Timber!!!!!!!!!

Apparently there were winds of up to 100mph when we were away on holiday. I might not believed that had I not seen the evidence for myself! Luckily we didn't notice this on Friday night as it was pitch black when we got home - but the following morning we were rather confused to see a lot of foliage just outside the patio. The 60ft tree at the back of the garden had been completely uprooted and blown down!! It was a healthy tree (in fact it had been checked out before) but the winds must have been phenomenal. It unfortunately has gone straight through the greenhouse, shattering the glass and buckling the metal frame. I was more upset that we had spent a week at Easter cleaning the greenhouse and planting seedlings and tomatoes! It is also leaning on the hut which has been pushed backwards, and I don't think it will spring back. It also has a hole in the roof but we can't get into the door to inspect the damage. Here are some pictures...

Of course Seb has found it all very interesting.  I couldn't see him in the garden yesterday and it wasn't until I looked up I realised he was up on the hut roof!  He had just climbed up the tree trunk and was up there wandering around and barking at a dog in another garden!  We thought he was stuck and made a gallant attempt to get him down.  The video shows Andrew trying to entice him and I put the camera down when he seemed to be headed over the other side of the roof.   Turns out he can get up and down there by himself since he has done in another twice since and seems to think we have set up this arrangement for his benefit! 

We have been asked by the insurance company to get some quotes to remove the tree and replace the greenhouse/hut so we will need to try and get that sorted, and keep everything crossed they pay out!   The patio was due to be done soon but we might have to hold off until this is sorted.  At least it wasn't through my extension, into the neighbours garden, or worst case, landed on Seb!   We escaped the volcano on holiday but clearly were due a natural disaster of some kind. 

Ideas now for a small (!) tree to plant in its place,??

Ciao!!

We are home after a lovely week in Sorrento and back to gale force winds, rain and a fallen tree - but I will save that for another blog.  Here are some pictures of our trip..

Looking over Marina Picolo in Sorrento, which is on the Neapolitan riveria, being around an hours drive from Naples.

Monastic cloisters in Sorrento - the monastery is now an art school but the cloisters are still open to the public.  I really loved the cloisters as they were so peaceful and had beautiful climbing roses in full bloom.

At the hotel pool with Andrew trying to read his kindle and me being bored and playing with the camera!  It was lovely warm weather - about 24/25c but not hot enough to go in the pool, which was rather chilly to say the least.

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St. Michaels Church in Anacapri.

These are Votives around St Anthony's tomb in the Basilica in Sorrento where he is the Patron Saint.  I read when I came back that people left these as an offering when praying to a Saint, or in thanks for a prayer answered.  There were lots of little plaques of body parts - including these lungs in this picture - which I assume were related to prayers around illness.  Apparently in Sorrento a lot of these votives were from Sailors, as he was also the saint for navigation.  I have always known St Anthony to pray to when you need to find something and a friend gave me a little statue when I was waiting to 'find new lungs'.  He was also one of my Aunty Agnes' favourite saints and when I lost my wedding and engagement rings (long story) she had half the Church putting money in his box!  The rings did turn up and I did find some new lungs.  I lit a wee candle at his statue for Aunty Agnes.

From the island of Capri.   This is about a 20 minute boat ride from Sorrento, so we visited for the day.  Capri town was very upmarket with expensive jewellery stores and designer shops.  We then took a bus further up the island to Anacapri, where is was a little quieter and had lovely winding streets.  From here you can take a cable car ride to the very top of the island for amazing views.  The cable car was great fun and I managed to get on and off without falling over :-)

The ruins of an old mill in Sorrento.  We found this by accident but then looked it up in the book later as we had no idea what it was!  It was down a steep drop in the water and at night it looked quite spooky.

