Life is a constant balancing act as we walk on our individual tightropes. Some days are smooth sailing and we glide across with such grace. Other days we find ourselves swaying back and forth as we continue to put one foot in front of the other. Then there are days we find ourselves hanging on by a thin thread. I find there are times–as I gain more knowledge of my health–that there is a fine line between feeling overwhelmed and feeling empowered.
I had my four-month check-up with my nephrologist last week. As always, I left as a more knowledgeable transplant recipient than when I entered my doctor’s office. We discussed my ongoing back issues and the health of my kidney. I am thankful that my kidney is doing well. However, due to the cortisone shot that I had in my back, I am experiencing persistent high blood pressure. Just like when we are prescribed medications it seems that when we try to fix one problem, another occurs. For instance, I take two kinds of blood pressure meds. The first is metoprolol, which is very safe for transplant patients. However, I have to take a low dose because the normal dosage causes my pulse rate to drop significantly. So, the doctor has me on a second kind of blood pressure med called norvasc. But norvasc causes swelling which in turn raises my blood pressure, so I also have to take a water pill. Seems crazy, right? We reviewed my current dosages and came up with a plan to keep my blood pressure at a safe level while my body is processing the high dose of cortisone it received for my back. I need to monitor my blood pressure twice a day and was given instructions on what meds to take depending on what the numbers are. During the course of the hour that I spent with my doctor we discussed so many other issues and topics that he had a list typed out for me. We added fish oil and vitamin D to my daily supplement list. When Dr. Bhat walked me to the check-out desk to schedule my next appointment, he stood there and reviewed the long list of items we had discussed during the course of the appointment and the changes that need to be made in my daily regimen. With a smile on my face, I replied, “It’s as easy as that, right?” I had to try and keep things light for I was just infused with a lot of information. I couldn’t help but wonder how other patients feel after receiving such a lengthy amount of information about their health.
On my drive home I had to stop at the pharmacy to fill some new scripts. I was trying to absorb everything when suddenly I noticed a billboard with an all- white background that read, “Believe” in large, bold, blue print. This stopped my train of thought and I took a deep breath and relaxed a little. I walked into the pharmacy and as I stood at the counter and handed in my new scripts, the song, “Beautiful Day,” by U2 started playing. This was the theme song on the Donate Life Float when I was a float rider in the 2011 Rose Parade. This brought a smile to my face and my worries seemed to subside. I believe in signs and think it is important to not miss them along the way. These two signs helped to give me balance and feel less overwhelmed and more empowered.
When I am dealing with health issues above and beyond the staple ones, like my kidney transplant, a feeling of being organized keeps me sane. I keep a daily record of my back problems in a separate, paper notebook. I keep a daily log of how I am feeling and any changes in my health. I record my daily blood pressure readings and the additional blood pressure meds I take based on my blood pressure numbers. I also track the date and times that I take medications that are different than my normal meds such as my pain meds, muscle relaxers, etc. I have file folders for all of my paperwork related to doctor visits, hospital stays and new medicine information. By writing everything down and being so organized, I feel less overwhelmed and feel that I have the best handle on what I am going through and am being my own best advocate. When I see my doctors, I take this daily log with me and can answer any of their questions and it enables us to go back and review the information to measure my progress. When I have everything down on paper I feel empowered.
I try and put myself in the shoes of people who have been recently diagnosed with PKD–the ones that dialysis is in their near future; I think of others who find out they are about to be placed on the transplant waiting list, those who are waiting for ‘the call’ to receive the gift of life, or the caregivers who are the biggest cheerleaders and support system for those of us with PKD. We are constantly inundated with so much information. Sometimes we are so concerned and scared that it is hard to absorb everything. As I continue to walk on life’s tightrope, I learn more lessons that help to keep me standing tall. I’ve had days where I feel as though I can’t wipe the smile off my face and I am doing cartwheels across the tightrope and flying so high that my feet are barely touching the rope. Other days are more emotional and I find myself with both arms reaching out in need of hands to hold for support. Regardless of what the new day brings, I continue to put one foot in front of the other, for every new day is a beautiful day.
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What helps you with that fine line between feeling overwhelmed and feeling empowered when you gain more knowledge of your health?
Being in the same boat as you, with a successful transplant (4 1/2 years ago after 6+ years on dialysis), I can identify with your “tightrope” analogy. However, I choose to see it as a more normal balancing act – a road with many turns – not a high wire act. Life is a long road (hopefully) with many twists, turns and forks in it, some offering us opportunities we might not normally seek, but nevertheless providing a certain amount of serendipity and joy along the way, and an opportunity to see outside ourselves into the broader world.
Valen, I am a lot older than you, and that age has given me perspective and peace. Hopefully, you too will someday be old, wise and happy, in spite of our failure physical natures. Here’s to the future!
