My Lymph Node Transplant – by Simone
This blog started off as a medium to be able to help us cope with the loss of our children, and in that way, also reach out to others and help them cope with their loss in any way that we could. Over time, this has morphed into a bit of a diary about our/my life – covering the death of children, our journey with grief, life’s disappointments, cancer scares, IVF and so much more. And more often than not the honest way in which we share here is pretty scary. Because putting your stuff out there is scary, being vulnerable completely terrifying.
But I am choosing to share this next part of my life with you, because I am hoping that in some way I will be able to help others inflicted with the same debilitating disorder as me. I have written before about my struggle with cancer and the fact that I have now been clear for 6.5 years. What I haven’t written much about is my struggle with lymphedema, the swelling in my right leg post my cancer treatment.
So what is lymphedema? It refers to swelling that generally occurs in one of your arms or legs. Sometimes both arms or both legs swell. Lymphedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling. While there is presently no cure for lymphedema, it can be managed with early diagnosis and diligent care of your affected limb.
Due to the removal of the lymph nodes in my right groin, and the subsequent radiation that followed, I have had an increasingly “swollen” leg. We managed to keep it under good control for the first 2 or so years, and then when Murray was born via c-section in 2013, my leg really started to get bad. We had been so focused on my leg not being negatively impacted by my pregnancy that we hadn’t really thought that potentially the lymph fluid had learned to re-route itself through my pelvis. After my c-section, the new routes that the lymph fluid had found were irreparably damaged. 15 months later and Bella was born and my leg just continued to slowly get worse. When people used to ask me about it and whether it bothered me, I quite clearly remember answering that if this was what had to happen for me to have 2 beautiful, healthy children, then the sacrifice was cheap at the price. And then we lost Bella…and then Thomas…
The recommended and conservative way to treat lymphedema is through manual lymph drainage and bandaging with a lymphedema therapist and to wear compression stockings every waking moment. Those that know me will know that you will either see me with my big bandages on or with my class 4 compression. I cant wear normal shoes anymore, I pretty much only ever wear long dresses or skirts and really battle to find pants that fit my leg. I have been completely dedicated to this conservative form of treatment, and my WONDERFUL therapist Vaunda, who has been just as dedicated to this cause as myself, has been an incredibly pillar of strength to me and has kept me dedicated when I had had enough. We calculated that over the last 6 years she has seem me over 600 times, and has been much, much more that just my lymphedema therapist. She has seen me early in the morning, on the weekends, during her holiday, in varying hospitals, has supported me thought all my life challenges and has really fought in my corner all the way with my medical aid, when they refused to pay for my treatment for the first 3 years. But lymphedema is much more than just having a “fat” leg which means I cant wear pretty shoes. I am in constant discomfort and pain, my mobility is being impacted. I can no longer run like I used to, I cant just do a hike or walk, I am limited as to the things that I can do with Murray as getting up and down from the floor is really tough. Its hugely impacted my body image, I refuse to swim in the sea or pool because of the looks I get and in general it leaves you feeling pretty crappy about yourself.
So that brings us to where we are today – on Monday I had a free flap vascularised lymph node transplant (VLNT). Its the first leg that has been done in South Africa so far! They have been doing this surgery for a while overseas but its brand new in SA. Its been quite a journey to get to this point. I have spoken to doctors, therapists and patients all over the world and even looked at going to Norway to have surgery done. There is no “quick fix” for lymphedema, nobody has anyone found a cure up until this point, but there are ways that patients are being helped. I have had so many completely dedicated doctors try to help me in different ways here in SA and this is where I just feel so grateful to have the amazing medical care that we do have here in SA. There were 2 possible doctors in Cape Town who could have done this surgery for me. I chose Dr Chris Price as he had gained more experience in doing this kind of micro-surgery during his fellowship in Canada. I also liked his conservative and measured approach and felt like he really properly considered my case and whether this would be the best solution for me, given all the information he gathered during our interactions.
He also really helped to fight in my corner with my Medical Aid, Discovery, who up to this point have still refused to pay for the surgery which I have now had to self-fund. I am still hoping that Discovery might come to the party, and am waiting to hear on 2 different decisions in this regard from them. Nothing worthwhile ever comes easy right?! I am hoping that eventually they will at least contribute to a portion of the surgery just to make me go away! 🙂
So far the surgery seems to have gone according to plan and Chris is happy with how my leg is looking. He harvested lymph nodes from my left groin (the donor site) and implanted the flap into my right shin. We will only know in 6 to 12 months if it has actually worked or not but one baby step at a time.
I have thought very very long and hard about whether to share photos of my leg on this forum. I have decided that I will share some pre-surgery photos in the hope that in 12 months time I will be able to share some post surgery photos showing the improvement. The current post-surgery photos would definitely put most people off ever reading this blog again!
Thank you to the amazing medical fraternity in SA who have supported me as you have – Drs’ Chris Price, Laura Redman, Roger Graham, Georgina McAdam, Paul Sinclair, Lizle Oosthuizen, Sr Vaunda Parsonage, Nicole van Besouw and the staff and management at Kingsbury Hospital. Thank you for so effortlessly giving of yourself to help patients like me have a better life. I will never be able to fully express my gratitude to you!
Pillar of strength sweet brave friend. Praying hard for you – I know the surgery will work. Hope the recovery is quick and the results are successful. xx
You are an amazing woman. It’s sad how something that is so much part of your life is only coming out now because of all the other awful-more awful-parts that have overshadowed such a daily ‘irritant’ to put it mildly. I hope the surgery will surpass what you imagine. All the best.
We actually tried IVF end of November and this month. First time cancelled due to poor response, second time only one out of two eggs fertilised and found out this week that it failed. I can so understand why you will continue as long as you can afford it. I would too. Alas, I can’t. So the hopes are all dashed. Which now makes it even easier to imagine where you are about that, and your drive to keep going. It’s not about having A child, it’s about having the family you know is possible, the family others get to have without struggling. I wish you the best in every endeavour.
Thank you for sharing your story. It helps.
You are definitely making the world a better place by sharing your story. It takes courage for one to share their deepest pains with the world. I am sure alot of people learnt alot from this. I have lived with primary lympedema of both legs for the past 20 years & have dealt with emotional pain sometimes.
Sending postive thoughts your way. Thank you for sharing your story , it touched & changed me in so many ways. You are an amazing woman.
Thanks for sharing something that is very close to my heart. I have LE in my left arm since 2009. I found a plastic surgeon in JHB who is experienced enough and is willing to do the LVT for me at the end of May 2019. And yes, I will have to pay it myself as Discovery refused 3 times, but if it is successful they will also benefit from this (financially) – unfair I think. I hope for a 100% success rate, but even a slight 5% improvement will make it worthwhile – emotionally, physically and financially!
Yes it is a chance we all take and although medical aids refuse to pay for it now, that in future they will reconsider and will people like us give hope for new LE patients in the near future and who will not have to struggle with their medical aids as we do currently.
All the best and I can’t wait for the “after-photos”
Michelle who is your dr, and which hospital?
I am also looking for a dr that can do this procedure