The strength and courage within…

While sitting outside my nephrologists consultation room today, I was surrounded by so many patients fighting their own battles. Some struggling to walk on their own, some wearing masks and struggling to breathe, while others were accompanied by family and anxiously awaiting their turn to see their specialist. Some patients are in high spirits and don’t look ill, while others look like they’re in physical pain and consumed by fear. I would fall into both categories because even though I try to stay positive, there is a certain amount of anxiety and fear which comes with every Drs visit, especially since this was my 3rd visit in 2months and 2nd X-ray since discharge. Thankfully, my dr had good news this time. The X-ray showed that my lungs were completely clear and my kidney function had improved slightly. Even though kidney disease is so unpredictable and you don’t always display noticeable physical symptoms, you are forced to wake up every day with renewed fighting spirit to battle this dreaded disease. No matter how you may be feeling you are so grateful for the day that you have been blessed with, that you make the most of it and live for the here and now, despite the uncertainty that lies ahead. I fight this disease not only for myself, but more especially, for my family members that depend on me and are always rooting for me. This is not an easy journey, but I will not be consumed by this disease, as it does not define who I am. My strength, courage and faith defines who I am, so I will continue to be a kidney warrior and a woman of strength.

I am thankful

After three weeks of dr visits, a hospital admission, X-rays and a biopsy, I am truly thankful to be well on my way to recovery. Today, while waiting for my turn to have an X-ray, I felt an amazing sense of peace within. These few weeks had been really tough and so difficult to comprehend. You realize how dramatically life can change in just a split second. It’s given me time to reflect on life; the important things & how precious and unpredictable life really is. We get so caught up in life’s many (sometimes, insignificant) stressors, that we tend to neglect or ignore the signs our bodies give us to communicate that something’s out of balance. I believe that these obstacles bring us closer to God and is intended to create and reset the balance in our lives. Today I am truly thankful as I celebrate my 18th month kidney-versary.

Strength, Faith and Love

The strange thing about life is that when you least expect it, it throws you a curve ball. The past few days have been very unsettling, as I was admitted to hospital for a lung infection. The last time that I was in an isolation room was 18 months ago, post transplant. This time, being in my donor’s hospital room felt different because we had experienced so much excitement and anticipation pre- transplant, as I was going to receive her kidney and this amazing gift of life. The past few days have not been easy. I was called 5 minutes after an X-ray to come straight through to the hospital for admission. Once there, it took a few days for test results that were inconclusive, which then led to a lung biopsy. I think this was my 10th/ 11th procedure thus far. I thought that by now these procedures and tests would be smooth sailing since I’ve been here many times but, unfortunately, I always have a mini meltdown when I enter the theatre and I’m surrounded by all the medical staff and the big theatre lights. Not to mention having to consent, while making sure that you fully understand the risks of the procedure. This frightened me, but I needed to put on my big girl/ mommy pants and do this.The procedure went well and certain conditions could be ruled out. I had to be patient as the biopsy results were not immediate. I eventually received the results when I arrived at home on a two hour “day-pass” with the consent of the pulmonologist of course. As I arrived home we got the call that the lab results came back and treatment could be started. I felt relived and thankful that this could be treated, as well as concerned about the side effects of the antibiotics on my kidney. This is going to be a slow, long journey to recovery, but I am grateful to my family for their love and support. The amazing staff showed care, compassion and reassurance that they will do everything to treat this condition. They all showed amazing support , although it’s quite strange how there’s such a mix of different personas amongst them (awkward, serious, clinical, funny and caring). My time in hospital thus far has been quite emotionally draining, as you are constantly surrounded by pain,cries, death, and families grieving their loved ones. You start feeling the pain and loss of others although you had never met them or their loved ones. You become hyper vigilant for every sound made, as you try to figure out whether it is a laugh or cry. This experience has taught me once again to never lose hope as “God is in control.”

Celebrating organ donors and their families

Sitting in St. George’s Cathedral this afternoon surrounded by many organ transplant recipients, donors and their families gave me a great sense of belonging. No matter whether you had received a transplant, donated an organ or had to make the tough decision to donate an organ of a loved one, we had all experienced an array of emotions . As a transplant recipient you often so focused on your recovery post transplant, while experiencing a whirlwind of emotions, that you forget what your family, donor or your donor’s family may be going through emotionally. No words could describe the gratitude one feels towards our families, donors and their families. Today we celebrate those super humans that walk among us, while remembering those that have gone before us. We are forever thankful ❤️

Here’s to all the women of strength…

Growing up, I had always wondered how my mom and aunt could still play so many roles, while battling with kidney disease. I always admired their strength and the sacrifices they would make to make sure that everyone around them was fine. This amazed me. However, I was often saddened by the physical and unspoken emotional pain that they had endured while fighting this disease. Their children were always put first, no matter what they had to endure. Unfortunately, a few years ago I had to endure this same physical and emotional pain. It felt so surreal when I was diagnosed with the same disease. Looking back, I now understand what it means to be a wife, mother and sister battling a chronic illness. You experience good days and bad days, but every day you get up anyway, for the sake of your loved ones. Today, I salute all the female warriors who continue to fight this disease. I SALUTE YOU!

