What Would I Tell My Younger, Newly-Sick Self?

I’m occasionally asked for helpful hints from patients and families who are just beginning to navigate chronic or end stage renal disease. Many of these persons—like me—felt perfectly healthy when they received a scary unfathomable diagnosis. I’ve had more than 30 years of trial and error, so I know what works for me. I know what helps me to minimize stress and give me some level of control in uncontrollable medical situations. My husband, Jerry, knows where my “hospital” bag is and what needs to be swiftly packed if I need to be hospitalized fast. From the time our son Nicholas was old enough to remember our phone number and address, he’s been drilled, “Take my mom to ECMC. She has a kidney transplant,” when asked what to tell anyone if I need help. When I vacation with friends, they all know I travel with my medical folder and where it is. I’ve had a Health Care Proxy and a DNR since my early 20s, so it doesn’t faze me to think about it. They’re just sheets of paper that I carry around in my medical file at all times. 

For me kidney disease was slightly-life-altering. I wouldn’t let it rob me of who I was; who I am. Dialysis was a stop-gap measure to my end goal of a kidney transplant. For those traveling the same road I’m wearing out, there are many things I’d like to share with potential transplant candidates. I wish I’d known these when I was first starting my journey:

  1. If you are not on fluid restrictions, drink A LOT of water the day before blood draws or I.V. treatments—it makes it much easier to find good veins. 
  2. Being under- or dehydrated may falsely increase your creatinine level. Don’t get too worried, too quickly. Stay calm and do a repeat blood test.
  3. Do little things to make yourself more comfortable: Bring a book to every appointment. A page-turner practically guarantees you’ll get called from the waiting room right when you get to the good part. If you have an all-day treatment scheduled, don’t feel shy about bringing your favorite blanket or pillow. 
  4. Use any dietary restrictions (protein, potassium, phosphorus, calcium, sodium) as a way to leisurely re-explore your grocery store. Use a shopping cart (handy to lean on because you may be really, really tired), bring a notebook and pen, then read labels on everything in every aisle. You’ll discover lots of new foods you’ve probably never tried are OK on your renal diet.
  5. If you must begin dialysis, DEMAND that your doctor thoroughly discusses the option of peritoneal dialysis with you. Don’t be railroaded into hemodialysis without a compelling reason from your nephrologist.
  6. Remember that the vast majority of renal patients are out actively living their lives in the community. When you see the sickest patients in the clinics and hemodialysis centers, they represent only a tiny fraction of the dialysis and transplant patients in Western New York or anywhere you roam. 
  7. You will vacillate between feeling fabulous and crummy. You know your body best so take notes to share with your doctors during visits. Seemingly disparate symptoms may give your doctors excellent clues about what’s really going on and how best to treat you.
  8. If you’re feeling uncertain, have an advocate with you to write down and help remember everything the doctors, nurses, and medical staff are telling you. It’s a whole new language.
  9. Be your own best doctor. Know your medical history: medicines, vital stats, prior surgical procedures. You will be asked for this information by every single person you ever meet in every medical institution. If you are comfortable on the computer, create and keep updated spreadsheets: prescription names, dosage, prescribing physician; drug allergies and intolerances; Exact dates of antibiotic and antiviral usage; flu and pneumonia vaccinations; every physician’s contact info. You may be surprised how fast and how often certain prescriptions will change.
  10. It’s OK to bring a good luck talisman with you. I’ve always been Pokey to my sister MaryEllen’s Gumby. She lives 1,400 miles away so she sent me a Gumby and Pokey to hang out together at all my medical treatments. (They live in my hospital bag.) My sister Ann is my in-person talisman; ready to laugh with—and at—me, as needed. She’s the one who ran over my urinary catheter with the hospital food tray—seriously—and we both survived to tell the tale. If we don’t laugh, we cry.
  11. You are not alone. We all share a chronic, life-threatening illness, and we all celebrate myriad transplant success stories. If you think it may help you even a little bit…speak to other dialysis and transplant patients. It’s a great way to ask weird and awkward questions because we’ve all been there. Speak to a professional counselor who specializes in chronic illnesses. They get it. Speak with clergy because the fear of death is real.
  12. Find a kidney! The exploding national waiting list statistics for deceased donors are sobering, and living kidney donation works. Advocate for yourself, and ask every friend and family member to help you find a living donor. It’s VERY hard to ask, but the payoff for the living donor and recipient is beautiful.
  13. Pain dissipates. Bruises heal. Scars fade. The bad days don’t last.
  14. And my last hint for this month is the coziest. If you’re facing a surgery, ask for the warm blankets in the pre-op area, when you’re wheeled into surgery, and awaken in recovery. The warmth is very soothing at a stressful time.

Amy Nash
Two-time kidney transplant recipient