At the age of 7 months, I developed kidney disease, which led to two transplants from deceased donors; I had the first one when I was 5 and the second one when I was 12. When I was 10, I began to limp badly because of osteoarthritis and avascular necrosis in my left hip.
An orthopedic surgeon determined that my left leg was shorter than my right one. She explained that the immunosuppressants and prednisone that maintained my kidney function had affected the blood supply to my left hip, resulting in the gradual deterioration of the joint. Severe, constant pain would eventually require total hip replacement surgery. Because of my age, my history of kidney disease, and the fact that a hip replacement lasts about 20 years and revision surgery is extremely complicated, she said that surgery could only be performed when I could no longer tolerate the pain. It quickly worsened to the point that I regularly walked with one crutch and sometimes had to use a wheelchair. Unexplainably and miraculously, the pain disappeared when I received my second kidney transplant and only returned (with a vengeance, unfortunately) when I was 24. I’m so grateful that my second transplant allowed me to be pain-free for 14 years. Nonetheless, the fact that my left hip would continue to worsen and that I would spend my days wondering whether my quantity of life was more important than my quality of life left me mentally and emotionally distressed and exacerbated my symptoms.
I was lucky to have an amazing support system of friends and family who reminded me that I wasn’t alone and that I had options. Because of them, I decided to undergo surgery only as a last resort and turned instead to alternative forms of treatment to manage the pain. I began to see an osteopath, who aligned my joints and balanced my legs with lifts and orthotics in my shoes. I forced myself to stay physically active with swimming, walking, and stretching, even when the pain was so severe that I had to stay in bed and wallowed in self-pity. I slowly learned that “prevention” was the only “cure” for the incurable arthritis that I had to deal with while at the same time maintaining my kidney function. I began to rest periodically on outings, told people when I needed help, and accepted my limitations even as I forced myself to keep going when the pain exhausted me. Time and experience provide us with the wisdom that helps us persevere, but I continue to struggle with that balancing act every day!
I have now had kidney disease for about 30 years and osteoarthritis and avascular necrosis for almost 20 years. Realistically, a total hip joint replacement is in my future, but I feel that I can tackle anything. All of these health challenges have taught me that time is precious, that life is a gift, and that being in the company of people I love makes all the difference.
Here are some tips for coping with arthritis, but remember to consult with your physician before engaging in physical activity, undergoing alternative treatment, or taking nonprescription medication:
- Physical activity: It’s recommended that you spend 20 to 30 minutes 3 to 5 days a week on physical activity that’s easy on your joints.
- Swimming/aquatics arthritis
- Tai chi
- Alternative treatments: Check to see what’s covered by your insurance.
- Physical therapy
- Alexander technique
- Rosen Method
- Pain relief: As kidney transplant candidates or recipients, we can’t take Motrin, Aleve, Bayer Aspirin, or Extra-Strength Tylenol because they could do long-term harm to the transplant. The following medicines are allowed:
- External analgesics or ointments: Bengay, Icy Hot, capsaicin cream
- Muscle relaxants
- Regular Tylenol
- Assistive devices: Get a cane, a walker, orthotics/lifts for your shoes, etc.
- Support groups: The Arthritis Foundation has information on local support groups and programs.
- Handicapped parking permit: Find out how to get one. Your doctor can help.
- Periodic rest: Buy a cane that converts into a small stool to sit on whenever you need a break.
- Attitude: Stay positive and let people know about the emotional and mental toll that arthritis exacts so they can help you! It’s always a balancing act, but you can do it!
- Medical care: If surgery is called for, you’ll need to find an orthopedic surgeon who’s part of your insurance network.
About the Author
Mary Wu is a 29-year-old American of Chinese extraction. As a result of her experiences, she has a unique perspective on and interest in counseling and supporting organ donor families, pediatric or young adult recipients/candidates and their family/friends, and transplant recipients/candidates in general. She is an Arthritis Ambassador for The Arthritis Foundation and is well known in the organ donation and transplant community as someone who is always working to promote education, awareness, and especially registration through public speaking, published articles, and the book she’s writing “Confessions of a Kidney Transplant Recipient” (see kidneyconfessions.blogspot.com)
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