March is National Kidney Month and has inspired me to share one of my major reasons for traveling. Read on to learn more about me and hopefully steal a little inspiration as well.
Working your ass off and retiring with oodles of cash at 65 is a good goal, if a little traditional. So don’t misunderstand the point I am about to make.
We have seen enough fun-loving old couples in our 3 months of travel to appreciate the joy you can have when experiencing the world in your later years.
But we have also seen a great number of those fun-loving old couples struggle up ancient steps at ruins and have to pay more to stay at a nice hotel because their backs could not handle a hostel bunk bed.
And how many people who saved their whole lives to travel during retirement never made it that far? How many left this wild game of life early due to heart attacks, car accidents, and slips in the shower?
You never know what your future holds, no matter how confident those guys in the Charles Schwab commercials seem about their ability to secure your retirement plans.
Forget the unforeseen circumstances that might derail your retirement plans, what if you are already living with a chronic disease?
Can you never travel? Are you just dealt a bad hand and have to deal with it?
NO!
If anything, living with a chronic disease can you give you freedom to chase your dreams (no, i’m not crazy).
You know what you can expect down the road from your condition, so any reason you have for waiting to travel the world should be non-existent.
Trust me. I know. This is one of the big reasons why I got off my butt NOW to see the world.
My Story – Living & Traveling With PKD
I was diagnosed with something called Polycystic Kidney Disease (PKD) at the age of 9. What is PKD?
Polycystic Kidney Disease affects an estimated 1 in 500 people, including newborns, children and adults regardless of sex, age, race or ethnic origin. It comes in two forms:
1. Autosomal dominant (ADPKD) is one of the most common life-threatening genetic diseases. ADPKD affects approximately 1 in 500. It does not skip a generation. There is usually a family history of ADPKD. Parents with ADPKD have a 50 percent chance of passing the disease on to each of their children.
2. Autosomal recessive (ARPKD) is a relatively rare genetic disorder, occurring in approximately 1 in 20,000 individuals. It affects boys and girls equally and often causes significant mortality in the first month of life.
A normal kidney is the size of a human fist and weighs about a third of a pound. However, with the presence of PKD, cysts develop in both kidneys. When many cysts develop, the kidneys can increase in both size and weight, sometimes weighing many pounds each. There may be just a few cysts or many, and the cysts may range in size from a pinhead to the size of a grapefruit.
I have ADPKD and am one of the 13% pf people with the disease where it occurred due to a spontaneous mutation, just like the X-Men.
We are so alike...
I have high blood pressure due to the disease, treated with medication, and pretty big kidneys. If the average kidney’s are about 10 centimeters long (4 inches), mine are closer to 20 centimeters (8 inches).
If I am lucky and if I live clean, I might get lucky and never have major complications. But most likely, my kidney function will start to deteriorate at some point… leaving me on dialysis and searching for a suitable donor.
But right now? I have beautiful kidney function, blood pressure that is medicated and under control, and the desire to live my one life to its fullest.
My kidney’s might not always cooperate with my dreams, but right now they are champs. So why wait?
Why would I wait until i’m 65 to see the world when who knows how well I could manage the travel.
Whether it’s my kidney’s that keep me grounded in the future or some random even like not looking both ways when crossing the street, I do not want to take the chance.
Life is too rare an opportunity to rely on being around in 40 years to finally enjoy it.
NOW is the time to follow your dreams.
NOW is the time to travel.
With this being National Kidney Month, I will be writing a few more articles about PKD and travel. Sharing my story and a few of the extra preparations needed to travel with a chronic disease. I hope you enjoy and please check out the good work being done by the PKD Foundation and their 31 Days of PKD Challenges.
Thank you for posting this. I have PKD and am 30 weeks pregnant with our first baby. A lot of people warned me against getting pregnant, but my kidney function was beautiful. Now, not so much. I’m just starting to see some problems with the added strain Baby is putting on my body. Living for 10 years with no symptoms almost didn’t allow me to see my illness as a real thing. Your post came at just the right time, right when “reality” was settling in. But maybe it’s time for me to create a new reality, too.
Good luck with the rest of your pregnancy! I also have PKD and have had 2 successful pregnancies, it is hard! Praying for you!
I can definitely relate to the lack of symptoms not making it seem real. But by working with the PKD Foundation and volunteering at the Walks for PKD, I have met many wonderful people that have not been as lucky. But even without PKD anything can happen… you just have relish all that life has to offer!
Congrats on the baby and any reality you create!
I was diagnosed with PKD about 5 years ago after my father was also diagnosed. While I am still doing ok apart from high blood pressure, my dad is almost at the stage where he will need dialysis. Just like you said, the travelling plans he had envisioned during retirement (and in fact to visit his children and grandchildren who live in different cities) have been derailed. I have so many places I want to see now, not later; and who knows what my future health situation will be?
