Friday, September 27, 2013

Blowing out the Candles and Making a Wish


Who do you see when you look in the mirror?  And what do you notice about yourself – perhaps beyond just your reflection?

Let me tell you what I’m thinking about …



I celebrated my birthday a week ago.  And I mean celebrated – for about a week and a half.  Maybe two.    Well, to be fair – I was traveling for work on my birthday weekend, and away from home, so I guess you could say I took advantage of every opportunity to observe the occasion.  And happily I have friends and family and colleagues who indulged that – and a husband who made it festive every time I was home during those two weeks, and even sang happy birthday to me long distance when I was in New Orleans working on the actual day.  So I’m lucky - but that’s another story.  This is mostly about birthdays, aging and how you look at and think about things.

I really do C-E-L-E-B-R-A-T-E every passing day and year.  Yup, I’ve got the wrinkles, crinkles and (some) grey hair as well as a few of those other delightful and less glamorous effects of gravity over the years. Nothing works quite the way it used to or looks that way.  And of course, there's all the kidney stuff.  But as I often say – it is what it is: nothing less, but certainly nothing more.  I think other things have come forward to compensate: I don’t get mad or flustered as easily as I used to.  At least I don’t think so.  I laugh a lot more often, (and loudly), sing in public (with enthusiasm) and never mind looking silly (a lot).  I’m a Clown, for Pete’s sake.  Maybe best of all, I also push harder for the things that are important to me, and worry a lot less about what others think or what they might say.  I think I have arrived fully at me, and I am okay with that.  I celebrate and embrace it.  Happily, there are others who like me the way I am,  a few even love me, and that’s good too.  (You know … and there’s also a few who don’t. Oh, well – as Rick Nelson sang in “Garden Party”:  “… you can’t please everyone, so you’ve got to please yourself. “)

But I do know some folks who moan and groan over each passing year and live in dread of the advancing number that is their age.   You know - it IS just a number.  Really.   Why would you let it interfere with where you are in life and what you are doing?  Or spend even a second of your precious time worrying about it?  It’s not like you can change it!

The way I look at it, the one who celebrates the most birthdays and gets to the biggest number where years are concerned – wins. 

I know too many people who have been denied that. 

If you were to ask me to what I owe this philosophy of life – I guess I’d say it’s a lot of things.  Mostly experiences that have taught me that you have to live and enjoy every day.  Because you never know.

I get reflective around my birthday too, in a “grand scheme of things” kind of way – and so I add to my ongoing bucket list.  What do I still want to do, haven’t done, would like to try or get to see or experience or become?  Okay, maybe I won't make it to “Concert pianist at Carnegie Hall.”  (All that practice, practice, practice.)  But I check a few things off as “done” and I add a few more on all the time.    I always think I will never have enough days to live to accomplish all that I want.  For heaven’s sake, I have 1987 items on my Amazon wish list alone!  I’d have to live to be 300 to actually get through them all!  But I do like to think about that.  We all know there are never enough hours in the day, or days in a lifetime.  Ever. 
 
Thinking about that, I found this calculator that tells you how many days you have been alive.  So on my birthday this year – it was 20,089 days.  That's  a lot. And counting.  A lot more to come, hopefully.  It made me think of the beautiful song from the Broadway musical Rent: “525,600 minutes – Seasons of Love.”  Thinking about how we count our time.  We all want more of it always; it’s our most precious commodity.  I say celebrate it.  

 

Why spend any of our time - our years, our days, our minutes - in a place of worry or anxiety, being sad or depressed.  Especially about our age.  Yes, I know we can feel all of those things with the very real challenges any of us can have, but I think it’s important to try not to dwell there.  It isn’t as if any of that changes anything or makes it better – its time invested in nothing.  Dorothy Belle described it well in her piece on being the “Old Lady:”

if you're going to have to be old, you'd might as well be fully alive while you're being it. The capacity for joy and invention lingers for a good many years, even when all you look like is just a wrinkled old thing.

So meanwhile, do enjoy—madly enjoy—being 25, 33, 40, 48, 55, or for that matter 60 and beyond. It all really is exceptional. Don't waste a minute of it worrying about the passage of time. Time, I assure you, will rush past on its own even without your worry to hasten it.

Good advice.  Like a lot of things, it’s all in how you look at it.  I also love George Carlin’s routine on aging.  He starts:

Do you realize that the only time in our lives when we like to get old is when we're kids?

 If you're less than 10 years old, you're so excited about aging that you think in fractions.
 
