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| My dog, Joe |
From there I was admitted ...I was not really given a reason, they agreed it wasn't a kidney infection but they wanted to keep an eye on me and to to an ultrasound of my abdomen. But, this being the NHS and a bank holiday weekend nothing was happening fast. I was put on a saline drip and moved to a ward and from there I just waited until eventually on Monday I had an ultrasound...my spleen was slightly enlarged and I then found out that my bloods were all over the place. But still there was no consultant. By Tuesday when the holiday weekend was over I insisted on being transferred to the Private Wing, Parkside, as I had BUPA cover, and from there on in I had a consultant, in fact several. I'm not knocking the NHS but you wouldn't want to have an extended stay on an NHS ward, as a private patient I at least had my own room with en-suite and most importantly 24/7 access to my own consultants. No one knew what was wrong, I was told that I had acute hepatitis my ALT level was 950, its supposed to be under 40! and Lymphopenia, but they didn't know the cause. I was put onto the liver repairing drug N-Acetyl Cysteine by IV and the antibiotics Piptaz, Gentamicin and Metronidazole also by IV. I was scared, my family stayed with me day and night, sleeping in a chair next to my bed I was too frightened to be alone. I went downhill fast and the specialist consultants started to arrive. I had a constant temperature and Tachycardia and chronic diarrhoea, I was sick and my mouth was dry but most importantly my liver was in trouble. I was on one hour observation and blood was taken 4 or 5 times a day. I drank water constantly but I was so weakI couldn't lift a glass so I was given a beaker with a spout to drink from, it would be weeks before I had the strength to lift a glass again. I had no appetite and had barely eaten for days and was losing weight rapidly. I had a heart specialist, a general surgical consultant, a professor specialising in Lymphoma and a liver specialist. The very prominent professor order blood tests for Hepatitis A,B and C, CMV, EBV, PCR and T Spot, d.s. DNA, HIV, Blood cultures, Live biopsy, Myoplasma, Dengue, Spotted Fever, Typhoid, Coxiella, Hepatitis E, Leshmaniasis, Malaria, B2 Micro globulin and Toxoplasma.....and started talking about Lymphoma. I had 2 CAT scans that showed enlarged lymph nodes in my chest, under my arms and in my neck. A liver biopsy was performed on the Friday morning and as my liver was heading towards failure, the sample was biked to Kings College Hospital in London as an emergency to be reviewed by a Lymphoma specialist. Friday afternoon came and the professor visited me to tell me that all the blood tests had come back negative and he was now 95% certain that I had Lymphoma, but we would have to wait for the results of the liver biopsy. My world collapsed, my daughter was with me and we just hugged and cried...I was certain that I was going to die. He was arranging for me to have a lymph node removed from my armpit that weekend, I knew they were enlarged I could feel them now in the base of my neck. Saturday morning I woke and my face and arms were swollen and I was covered in a rash, the consultant was called in and I was given a shot of steroid and anti histamine...no one knew what was happening. As the day progressed my skin started to peel, starting with my face and even my eyelids by the afternoon my legs had turned purple and my whole body was shedding skin. All the IVs were removed, no one knew how to treat me and I know they were worried that the drugs were doing me more harm than good. They were finding it difficult to find veins to insert a line into to get bloods, my body was shutting down my veins were disappearing , so it was decided that on Monday I would have a pic line (central line) put in. My Lymph node removal was scheduled for Sunday afternoon and I had elected to have it under local anaesthetic, I didn't feel my body was strong enough for a general, there were lots of raised eyebrows but no one tried to stop me. It wasn't postponed because of my rash, the swelling had started to subside and I was too sick for them to wait. It was horrendous, to be inside an operating theatre when you are awake is not good news. I tried using visualisation techniques to distract me but the tears just flowed. They removed a 1.7cm Lymph Node. It took about an hour and when my nurse came down to collect me and my bed, I just sobbed.
