When Times Get Hard… Just Push Harder

“I want to explain how exhausted I am. Even in my dreams. How I wake up tired. How I’m being drowned by some kind of black wave.”

I am awakened by the hunger, but as I awake, the tiredness awakes! I am unsure of how much time has passed since I last ate.  The darkness has crept into the room, a trademark sign of the night’s arrival, informing me that yet again, another day has passed.  I need to eat but I can’t move. I am too weak and I’m too hungry! 

Sometimes it feels like my heart is beating too fast, other times the beat is just so strong I think its irregular rhythm can be seen protruding through my chest. With this comes a pain, a dull throbbing pain that can lurk in my chest for hours, its intensity fluctuating with the hearts beating. Then there is the stabbing pain, which is somewhat regular too; it pierces through my heart and reaches up along my shoulder. Fortunately this pain is less frequent but it can often be rather breath-taking.  

My fingers regularly turn a dark shade of blue as do my lips and toes. Upon awaking after sleep I am unable to feel my hands and feet. This is due to my heart being unable to pump the blood effectively around my body as it sometimes only has the strength to pump the blood to my vital organs. Thank goodness it can still manage that!

I feel dizzy most evenings as my heart tires more and sometimes I am unable to talk. Thinking is also a challenge sometimes as I can get easily confused and I find it hard to articulate my jumbled thoughts. This is because my brain is receiving a significantly less amount of oxygen.

I am lying here alone unable to hold back the tears. I am crying because I am alone and I am crying because I can’t ask anyone to come and help me. There are so many people that care about me and I just cannot tell them how much I need someone to help me right now. I feel ashamed of my weakness but I so desperately want help. These conflicting emotions that contribute to my daily battles are unfortunately exacerbating the tiredness.  I am so tired of being tired! 

I am not and never have been a fan of self- pity. I strongly believe, through personal experience, that when you hit the bottom there is nowhere to go but upwards. During such times in my life it has been the stench of despair and depression that has finally driven me to rise up and fight.  I decided that this will be no different!

It was on one of these dark, hungry, lonely mornings that I decided to fight. With the little energy I had I started with the phone calls. I organised for myself a social work service which provided me with a daily care plan and other similar methods of help. I also swallowed my pride and reached out to friends and family for the support I so desperately and almost unwillingly needed. I finally realised that asking for help was in fact a sign of strength as opposed that of a weakness. While drowning in my self -pity I had somehow, almost forgotten many of my strongest beliefs and opinions.

I also organised for myself the service of a counsellor. This was much needed for me to effectively deal with the change in my life from a previously proactive busy and driven lifestyle to that of an unwell, weak and scared girl in the depths of emotional turmoil. My counsellor was and is a wonderful and impartial guide throughout this time of struggle and fear. I tell her the same things I tell my friends and family but in a different manner. I can open myself up completely to her without having to protect her from my pain.

Learning to accept my illness and to stop being angry at myself for a physical weakness that is out-with my control has been one of the most challenging issues I have had to deal with throughout this journey so far. I have now realised that this has not made me any weaker but exactly the opposite. I have a strong faith in my emotional and mental strength and I know my physical strength will soon be back with a vengeance once I have my new pulmonary heart valve.

While being almost always housebound with very few good days left, (days in which I have the physical capacity to participate in a light social activity such as visiting friends or a short walk),  I have decided to keep my mind as active as possible. I read continuously and try to ‘self educate’ through any sources accessible to me in my physically limited, temporary life. My intellectual and academic interests are rather diverse and I now have ‘all the time in the world’ to pursue these interests. Although sometimes challenging against the fight of the tiredness etc, my knowledge is vastly expanding along with the parameters of my little crazy mind.

This is not a situation I have chosen to be in. This is not a situation that I am particularly happy about being in. This is however where I am in my life at the moment and I have chosen to utilise this and play the proverbial hand that I have been dealt. This is a game I will not lose.

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A Series of Unfortunate Events

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!

Goodbye Good Gews… Hello Uncertainty

“Disappointment, defeat and despair, are the tools we are given to show us the way”.

To be given bad news can be hard. This I understand… but to be given false hope…that can really break a heart. To be told good news only to later discover that this information was wrong brings a pain of the kind that I can’t begin to explain.

I’m still waiting. I feel like I have been waiting for this surgery my whole life. I’ve had to call the hospital numerous times to chase this up and push them to get on with my case.  Lately the green eyed, hot cardiologist doesn’t appear to be so attractive. I finally get somewhere with the ‘wonderful’ service that is the NHS, only to discover that most of what I was told in February was incorrect…

The recovery time after surgery will not be one month as previously advised but a minimum of three to six months. I almost died of heart failure right there and then in the cardiologist’s office, at the thought of being in my mother’s house for such a long period of time! I was then informed that the subsequent valve replacements may not be done by key -hole surgery and that I will in fact have to have open heart surgery every ten years thus imposing greater risks each time. Although my stomach had started to turn a little by this point in the conversation, I was generally ok, but as the last bombshell was dropped I felt as though the ground was falling from beneath me and I started to consider that this may only be a dream.  I will still have to take warpharine after the valve transplant…. For how long they are unsure. I have stepped back in time. The dreams of the pitter pattering of little feet are all but demolished. I may not be able to have a family after all!

I feel a sense of ‘de-javu’ as the doctor stares into my eyes inquisitively, anticipating some kind of emotional reaction. I have nothing to say. I just want to go home. I want to run as far away from this place and these awful people as possible. Thoughts of Los Angeles wander into my clouded mind. A time of struggle and hardship of a different kind, but also a time of complete freedom….I can’t go back there though. I need this operation to stay alive and I have no option but to go forward.

I can hear the voice of this professional, clinical male telling me that there is a further problem that I must also be aware of. “Hit me with it” I say. I’m ready for anything now, nothing really matters. I wanted to have children!

He continues to talk and I continue to listen. It’s not like I have a choice, really. This is happening to me and its happening to me now. I can’t change that, I can’t run away from it and I can’t make it any less real. My only option here apart from straight up denial, is to face the facts and deal with it. My informer tells me that there is a blockage in my heart and they are not entirely sure of what it is. The only way they will be able to find out what it is exactly,  is to operate. So basically there is an extra problem in my heart and they can’t tell me anything about it until they open me up.” Great! Tell me more,” I say. After asking if I am ok yet again, he proceeds with his array of new information and informs me that I also have a hole in my heart.

As I attempt to let this new information sink in I find it very hard not to be consumed with anger. I wouldn’t be hearing any of this so late on if they had informed me correctly in the first place! I am unable to think clearly at this moment in time as I have been out for a good few hours today and the tiredness is beginning to take over my body and mind like a debilitating powerful enemy, an enemy I have been fighting all day just to enable me to make this appointment….

it is time for me to leave. Not unlike a zombie, I make my journey home with a heavy heart and a sadness that i cannot quite explain. i could deal with not having a family before. i was prepared, or as prepared as one may be. That was a concrete answer and somewhat manageable,… but this uncertainty of not knowing how long i will be on that that awful drug and ultimately not knowing if i can or cannot have children of my own is a feeling I am unsure of and have no idea how to deal with. All I know is i need to lie down and I need to sleep. I am ridiculously tired and my heart is beating too fast and it hurts!