We went on a trip to Mount Vesuvius, which famously erupted in 79AD covering the cities of Pompeii and Herculaneum under ash and mud.  It has continued to erupt and the last small eruption was 1944 -but they say it will definitely erupt again and it is likely to be on a massive scale!  The bus takes you so far up the mountain, then there is a windy path to the top, where you can peer into the crater.  We of course had to go to the top.  My lungs behaved impeccably (although it was very dusty) but my joints were a struggle - however when I nearly overtaken by two elderly ladies I was most determined to get to the top haha.  It was worth the climb and the views were amazing.

We then went to visit Pompeii, which had been completely covered in ash.  It is gradually being excavated to reveal the remains of Roman buildings and streets.  It is a vast area so we only covered a small part, but with a guide, we probably did see the main features.  Amongst the ruins you could see for example, a bakers over, where a bakery would have stood, and many shop fronts.  The pavements had scores from chariot wheels, and they had reconstructed the small amphitheatre where gladiator fights would have taken place.  There were a couple of bodies on display which has been 'frozen' in the ash, which was both fascinating and macabre in equal quantities.  I was more disturbed by the preserved dog!  Speaking of which, there were so many stray dogs in Pompeii and we must have passed at least 7 large dogs lying around in the ruins.  I was confused because there were signs saying not to touch the stray dogs but they had collars on.  I read when I came home that a charity has stepped in, who vaccinated, feed and care for these dogs while they look to rehome them.  I don't feel so bad about them now - I wanted to bring them all home :-)

This is another view over Sorrento.  There are no beaches as such, but these bathing platforms, like piers into the ocean with sunbeds.

Having a strawberry juice - made completely from crushed strawberries - yum!

Outside St. Francis' Church - where there are benches looking out over the water.  Second picture is back in the monastic cloisters in the evening since I liked them so much!

We took the bus up the Amalfi coast, which has some breathtaking views and some rather windy, narrow, rather scary roads!  This picture is Positano, a small village perched on the cliffside.  The 2nd picture is St. Andrews Cathedral in Amalfi, of which he is the Patron Saint.

We took a boat trip from Amalfi to the Emerald Grotto, which is a cave bathed in a green light.  The cave wasn't that interesting to be honest, but the boat trip was nice!

On the last day - one of the small streets in Sorrento which wind around the Old Town and where you can pass hours just wandering around.  Especially when you have a memory and sense of direction like mine..

And now back home to some howling gales.  Seb was caught by surprise when we went to collect him and did quite a lot of tail wagging before he remembered he had to be huffy!  So he was a bit off hand and indignant for a while and then decided to be my friend again :-)

Catch Up

Since I didn't really blog about what I have been up to last week, I have a few things to update on!

I was speaking at George Heriot private school in Edinburgh a couple of weeks ago.  They had invited me to talk to 4th year pupils about my experiences of transplant, since the pupils have been doing some work on organ donation so this helps put the information in context for them.  I had to do two 40 minute talks back to back, to two different classes (about 35 pupils in each).   They were very attentive but it was hard to get them to interact in anyway  -much quieter than when I was speaking to primary 7 classes!  It is easier if they do interact though, but towards the end some pupils did ask some questions.  I was exhausted afterwards from telling my entire story twice but hopefully it was worth it and they will remember the human aspect of organ donation.

Last weekend Kirsty organised a small gathering to celebrate her friend Nicola's anniversary, who lost her fight with CF last year.  Last year Kirsty had organised a Disney party for Nicola, so this year we celebrated by watching her favourite film, Beauty and the Beast and having a small get together in her memory.  It was a lovely evening.   The following week has been CF week and we finished that last night with Kirsty's annual fundraising pub crawl.  She does this every year for the CF Trust, where her and her friends get dressed up in fancy dress and go around pubs in Glasgow City centre collecting money (with permission in advance from the pubs of course).   This was the first year myself and Victoria joined them, and of course I had to get Andrew roped in too!  We had a good night although the town was so quiet last night because there is a big football match today (most people know what I think about football!!) but people were still generous and (mostly) welcoming :-)  I haven't hear the exact amount raised yet but any amount makes a difference and by going out and meeting people we are raising the profile of CF.


