that I have too many cysts to count, yet they are not bothering my kidney function and I am otherwise healthy. I may have bad knees and arthritis and normal aches and pains, but that’s no different than any other 56 year old! However, as far as insurance companies are concerned, my condition is considered fatal therefore, I cannot get life insurance. Thank goodness that right now I am covered by my husband’s insurance or I might be up a creek.

It is because of you and your generous support that important research has been able to take place, research that will one day bring a cure to this debilitating and potentially fatal disease. My mother had it and died from it, I also have it, but currently,  I am not in any danger and my labwork looks wonderful, praise the Lord!

You can help me by joining a walk close to you, volunteering your time serving at one of the walks or donating money for research so that we can someday find a cure. My local chapter will walk again this October and we are currently taking donations. Be a hero again, help us beat last year’s goal and know that your dollars go 100% to projects like the ones involving 5+ potential PKD treatments now in clinical trials. Last year you helped us reach the goal of 2.5+ million dollars in science and research funding and walked the road with thousands of patients and families in 60 local US Chapters.

Register today at walkforpkd.org and if you choose to support my team, great! I am in the portal North Texas Walk for PKD as Kim Smyth (I don’t actually have a “team” yet but I will by Oct.!) Thanks in advance for any help or donation you are able to give, I realize there are many causes to support out there, I appreciate you considering ours.

If you have questions or comments, please feel free to let me know. See you mañana on the patio!

 

 

Day 281-Wednesday's Medical Minute-Time to Gear Up For Walk PKD

Well folks, I got my first email today from the PKD Foundation letting me know that it’s once again time to start thinking about the PKD Walk for a cure. Last year some of you were so sweet and helped me raise some money for this potentially fatal disease. I appreciate it and I want to do something this year to encourage you to help out again, whether that be a giveaway, a coupon or some other goodie I can dream up. Good thing is, I have until October to figure it out! Maybe some of you creative geniuses can even give me some ideas on the subject…you know, help me help you!

As you may or may not know, my mother passed away from complications of PKD after being on dialysis for 18+ years and I also have it. I discovered I had it when going in for testing to see if I could donate a kidney for her. Later on I found out that the disease is genetic and children of mothers with PKD have a 50% chance of inheriting the disease. You can check out my posts from last year to find out more, but basically, PKD is short for polycystic kidney disease. In my case, I have too many cysts to count, but they aren’t impeding my kidney function so far. I am monitored by a nephrologist (who I LOVE) and I try to eat healthy and take care of myself so the disease doesn’t progress any faster than normal.

Since you will be hearing more about this in future posts this year, I’ll cut it short and just tell you that I am already registered and can start raising money immediately. I myself will again be donating a personal pledge for myself and also in my mother’s memory. You can feel good knowing that 100% of the money raised goes to research! Go to walkforpkd.org to donate, whether you do it for my team or not is totally up to you, I do want to surpass last year’s goal however-I’m shooting for $500 this year. If you are a company, or know if one who would like to sponsor the walk, get sponsor info at: julier@pkdcure.org or call 816-268-8462, or go to the sponsorship tab at PKD Foundation page.

 

Day 37-Support a Cause Week-PKD Walk

Fall is shaping up to be very busy, with all kinds of walks and festivals to help support worthy causes. Everything from my personal health issue (PKD) to one of the most famously supported causes, breast cancer awareness.

Although I have covered the PKD Walk before, it bears repeating, since I’m trying to reach a specific monetary goal for my team-$250, not that much in the big scheme of things, but if every team walking reaches their goals, it would help the foundation so much in their search for new medicines to treat and/or cure this potentially fatal disease.

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As stated before, you can donate a little (or a little more) to my team by heading to www.walkforpkd.org/northtexas and search my name, Kim Smyth. So far, one kind blogger that follows my blog donated $10. That was very sweet. I would like to point out that if all my followers donated just $5 each, I would definitely reach my goal. I am personally donating $50 for myself and a memorial pledge of $50 for my mother who passed away from complications of PKD in 2014.

I’m going to post these causes, each day a different one, starting with the month of Oct. and working backwards to Sept. my thought being about how much time you have to get ready for each one. Tomorrow’s post will feature some kind of walk for breast cancer, (there are so many) I wanted the latest one in October for my area so we would all have more time to get ready for it. Even if you don’t live in the area, you can make a pledge/donation at the website I will be providing.

We should all do our part to help out worthy causes when we can, don’t you agree? If you can’t help financially, they always can use volunteers. However you choose to donate, with your time, or money, it will all be greatly appreciated, and you can feel good knowing you helped make a difference.

Now a bit about PKD for those who have never heard of it. The letters stand for polycystic kidney disease, it is potentially fatal because the cysts will at some point grow large enough to choke out the kidneys and at that time one needs to either go on dialysis or get a kidney transplant. Polycystic means multiple cysts. Nothing can be done currently to remove or drain the cysts, although they are always working on finding medicines to treat it. I choose to be proactive and at least eat as well as I can, that is why I live the Paleo lifestyle. My mom chose dialysis, I found out my diagnosis when being screened as a potential donor for her. By the way, every person with PKD stands a 50/50 chance of passing it to their children. Mom was on dialysis for 18+ years and eventually, her organs started shutting down one by one and she went into a nursing home and then on hospice about a month later. She lingered another week or so, at which point they made her comfortable with medications and stopped feeding her. It was so painful to witness her wither and not be able to communicate with her due to her dementia. I assume it was a very painful and uncomfortable month for her as well, although she could not express this in words. I have decided if and when I progress, I will opt for a transplant, if I’m able. I’m told one can’t even get on the list until you become more symptomatic. Currently, I have too many cysts to count but my kidney function is fine and my lab work is perfect. I was lucky to find out early enough to get on top of it, my doctor keeps very close tabs on me.

I want to help others as well as myself, that is why I became a member of the foundation and why I’m bringing attention to this cause.

Please, go to the PKD Foundation for more information about this disease and/or how you can help. I appreciate what ever you can do, and so will thousands of others affected with this disease. Until tomorrow, see you on the patio. 😊