Further to Marie’s article on our website at the end of 2013, Marie still keeps her chin up despite ongoing obstacles. Here is an update that she wanted to share with you for International Day of Happiness, 20th March 2014.
By Marie Maldonado
I was admitted to UCLH on January 27th 2013 and stayed on Ward T08 until February 13th 2013. During this time, my meds were totally changed as we are trying to discover what the ‘nodule’ is that’s been found by CT scan in my right lung. This nodule may be cancerous and has led to Papworth removing me from the transplant list. My extensive research and contacts with lung transplantees all over the world told me that it could be fungal in origin and both Dr Porter and Prof Brown took that on board, and the lab did indeed grow a strange fungus on my sputum. During my first few days on the ward, the team consulted with an expert microbiologist in Bristol and decided which antifungal they would give me. Unfortunately, this new drug (Voriconazole) would be impacted by the Omeprazole which has been shielding me from gastric reflux, part of the Scleroderma package. The doctors tried removing the Omeprazole from my drug regime and I have been suffering ever since with the most horrible acid reflux/heartburn/indigestion, something that has led to a complete change of diet for me (so perhaps not all bad!) I am now taking Lansoprazole and Ranitidine and the reflux has abated a little, though I am still woken in the night and have to sit chugging Gaviscon for an hour or so.
I asked for a frank talk with Prof Brown about my prognosis and he admitted that I am indeed in end stage fibrosis and basically that I was looking at ‘weeks’. I was discharged with a full care package and now have a carer come in to the flat three times a day as my mobility is limited. I have a wheelchair for hospital visits and my very own ministering angel, who masquerades as my friend, neighbour and ex-colleague, who pushes it for me. To begin with, it was extremely hard to adjust to people letting themselves into my home and doing, very slowly, things that I knew I could do at twice the speed had I only the breath to do them with. Organising the meds has been another challenge as I have nine medications to take in various combinations and at various times throughout the day. However, as time has gone on, it has become much easier as I have been able to get into a routine and as my regular carer has learned what I need doing and how I want it done. (I have turned into an anal mini-Hitler, I’m afraid, sitting like the Queen of Sheba ordering her about.) My friends have been amazing (I never knew I had so many) and I think there have only been two days when I haven’t received a visit, if not from a friend then from a health professional. My social calendar has never been so full. Sometimes, I am grateful when no one is coming as I can then chill out and relax a little more.
It may be because of the meds or it may be the new dietary regime, or it may just be my long held spiritual beliefs bubbling up to the surface again, but I actually feel great! Indeed, if it weren’t for the fact that I’m very ill, I would be very happy. Hell, I AM very happy! I imagine the doctors think I’m in denial, but I’m truly not; I just have the feeling that, if everything falls into place and the nodule can be seen to be non-cancerous, then I have a very, very, very slim chance of persuading Papworth to put me back on the transplant list and heigh ho, another challenge will begin. (There’s a sense that this period is something of a dry run for what life will be like post transplant, if I ever get that far.) Unfortunately, I don’t think everyone sees it quite this way. The Haringey Palliative Care Nurse whom I have seen has been tremendous as far as practicalities are concerned; she’s obtained bits and pieces of equipment for me and even got my Disability Living Allowance almost tripled. However, her whole focus is on my dying. Let me give you an example: the physio at UCLH arranged for the pulmonary rehab physio from the class I was attending for several months before Christmas to come to my house once a week. He’s another bright young man and he takes me through half an hour or so of gentle exercise with weights, culminating in my ‘walking the hall’. I keep note of how much I do, and each week I increase my score a little or go up a weight. I’m supposed to do this every day, but I truly don’t seem to have the time, plus it is hard to motivate myself when I’m alone. It does make me feel great! When I told the Palliative Nurse about this, she was almost disapproving. I could hear a ‘tut’ and see a shake of the head. I felt she wanted me to stay on the sofa and up the morphine and be comfortable. Unfortunately, Haringey Palliative Care does not go in for any kind of complementary therapies, unlike the Palliatives at UCLH, so my requests for massage, reflexology, etc. have fallen on deaf ears. Luckily, the universe heard my pleas and sent me an aromatherapist who gave me an incredible massage, and yesterday my hairdresser (from Mr Toppers in Tottenham Court Road) came all the way from her home in Brixton to crop my hair. Everything falls into place, like a jigsaw that does itself.
My dietary regime revolves around the reflux and the need not to trigger it. I have taken advice from fellow sufferers and am having some success. No more coffee, chocolate, cheese … in fact, as money is now no object (well, I may as well spend it rather than save for my old age!) I am shopping (or being shopped for) at Planet Organic and Whole Foods Market. I eat only organic, totally healthy food in small portions and I now focus on my food rather than multitasking as I eat. Some of my friends bring me home cooked food to go in the freezer. In fact, the friend coming later today to take me out to Epping Forest is bringing portions of her amazing chicken casserole which we’ll have for lunch before we set off, with a few extra pots to go in the freezer for another day.
I have also taken advantage of having helpers (carers and friends) to tidy and organise my flat, in a very amateur Feng Shui way, to free up energy flow, etc. It works for me, as does surrounding myself with things of beauty. The corners, piled with bits and bobs for years, are being cleared and everything is slowly becoming more organised. It does make a difference. As does practising the Buddhist precept of ‘mindfulness’: organising in my head, for example, what I need to pick up from each room, so that I only have to make one journey.
As far as I can see, end stage fibrosis usually means admission to hospital, possibly an induced coma and then a very quick death. And I wonder if it has to be that way. If more people were able to count their blessings rather than turning their faces to the wall in despair, would their endings at least be easier, gentler and, hard though it is to believe, as enjoyable as mine is proving to be.