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Facing The Facts

Here I am, back in hospital.

I have a room with a view yet again. It’s almost nine in the morning as I type this, and the sun gleams over the roof-tops and tall buildings outside. There are metallic blue windows, tiled roofs, and pale blue and coral-coloured sides of buildings lit up in the sun. There is a many-windowed building  folded up like a concertina. The Sydney Harbour bridge peeks out from behind a long, tall, serrated structure the colour of bone, and of-course there is good old Centerpoint Tower – now unfortunately emblazoned with the ubiquitous ‘Westfield’ logo, but standing tall and straight nonetheless; bringing back childhood memories of riding up in it’s elevators, peering out through the thick glass at the ant-like people below. These are memories mixed with kid-sized denim jackets, hair-scrunchies, the smell of hot chips, and made-in-China koala bears in the gift shop afterwards.

I have tried, over the past weeks, when things have been really tough, to retreat into memory. Despite years of a debilitating illness, I have some pretty damn good ones. However, I’ve found that it’s just not enough. Recalling the past only serves to melt it further out of existence. All we have is right now, and my ‘now’ is not all that I would like it to be.

Perhaps it won’t ever be. I’m starting to accept this. But it’s a process. Last week the head of the lung transplant team came into my hospital room and told me that I couldn’t be considered for the list because I my weight is still too low, and I have too much scar tissue from two previous surgeries as a child. If I get my weight up they might reconsider because, of-course, they don’t like to leave people with no hope whatsoever.

Sometimes, there really is no hope and you have to face up to facts. That is how I felt on the day the transplant surgeon talked to me. Flolan, the drug that was supposed to ‘keep me alive until transplant’ was clearly not working. I had experienced no improvement while on the drug, and actually seemed to be getting worse. For months I put up with intermittent severe shortness of breath, a side-effect that doctors said would eventually go away. Over the last few weeks it grew so chronic that one day I finally decided I’d had enough and went into St Vincent’s Emergency Department. It seemed there was something more than ‘side-effects’ going on.

There was something wrong with me, all the specialists agreed, but they didn’t know what. Blood tests, chest ex-rays, and a CT scan were ordered. The Hickman line that delivered the Flolan was removed because they thought it was infected, and the drug was administered through my arm, causing a snaking red line along my skin and a constant stinging sensation.

The Hickman line had a small contamination, but not enough to cause the kinds of problems I’d been experiencing. Bloods tests didn’t show up any viruses or bugs either. They would give me antibiotics just in case, and because I did have some kind of inflammation. Perhaps, they said, my condition was simply deteriorating. This is what Pulmonary Hypertension is – you get worse and worse. You stop being able to breathe.

So when the transplant surgeon told me I was no longer able to be on the transplant list, I had the realisation that I am going to die of this disease.

Really, I’ve known this for a long time. One way or another, I will end up gasping my last breaths, bloated and sick with heart-failure. This is how it is. I have a heart that cannot work properly for very much longer. How much longer, I don’t know. My lungs are becoming more and more constricted with Pulmonary Hypertension and they too, at some stage, will fail to give me enough oxygen to live. Even if I have a transplant and it goes wonderfully well, I will end up the same way. I will have, if I am lucky, ten or fifteen good years, and then the same thing will happen – those two very vital organs will fail and I will be back in this hospital ward  laboriously breathing – in- out – in – out – in – out – until one day I stop.

This is my fate and although it is impossible to accept, I can’t stop it from being so.

Since the transplant surgeon’s grim announcement several more things have happened. I was mistakenly given an iron infusion with way too much saline for someone already in heart failure. This caused a heap of fluid to go onto my lungs and I had a very scary night and then a following few days where I was really struggling and there were doubts that I would live. I don’t remember much about this time; mostly I was drugged out or completely fatigued. They gave me morphine, sub-cutaneously, to help open my airways. The sub-cut morphine hurt like hell but I do remember it giving me some relief. I also remember more conscious moments of angrily demanding of the stony-faced circle of doctors at morning rounds that they just figure out a way that I can breathe.

Then one of them came up with the idea of using a CPAP machine to force air into my lungs and clear off the fluid. This actually worked, and even more amazingly, gave my by now incredibly tired lung muscles a break and I was finally able to sleep properly. Wearing it makes me look and sound like Darth Vader, and it’s quite tight and uncomfortable, but, fuck, it’s so damn amazing to be able to breathe again that I simply don’t care. And as the fluid has cleared, my lungs have become stronger again, and I have been able to use it for less and less time each day.

I have also come off Flolan and gone back onto a much milder drug called Sildenafil. This is the drug that I used to be very stable on but that I had to stop taking after moving to NSW at a time when the government had decided it was a no-go as far as funding went.

The best thing that has happened is that my recovery has co-incided with being weaned off the Flolan. This could mean that my condition is not detiorating at all, but that Flolan caused me to deteriorate. My doctors do suspect this, and I really hope their suspicions are correct. Perhaps now that I am off it and back on the wonderfully stabilising combination of Bosentan and Sildenafil, I can get stronger, put on weight, and maybe even get some of my life back. Maybe.

And maybe, qualify for transplant and have a bit of a proper life. Maybe.

I have had so much time, lying in bed here, to think. I think about death, but I also think about what I want from the future, and what I want in the present. I think about my amazing family who have shown an unprecedented level of care and support through all of this. My mother constantly shops and cooks food for me, and stays with me all day, helping me with all the minute tasks I can no longer do. She hugs me or talks to me through the times when death becomes so real it makes me sob out loud with fear. My dad works hard all day and then uncomplainingly comes and sits by my bed, gives me back massages to help me breathe, gets me anything I ask for, and reads books out loud to me because holding them up and trying to read still makes me short of breath. For a few days after the accidental over-infusion, either he or my mother would stay until 3am sometimes, because I was scared of being left alone.

