Learning, connecting, and sharing stories is an essential component of building community.
For people living with a rare or chronic health condition, just knowing there are others out there who have walked in similar shoes can be a source of comfort and motivation.
In our first edition, we catch up with Tracy, who shares her story before and after kidney transplant.
Tracy, tell us why you needed to have a transplant?
Due to kidney disease caused by Type 1 diabetes, I found out I needed to have a transplant. When first hearing this from my doctor, to put it mildly, I was shocked. I had no idea what was happening to my body.
What was your life like before you had your transplant?
My sugar levels were not good - I was tired all the time. In January 2009, I underwent surgery and received a kidney and pancreas transplant. Unfortunately, my body quickly rejected the organs and caused me to become very ill. The organs were removed just 5 days later and required 16 blood transfusions. The surgeon reconnected my original organs, which remain in your body following a transplant. After that, I had to receive weekly iron infusions. Trudging along, my original organs held up until May 2010 when I needed to start dialysis.
For the next 3½ years, I received dialysis 3 times per week. My life became all about these 4-hour sessions. Prior to beginning dialysis, a fistula was inserted into my arm. A fistula is a surgically created vascular passageway to make dialysis easier. Pills were taken with each meal and snack, sodium was avoided at all costs, and fluid intake had to be carefully monitored and limited - for example, soup was drained and eaten with a fork and high-sodium restaurants were avoided. Due to the dialysis schedule, vacations were out of the question.
Even though it made me feel better, dialysis also wore me out and took a toll on my body. Everything dialysis entails – food, liquids, fistula, medications, schedules – was all I thought about. When I look back, I realize I was just living day by- day, with no real thought to the future.
Download our free Transplant Patient Medication Guide with helpful information about common medications used after transplant.
What role did IVIg have in your transplant?
My doctor explained, due to my existing organs and the previous blood transfusions, I now had 100% antibodies. Simply put, another transplant would be very difficult as my body would likely again reject the organ. My doctor proceeded to tell me about a study using IVIg. IVIg is supposed to lower antibodies, so another transplant could be possible; he wanted me to try it. Eager to do all I could to prepare for a successful transplant, I received IVIg for 7 months. A nurse came to my home every 2 weeks to administer the 4-hour infusion.
In January 2014, a kidney became available. IVIg helped ensure the transplant was a success! Without IVIg, I would still be on dialysis. Between the family that lovingly donated the kidney and the benefits of IVIg, I feel so fortunate to have been given a second chance to have a “normal” life and be free of the burden of dialysis!
What challenges have you faced post-transplant?
The biggest post-transplant challenge has been changing the way I eat and drink and getting used to the anti-rejection medications. After years of scrutinizing fluid intake, it was difficult to suddenly start drinking tons of water, which is needed to keep the new kidney functioning properly. I still think of fluid in ounces, but it has become easier with time.
The transplant medication routine was very confusing at first. It didn’t help that I felt a little out of it. Someone at the clinic suggested I was experiencing ‘transplant head.’ My husband had to oversee my meds for a little while, but I finally caught on. With time, the fuzzy feeling began to clear up and eventually went away.
Another challenge is that each medication comes with different side effects, which you learn to deal with. Some of the issues I’ve experienced include osteoporosis due to steroids, leading to some issues with my knee and foot. The medicines have caused some puffiness, weight gain, and stomach trouble, so I do watch my diet carefully. I’ve also experienced mild depression, which I understand is somewhat expected. Overall though, it hasn’t been too bad.
Our IVIg and SCIg medication guides make it easy to compare products and reach decisions to fit the needs of your patients. Download these free charts now.
What role has your specialty pharmacy played in helping manage your care?
For the 7 months of receiving IVIg infusions, BioMatrix Specialty Pharmacy shipped all the medication and supplies straight to my home. [When] the homecare nurse arrived, she would have everything needed already at my house. If we had any question at all, we just called BioMatrix. They were very familiar with my history and medical needs. It was comforting to know people so personable and knowledgeable were just a call away.
What advice would you offer to others with the same diagnosis?
Reducing antibodies with IVIg gave me an opportunity I never thought I’d see again. I’m so happy IVIg is available, allowing me to have a successful outcome. For patients who struggle with high antibodies and who are facing a transplant, I totally recommend speaking to your doctor about it. When you get that crucial call that an organ is available, it feels great to know you have done everything possible to prepare for a successful transplant! I’ve had my kidney now for 5 years! Thank you to my kidney donor, my doctors, IVIg and BioMatrix! I am so very thankful for this second chance at life!
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