here we are at Center Parks, Sherwood Forest with our granddaughter Izabella. We arrived yesterday and after walking into our villa we were pleasantly surprised. We had booked an executive one as this included daily maid service. The villa was in a choice spot, for which we had paid another £30 on top of the cost of an exec villa. The setting was perfect. Geese and ducks plus squirrels were coming up to our patio door and looking in and the lake was only yards away, perfect, or so we thought.
We unloaded everything and put away kitchen things and I loved the wine cooler, no, i don't drink wine but for the copious amount of bottled water we get through when away from our home in West Yorkshire it was so lovely to keep it all chilled. Light, modern and airy the feel of the whole villa was very pleasing and the situation it was in could not be bettered.
On going into Izzys room she was really pleased to see she had her very own bathroom and was very excited, helping me to put her things away in the correct places. Then I noticed it, the first of many wasps, one after the other and the other, talk about one wasp two wasp three wasp four, five wasp six wasp seven wasp more! It was impossible to get rid of them all. We rang the office thinking they would give us a spray but they needed the conservationist team to come and look the next morning. We decided that there was just no way could Izzy sleep in there so Colin slept in there whilst Izzy and I had the other room.
After falling asleep I was woken by three thumps, one after the other. Not sure what it was I decided it was just a strange place but no, the thumps became more regular and repeated all night. I went into the other bedroom to see Colin with a sting on his arm and a rolled up magazine waving it wildly around killing wasps, so many I couldn't believe what I was seeing! Morning arrived and there were wasps, dozy ones, walking round the kitchen floor so we all had to put our shoes on. Colin felt there had to be a wasps nest and it seemed he was right,
After breakfast was over there appeared on our doorstep two lovely guys who came for a look around and confirmed that yes there was a wasps nest but they wanted to keep it, just block up the ways they were using to get into our villa. The chemicals were not friendly to humans, let alone one with lung problems so we had to move out, problem though in that they only had two more properties available. I was taken to see both. Number one, no go, one bathroom way too far away for me in the middle of the night when my legs just won't work and the second bedroom had no bathroom and was too far from our bedroom. The second villa had three bedrooms, we only need two, dirty kitchen and a sauna. PH patients do not do saunas. We had no choice though but to accept this one though in a very inferior part of the park. I was told they would ring and we would discuss a bit of a refund.
The original refund was a joke. We had paid an extra £30 for the situation our preferred villa was in and a further £120 for the executive one , hence £150 . The villa we were offered cost much less than the villa we had chosen yet they offered us £100 as a gesture of goodwill. I told them this was a
terrible gesture as they were, in actual fact, making money off us cos we had to move! Anyway after
a bit of argy-bargy we decided on a better settlement and I refused to take it in coupons for food etc. now we can start to, hopefully, enjoy our holiday after a day spent re- packing, moving, and unpacking again.
Wednesday. Our day began well. We were going on a nature walk as we are always trying to teach Izzy about nature and to respect it. We sensibly chose to take my mobility scooter as the park is large and I wanted to enjoy my day. We set off doing really well but the terrain in places was rather hard for my scooter and it began to run out of power after all it's valiant struggles. There was no way we wanted it to run out of battery on one of the trails so Colin started to push it to help up the hills and stop it struggling. The battery light was flashing dangerously red and so we decided to get Izzy to sit on the scooter and for me to walk at the side helping to steer it whilst Colin continued to push until we got to the top of the hills and the battery could cope better. We made it! Thank goodness but the look on the people's faces as they saw me walking at the side of the said scooter when they had previously seen me riding on it! I didn't bother to explain, after all as we with Ph know we look too well to be poorly don't we so no sense in explaining that there was nothing wrong with my legs, hence that is why they now saw me walking after seeing my riding!