Thank you for an inspirational and thoughtful post.
So sorry to hear about your dad! It always tough when life throws curveballs at your well made plans. Definitely take advantage now when you’re in good shape to see the world!
I was diagnosed with PKD in 96, I was fine till 2006,then my Kidney funtion decresed after a back surgey, I started on Hemo 7/06,then switched to Pd six month later. I was so lucky i was transplanted Feb 9th 2012. I loved to travel before my troubles began. I could still do alot of the things i likeed to do,golf,hiking,horseback riding.But a few months before transplant I couldnt do much, They removed both Kidneys in 2010.They were the size of footballs
Traveling was hassle to me while i was on dialysis. But now my goal is to make up for lost time and travel as much as possible. I hope things go well for you. Enjoy your time abroad ! Thanks for your post!
Glad to hear that you’re feeling better and can make up for lost time. Let us know where you adventures take you!
Thanks for your inspiring story, and for encouraging others to live their dreams! You guys rock!
Happy you liked it!
Thank you for sharing this. I am so happy for you for getting out there and traveling now. You really took a not ideal situation and let it teach you something awesome.
Thanks for the support! I just feel lucky that I can take advantage of our health now.
I cannot say how proud I am of you both and what an inspiration you are to those around you. Love you both and keep it up!!! Thank you for continuing to share your stories, realities, adventures, everything.
Thanks so much Tiff for following our journey and for your kind words! We are actually looking to finish our RTW trip out West (gotta see baby Johnson in Seattle!) and may be planning a visit to Denver as well… Perhaps a meetup is in order?
Love ya!
I am 26 years old and was diagnosed with PKD at 18. My 1 yr old son has PKD and I am pregnant with my second. Pregnancy was very difficult last time because I developed severe hydronephrosis in both kidneys and had complications with the stent surgeries. My kidney function is good and my blood pressure is only borderline now. I feel so grateful for my disease because it has given me an extra push to live my life NOW rather than waiting for tomorrow. My husband and I love to travel and I really enjoyed reading your article! Best of luck to you and spread the word and maybe by the time my son is grown we will have a PKD cure
Ps. My PKD was also a spontaneus mutation with no genetic history and I’ve never met anyone else like that. Thanks again for taking part in National Kidney Month!
Me either! Proof that we’re just a little bit more special…
Wonderful news that you are ok now with a one yr old and another on the way… so exciting! I just turned 27 but have lived with PKD for 18 years… it hasn’t been totally conscious of me but I feel it has definitely shaped my ideas about living in the now. Glad to meet a fellow PKD’r who loves to travel!
I also enjoyed the article. I found out that I had PKD when I was 21. I ran into trouble a couple times but nothing really bad. My kidney numbers started to increase and went to get ready for dialysis. However, I was very lucky and had a transplant in 2009 (age 48) due to my wonderful brother-in-law who donated his kidney to me. Things have been going well and I have been able to travel. In 2010, I was able to go to Alaska, California and Las Vegas. I am currently planning another trip this summer. The medicine I have to take is ok. So, my suggestion is to take each day at a time and enjoy life..
What a great bro-in-law. Glad you are doing well and have been able to travel! Excellent advice… take each day one at a time and just enjoy the absolute heck out of each minute.
Tony,
Loved reading your story. Seems we all have s story to tell. PKD is a part of my life , too. I was finally diagnosed positive in 1988 afte being tested since 1972. It ran in the family on my mothers side. I have traveled many many times and as long as you can , do everything and anything your heart desires. Life moves so fast. PKD is only part of your life. Live it to the fullest. I just had knee replacement surgery 10 days ago because I love to travel, play golf love my husband and enjoy watching my grand daughters grow. Stay involved with the foundation and if you can get into studies they are wonderful. Knowledge is wealth. I’m
Only 56 and have lot of things to do on my list. Happy trails my friend!
Thanks so much for the support, Cathy! I totally agree that PKD is only a part of ones life, which is why I don’t let it define me. Good luck on the knee recovery and hopefully you will be back out on the links in no time!
This is just the inspiration I needed to read this morning
Excellent! It’s always best to seize the day!
Thanks for your story Steve.I was diagnosed in ’95,started hemo 3yrs ago,at the stage of having my double bilateral nephrectomy(both kidneys removed). It’s been worrying me to have this procedure done, but it’s a positive note to here how you have made it through it. I have to have this done within the next 6 months because I have already been on list for 6 m0nths for a kidney and don’t want to miss the chance if one should come up as a match for me.
Also thanks very much Tony for your story and this web page, good luck in whatever you pursue in life.
Thanks for sharing Dale and I’m glad Steve shared his story too. It’s hard not to worry, but stories like Steve’s are definitely an inspiration!
If these words don’t get someone to travel, I don’t know what will. Very inspirational words!