         "How old are you?" "I'm four and a half!" You're never thirty-six and a half. You're four

         and a half, going on five! That's the key.

I think he’s right.  So I can hardly wait until sometime late in March when I can celebrate my birthday “and a half.”  A whole new occasion to mark and a reason to have a party.  Hope you celebrate one too - and remember to make a great wish when you blow out those candles.  And smile when you see that face in the mirror.

Take care and stay well ... Kathe



 

Friday, September 20, 2013

Summer into Fall, thoughts and reflections...



Happy Friday once again Kidney Warriors, today I wanted to share my thoughts on writing the blog so far. It has been very cathartic for me to share my journey with all of you. A few weeks ago I was out having brunch with a friend of mine and she asked " Isn't it weird to put your entire journey out there for anyone to read ?" and my reply was "That's exactly why I"m doing it, if I can help just one person who is dealing with this same illness then it's all worth it." Sharing my personal experiences and knowledge has felt like a cleansing of my soul. It has given me some perspective into the fifteen year struggle I have had with chronic kidney disease. And it wasn't until I started to put it to "paper" that I really realized this. 


And as we change from summer into fall I wanted to thank each of the nearly 3,000 who taken the time come to read the blog entries and leave comments. When I first started doing the blog I remember saying to Kathe from Northeast Kidney "I feel like I'm talking to myself" thanks to all of you I have changed my mind. I'm hoping you are getting as much out of it as I am in writing it. The last six weeks have been some of the most challenging of my entire life with the passing of my father. And the blog has been a great distraction and just another reason the blog has been so therapeutic for me. 

I am heading out to Cape Cod for a much needed vacation and will have guest bloggers all next week. I look forward to catching up with you again on Tuesday October 1st. And will leave you with some brilliant images from prior trips to the Cape. I hope you enjoy them....








Take care all you Kidney Warriors and keep up the good fight! 

~Kidney Blogger

Tuesday, September 17, 2013

Make Someone's Day!



Since our next topic of discussion will be kidney transplant, I wanted to talk about the need for organ donors and the need for more awareness about organ donation. Currently there are 119,610 candidates in United States waiting for lifesaving transplants and 97,610 of those are waiting for kidneys. Everyday we lose 18 patients to the battle against chronic kidney disease. This is simply unacceptable and something needs to change. So what's one thing we as kidney patients can do? We can raise awareness about living donation. Since there is such a shortage of deceased organs for transplant this may be the best source to help save and improve the lives of so many waiting. 

The fact is over 6,000 friends, family members and complete strangers stepped up to be living donors last year. And this year we need ever more because the list keeps growing by the minute. Every ten minutes a new patient is added. What does it take to be a living donor? A living donor must be eighteen years of age or older and in a good physical and mental health. Each potential donor must go through a full medical and psychosocial evaluation. There are several medical conditions that would prevent someone from becoming a living donor such as uncontrolled high blood pressure, diabetes, cancer and HIV. Also a psychiatric condition which requires treatment may prevent someone from becoming a living donor as well. It's important that a potential donor be fully informed of all the risks associated with donation. This is a decision that needs to be made completely voluntarily and without guilt. 


There are so many positive aspects of living donation including the ability to save the life of the transplant candidate and the sense of pride knowing that you made a huge impact on the live of another. Giving them the chance to return to a "normal" life and allowing them to pursue their lives dreams. Some benefits to doing a live donor transplant include the flexibility to schedule the surgery when it's best for both donor and recipient. Most live donor kidneys start to work immediately which eliminates the need for additional dialysis. The biggest advantage to a living donor transplant is it cuts down on waiting time and spares the patient years on the waiting list, right now its an average of three years waiting for a kidney. 




The ways I have helped raised awareness for organ donation have been; to participate in Kidney Walks, speaking at the Kidney Patient and Family Awareness Day, using Facebook and creating my own kidney disease awareness page, and of course writing this blog. I feel it is the responsibility of every kidney patient to do either part to help raise awareness. I also feel its important to help push the awareness of living donation because of its huge potential since there is such a shortage of deceased organs for transplant. 



Before I sign off for today, I wanted to make all my readers aware of an event being held by one of our guest bloggers, kidney transplant recipients and World Transplant athletes Robin Lataille. She is doing a fundraising event to help her get the U.S Transplant games next summer. So if your in or around the Sturbridge, Mass. area she is holding a bake sale @  Tractor Supply 178 Main St. Sturbridge from 9 to 6 pm. on Saturday and Sunday this weekend. Please if your in the area stop by and help with this worthy cause. She is also looking for anyone who would like to help bake please email her at robilat@charter.net if your interested in baking.

