My life with FMD.
I was in my early 20s, when I first discovered I had high blood pressure, even though I was slim, and fit. A GP suspected renal artery stenosis, however when I had an angiogram, I was given the all clear.
For almost 10 years, my blood pressure climbed. It sat at 180/120 on 7 different medications, and would spike to 250/150. I had headaches that were agonizing and would wake me from sleep. I also experienced flank pain, nausea, vomiting, and palpitations. I was fortunate enough to be referred to the Alfred Hospital, and saw Professor J. Stockigt, and Professor Ken Thomson.
A renal vein sample and an angiogram confirmed I did not have essential hypertension, but instead had Fibromuscular Dysplasia (FMD). There was a stenosis of over 90% in my right renal artery, which was repaired by balloon angioplasty. I went on to have a stent placed in the same artery when it developed an aneurysm (FIG 1).
The majority of my FMD is intimal, which is less common, but more aggressive than the typical ‘string of beads’ medial FMD. It has been found in my renal, iliac and carotid arteries. The FMD and related hypertension resulted in damage to the lower pole of my kidney. Whilst my specialists were considering a partial nephrectomy, I discovered I was pregnant and was then referred to Dr Nicolas Radford, (Royal Women’s Hospital, Melbourne. My pregnancy and blood pressure was successfully managed, resulting in the birth of our daughter in 2005. I went on to have multiple miscarriages, and eventually, our son was born, prematurely, in 2009.
Two years ago, my blood pressure increased and became unmanageable. My right kidney continued to be affected by FMD and hypertension. When medications were not successful in reducing my blood pressure, many options were considered with coordination from my Consultant, Dr Nicolas Radford (St Vincent’s, Melbourne).
These included angioplasty, stenting, renal denervation, renal embolization, or a partial nephrectomy. It was decided that none of those options was viable.
On March 22, 2012, I had a right nephrectomy, performed by Dr Cathy Temelcos, (St Vincent’s, Melbourne). The nephrectomy is not a cure, but it has made my blood pressure manageable. I will continue to have close monitoring to watch for the spread of FMD in my left renal artery and other vessels.
Having multi-vessel FMD provides challenges to me as a patient, and to the medical community who treat me. I am however very grateful that I was finally diagnosed. I am a keen advocate for FMD, and encourage any doctor who has an unusual hypertensive patient to consider Fibromuscular Dysplasia as a cause.
Early diagnosis is the key to a healthy future.
FIG 1. Renal artey showing aneurysm.