The nature walk was a huge success and my trusty scooter limped home to be quickly put on charge ready for its next adventure. I walked into the village as it's not very far and we had some light lunch before heading back to the villa for Izzy to prepare for her horse riding session. It became obvious that there was no way I could go, the battery had not recharged sufficiently for my scooter and there was just no way I could make my way to the horse, time for a nice sleep instead for me and I certainly needed it as I slept till they both returned after a lovely pony experience. Then time for them to collect their swimming things and away again!
Just before they left Izzy stood by the patio door and a huge swan saw her and rushed over to bite her, not realising of course that she was behind glass! The swan was huge, almost coming to the top of Izzys head so thank goodness she was behind glass and thank goodness we always keep the patio doors closed, would be a bit scary to come across one of these standing by the settees! What an amazing time we have had up to now at Center Parks, will we return, yes we will. When the cure is found for ph I shall be doing so many of the brilliant activities they have going on here, I won't need a scooter and shall be rushing from one to the other as there are so many I want to do but know I just can't manage. PH you won't beat me, I know the cure will be coming fast now and I just can't wait for the trials to begin, I shall be at the front of the queue.
Saturday, 29 August 2015
Sunday, 23 August 2015
Sweet n Sour
Yesterday was a sweetly sour day for me. As I said in an earlier blog we were scattering my moms ashes at my brothers house. Though I know my mom is not here anymore it was still so sad to see this lovely mom of ours now in a pile of ashes. I hated it. To make it worse neither Colin nor I had asked our children to come as we thought it was just for brothers and sisters and husbands and wives. In actual fact so many people were there it was lovely but I missed my own being with me at such a time. Nobody had bothered to ring me and tell me so I was a bit hurt at this. My family seems to have become a bit disjointed since moms death and it is so sad.
On the sweet side it was so lovely to see my nephews and nieces and some of their children. We have rather a large family and rarely seem to all catch up so it was super. One of my nieces sons I had not even seen since he was 13! Very bad of me of course but we did live in Spain for five years and when we came home it was with this ph that certainly curtails some aspects of our lives. It was a shock to see this handsome young man who was now driving! He is a really gorgeous guy and I am proud he is my nephew, though once removed! His two beautiful sisters were with him and we talked about the usual, school, athletics and dancing. Such lovely girls and I do see them quite often but never to have a talk to such as this, lovely.
There was much champagne flowing though neither myself nor Colin had any. Colin was driving as it was a truly shocking ph day for me, in truth a ph day but I got out of bed and went on my rather wobbly legs. Colin never drinks and drives and I just don't drink, full stop but it seemed everyone had a full glass and they were often replenished so I am sure the day went well for them. For is though it was enough when moms ashes were scattered and we came home, me to my bed to wake to a new and better day.
I am not sure how my other ph friends are when they have bad days but for me I just can't eat. I managed three crackers and a banan all day. The thought of making the effort to eat is just too much and Colin knows now not to worry, it will pass. It's not like I don't have enough fat to keep me going!
Lovely surprise, my daughter has rung me to say she has read my message about having a messy Facebook account and she is coming round with my darling Izzy and her lovely boyfriend Chris to sort me out, what would we do without the young ones who seem to be born with this type of knowledge.
It's a beautiful day outside after the bad rain we had last night. I was hoping the rain would turn into a storm. I love them, I was laying in bed with the curtains wide open and a window open too listening to it rattling all around but alas, apart from a few thunder claps how and again way in the distance no storm for us here!
All for now, I do hope when you read my blogs you will like and share them. Have a good day xx
On the sweet side it was so lovely to see my nephews and nieces and some of their children. We have rather a large family and rarely seem to all catch up so it was super. One of my nieces sons I had not even seen since he was 13! Very bad of me of course but we did live in Spain for five years and when we came home it was with this ph that certainly curtails some aspects of our lives. It was a shock to see this handsome young man who was now driving! He is a really gorgeous guy and I am proud he is my nephew, though once removed! His two beautiful sisters were with him and we talked about the usual, school, athletics and dancing. Such lovely girls and I do see them quite often but never to have a talk to such as this, lovely.