Some pictures of the night.  Gregg as spider man attracted a lot of attention and several people asked to have their picture taken.  Victoria was dressed as Alice in Wonderland but got mistaken as Cinderella, Little Bo Peep and Dorothy :-)   

Apart from the fundraising events, I have managed to catch up with quite a few friends in the last couple of weeks which is my favourite thing to do :-)  I am also trying to get myself organised for my holiday to Sorrento - only 5 more sleeps!  I am looking forward to some warm weather (I hope) as it has been raining on and off all week after the one good spell of sunshine.  I have only been back at work 10 days and feel like I need a holiday already, which is never a good sign haha.   By the end of July I will have one less session again though so will see if that is less tiring over the summer.  The PBL group is going well and I only have 2 sessions this week and then the students will be on holiday for the summer anyway.

Lastly it is Victoria's 1st transplant anniversary tomorrow - she is at transplant clinic for her 1 year bronchoscopy so keeping everything crossed for a good result! 

CF WEEK:   8th - 14th May

This week is national Cystic Fibrosis Week so I thought I should perhaps dedicate a post and take the opportunity to raise some awareness!

What is Cystic Fibrosis?

CF is one of the UK's most common life threatening, genetic condition, which means you are born with it.  1 in 25 of the population carry the CF gene but you need to have two copies to have the condition.  If both your parents are 'carriers' of the gene there is a 1 in 4 chance they will both pass on the faulty gene and you will have CF.  If you inherit one gene you are called a carrier and do not have the disease.

How does it affect the body?

The faulty gene is one that controls a certain protein (called CFTR) in the body which controls salt and chloride movement in and out of cells.  When this isn't working properly it causes mucus to be sticky and thick - this occurs mainly in the lungs, digestive system and sinuses.  It also causes the sweat to be very salty. People with CF can be affected in different ways and to different degrees of severity because other 'modulator' genes can result in the faulty CFTR protein working more or less effectively  - it's not very straightforward!

Lungs:   In the lungs the thick sticky mucus is the ideal breeding ground for bacteria.  Repeated chest infections cause damage over the years, causing formation of lung cysts ('Cystic') and scarring ('Fibrosis').  The lungs develop chronic infection, which causes ongoing damage and inflammation.  On top of this people with CF have 'acute exacerbations' where they have more severe infection.  The symptoms in lung disease are chronic cough, producing mucus, chest pain, shortness of breath and sometimes coughing up blood.  The damage over the years eventually causes so much damage that the lungs can no longer work properly and the person has 'respiratory failure'.  It is at this stage that transplant is considered.  

Digestive System:   The pancreas normally produces enzymes which digest food but in CF the channels are blocked with mucus and the enzymes can't get through, so food cannot be absorbed.  This results in malnutrition and weight loss.  In the bowel itself the thicker mucus can sometimes cause obstructions - called DIOS - this causes painful cramps and a swollen stomach.  Acid reflux also results from chronic coughing.

Liver:  Rarely people with CF have liver disease (around 8%)  thought to be due to blockages in the small liver ducts.  This can be severe and some people require a liver transplant.

Sinuses:  The sticky mucus breeds bacteria causing chronic infection and inflammation.  This results in pain and pressure over the sinuses.

Joints:   People with CF can suffer from CF arthritis.   It is not well understood but thought to be related to an over active immune response causing inflammation in the joints. 

Diabetes:  Over the years the pancreas becomes more damaged and has problems releasing enough insulin to control blood sugars.  A significant proportion of people with CF develop CF Related Diabetes, often in their 20s, and require insulin.

Osteoporosis:   Most people with CF have thin bones and it might be related to malabsorption issues in early life.  This makes them more prone to breaking bones - often ribs due to excessive coughing.

Male infertility:  Males with CF do not have the tube that carries sperm (the vas deferens) so are usually infertile.  They can however have children using certain IVF techniques.

Treatments

The CF treatment regime can be harsh and time consuming - and something that has to be carried out every day for life!  People are at varying levels on the treatment scale, although it is a progressive illness, so most people will gradually have more treatments added over the years.

