My consultant informed me in august of 2012 that I needed to have a pulmonary valve transplant. At this time I was concerned with the challenges I would subsequently face regarding having children of my own. The tests I needed to have carried out were unfortunately not arranged and after making many frustrating phone calls I was eventually brought back to the hospital for these all important test. This however was not achieved until the following February.
Upon receiving the test results I was then informed of the seriousness of my condition and told that I needed to have the surgery as soon as possible. The consultant proclaimed that he would discuss my case at the next weekly meeting, assign me to a surgeon and arrange for me to meet with said surgeon. This did not happen!
Upon further incessant phone calls from myself I was eventually assigned to a surgeon with whom I met (not until mid-June) and he apologised for all of the previous clerical errors. The surgeon confirmed that I would be put on his waiting list immediately and that the wait consisted of around 8 weeks but if there were any cancellations I was to be ready at short notice. This also did not happen!
Almost six weeks later I had to spend a day in accident and emergency due to my symptoms worsening and I inadvertently learned that the surgeon had not in fact put me on said waiting list. I was furious! After further complaining I was finally given a pre- op assessment the following week with the promise of being operated on within the next few weeks. The medical professionals had however failed to inform me that I had to have any required dental work carried out before the surgery in order to reduce and risk of infection.
I came across this information independently and have since tried to address this issue. My dentist however, claim that they cannot fit me in for my required fillings until mid-august which would render me unfit for surgery until September. After calling the hospital yet again they called the dentist with the aim of solving this problem. The dentist then called me back and confirmed that this was the only date available to me and informed me that the hospital had not informed them that I required the surgery within a few weeks and I had to work with them and remember that they had other patients to tend to.
The dentist in the hospital refuses to treat me as I am registered with a dentist of my own. This issue remains unsolved today. I was told by my consultant in February that if the surgery was not done soon the damage to my heart may be irreversible. This surgery is now long overdue and the symptoms of which I am now suffering are confirmation that this should have been done months ago.
I would like to say that I am angry but the truth is I don’t have enough energy to be angry. I am tired of calling these people constantly and tired of complaining. I am tired of being told that what needs to be done has not been done and I am simply tired of being tired.
I have however received some good news. The surgeon informed me that I will only be on warpharine for three to six months and I will be able to have children afterwards. As great as this news may be, I find it hard to feel joy yet again after being told so many different things. I am just tired of all of this!