This article is part of a series of stories of Prednisone Warriors sharing their experience with prednisone side effects. Marlene shares this story to give comfort to other Prednisone Warriors that they are not alone in how prednisone affects their lives when taken long-term.
And So It Goes
BY MARLENE LACOURSE
In 1977, I was 16 years old, laying in a hospital bed resting from having surgery. Medical term is right renal nephrectomy. My terminology, removal of my right kidney, due to (hereditary) Polycystic Kidney Disease; PKD for short. I was told years later it was a gene received from each parent.
I don’t even believe they knew they carried the “infamous” gene. The double whammy was that while i was in the hospital, the person I had a crush on died—Elvis Presley. “Love me Tender” was my favorite. I felt like he was singing it right to me.
The Doctor said my other kidney had cysts on it also, but chances are it might not even bother me my whole life. I went back to school two months later. Had to re-pick all my classes. Uggggh.
Twelve years later, at 28 years old, I incurred an inguinal hernia while working. I had some basic tests done about a week before the surgery to prepare for it, when they discovered my last kidney was only functioning at 25% capacity. The hernia surgery was postponed ’til I looked into kidney problem.
Dialysis soon followed. Three times a week I drove myself 1 1/2 hours away to be treated. Eventually, I did my own home dialysis. In total, I did dialysis six months. I approached one of my sisters to do three month work up for transplant. We were a wonderful match.
The night before the surgery started giving me Prednisone and Azathioprine for anti- rejection meds. Five and one half hour surgery went splendid for both of us. I progressed well and I went home after eight days. My weight was 112 pounds before dialysis and transplant and within 9 months after on prednisone I was 163 lbs. I don’t remember the dosage, but it was high. The psychological turmoil weight gain caused was immense.
Thirty Years Later
November 28, 2020 I’ll be post-transplant 30 years. Over those years the dosage was lowered to 10mg 3x/wk, then to 7mg 3x/wk and now 5mg 3x/wk. I cried more than once in the transplant team office for my annual follow-up because they keep telling me to lose weight but give me Prednisone which keeps it on. I’ve always exercised in my life and never had a weight problem ’til prednisone.
Even though I’m at a lower dose, I’m bothered with insomnia which than prevents my husband from sleeping and we don’t want to sleep separate so we do the best we can. Mood swings are a big roller coaster ride, but because we know its the prednisone, have we been able to have grace in our relationship.
My husband is a sweetie for supporting me in this prednisone war that attacks my mind and body which affects him as well. He understands the plight we share. We’ve done life with Prednisone 30 yrs together and I’m immensely grateful for him by my side.
I asked to be taken off Prednisone this past spring 2020 and the person who my Dr had call me said no and that my endocrine system is already shot now because of it anyway.
Both eyes are said to have cataracts positional to prednisone. I have Diabetes cause of prednisone. I have fluid retention, osteoporosis, cravings and increased appetite, easy bruising, slow wound healing, my mind races at night trying to sleep, hot flashes ( from prednisone) didn’t know it could do that! Fatigue. Prednisone raises cholesterol, blood sugar. If someone doesn’t find a better alternative, I’m on it for life.
I’m only 59 and I feel so old and fatigued…..but I don’t look that way!! Hahahaha. I no longer work but I keep busy and I continue to exercise and take care of myself. I work with a health professional for weight. I keep up with a slew of continual diagnostics and tests. I press on….and on….and on. What choice does anyone on prednisone have? I’m very invested in my health and I do my very best…Always.
The Lord is my Rock, my fortress, my refuge, and ever present help in time of need. He will never leave me or forsake me, in Him I trust. Even when I can’t see it he’s working, even when I cant feel it he’s working. He never stops working on my behalf.
Do you have a Prednisone Warrior story you want to share?
Contact Dr. Megan and we can feature it!
How I Ended Up on Prednisone – My ITP StoryMy Prednisone Warrior Story Hello! I am Megan, a 30-something year old pharmacist and mother...
Muscles Hurting & Weakening While on Prednisone?A Prednisone Warrior asked about how prednisone can affect muscles: So I’ve been on Prednisone...
Extreme Damage to Muscles from Prednisone – Muscle WeaknessSteve shares his prednisone journey with me of what terrible reaction he had experiencing prednisone...