Thanks for reading!
I don’t have PKD but I’m touched Tony could touch so many people
You know what they say about a guy with big kidneys…
He has a big heart.
Thanks for the love, Kipp! I’m going to print out that quote and frame it on my wall. Brilliant.
What wall? We’re homeless baby!
Awesome post! Seriously rock on!
Thanks so much Heather!
Hi,
I am 36 years old and diagnosed when I was 28. I am now 8 weeks pregnant and due to
go on holiday in July. Its a 4 hour flight and I will be away for a week. What are the chances of the doctors allowing me to fly?
Tina – I am not a doctor and only now the old rule of not flying during the final trimester. As far as PKD is concerned, I do not know if it changes that calculus. Definitely ask your doctor so that you are not surprised the day before. Hopefully you will be able to go! Happy travels and congrats on the pregnancy!
You guys are so inspirational. Congratulations on your choice of living your life to the fullest. Unfortunately Tony, your golf game will suffer from lack of use, and given hte chance, this old man might be able to beat you scratch. (I can dream can’t I???). We appreciate the chance to live your trek through your interesting correspondence. Keep those postings coming.
Love from Papa Dave
My golf game is atrocious! I didn’t even play much in Miami if you can believe that. Every now and then though I can shoot a sub 90 round so you better watch out. Thanks for reading, following along, and the great comments Papa!
As a pediatric cardiac ICU nurse, I’ve had my fair share of watching patients go from healthy to ill, to severely ill, to never making it to their 1st, 7th, 10th, or 18th birthday. I sometimes think to myself that I am too young to experience people’s deaths. My coworkers and I go to some of these patients’ funerals because they’ve stayed sooo long in the ICU and have gotten to know the family very well. Taking care of severely ill patients have actually inspired me to really live my life to the fullest FOR MY PATIENTS who won’t ever get to see their way out of the country… or out of the ICU or the hospital for that matter. Kudos to you for going out there and seeing this beautiful world! I am there with you guys, as I am taking a career break for a couple of months to do some extensive traveling.
Thanks for writing, Antoinette!
Many people who deal with the grief you must see every day would become pessimistic about life… but I love that it has just inspired you to live your own life to its fullest!
There are a lot of things in life you can’t control, but one thing you can control is your own happiness. Love to see that you are taking your own career break to travel. Where are you going?
-Tony
Good luck Tony with your health and travels – our time on this planet is short and you really have to make the most of the hand you’re dealt with and enjoy the ride. Looks like you both have seized it by the throat and are having a great time on the way.
Kind regards
Ian
Totally agree, Ian! Thanks for the kind words
I am delighted that you encourage people with chronic illnesses to travel — thank you! You’re living your dreams with courage and determination — you are inspiring. I am fortunate to have enjoyed travelling before my PKD diagnosis and understand how enriching seeing the world can be… The Hamilton Chapter of The PKD Foundation is hosting a discussion about travel planning for kidney disease patients: http://www.prlog.org/12265058-kidney-disease-patients-offer-tips-on-holiday-planning.html
This is an opportunity for people in the area to meet and support one another by sharing their experiences and information.
So glad that people are talking about traveling even when they have PKD! You never know what life has in store and even healthy people today can be sick tomorrow. No point in just sitting around…
Nice to hear you’re helping people with PKD and got to travel yourself
-Tony
You are indeed an inspiration!!! My daughter was just diagnosed PKD. I was devastated (still am). She is 29 yrs old cysts on kidneys and liver but all her labs are normal and BP very low. Dr. told her he didn’t have to see her til next year.
Anyway , she is a traveler and will continue to do this . She just got married in Nov ’13. Thank you , thank you for your love for life. Each day is a different day.
Thanks so much, Mary! That is great news about her labs and her recent wedding. Definitely tell her to keep traveling and keep living life to its fullest
-Tony
Thanks for your post! I’m definitely feeling this right now, as I have just been diagnosed with PKD myself. Unlike so many others, this wasn’t a surprise to me. PKD is strong in my family. My son was actually diagnosed a few years ago, but call it denial or whatever, I just hadn’t gotten around to getting my own official diagnosis. The bad news is my cysts are many, and both my kidneys are pretty large, but the good news is that my function is perfect and there are no cysts on my liver. For the lady who was concerned about her pregnancy–I have had three children normally with no complications. I have been dealing with high bp for about 10 years, but now that I have been diagnosed PKD, I finally have someone on my side that has prescribed bp meds that lower my bp more than high 120s over mid to high 80s on bottom. (It has been a battle.) Anyway, I love to travel too! There is no time like the present. Luckily my partner in crime is also very supportive. Almost as if he read my mind, when I got the diagnosis he started planning our next trip. 😉 There is so much about this disease that is unknown. I’m glad that there are people out there to talk to and share with.
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