My Aunt, who is a GP flew down from Queensland to see me, as well as to talk with doctors and help us make sense of everything. Another of my Aunts visits regularly and gives me wonderful support, and has been incredibly generous and thoughtful in helping me get anything I need for recovery and/or distraction. My grandmother also flew down from Queensland for a few days, and, as her visit co-incided with the depressing announcement of Professor ‘No-Transplant-for-You’, comforted me through the worst of it and then distracted me from thoughts of death by playing cards with me on my Zombie-edition pack  (kind of an ironic choice of playing cards now that I think of it). My grandmother on my dad’s side, who is not well herself, has also given me heaps of support by calling and sending lovely packages. My always very supportive sister is so busy running the family business and keeping things going I haven’t seen her for ages it seems, but I know she does a lot to help keep everyone, particularly me, going.

And friends – wonderful friends who keep calling and writing even though I am often to tired to respond.

I look out the window down at the park and wish I could be in the cool green grass with no shoes on. I wish I could be sitting the little Italian restaurant in the pergola eating something delicious, or having a coffee. Sometimes I think of what it would be like to have a successful transplant. I think about getting up early in the morning and slipping out and going jogging. Running through a strip of local bush perhaps, finishing up with a walk along Manly beach inhaling the ocean air. If I do get to have a transplant, I will appreciate my second-hand heart and lungs. I will be the fittest, healthiest transplant survivor I can be.

In the meantime, I’ve been getting better every day. I’ve given up thirty years of vegetarianism for a high-protein diet that will help me put on muscle and get stronger. I’m focusing on calories, carbs, and nutrition. Yesterday, hooked up to a walker and portable oxygen, I even went for a short walk around the nurse’s station – amazing, since I haven’t walked further than a few paces away from my bed for weeks.

Death will happen. I have to accept that. I guess I still want to hope that I can delay it for a good long while yet.


12 responses »

  1. Oh Leela, I had no idea you were going thru such misery. I haven’t been keeping up and I knew you were having a hard time but not to this extent. I sure hope the new (old) meds do the trick. They always say don’t fix it if it isn’t broke, and it sounds like it WAS working for you and it’s such a bummer that the government had to get involved. I have been working in my yard and planting flowers and feeling so good lately. From now on, I will think of you and appreciate more what good health I do have.

  2. I’m hoping and praying that the Bosentan and Sildenafil work and that it was the Flolan that started all this. I can’t even imagine what you’re going through. Definitely makes me put things into perspective.

  3. Leela, I am so very sorry it has to be this way. I really don’t know what to say other than I am thinking of you and I am glad you’ve got support of family and friends.
    You write so beautifully. Thank you for sharing your story.
    You are so strong.

  4. Hi, I just wanted to wish you all the best in your quest to gain some weight and get back on the transplant list! It sounds like the change back to your old meds is showing a bit of a change for the better so hopefully things continue to go uphill for you.

    I’m visiting via Curlypops, I had a liver transplant almost 6 months ago.

  5. I lost my Mother to cancer many years ago. But while she was alive I did not treat her as more of an invalid than necessary. Keep living while you are alive. Your story touched my heart. Cherrie

  6. What a battle some people have to live and there are others in the world that don’t appreciate their good health and drink and smoke and take drugs. It is an unfair world, but I hope that your luck takes a turn for the good and you get to walk on the sand and breathe the salt air.

  7. Leela, I sincerely hope the drugs continue to work for you and you will get stronger, so good you were able to get up and walk around.
    I would love to see you when I come down on 12th of April.
    All my love and thinking of you

  8. hi there,

    couldnt help but leave a lil msg to say its awesome you have gotten off flolan and your chances of getting on the transplant maybe likely, gives me a lil ray of hope that the Sth Aust transplant team gives me a look but that could be a while yet only recently diagnosed with PAH with the obvious nasty brother Right side failure plus excessive liver congestion about a month ago since then havnt left hospital and as a very sctive 27yr old guy i could think of alot better things to do but considering my closness to death a month ago i think its best 😉 anyways keep the gd work up love the blog


    • In hospital for a month – that’s tough, I feel for you. I have been in here for two, maybe nearly three weeks? It’s not exactly restful or pleasant – constant noise and interruption, daily blood tests, irksome specialist rounds every morning… Ugh. I hope you start improving so that you can at least go home soon. PAH is a nasty disease, but hopefully once your doctors get on top of things, you’ll be able to keep it stable with drugs and 02 therapy for quite a long time before you have to think about transplant. On the other hand, you don’t want to leave it too late like I possibly have. Anyway, I really hope your condition improves and you feel better. E-mail me if you have any PH questions and I’ll do my best to help you.

  9. Leela you have amazing strength and a wonderful family. So good to read your blog, thanks.

  10. I hope you are home by now and gaining some weight. I wish I could help you!

  11. I almost cried reading this. You have an amazing perspective on life. Sorry I’m a bit behind. I’ve been getting stuck in to study. A week before my first nursing placement I have finally been tentatively diagnosed with Wegeners Gramulatosis, a heart, sinus, potentially kidney thing. I’m finally on some treatment and doing a bit better. I started studying nursing this year after my hospital experience. The nurses were amazing. As luck has it, my placement is down the hallway from where I stayed for too long.
    My thoughts and prayers are with you.


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