Reviews of Alicia: My Battle with Wegener's Disease

My book Alicia: My Battle with Wegener's Disease has been available for just over two months now and I have received some nice reviews on Amazon that I'd like to share with you now.

Great insight into surviving, living with and managing this disease. The engaging story of an amazing young woman’s personal struggle, survival and life with Wegener’s Disease.
— Lesley Mayne
Very informative, but above all a very moving book. On a personal level it has helped me understand my husband’s illness.
— M Mair
This is a first class read for all those who suffer or know someone who has Wegners, it show how strong Alicia is and how this could help those to be strong and determined to live life to the full, tears of sadness and tears of joy, so well written amazing and inspiring.
— C Dargon
Very honest and medically accurate as far as my own personal experience has gone.
— Becky Meyer

I want to thank everyone for the time and trouble they took to review the book on Amazon. It's a great thing to do as it makes the book more visible to other people who may find it useful to them.

Even so, I know that this is just a tiny fraction of the number of people who have read the book.

So if you have already bought the book and would like to leave an honest review on Amazon, I would really appreciate it!

Image provided under creative commons licence by woodley wonder works

Pregnancy - Alicia: My Battle with Wegener's Disease book excerpt

I hope that you have been enjoying the book excerpts from Alicia: My Battle with Wegener's Disease over the past two weeks. Today I have my final extract, a chapter about Alicia's pregnancy.

I imagine my children are going to save me from my vanity and be my passion and fill whatever fears I have of the amazing time I’m having right now being gone.
— GWEN STEFANI, Singer-songwriter

Alicia was worried about the initial stages of her pregnancy, the first 12 weeks mainly. She didn't tell the majority of her friends and family until 20 weeks had passed. Although Alicia firmly believes that you can't live your life worrying about what might happen, she didn't want people to be constantly asking her how she was or if her disease had flared up again. She knew that everyone else would be terrified on her behalf and she didn’t want to give them that worry. 

It would be Alicia’s first child. She wanted to take things day by day and to enjoy her pregnancy as much as she could. 

Alicia had the normal ailments anyone would have, and when she had a headache, for example, she couldn’t help but think about the Wegener’s Disease, but for the majority of the time she was remarkably positive.

We were very lucky that the RVI was on our doorstep and it is one of the oldest and most prestigious hospitals in the country. It has been providing healthcare in Newcastle and the North East for over 250 years, and its maternity department is one of the largest in the UK, delivering over 6,000 babies every year. Alicia had been there regarding her teeth and the neurosurgeons given her first MRI to discover the extent of the Wegener’s Granulomatosis in her head.

The RVI also offers a complete range of maternity care, from midwife-led care for women with straightforward and healthy pregnancies at the new Newcastle Birthing Centre, right through to the highest level of very specialist care for women who are found to have problems that need close attention. This includes immediate access to a full range of support services including obstetric anaesthetists and specialists in medical conditions during pregnancy.

The RVI is one of only two hospitals in the North East to offer consultant and midwifery led care - this means that although most babies are born without the need for a doctor, the Maternity Unit has a specialist doctor on site at all times should they be needed.

Dr MacDougall was Alicia’s consultant at the RVI. 

He was the final member of the team that assembled around Alicia and would help her deal with her Wegener’s Disease during the pregnancy.

Alicia had no strong views on how she wanted to give birth. Her top, indeed only priority, was that the baby be healthy. Although the RVI has a birthing centre which offers different ways of coping with labour such as birthing pools, this option wasn’t open to Alicia. Alicia had to use the delivery suite instead.

My concern was for both mother and baby. I was concerned that if something as simple as removing a tooth could cause a flare in Alicia’s Wegener’s, what would the trauma of having a baby do? Beyond the birth itself, I also wanted to be sure that Alicia could care for her child afterwards.

Dr MacDougall assured us that there would be consultants on hand whenever Alicia went into labour. The RVI had a board where they listed each pregnant mother with an expected difficult labour. All of the staff were aware of each mother’s birth plan and all of the problems associated with each birth. They knew Alicia’s case, even if they hadn’t specifically seen Wegener’s Disease before. As we later found out, one consultant had actually delivered a baby safely to a mother suffering from Wegener’s Disease, which was reassuring.

