Kidney transplant recipient Timmy Nelson shares his experience with dialysis and transplant and what he learned from it.
In January of 2013, after many years of reoccurring back pain, I decided to undergo surgery to resolve the issue. The surgery and results could not have been better. After two days, my surgeon felt I would be able to go home as long as I committed to follow his instructions.
My back was mended, but after reviewing the results of seemingly endless examinations, I was informed that my kidneys were not operating properly and once released, a week later, I needed to see a renal doctor.
Dialysis doesn't mean you can't travel
After numerous renal appointments, blood work and examinations, I was informed that I may need to consider dialysis. By November of that same year, there was nothing to consider - I had to go on dialysis. My employment required extensive travel, many times via airplane.
During a consultation with my renal doctor, he told me about dialysis options and said I would be a good candidate for peritoneal dialysis (PD), provided I truly had the self-discipline that I seemed to demonstrate during my interactions with him. He explained the process and how it is totally manageable, even considering my extensive travel schedule, and referred me to a dialysis nurse for more in-depth questions. After these consultations and training with the nurses, my supplies were ordered and cycler delivered.
At home, I had great flexibility because I was able to place my cycler at the most advantageous location allowing me the most access to my home. With some planning and proper placement of items needed, I completed my dialysis process and still followed my daily routine at home.
When I traveled, I completed my dialysis process in the evening and overnight in my hotel room. Even for short business trips it seemed that I was packing for many days due to the supplies I needed to carry. But with the exception of my cycler, once I arrived at the airport everything was checked luggage. My travel schedule was calendared in advance, so once my plans were completed, I scheduled solution deliveries to the city and hotel per my schedule. Hotels were always gracious and accepted my solution deliveries at least a day in advance of my arrival.
I followed this process with no issues until I decided to retire in March of 2015. After retirement, I still traveled. I routinely took flights and, with some advanced planning, I even took a five-day cruise.
As you can tell, I am a believer and supporter of PD. It did require discipline, maintaining a schedule, and some planning, but compared to a requirement of days throughout the week at a dialysis center (no matter how comfortable and friendly the atmosphere), this was my preferred dialysis option.
Despite working out my dialysis, I knew I couldn’t live this way forever. My nephrologist had recommended the Penn Transplant Institute. I met with Penn transplant nephrologist, Mary Ann Lim, MD, and the kidney transplant team for a kidney transplant evaluation, and my name was added to the UNOS transplant waiting list.
Receiving the call I'd been waiting for
After being on the transplant waiting list for three and half years, I was blessed to receive a kidney transplant.
The transplant process actually began on July 19 – when I received the first call from Penn Medicine regarding the initial offer. At 2:00 pm, I was told I was number four on the list and that I’d receive an update at 6:00 pm. I had been planning to go to Kansas for a family reunion that week, but decided to cancel my plans in anticipation of a possible kidney transplant.
At 6:00 pm, the team called and let me know I was number three on the list and that I could expect another update the next day at 2:00 pm. At that very time the next day, Penn let me know that I was number 2 on the list. On July 21st at noon, I got the call to go to the hospital – the kidney was allocated to me!
While awaiting a possible transplant my thoughts continually drifted to the aftermath. Now that it had become a reality those thoughts were amplified; after all, this was a major surgery.
- What would life be like after transplantation?
- What pain would I experience? How long?
- What medicine would be prescribed to alleviate the pain?
- Could I become dependent?
- How would healing process go? How long would it take?
- Would I be immobile? How long?
- What would life be like afterwards?
My strict adherence to post-transplant instructions caused everything to happen just as my health team said it would. My fears transitioned to action steps to help ensure a successful outcome.
Day two after surgery I began walking, very gingerly I might add. I received pain medication during my 4 days of hospitalization, but each day I needed less, wanted less, and received less pain medication.
After discharge, I continued increasing my mobility by frequently walking in my home, and soon I was outside increasing my walking duration multiple times each day.
What a joy to take a shower in my own home and sleep in my own bed!
The need for pain medication continually decreased, and I began substituting pain medication with Tylenol. 10 days post-surgery Tylenol was all that I needed to control and reduce the pain caused by my incision healing.
Twice weekly I saw my post-transplant coordinator. By week three I was released to moderately drive (freedom)!
I was assigned a nephrologist and saw her weekly, then every two weeks, then monthly. Now I am up to three months between visits!
My life today
When I share that I am a kidney transplanted patient, people are in awe and remark how healthy I look and how active I seem to be. What a great compliment, and so encouraging for me to strive for improvement!
My attitude has always been positive, but now living life seems even better than before. Perhaps because I was blessed to receive this new opportunity and as long as it lasts, I will never take it for granted.
Since being transplanted I have become physically stronger each day. Just as importantly, I have stayed committed to supporting those enduring the challenges of End-Stage Renal Disease (ESRD).
I continue to offer my assistance to my local dialysis facility, the Network 4 regional office, and the Centers for Medicare & Medicaid Services (CMS) by attempting to positively impact the number of dialysis patients on the transplant wait list and increase dialysis patient utilization for home-based modalities.
My advice to others
As I look back on my dialysis and transplant journey, there are some key points I feel compelled to share with all dialysis patients and those considering transplant.
- Write down and ask questions, sometimes repeatedly, until your understanding is clear.
- Accept your health condition, and then make a personal commitment to manage it. Don’t allow it to manage you.
- Research to the best of your ability, and ask friends and loved ones to help you research.
- Adhere to your dialysis prescription as if your life depends on it (it does). DML – Dialysis Means Life.
- Commit to work with, not contrary to, the transplant team.
- Follow all medical/health care instructions/requests to the best of your ability.
- Strive to continually improve your healthy habits (exercising, eating, etc.).
- Continue to develop positive relationships with your health care team.
- Control your dialysis; do not let it control you.
- Sometimes you will feel down - it's normal - but commit to not staying down.
- Be optimistic. Every day is an opportunity to do and feel better.
Always remember, your health care team can only work with what you give them. They know what must be done; they will advise you; and they can and will assist you. However, it is up to you to actually do it.