A possible regime of medications for one day would include:

• Digestive Enzymes - taken with all meals/ snacks.  I take 25/day - some people take over 100/day.
• Prophylactic Antibiotics - oral tablets to prevent infection and control chronic infection
• Vitamins A, D, E and K - we don't absorb these properly so need supplements
• Anti-reflux (e.g omeprazole) - to prevent reflux and also help digestive enzymes to work
• Calcium and Bisphosphonates - these are to help bone strength
• Steroids - these can be used in acute situations but sometimes people need them long term
• Insulin
• Ursodeoxycholic acid - for those with liver disease - used in early stages to prevent progression
• Pain killers - most people with CF have a selection of pain killers - for sinus, chest or joint pain.
• Salt tablets - taken for vigorous exercise or in hot climates to prevent excess salt loss through sweating
• Nebulised Antibiotics  - taken twice daily to prevent/control infection
• Nebulised Hypertonic saline - makes the mucus less sticky  - up to 4 x day
• Nebulised Dnase  - breaks down the mucus to make it thinner, taken once a day.
• Nebulised ventolin/inhalers - a lot of people with CF have some asthmatic like symptoms and need nebulised bronchodilators and a variety of inhalers.
• Laxatives and drugs to break down mucus in bowel
• Oxygen is used in later stages of CF when the lungs cannot provide enough for the body's needs.  At this stage some people may require non-invasive ventilation, which is a special mask that helps them breath over night or during infections.

My medication cupboards with about 6 weeks of drugs - post transplant.  Remember that pre transplant you would need to add another at least another three nebulised drugs, four inhalers,  30 x 1 litres bottles of over night feeds, oxygen cylinders, boxes of IV antibiotics with all the accompanying needles/syringes etc.  It didn't fit in these wee cupboards before!

Intravenous Antibiotics - these are used for more acute and severe infections.  The drugs are given into a vein, usually 2-3 times/day.  Patients are often trained to administer these at home, either through a line in their arm or a indwelling device surgically implanted under the skin, which goes into a large blood vessel and can be accessed when IV medications are needed.   Some people only rarely need these drugs but most need a few courses a year, and as infections become more frequent it can be more than 6 times a year.  (Pre transplant I would only have about 2 weeks between courses of IV's)

Physio - this is probably the most time consuming treatment.  Carried out at least twice a day but often more, and as illness progresses, sessions become longer.   Most patients can use breathing techniques and a variety of aids  - these are usually devices you blow through to help open the airways and allow mucus to be cleared.  Sessions can be a quick 10 mins if chest is clear to well over an hour otherwise.  Pre transplant I could spend about 4 hours a day doing physio and my chest was never clear!  Exercise is also important and is part of the physio approach.

Nutritional - despite enzymes, people with CF are often underweight as they are burning up calories fighting infection but struggle to get the benefit of calories they take in.  They will often need high calorie drinks and are encouraged to follow a high protein, high fat diet.  In more severe cases they may need over night feeding, where extra calories are fed into the stomach overnight - through a nasogastric tube (passed down nose) or PEG tube (surgically inserted directly into stomach).

Post transplant - mostly need the same tablets as above but usually don't need physio and nutritional supplements.  Continue on nebulised antibiotics to prevent infection but don't need the mucus thinning drugs because the new lungs do not have CF sticky mucus.  Will be on long term steroids and usually two immunosuppressant drugs for life.   Often need drugs to lower blood pressure and cholesterol which rise due to medications used after transplant.

What is the outlook for people with CF?

Around 50% will not live beyond their late 30's  - however this also means that there are people living into their 40's and 50's ...and some older!  Life expectancy has improved dramatically over the years.  It was probably still in the teens when I was born and has increased steadily due to new treatments.  However too many people are still dying very young and there is a lot of research still needed.    Life expectancy after transplant is difficult to predict because current statistics are based on transplants 10 years ago - with around 50% surviving 10 years.  Transplants today may last longer and there are people still going strong who had transplants over 15 years ago.