Alicia: My Battle with Wegener's Disease - Pregnancy

Alicia: My Battle with Wegener's Disease - Pregnancy

The pregnancy proceeded relatively normally. Alicia initially told no-one other then her parents and parents-in-law. She didn’t want to tempt fate. Even if getting pregnant was far easier than she’d expected, the pregnancy itself could still be problematic. She was still managing her expectations.

In the early weeks of Alicia’s pregnancy she suffered terrible acid reflux. This was largely due to her stomach lining being damaged from the excessive amounts of drugs she had taken while battling the Wegener’s Granulomatosis. Even though she was no longer taking as much medication, the damage was done, and Alicia had to continue to take Lansoprazole otherwise she would suffer reflux. This was especially true if she ate white bread or rich food.

The midwife and Dr Kaura wanted Alicia to come off the Lansoprazole while she was pregnant. They wondered if Alicia could stop taking it altogether and see if her stomach had repaired itself in the last four years. 

Alicia was as sick as a dog for 10 days. She literally couldn’t eat anything without suffering painful reflux. That included things like brown bread, plain rice and vegetables. 

Eventually Alicia had to admit defeat and go back to her GP. He reluctantly prescribed her Omeprazole to deal with the acid.

Alicia had the normal 12 week scan which showed that baby was developing normally, if a little underweight. 

The second scan at 20 weeks showed the baby progressing nicely. At this stage Alicia began showing and she began to tell friends and colleagues at work.

Normally, mothers would have no further scans but Dr MacDougall began scanning Alicia every two weeks to keep an eye on baby’s development. He said that auto-immune disease sufferers can often have smaller babies, so they need to be monitored.

At the 12 and 20 week scans, the hospital took photographs of the foetus and allowed Alicia to buy them. Of course, Alicia bought several each time and gave them out to friends and family.

The later scans were supposed to be strictly functional but the sonographer often let us keep a memento from them too. Alicia’s baby must have been one of the most photographed in the North east before birth!

A major obstacle that Alicia knew she would have to overcome with the pregnancy was her throat dilatation operation. The scar tissue from the tracheal stenosis would increase over time and every five or six months Alicia would have to have the tissue removed by Mr Welch.

Alicia had had one operation in early September, just before she had fallen pregnant. The timing of that couldn’t have been any better, as it meant that Alicia got to six months before she needed a further operation. Baby was doing well. Alicia was still worried about the general anaesthetic. ‘Babies don’t like general anaesthetics,’ said Dr MacDougall. ‘They like mothers who can’t breathe even less.’

Alicia had heard lots of horror stories about pregnancy and anaesthetics but she felt that she was in safe hands with Mr Welch. The operation was one he had carried out on her many times before and it was quick. The only difference was that this time Alicia was carrying a passenger. 

If you went to find out what happened, you can check out the book on Amazon.

Rock bottom - Alicia: My Battle with Wegener's Disease book excerpt

I have been posting a series of excerpts from my book, Alicia: My Battle with Wegener's Disease, over the past week or so. Today, I have a chapter entitled Rock Bottom.

God gave me Parkinson’s to show me I’m just a man like everyone else. To show me I’ve got human frailties like everyone else because that’s all I am – a man. If I die I have no regrets. I’ve tried to live a good life and do the right thing. But I’m not scared to die. Because I’ve made my peace.
— Muhammad Ali, Boxer

The need for Alicia to undergo her tracheostomy underlined the fact that her current treatment simply wasn’t working. Dr Higgins had said that there was no plan B. 

Alicia was breathing from a tube in her neck. She was still in pain. Alicia was massively overweight from the drugs. Her skin was horrendously scarred. She was taking high doses of steroids, methotrexate and the chemotherapy drug cyclophosphamide, and the Wegener’s Granulomatosis still wasn’t under control.

Alicia’s relationship with Kev was pushed to breaking point. She was living between the hospital and her parents house. He was working full time. Alicia was trying to rebuild her working life but it was virtually impossible. Stephen was working normal hours but Christine was on compassionate leave. Alicia was relying heavily upon her parents. 

