It’s about three months since my heart transplant and it has been every bit the ‘roller coaster ride’ my doctors promised.
I’m living close to The Alfred hospital so that I can attend compulsory clinics, physiotherapy and education programs each week to prepare me for a return to normal life.
As with all organ transplant recipients I’m on a list of medications (16 types, 203 tablets each week), either to help prevent my body rejecting the new heart or to deal with various side effects.
I’m undergoing regular ECGs, ultrasounds, x-rays, MRIs, blood tests and biopsies of the heart. The biopsies are where a catheter is inserted through an incision in the neck into the heart chamber so that three or four heart tissue samples can be taken for laboratory examination.
Biopsies are about as much fun as they sound, but they are the only definitive way of gauging whether the heart is being rejected by the body’s immune system. Biopsies are taken weekly for the first six weeks, then fortnightly and eventually monthly for one year.
My first three biopsies after the transplant showed significant ‘rejection’, which was not the best way to begin a relationship with my new heart. As a result I spent weeks on a hospital ward, bored out of my mind, while the doctors increased my immunosuppressant medications, which included ‘nuking’ me (my term!) with infusions derived from horse and rabbit anti-bodies.
One of my doctors said I had a “kick ass” immune system that in normal circumstances would have kept me free from a range of illnesses for years. Sadly, “kick ass” immune systems aren’t good news in transplant patients. Rather, the doctors use drugs to lower the immune system to a compromise level; between the heart rejecting and retaining at least some level of immune system protection against viruses and bacteria.
Everyone has different tolerance levels and side effects to the medications during this ‘balancing’ period. In my case I’ve experienced painful mouth ulcers, severe tremors, oily skin and acne, blurry vision, sleep issues, blood noses and weight gain around the stomach and face.
The medications also cause sensitivity to the sun and potentially narrowing of the arteries, diabetes, gout and low bone density, among other conditions.
For the rest of their life transplanted patients must abide by the equivalent of a ‘pregnancy diet’ – no soft cheeses, no oysters, no runny eggs and no food from a Bain Marie. In other words, no foods considered a high risk of introducing harmful bacteria which may compromise a lowered immune system.
Sadly, my aim of returning to swimming laps at the local pool is looking unlikely. Heated indoor swimming pools, spas and saunas are high-risk for spreading bacteria and viruses. So too are crowded shopping centres, cinemas and public transport. While not to be avoided, apparently these places are best visited with caution, usually when they’re not crowded.
Heart transplant recipients typically have a higher-than-normal resting pulse of between 100-115 beats-a-minute. This is because there are no nerves connected to a transplanted heart. For the same reason, transplanted hearts take several minutes to pump at a level necessary to maintain vigorous exercise. The heart rate increases in response to changes in hormones circulating in the blood, in the absence of messages via nerves.
Transplant patients automatically have their drivers licence suspended. It’s not until months post-transplant that VicRoads may reinstate the licence, subject to all sorts of medical assurances. Jumping those bureaucratic hurdles is my next quest. Not having a licence is very restrictive and I’m hoping to be released to go home from The Alfred later this month (Jan 2016).
I’m writing this blog to give a glimpse into the immediate post-transplant journey of a heart transplant recipient. But of course, tens-of-thousands of transplant recipients have had similar journeys before mine.
I am most fortunate. Fortunate firstly to be alive. Fortunate to have amazingly supportive family members, friends, neighbors and work colleagues. I am also fortunate to have the most professional and supportive medical team imaginable.
One of my nurses light-heartedly suggested recently that I make up a “tall story” about how I received the multitude of scars which now cover my torso from various heart procedures.
I thought about that, then decided I already had a suitably amazing story:
“I’ve had a heart transplant.”