Monday came and the pic line was inserted, this is done with ultrasound guidance as the tube is inserted into your upper arm and fed down into the top of your heart. The first try on my left arm failed, my veins were not in good shape and as I looked down at the pool of blood left on the sterile sheet I sobbed once again. It eventually was sited in my right arm!. I was at rockbottom.
It was now a waiting game for the results of my liver biopsy and my lymph node excision biopsy. My whole family thought I had Lymphoma and were distraught, they put on a brave face but my daughter admitted afterwards that every time she left me she would break down in tears and I spent many black hours thinking of how I would put my affairs in order. I sunk into despair. People often think they know how they will react if they are told they have a terminal illness, I had pondered this myself in the past, but in reality I didn't howl and cry constantly as I thought I would... I was just numb. Of course I cried, my eldest daughter was pregnant with her first child and I was devastated I did not want to die and couldn't bear the thought that I would not be here to share not only my daughters lives but my granddaughters too. I desperately did not want to leave them. All meds had been stopped after my rash appeared but I still had a fever, tachycardi, diarrhoea, and night sweats, bloods that were all over the place and liver function that was deteriorating. An echocardiogram of my heart was arranged and although I had Tachycardia my heart appeared normal but I did have a small pericardial effusion. The dermatologist was involved to try and fathom my rash and now very dry skin, but not itchy....she performed a skin biopsy, yet another op, to remove a section of my skin on my abdomen for analysis. I was told I had to imagine that my skin had been burned but not from the outside but the inside!
The week passed in a blur of believing that I had cancer, I was still under 24 hour observation at 4 hour intervals with bloods taken every time my fever spiked. Friday arrived and the Professor announced that the results of the liver biopsy were back and they showed no sign of cancer. I now had to wait for the lymph node results to come back which would confirm the no Lymphoma diagnosis ... but I started to have hope once again.
I was still very sick and the weekend passed slowly I was still eating very little and could barely get out of bed to go to the bathroom, my skin was still red and angry and I was applying cream every hour to alleviate the dry, irritation that was all over. I was told to be prepared that if I deteriorated any further I would have to be transfered to Intensive Care or possibly even transfered to Kings College In London to their specialized Liver Unit. On Monday when I had been in the hospital for 2 weeks and 2 days I was told that the Lymph Node results showed a drug allergy, I was given the diagnosis of DRESS syndrome (Drug Reaction Eosinophilia and Systematic Symptoms). Elation was what I felt, this could not be as bad as what I had imagined and at last I had a diagnosis and could be treated. My care was passed to the top liver specialist at the hospital, Dress was a very rare condition, one that nobody at this hospital, or most others, had ever been involved with. My specialist had never dealt with a case of this kind and took a day of research and speaking to every consultant he could throughout the UK to decide on a treatment plan. I now know that DRESS has an overall mortality rate of 10% increasing to as much as 40% when there is acute liver involvement, but at that time I was unaware of this. My liver was in a bad way and it was decided that I would be put onto IV Methylprednislone at the equivalent rate of 60mg prednislone for 10 days initially. My fever started to subside and gradually my liver started to improve I was still having the night sweats with the nurses having to change my sheets and gown several times a night and of course I didnt sleep on that dose of Methylprednislone, my sats were not stable but it was going in the right direction. My appetite started to return and I felt at last there was hope that I would recover. As I started to try and get up and move around once again I realised how weak I had become, my muscles had wasted in the weeks I had been unable to get out of bed. But I hoped and prayed that I was in recovery and waited patiently as twice daily they took my bloods eager for the results to see my liver repairing itself. Towards the end of of the third week I washed my hair and as I began brushing it, it began to fall out!. I didn't worry too much at this stage, I was alive and hopefully recovering that was all that mattered to me. As we went into the fourth week I was improving every day, I even felt up to visitors which I hadn't had except for my immediate family, and there was talk of me going home. I was discharged on the Thursday of that week 23rd September, I had been in hospital for 3 weeks and 5 days. I was to take 40mg of prednislone for the first week, then come back to see my consultant to hopefully start on a taper. I was going home..........
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