Meanwhile Christine was trying to stay strong but every avenue of treatment had been exhausted and none of them had worked. Christine was trying to remain positive while grappling with the fact that her daughter had a tracheostomy, the same procedure that her own mother, Audrey, had undergone before she died. She was facing up to the fact that she might lose her daughter.

Alicia: My Battle with Wegener's Disease - rock bottom

Alicia: My Battle with Wegener's Disease - rock bottom

Alicia’s situation looked bleak.

Even if she somehow got through this immediate crisis what sort of future could she expect?

What else would the Wegener’s Granulomatosis hit her with? Would it spread to her lungs, liver and kidneys? What medication would she be dependant upon and what side effects would they have? Would she ever be rid of this hideous disease?

If Alicia did survive, what sort of existence would she have? She was an attractive young woman in her early twenties before the GPA had hit her. Now the disease was behind her nose, destroying her septum. The rapid weight gain linked to the steroid medication had given her stretch marks from her shoulders to her knees. The chemotherapy drugs had threatened her fertility. 

Would Kev still find her attractive? If their relationship ended would she ever meet anyone else who would accept her?

How would the disease affect all of her other relationships - with her family, friends and work colleagues? 

How could she possibly return to normality?

Alicia had far more questions than answers. The big question, though, was how was Dr Higgins going to treat her, now that all of the conventional treatments had failed?

If you want to continue reading, please check out my book on Amazon.

Chemotherapy - Alicia: My Battle with Wegener's Disease book excerpt

Here is another instalment in my series of extracts from my book, Alicia: My Battle with Wegener's Disease. This time the chapter is all about Alicia's chemotherapy treatment.

We are like butterflies who flutter for a day and think it is forever.
— Carl Sagan, Astronomer, astrophysicist, cosmologist, author

The doctors began to talk about chemotherapy as the next step. As Wegener’s is an auto-immune disease, the body’s own white blood cells begin to recognise a normal part of the body as an enemy and attack it. In the case of Wegener’s Disease it’s the small blood vessels that are singled out for attack. The doctors hoped that chemotherapy would wipe out Alicia’s white blood cells and therefore stop her body from attacking itself.

This would be a drastic undertaking and might have some serious consequences. The foremost in the doctor’s minds was Alicia’s ability to have children. The doctors arranged for Alicia to go to the Centre for Life, a pioneering life sciences centre, which fortunately was in Newcastle. They wanted Alicia to talk about her options.

Alicia knew that she wanted children but sometime off in the future. It was something she didn’t want to have to plan for at this stage of her life. It just wasn’t a priority for her, but the doctors made it a priority and forced her to think about it.

Alicia met with Dr Stewart in the Young Peoples Clinic to discuss her fertility issues. Dr Stewart talked about theoretical possibilities for ovarian tissue, immature and mature egg storage. In principal the best option for restoring Alicia’s fertility would be to consider a cycle of IVF treatment, egg collection, IVF and embryo storage. However, Alicia was severely limited for options because of the unplanned cyclophosphamide. Even without the cyclophosphamide, the high doses of steroids and Alicia’s general ill health meant that the chance of a satisfactory cycle resulting in embryos worthwhile storing, and therefore giving a reasonable chance of successful subsequent treatment was small. Alicia could take no action now. The priority was to get over the acute phase of the Wegener’s Disease and then come back to see Dr Stewart to see what her options were. 

Alicia’s symptoms had worsened to such a degree that the doctors couldn’t wait. They had reached the end of the line with the standard drugs. They had to give her the chemotherapy now or she might die.

Alicia: My Battle with Wegener's Disease - chemotherapy

Alicia would take a cocktail of anti sickness drugs before she had the chemotherapy as severe nausea is one of the most prominent side effects. She would normally be given it on a Friday. Alicia was given the cyclophosphamide intravenously, through a line in her hand. She would sit in the hospital room all day while it slowly crept into her veins. Claire and Christine were the nurses assigned to look after Alicia while she was undergoing chemotherapy.

Alicia would be sick continuously all day Saturday and Sunday. She would have to have a bucket next to her at all times, to catch her vomit. Alicia didn’t eat at all. She was still feeling the pain from the Wegener’s but now her whole body was hurting from the chemotherapy too. The pain was so overwhelming that Alicia would fall asleep. When she woke she would take more anti sickness drugs, as well as her painkillers, vomit and then pass out again. This cycle repeated itself again and again over the whole weekend. 

