“So, you’re all good now?” I have heard this comment countless times from individuals after they hear that I received a kidney transplant. When hearing this, I envision myself leaning back in a chair with my arms behind my head and not a care in the world. I hit the jackpot by receiving a kidney transplant; however my jackpot winnings include countless blessings rather than green dollar bills. When looking at me it may appear that everything is good now. However, even a good thing takes work and I do not take this gift of life lightly.
Nothing lasts forever. I am not blind to the fact that the odds of needing another kidney transplant or two in my lifetime are very real, because I received my transplant at age 19. The days following my transplant were eye opening and quite real as well. My transplant coordinator’s tough love following my transplant, while not well received at the time, was very necessary. I recall lying in my hospital bed surrounded by pills. These magic capsules were needed to allow my body to accept the new foreign object it had just received. I stared at the pile of pills that looked like a meal. I was overwhelmed. I was frustrated. I was relying on my mom to handle the stress of organizing and figuring everything out. That didn’t last long. My transplant coordinator came into my room and firmly told me that it was my responsibility to learn what the pills were, when I needed to take them, and to not rely on others. I thought to myself, ‘How dare she say this to me?’ I’m so glad she did. A valuable lesson was learned.
I have learned to become a pro at being active and proactive. For me being active is twofold, I am physically active and actively involved in my care. While I think it would be fun to be a strong athlete, I understand that hiking and toning my body is great exercise. We are all advised to eat healthy, exercise a few times a week and do everything in moderation. I like to follow this simple advice. I am actively involved in my care by taking my medicine on time every day, getting monthly blood work done, understanding my lab results, seeing my nephrologist every four months, always asking tons of questions, and being very aware of my body and how I feel.
It is important to me to be proactive. I don’t want to be that person who ignored a symptom or disregarded how they felt and then wind up dealing with a bigger issue. Besides, “So you’re all good now,” the next runner up of a comment I receive countless times is, “You look like the picture of health.” My initial thought is, ‘You should see what my body looks like on the inside.’ While this is a nice comment, it can pose a big issue. Although I look healthy, I have a suppressed immune system and it is VERY important for transplant recipients to not get ill. If I have a fever, I must immediately go to the hospital. If I am vomiting, I can’t keep my medicine down, which is very scary. If I get a cold, it can progress into something worse a lot quicker than a healthy person. I have had issues with others understanding and respecting this. My biggest proactive advice is to not take this lightly and make sure that if you are going to be around others–like at an event or family dinner–make sure that everyone is healthy.
There are limitless ways to be active and proactive. When you see me, I am always carrying my turquoise Camelbak bottle filled with water and my purse that contains my hand sanitizer, Zicam (cold remedy) and Halo (protects against airborne germs). Any little thing we do is helping us in the long run. My transplant does not limit me but rather has given me a life full of wonderful limitless options. I look at my kidney as my child. I unconditionally love it; I put the needs of my kidney first, and wouldn’t trade it for the world!
How do you stay active and proactive?
that was educational to me and well worth reading ..i hope things will get easier at some point for you. does everyone who has a transplant take that many pills??? i know at first a few then it subsides but you amaze me and i love that you said that about your kidney like your child cus its a new gift and i feel that way about my kidneys being bad i feel for them to be that way..wish i could give you hugs in person
Hi Dominique,
Thank you so much. I am very happy to hear that you found this post educational and that you enjoyed it. I am not sure how transplants are now. I know a lot has changed in 11 years. When I had my transplant in 2002, I took around 40 pills right after the transplant, and now I am down to around 20. However, that is not 20 different kinds of pills as some of them I have to take multiple pills. For example, I take four pills of magnesium a day. I only take two kinds of anti-rejection drugs and the others are supplements like magnesium and k-phos since my kidney has trouble regulating those items and then blood pressure meds etc. Everyone is different and I would not get intimidated by the pills as the pills are way better than dialysis. Thank you for your thoughtful words and sending big hugs back at you. 🙂
I love this post! I just got my new kidney 2 1/2 weeks ago. I have three children but feel now like I have four. I want to do what’s right for the little guy. Very well said about the dangers of a suppressed immune system. I hadn’t thought about the vomiting thing. Very important to be careful. It’s easy now, still being in recovery. I hope to never take it for granted even once I get to the stage of looking like the picture of health. Thank you, Valen!
Dear Amy,
Wow, two and a half weeks! That is fantastic! Congratulations on your fourth child! 😉 I am confident that as the picture of health, you will always treasure the gift of life you have been given. Enjoy every healthy day and I’m thankful to hear that you loved this post.
Thank you so much for writing this blog! It is just this story that I needed to hear. I am 4 years post transplant and people look at me and say so you are cured. While I am in the best shape of my life and riding my bicycle 7 to 8 hours a week, I know that I am not CURED! What I have is the chance to walk my daughter down the aisle at her wedding next year.
Dear John,
Well, I am typing this with goosebumps imagining you walk your daughter down the aisle. What a treasure the gift of life is and how lucky we are. Congratulations on four years with your transplant and riding your bicycle seven to eight hours a week. You are exemplifying what a miracle the gift of life is and how it restores our health and allows us to enjoy life.
Your words always inspire me! On the 15 of September I will celebrate my first 90 days. That is when I can be more active and remove some restrictions. My transplant was a bit compromised because just two months before receiving the “blessed child” I had a triple bypass ! Under other circumstances I would have postponed any additional major surgery, but as you know, when the call comes…you go!
I too take a bunch of pills, life savers all. Since the surgery I have developed type two diabetes so I can add an injection to the mix. I am encouraged by your words because I don’t feel that I have been getting out there walking, bike riding as much as I should. I will pick up the pace now! Thanks Valen, you are great!
Hi Art,
Happy 94 days! 🙂 Thank you so much for your support and I’m thankful to hear that you have been encouraged to be more active. Remember easy does it and any activity you do is better than none. Enjoy the beautiful fresh air with your new “blessed child.” 🙂
Dear Valen,
Thank you for your brave and inspirational experiences. I am a 5th generation survivor of PKD and just celebrated my 8th anniversary of being on dialysis. What keeps me positive is as simple as waking up in the mornings and getting to watch my beautiful daughter grow up. Knowing that she does not have PKD is a gift. The work that you do is amazing to me and because of your efforts people will take notice. Future generations may not have to endure what we have. You are a wonderful roll mode. I look forward to watching the advances in Kidney research with you leading the way on education and inspiration.
Hi Dawn,
Wow! I read this a few times and am somewhat speechless by your beautiful thoughts and encouraging words of support. Thank you so much for sharing this as it sure does mean a lot! I commend you for your positivity as an 8 year dialysis survivor. I hope you are able to receive a transplant and continue to enjoy watching your PKD free daughter grow up. I will continue to share and do all I can to help those suffering from PKD. Thank you for reading my blog and inspiring me to continue to write. Wishing you all the best!