I want to thank you again for joining me on this journey, I look forward to your questions, comments, or concerns.

Keep on fighting, you Kidney Warriors!

~Kidney Blogger

Friday, September 13, 2013

All Things Kidney #2

Welcome to another Friday edition of "All Things Kidney." Today I would like discuss two exciting events in the kidney world. First is the "The Kidney Project",which when completed will be the first implantable, bioartificial kidney. And the second one is the "Catwalk for Kidneys" another Northeast Kidney event which has become one of their most popular annual events.

One of most exciting advancements in renal replacement therapy is called the "The Kidney Project." The Kidney Project is a project to develop an implantable, bioartificial kidney. This project brings together a remarkable team of scientist, engineers, and clinicians. The project is directed by Dr. Shuvo Roy PhD at UCSF and the mission of this project is "to enable end stage renal disease patients to live longer, healthier lives free from dialysis." Their goal is to develop a renal replacement therapy that will replace dialysis without the need for immunosuppression drugs. The team is hoping to start clinical trials between 2016 and 2017.


As a dialysis patient, I'm very hopeful that this project is competed and is made available to all dialysis patients. It is one of the most promising developments which offers an alternative to dialysis other than transplant. And since there is such a shortage of organs for transplant this will be an incredible option for many patients suffering from CKD.  You can get more information on "The Kidney Project" on Facebook at The Kidney Project or online at http://pharmacy.ucsf.edu/kidney-project/.

The 3rd annual "Catwalk for kidneys" will be held this year on October 13, 2013 at the Saratoga Hilton in Saratoga, New York.This fun filled event features local models, family member models, kidney patients models, and kidney professionals models as they strut their stuff down the catwalk to raise money and awareness. And also gives a glimpse into the latest Saratoga fashion.


Each "model "will share their connection to kidney disease or organ donation as they walk down the catwalk. You can also enjoy a fantastic brunch, shop for unique jewelry and more, and participate in a silent auction. I attended last years event and it was a blast. The variety of unique items for sale was great and the stories of each model really pulled at my heart strings. I recommend bringing some tissue with you, your gonna need it. This is a fabulous way to spend a Sunday morning. For more information call 518-533-7880 or email carol@healthykidneys.org. Tickets can be purchased at www.healthykidneys.org or by calling 518-533-7880. 

 I hope you will join me there!  Thanks for joining me again on this journey and I look forward to all your questions, comments, or concerns. 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger




Tuesday, September 10, 2013

Dialysis wrap up


Over the last few weeks we have been discussing the various modalities of dialysis. These choices included; in~center hemodialysis, home hemodialysis and peritoneal dialysis. It's important for every patient to educate themselves so they can make the best decision for their lifestyle. And the best thing about this is we have options! Living life on dialysis is not easy but choosing the right method can help ensure the best clinical outcomes and survival rate. Over the last 5 and a half years, I have lived life on a dialysis machine and the ability to do dialysis at home has made a huge impact on my treatments. The advantages of doing home treatments have been; fewer infections avoiding hospital stays, more freedom and independence on my personal schedule, and the ability to travel.


So far we have discussed the logistics of doing dialysis and now I want like to talk about the emotional aspects. Dialysis can completely change your lifestyle and often brings a feeling of helplessness and depression. The adjustment period in doing dialysis can be scary as you realize your body no longer works like it used and you need ongoing medical treatments. It can also affect your personal relationships. As it can be hard for family and friends to adjust to your illness and deal with your new lifestyle restrictions. Dialysis can also make it difficult to keep regular employment due to the associated fatigue issues. This has been a huge lifestyle change for myself. As I have not been able to work for a very long time. This can be a lonely place to be.

I have combated this by surrounding myself with people who try to understand what I'm going through and have allowed me to educate them on kidney disease. I have been blessed with a strong support system of family and friends. I would also recommend reaching out to find a support group, like Northeast Kidney's "Kidney Club". It's a great way make contact with people who are in the same situation and can really relate your what your going through. 

With the shortage of available organs for transplant dialysis is a necessary evil in the lives of  those battling ESRD/CKD. If you live in an area that offers dialysis options you should take full advantage of them if your area does not than insist they do! Talk with your nephrologist and demand access to these options. You can shape your dialysis life so become actively involved in your care. 