Hi David,
Congratulations on your transplant for 4.5 years! 🙂 Thank you so much for sharing your beautiful thoughts and I agree with your more normal balancing act of a road with many turns. This amazing journey of mine has been quite a ride, as all of ours are, but all of my health hurdles have led me to wonderful opportunities and experiences that I would have never had if it were not for my PKD.
Perspective and peace is beautiful to have. I feel as though it makes life so much easier when we shine a positive light on it. I too hope this road of life will be a long one. Thank you very much for sharing your inspiring thoughts in which we can all learn from and gain a wonderful perspective on the similar journey we are all on. Here’s to a happy and healthy future for us all.
My Mum and I have both been diagnosed with PKD this month and are feeling very overwhelmed right now. Reading your blog though has been very helpful. You have such a positive outlook and this one about being organized with the medical information is very enlightening. Thank you 🙂
Hi Samantha,
I am so sorry to hear that both you and your mom have been diagnosed this month. I am so thankful that you have found my blog so soon and that it has been very helpful and enlightening for you. I know right now you must have so many questions and feeling overwhelmed with all of the new information you are being introduced to. If you have any questions and or if there is any way that I can provide any help or do anything for you, please let me know. I would be happy to help you. I am sending lots of positive thoughts, strength and love to you both. Please know that you are not alone and that everything is going to be ok. My email is pkdwillnotbeatme@yahoo.com Feel free to email me anytime. Big hugs to you and your mom. Thank you for this message.
It has been a tough few days. I received my transplant on 03/26/2013. I feel pretty good but my creatinine is going up instead of down. It can be so exciting yet down in the same day. I am thankful to have the support of my wife and friends. Most of all the support and knowledge of my sister Betsy Cook. The doctors are working hard as I hope for a successful transplant. Time will tell and PKD will not get me down!
Hi James,
It is so wonderful to hear from you as I know you are going through an extremely exciting and stressful time right now. Congratulations on receiving a transplant and I am so sorry that your creatinine is going up as your body is trying to adjust. Right after my transplant, I had really bad pain around my kidney site. They did a biopsy and my body was rejecting the foreign object. They gave me a high dose of steroids and I was lucky that everything settled down and my body accepted my kidney and here we are 10 years 7 months later. We are all pulling for you. You have the best family. I love your sister! Sending lots of positive thoughts your way and looking forward to hearing good news from you about your successful transplant. 🙂
Just thought I’d let you know my mum has had her kidney transplant now for 27 years and still doing well. She’s in her 70s. I’m nearly ready for dialysis but wonder if I’ll be as lucky. love the way you stay so positive, I can get down and find I don’t find much to laugh about. Had to give up work, which means money struggles. But anyway keep well.
Hi Maree,
Wow! Thank you so much for sharing that encouraging news for all of us. 27 years! That is spectacular! Congratulations to your mom! Let’s hope that you follow the same path. Thank you for your kind words. I am sorry to hear that you have had to give up work. I hope you have family and friends to lean on and know that you are not alone, as you have all of us here. Take good care of yourself and hope you can find something to laugh about today.
It was helpful to read your story. Overwhelmed, that is exactly how I felt today. But today was a dialysis day, and my blood pressure tanked in the first hour. As sick as I am today, and as emotional as I am, I know that tomorrow the promise of a new day will see me full of happiness and new energy. PKD has a lot of ups and downs. I come from a big family, with a sister, nephew, dad, aunt, two uncles, and numerous cousins with the disease. There is a lot to deal with, but it sounds like you have great inner strength. Most days, I think I do to. Not today, but it will be back tomorrow. And for that, I am grateful.
Hi Tracey,
Thank you for this very honest and inspiring message. I commend you for your inner strength to accept that there are good and bad days and to know that tomorrow the promise of a new day will see you full of happiness and new energy. That is beautiful. Thank you so much!
Thanks for sharing how you manage! I smiled as I read it because I have done the same thing with a notebook and folders. I actually have a canvas bag dedicated to medical appointments! While I am lucky enough to still have good kidney function, I had to start doing this when I enrolled in the tolvaptan clinical trial (TEMPO) 4 1/2 years ago. For that I have to document every “A.E”- any illness or ache and pain, and any medication I take, including every puff of albuterol and every decongestant etc. And when anything starts and stops. I do find it helpful though and the logging has helped me figure out triggers for some non-kidney related issues!