Incredibly, Alicia was at home almost every time she had her chemotherapy treatment. Christine would have to do everything for her daughter. She would get her up from bed, dress her, take her to the toilet and wash her hair. 

By the time Monday arrived, Alicia was starting to come around. 

Once, Alicia was so ill that she had to have the treatment in hospital. The doctors put a line directly into her stomach which had a box attached that had a plunger inside. Over time the box would automatically dispense anti sickness drugs directly into Alicia’s stomach. Tablets taken orally just weren’t getting into her system quickly enough.

Alicia’s direct memories of this time are sketchy, as she was so ill and taking so many drugs. She can only remember flashes, or tiny seemingly inconsequential memories.

Alicia remembers someone eating a bag of crisps nearby and the noise was magnified to the degree that Alicia felt that her head might explode. Similarly another patient was watching television in bed and the volume was so loud that Alicia wanted to get up and yank the plug out of the wall. A visitor sat by Alicia’s bed one day and rustled a carrier bag. Alicia wanted to throttle them with it! 

The pain meant that Alicia was on edge all the time. 

Alicia’s family visited her when she was in hospital but she has scant memories of this. Most of the time she was unconscious and unable to speak. 

The chemotherapy did not relieve any of Alicia’s Wegener’s symptoms. Instead, she had to cope with both the pain of the Wegener’s and the sickness caused by the cyclophosphamide.

If you liked what you read and want to find out more, please check out my book on Amazon.

Diagnosis - Alicia: My Battle with Wegener's Disease book excerpt

This is part two of a series of excerpts from my book Alicia: My Battle with Wegener's Disease. If you like what you read, please check out the book on Amazon. It's only just over £6, under $10 in the US.

Life’s under no obligation to give us what we expect.
— Margaret Mitchell, Journalist and Writer

It was over six weeks since her symptoms had begun. Alicia had lost a lot of weight because she wasn’t eating properly. She was constantly exhausted because she wasn’t sleeping. She had been off sick from work the whole time. She was still suffering from horrendous headaches, her nose wouldn’t stop running and her eye was swollen up. 

Alicia began to add earache to her list of symptoms, again on her left side. The headaches began to spread, now beginning to affect the top and left side of her head.

Throughout this period Alicia had had a persistent cough which had ever so slowly gotten worse and worse over time. It was a dry, tickly, irritating cough and initially she put it down to a common cold but eventually she realised it was another symptom. 

Despite her symptoms Alicia had left hospital. There was nothing more they could do for her, they had exhausted all of their tests. Alicia wanted to be at home in familiar surroundings.

Alicia was so low and desperate to know what was wrong with her. 

Dr Kaura had the answer. 

Alicia: My Battle with Wegener's Disease - Diagnosis

Alicia: My Battle with Wegener's Disease - Diagnosis

Alicia was sitting on the floor of her flat when the call came. Her parents were there with her at her flat in Kenton when Alicia’s GP, rang with the test results. He said ‘We think that it’s Wegener’s Granulomatosis.’ ‘What?’ said Stephen. ‘Give me a minute.’ Stephen scrabbled around for a pen and piece of paper. He could only find the back of a brown envelope to write on. ‘Can you spell that?’ Dr Kaura spelled out W-E-G-E-N-E-R-S G-R-A-N-U-L-O-M-A-T-O-S-I-S. 

‘Right, what’s that?’ asked Stephen. ‘We’re not exactly sure,’ said Dr Kaura. ‘We have never seen it before. Alicia needs to go and see the consultant at the Freeman Hospital urgently.’

When her dad put the phone down Alicia immediately entered the term Wegener’s Granulomatosis into her search engine on her computer. There weren’t many hits, but the first site she checked had a list of typical symptoms which matched her own. 

Later that day Alicia’s parents did their own internet search and were horrified to find that most sites reported that most Wegener’s sufferers died from the disease.

Alicia had known that she was ill, but she hadn’t realised just how ill she really was. 

If you enjoyed this extract, you can read more over at Amazon.