By Jim Myers
I recently did a Broadcast on Kidney Stories 2, with Kidney Transplant Warrior and Organ Donation Advocate, Tom Ottman.
Tom And FSGS
In 1997, Tom was diagnosed with FSGS The first hint of ESRD came from a routine annual physical. Tom managed to avoid dialysis for the next 16 years before his first of 2 preemptive kidney transplants by eating a sensible kidney friendly diet. (FSGS) In 2011, he was put on the kidney transplant list and after 2.5 years he was transplanted. He did face many obstacles to transplant including 6 calls as an alternate before getting transplanted, including one admission and discharge became the donor kidney was not “ideal.”
Tom’s Kidney Transplant
On November 17th, 2013, he received his first kidney transplant at Atrium Health in North Carolina. He faced many challenges after his transplant including proactive testing, reactive procedures and medication adjustments.
First Kidney Transplant Failed
This first kidney transplant lasted 7 years, as the kidney slowly lost function over time due to Transplant Glomerulopathy. Once his GET hit 20%, he was referred back to the transplant center for an evaluation for a 2d kidney transplant.
On The Inactive List
In March of 2000, he was once again approved for the transplant list, but he was placed on inactive status due to pulmonary hypertension. His doctors suggested dialysis to remove the excess fluid causing the high blood pressure in his heart and arteries in order to get on the active list, but Tom refused. With a healthier diet, he lost 20 pounds, alleviating the PH, and placing him after retesting on the active, ready to be transplanted list.
Back On The Active List, Tom Gets THE CALL!
After 6 months, he got THE CALL in September of 2020. Tom accepted a high risk Hepatitis C antibody kidney, because Hep C is now curable. To date he has had no signs of Hep C. He had his 2d preemptive kidney transplant on September 17th, 2020.
Post-Transplant Challenges
Tom has faced some challenges since his 2nd kidney transplant. His labs showed signs of kidney rejection in November of 2000 and at the same time they showed the presence of the BK Virus. It is changing because treatment for rejection requires you are highly immunosuppressive while treatment for the BK Virus requires you not to be immunosuppressive at all so the body can fight it off. (BK Virus)
After 8 infusions of Thymoglobulin and Solu-Medrol Steroid, the rejection episode seems to be over. 50+ Infusions of Cidofovir and 12 infusions of Privigen in IVIg from, a human blood product containing antibody, Tom may have beaten the BK Virus as well. He has also suffered from a dropped foot.
Tom The Advocate
Tom has also been a very active kidney advocate, his activities are listed below He is particularly known for his comprehensive advice to Kidney Transplant List Candidates.
Advice For Kidney Transplant List Candidates
• Always present your best self. Providers are always watching and evaluating.
• Maintain a positive attitude. Attend to any emotional issues. Join a Support Group.
• Be thankful. Remember to appreciate and recognize your Healthcare Team for their care.
• Advocate for yourself. Ask questions.
• Own your disease. Educate yourself about it from reliable sources.
• Be completely compliant with all instructions and Doctors’ orders.
• Maintain your best overall general health.
• Work on improving any health issues that are sub par. Exercise.
• Follow a kidney-friendly healthy diet.
• Take your medications on time and never miss a dose.
• Operate on “Lombardi Time”. “If you’re not early, you’re late.”
• If you know you will need procedures don’t wait to be told. Get your colonoscopy, get your female exam, get dental clearance.
• Make all necessary evaluation appointments as soon as possible. If it means being inconvenienced or driving to a less convenient location; so be it. The goal is to shorten the process as much as possible, get listed, and begin accruing waiting time.
• Don’t take no for an answer. If you are initially declined or listed as “Inactive”, find out what you can do to resolve it.
• Make sure you have some form of insurance and/or private resources available to pay for the transplant and aftercare. (Help may be available. Ask your Transplant Center)
• Make sure you have a caregiver to attend appointments and assist you during recovery.
• Make sure you have adequate transportation.
Thomas B. Ottmann – Avocacy Activities
Kidney Disease Awareness and Organ Donation Advocacy
• Carolinas Medical Center Kidney Disease Support Group: Member 2011 to Present
• Save A Life Group: Organ Donation Outreach Advocate: 2014 to Present
• LifeShare of the Carolinas: Ambassador & Organ Donation Advocate: 2015 to Present
• National Kidney Foundation: Organ Donation Advocate, Peer Mentor: 2011 to Present
• Carolinas Medical Center, Transplant Center: Peer Speaker at Kidney Transplantation Group Training Sessions:
2015 to Present
• Carolinas Medical Center, Transplant Center Patient Advisory Council for Transplants (PACT):
Kidney Representative and Chairman, 2 Year Term 2015-2016
• Carolinas Medical Center, Transplant Symposium for Kidney Disease Professionals: Patient Guest Speaker, 2016, 2017 & 2018
• LifeShare Carolinas, Flag Raising Ceremony
at Artium Health Pineville Medical Center: Patient Guest Speaker, April 2019
• Transplant Talk South Carolina Support Group: Patient Speaker, May 2019
Conclusion
Tom has had some difficult issues to deal with in his life, FSGS, 2 Kidney Transplants and having a kidney rejection at the same time as dealing with the BK Virus. He has overcome all obstacles and yet continues to raise awareness of kidney disease. This is a great kidney patient.