My “doctor” bag has my notebook and a folder with all my lab results and info about the clinical trial and meds that I know I can’t take while in it. It is great to be able to grab that bag and go and have the resources there when a question comes up at the allergist, or the nephrologist, or the internist…
I wistfully envy the lives of people like my husband, who don’t take any meds and don’t see any doctors other than an occasional physical! But between asthma and PKD, that just was never in my cards… so we learn to manage. 🙂
Hi Heidi,
It is wonderful to hear how organized you are and also greatly appreciate you taking the time to participate in the tolvaptan trial which is helping to get us one step closer to a treatment. I commend and admire you being willing to dedicate that extra amount of time to help all of us with PKD. I too envy people like my husband who does not take any meds and never goes to the doctor. I often wonder what it would be like to wake up and not have to get meds out for the day, have all of the doctor appointments etc. But like you said that was never in my cards either, so we learn to manage and will get through this together. 🙂
Hello Valen,
Hope is well. My mom past away 5 years ago of PKD since then I am in denial I see my doctor every 6 months just to know my kidney function… I started getting involve in running and some other races that challenge me physically. It’s been more than ten years now according to my doctor I am doing well I am hoping it will be that way forever or let’s say as long as I live. A year ago I decided on a vegan diet to again challenge myself now I am out of any medication.. My blood work and the rest of my test are good… I read your story I admire your positive outlook in life I wish I could be like you.
Cheers to a healthy life….
Hi Jerry,
I am sorry to hear that your mother passed from PKD. For saying you are going through denial, you sure seem to be taking good care of yourself and being proactive, which is all we can really do. Wonderful to hear that your blood work and kidneys are doing so well. I too hope that will continue, forever. Thank you for your kind words. Cheers back to a positive and healthy life!
Hi,
I have been living with PKD for over 27 years. My siblings
And cousins are as we’ll. we have all had challenges with
Our health, BP,transplants, other organ complications. I most
Recently had to undergo a liver resection.
I have always considered myself blessed. I see so
Many others with bigger challenges than I.
I live each day to the fullest- with four children, that
Is easy!
One way my brother and I have paid it forward, is that
We are both participants in the HALT Study – Tufts U.
There are regional studies across the country- we feel
Like we are helping others and gaining knowledge and
Friendships ourselves .
I acknowledge the tight rope and will admit sometimes
It tires me out- I tell my family,”sorry, my brain and body
Are not getting along right now” and give myself
Some time to realign with the positives of life!
I am loved and that strengthens my journey .
Although I consider myself doing well, I find myself
Checking in on this site regularly, I want to thank you
For being there for us all!
‘Laine
Hi Laine,
Thank you for sharing your family history and your positive spirit. Also, thank you so very much to you and your brother for participating in the HALT Study, which is helping all of us by getting us one step closer to a treatment. Makes my heart happy to hear that you are loved, as I am fortunate to be loved too and agree that it strengthens my journey as well. I am glad that you are doing well and hope that you will continue to visit my blog regularly. You are very welcome! It is an honor to be here for all of you!
Hi Valen,
I’m always sad to hear that as soon as you get a handle on one health issue, you are faced with another. You have been through so much and continue to support us all.
I am currently dealing with the normal blood pressure/kidney issues, but lately have neurological issues that will either be diagnosed as complex migraines or TIA’s (mini-strokes). I am picking the first one, but have to wait until all of the tests are done. My tightrope is my law practice. I wanted to be a lawyer since I was 10. I was diagnosed with PKD at 14. My doctor tells me I picked the wrong career (too much stress, etc.), but I try to just do everything the doctors tell me, stay on top of it all and not let it disrupt my career. I actually also started writing down more about my symptoms and issues. It is amazing how PKD symptoms (and these recent neuro issues) are not easy to describe- how bad is the pain, dull or sharp, did this help or make it worse, etc etc. I am the worst patient because I have a high pain tolerance and always tend to trivialize my symptoms, but I am learning that when the doctors have all info, they can do their job better. It has felt overwhelming these past few weeks with these additional health issues, but I remind myself that you, others on this blog and my brother have been through dialysis and transplant and are doing well and staying strong. It definitely eases some of the anxiety for me.
FYI from last week- I am in S. Cal (L.A. to be specific 🙂 We have to meet when sometime when I am up north!! I hope your back feels better.
Hi Jennifer,
You are sweet. I’m kind of getting used to this roller coaster of ups and downs with my health. I try and put things in perspective and know that it could be worse and am so very thankful that my kidney is doing well. I am so sorry to hear what you are dealing with and hope they are able to provide a treatment that will give you relief. Are they saying the neurological issues are connected to PKD?
Wow, amazing that you knew you wanted to be a lawyer since you were 10. That is pretty awesome that you knew at such a young age and followed through with it. I commend your determination and dedication. Sounds like you have a great outlook and good handle on things and balancing your health and life, which is hard and very important.
I am just like you with the high tolerance of pain and find it difficult when they ask the question, “How do you rate your pain on a scale of 1 to 10?”
Glad to hear that your anxiety is eased by knowing that you are not alone. That is important for us all to remind ourselves. Would be great to meet! Take good care and good luck. Hope you get answers soon as to what is going on with your recent health issues.
Valen,
I found your blog just now.
being father of 3years old boy, prenatal diagnosed with PKD in 23rd week – its eye opening and a gift.
Thank you for your heart in dialogue you leaving here.
Hi Maciej,
Thank you very much for this heartfelt message. With your son being diagnosed prenatal, I hope his health is doing well today. I am thankful you found my blog and hope you enjoy it.