The Future

Research is ongoing into new treatment, new antibiotics to treat emerging resistant infections and better overall care across the UK.   There has been a lot of work on gene therapy, looking at replacing the faulty gene but this is still not in a usable form.  They are able to replace the CF gene in mice and have done this in human lungs - but they need a safe way of getting this into the lungs longer term and a way of making it last.   Research continues and hopefully we will continue to progress with treatments over the coming years.

Any other questions - please leave me a comment!!

Run Kirsty Run!

Kirsty from Team Glasgow is running the 10K tomorrow (seriously!!) Money raised is for the CF Trust Holiday Fund - great wee charity. They help give people with CF a well needed break! I had a weekend trip down to London with their help and Kirsty had a trip shortly before her transplant - a holiday she thought would be her last. The fund is part of the CF Trust but something that benefits people with CF here and now - giving them a chance to enjoy life and create some memories to cherish.


SPONSOR KIRSTY HERE

Lovely Easter Holidays - now back to reality!

Both myself and Andrew have been on annual leave since Easter and we both just returned to work today.  I had PBL at the uni and then back to other work tomorrow.  We took the time off because we wanted to get some things done around the garden and I also felt if I didn't take a holiday soon I would collapse in a heap!!

We spent Easter weekend at mum and dads, and Corey was also up visiting.  We had a nice weekend and a lovely Easter dinner.  It was then my transplant anniversary and dads birthday on the Monday, so we had another wee celebration :-)

So we have spent our time since then:

Mostly trying to get the garden back into some sort of order after all the building work last year.  Andrew was cleaning out the greenhouse, cutting grass, digging, weeding and sowing the vegetable beds.  Meanwhile I planted the herb pots and lots of trays of seeds - some of them I have inside as it is still quite cold over night, and I do have some shoots already.  Hopefully I will manage to grow something!

Andrew spent three days painting the rough cast on the extension - it was a nightmare because it was so deep you had to kind of jab the brush into it - no way could you use a roller.  I helped for about 30 mins and then gave up :-)  He is on the roof of extension here because he was painting the down pipes - Anne don't worry, it's really not that high up :-)

 I was supervising the painting here...

Seb got lots of walks at the park!

Andrew liked sitting outside and making small fires in the chimenea.   Seb was there for moral support.

Meanwhile Seb was busy sitting on chairs and taking empty ice cream pots out to play with.  It's a hard life for a small dog.

We mostly stayed at home and relaxed, instead of trying to run about all over the place.  It was nice to enjoy the great weather we have had this week and I have spent plenty time sitting in the sun drinking coffee and reading books.

I also met up with Victoria and Kirsty to start making preliminary plans for our big fundraiser this year,which will be a Halloween party with the theme 'Dead Famous'.   This year the charity to benefit will be The Butterfly Trust.  There are quite a few charities who have helped us in the past and we are trying to share any funds around!  We have managed to book a huge room at QM union, at Glasgow university.  I am surprised we managed this because it is around Freshers week so they are not usually keen to hire out rooms around that time but we obviously won them over :-)  We are going down the line of a party idea for us young things (I count my age of 32 as young of course!) this time - offering a student discount as well.   We thought it would be fun to do something different to the ball and less formal (although we are planning a 2nd ball next year - give people some time to save!)  The Halloween night will be £10 a ticket, which should compete with other Halloween nights at local pubs and clubs.  It's going to be on the sat 29th of October and we are just putting out the feelers for people who might be able to help with entertainment (preferably for free!).  We are thinking along the lines of magicians, face painters, tarot card readers......so if you know anyone who might be willing to donate a couple of hours to a good cause, then let me know.  Like wise if anyone has good ideas for other money spinners on the night - Halloween games etc then give me a shout! 

Finally I am going to leave you with a very random video!   If you remember the Littlest Hobo, this will make sense.   For those who don't - this was a TV series in the 80's which featured a dog, who was always on the road, going from town to town and never settling down. The music accompanying my video is the theme tune to the Littlest Hobo.