Appreciate the small things in life

I’m fast approaching one and a half years post transplant, however, it feels like yesterday when I was wheeled into the operating theatre, awaiting this life saving gift from my donor. All these memories are still clear in my mind, as this was an emotional and physical rollercoaster that really tested my inner strength. This precious gift has changed my life. It has made me appreciate the small things, like the precious moments with my family, having more quiet time and just living life without dwelling on the “what if’s.” Most of all, I appreciate all those people in my life that continue to support me and who makes life beautiful. No matter what the future holds I will continue to live in the present and appreciate the small things in life.

Faith, Hope and Love

As I enter into my forties, I have been reflecting on the bitter sweet moments that I’ve experienced while battling kidney disease. Not only has this disease affected me, but it has taken away two of our loved ones, my dear mother and aunt. I have often wondered how these two strong women battled this disease for so many years, while still being able to play the many family roles in their lives, especially that of mother. Then this disease affected me and I realised that I only have two choices; being consumed by it or becoming a true kidney warrior. Getting the support from my loved ones, especially my two biggest fans; my husband and son, put everything into perspective. My son would often remind me to put a smile on my face and he would just know how to make mommy feel better. I try my best to live my life for here and now, but it’s not always that easy. There are days when fear and anxiety surface, as I have become hyper- vigilant of any symptom that may arise. All I can do is live in faith, hope and surround myself with those who show constant love and care. So here’s to another forty years.

Weekend Argus article(Sunday Edition)

A year later…

After more medication, plasma exchange and a period of 29 and a half days in hospital my kidney function was improving and I was able to be reunited with my loved ones. The days and weeks following my discharge was a period of adjusting and healing. Adjusting to being in my home environment amongst my loved ones and healing both physically and emotionally. It was such a wonderful feeling being reunited with my family, especially with my husband and son whom I missed tremendously. My son was his warm, affectionate self who loves smothering me with hugs and kisses. It felt surreal being at home. I did, however, feel a bit anxious about being at home and having no medical team to look after me , as every slight discomfort made me feel extremely uneasy. I struggled to get up and walk short distances, as I constantly felt light headed and exhausted. It took me a long time to regain my strength and feel human again. At first I had weekly blood tests and doctors visits. This evoked lots of anxiety within me. My recovery was slow, but I was thankful that my health was improving. A year later and my life has changed completely. I have more energy than before and I have so much time on my hands, as I no longer have to schedule my life around dialysis. I am able to give my family the attention they deserve and we can finally go on family holidays without a machine or worrying about dialysis. I have more bathroom breaks, now that I’m not dependent on a machine to remove fluids and toxins. I am able to shower, swim and bath in a little more than a puddle of water. I have become more active for my kidneys and general well being. From a couch potato to 10km beginners running course to participating in regular 5km and 10km races. I am truly thankful for all that I have accomplished during these past few months. One of the lessons learnt during this journey was that I needed to “let go”. Let go of the negative past experiences and pain that I had suffered during this journey. I needed to start living in the “here and now.” This was not easy, but I knew that letting go was necessary in order for me to move on. This chapter had already been written, so all I can do is stay positive, believe and have faith.

The days following my transplant ( January 2017)

It’s hard sometimes to reflect on my journey with kidney disease, but I believe that there is healing in writing. Not only for myself , but for others that may be battling with a disease or just feeling vulnerable at a certain point in their life. I have learnt through the years that it’s okay to feel vulnerable sometimes, because trying to be brave all the time is unhealthy and hard work. The day after the transplant I felt almost human again. I remember being alone in an ICU ward and connected to many machines. There are some periods following the transplant that was a blur, literally and figuratively a blur, as I was highly medicated and on on-demand morphine. I remember not being able to keep my eyes open. Everything felt so surreal. At times I wondered whether I was alive or whether this was all just a dream. I vaguely remember my husband and a few family members visiting that day, however there were moments that I would be unsure as to whether they were there or whether it was all a dream. Besides feeling drowsy, in pain and unable to move, I remember everybody commenting on the fact that I was urinating. Although I could not really express myself in that state, I was overjoyed and relieved. This was truly a blessing, as I had not urinated in years and I became dependent on machines to get rid of fluids. This felt amazing! I was also reunited with my earth angel, which immediately lifted my spirits. We were both in pain, but at least we were together. We could complain together and laugh together. Being in an ICU ward is in itself quite a traumatic experience. It’s so noisy with machine alarms sounding all night and patients being transferred to ICU at all hours. Families waiting in line to see their loved ones… sometimes for the very last time. I hated being in that environment. My results seemed satisfactory and I went for a renogram the next day, which is a scan to check how my kidney was functioning. I saw the surgeon that afternoon before she went home. Everything was looking good thus far, but she was still waiting for the results of the renogram. I felt such relief. For the first time in years I felt this weight being lifted from my shoulders. All I ever wanted was a normal life, free of dialysis. A few minutes after my surgeon had left, the sister in charge of ICU notified me that Prof M was on her way back to hospital and needed to take me back into theatre immediately. For a minute I had difficulty processing what the sister was saying. I kept telling her that I had just spoken to Prof M and that my results looked fine. After the initial shock she explained that the renogram results came back and it did not look good. I was devastated! A few minutes later Prof M arrived. She tried to console me and explain that this is necessary, but I could sense her concern. So many thoughts racing through my mind. I asked God, ” Why me?” I called upon God and my guardian angel, my mom. I felt broken. All I wanted to do was to wake up from this nightmare. I had to be stronger than this, I needed to fight back no matter how physically and emotionally painful this was going to be. I needed to do this for my family, I was not going to give up!