Thank you for joining me on this dialysis journey, I look forward to your questions, comments or concerns. 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger







Friday, September 6, 2013

All Things Kidney

Happy Friday Kidney Warriors! Each Friday I will be posting about "All Things Kidney" which will include events for The Northeast Kidney Foundation and current events in the kidney world. Some of the upcoming events for Northeast Kidney include the Fall 2013 Walk/5K  for Kidneys. These walks/5K's are a wonderful way to help support your local kidney community. All donations are used to support all those waiting for lifesaving kidney transplants or living with chronic kidney disease in the local areas that the walks/5K runs are held. These fun filled family days are a admirable way to come out and show your support. 

The events will be held in the following locations: 

Ithaca Walk/5K for Kidneys will be held Saturday September 28, 2013 at Cass Park.

Oneonta/Cooperstown Walk for Kidneys will be held Sunday November 10, 2013 at The Clark Sports Center. 

Walk over the Hudson for Kidneys will be held Sunday October 27, 2013 at The Hudson State Park in Poughkeepsie.

Please contact Northeast Kidney for information on how to register and setup your walk team today. You can also find great tips on fundraising ideas. Please contact them at www.healthykidneys.org or email them at info@healthykidneys.org .


This year I participated in their 10th Annual Kidney Walk in Albany. It was so touching to see all the supporters who came out to walk and raise awareness.


*My 2013 Albany Kidney Walk Team*


*Sidney Kidney and "Team Wheeler" at Albany Kidney Walk 2013*



These Walk/5K events allow patients, families, caregivers, and kidney professionals to come together to raise both awareness and funds to help find a cure for chronic kidney disease. I hope you will register and form a kidney walk team of your own.

So I hope you will return each Friday to see "All Things Kidney" and keep following me on this journey with chronic kidney disease. Next Friday we will be chatting about The Kidney Project and the Catwalk for Kidney's another Northeast Kidney event. 

Thank you again for joining me this week and as always I look forward to your questions, comments and concerns. 

Keep on fighting, you Kidney Warriors! 

~Kidney Blogger









Tuesday, September 3, 2013

Dialysis 104




Welcome back Kidney Warriors! It's hard to believe that it was 15 years ago this month that I was first diagnosed with Chronic Kidney Disease. So much has happened in that time frame; everything from kidney failure to kidney transplant to kidney rejection. It has been a great joy to share my experiences with all of you. I hope you are finding the information in the blog to be useful and easy to understand. As always, I want to thank Northeast Kidney for giving me this opportunity share my journey. I am a firm believer that it is the responsibility of each and every kidney patient to spread awareness about kidney health issues and organ donation.  And I hope I'm doing my part by sharing this blog with you.

Today I want to get back to our discussion about dialysis; so far we have discussed in~center hemodialysis and the different types of home hemodialysis. Please refer back to blog posts Dialysis 101, Dialysis 102 and Dialysis 103 to get a refresher on all things dialysis. Now we are going to discuss a completely different form of home dialysis called Peritoneal Dialysis. 




Peritoneal Dialysis or PD is a dialysis process which uses a patients pertioneum in the abdomen as a membrane across which fluids and dissolved substances including urea, glucose, and albumin are exchanged from the blood. Fluid is introduced through a catheter or tube which is placed in the abdomen via a surgical procedure. 


*Peritoneal Dialysis manual process*

This process is done as either a manual exchange usually every four hours or a on device called a cycler which is used at night as the patient sleeps and automatically does the exchanges for them. One of the most critical parts of doing Peritoneal dialysis is learning to care for the catheter because it is the patients lifeline and can easily become infected. Keeping the catheter clean and dry is imperative to keeping it healthy and usable. This is the biggest disadvantage to PD and is also the reason I stopped doing PD after two and a half years. Some of the advantages of doing PD including not needing a care partner, doing dialysis treatments at night while a patient sleeps, and provides better management of symptoms due to the continuous nature of PD. Peritoneal is usually done everyday when using manual exchanges or 6 to 7 nights on the cycler.

*Peritoneal Dialysis cycler process*


As you can see peritoneal dialysis also gives you freedom from being in a dialysis clinic and more freedom for your life. It is a good home option especially if you don't have a care partner. And another advantage is that it is completely ready to travel whether you do manual exchanges or on a nighttime cycler it can go anywhere you go. I hope this give you a good understand of this dialysis option. And I hope it inspires you to talk to your nephrologist about all the dialysis options especially the home options. Doing dialysis at home has given me a sense of control over a disease that can make you feel helpless. Take charge!

I want to thank you for joining me on this journey, I look forward to all your questions, comments, and concerns.

Keep on fighting,  Kidney Warriors!

~KidneyBlogger