There was much champagne flowing though neither myself nor Colin had any. Colin was driving as it was a truly shocking ph day for me, in truth a ph day but I got out of bed and went on my rather wobbly legs. Colin never drinks and drives and I just don't drink, full stop but it seemed everyone had a full glass and they were often replenished so I am sure the day went well for them. For is though it was enough when moms ashes were scattered and we came home, me to my bed to wake to a new and better day.
I am not sure how my other ph friends are when they have bad days but for me I just can't eat. I managed three crackers and a banan all day. The thought of making the effort to eat is just too much and Colin knows now not to worry, it will pass. It's not like I don't have enough fat to keep me going!
Lovely surprise, my daughter has rung me to say she has read my message about having a messy Facebook account and she is coming round with my darling Izzy and her lovely boyfriend Chris to sort me out, what would we do without the young ones who seem to be born with this type of knowledge.
It's a beautiful day outside after the bad rain we had last night. I was hoping the rain would turn into a storm. I love them, I was laying in bed with the curtains wide open and a window open too listening to it rattling all around but alas, apart from a few thunder claps how and again way in the distance no storm for us here!
All for now, I do hope when you read my blogs you will like and share them. Have a good day xx
Saturday, 22 August 2015
Family fire night
It is turning out to be a long night. We decided to celebrate the end of Izzys nursery school days with a fire night in the cabin. This works so well for us as Izzy gets to play in the garden with grandad whilst I get to rest on one of the sofas in the cabin.
We collected Izzy from nursery and there were lots of tears ...... mainly from me! I have loved this nursery and they have taught Izzy much over the four years she attended. It was sad to know this was her last day before a short holiday and big school. Quite where these years went I don't really know. What I do know is I am so grateful that I have been around to see this little baby grow into the almost five year old she is today.
Danielle, my daughter, was still at work when we collected Izzy from school and took her back to the cabin. Fire lit and tea cooking it was playtime, a wheelbarrow came in handy for this and she enjoyed being pushed around the garden by her grandad very much, not sure if Colin's new hip enjoyed it quite as much. There was also wood to be added to the fire and the garlic bread to keep on being turned as the fire was a fierce one and we didn't want this burnt as Izzy loves her garlic bread.
My daughter arrived to join us from work, sadly my son lives in Leeds and was working later in the evening as he is a D.J.at the Distrikt Bar so was unable to attend. Izzy continued to play outside with grandad whilst my daughter and I had a lovely catch up. This was long overdue as my daughter is a very busy working mom and our conversations are generally very quick sentences when she comes to collect Izzy to take her home. It's the general kind such as "here are her paintings she did at school, and can we have her swimming things tomorrow please?" However we got to spend around two hours catching up on all her news and letting her know all that had been, or was about to happen with us.
Tea in the cabin is always a very informal affair., thought there is a table and chairs big enough for six people we think there is nothing nicer than sitting with our plates balanced on our laps watching the flames from the fire outside the cabin door as the day draws to its close. Then it is time for the numerous candles to be lit in the cabin whilst we all continue discussing what is next on our agendas. The next for us is our small holiday, due to begin on Monday with Izzy. Five days at Center Parks in Sherwood Forrest. Then the biggie, BIG SCHOOL.
By this time it's home time and showers for everyone as with the best will in the world the smoke does tend to make us all very smelly! My legs are never very good at night and were very wobbly. I don't know how ph affects other people's legs but mine get very very heavy and what with that and my knees wobbly it leads to a very odd gait when trying to walk.
So ends another day in the Ayrton household. Evenings are never good for me so after a quick shower it was time for a rest on the bed. I did fall asleep for a short while but woke at around 10.00 and now the time is 3.48 and I certainly don't feel sleepy,
Today will be a sad day as we scatter my moms ashes in the garden where my brother is buried. My brother died young but expressed a wish to be buried in his own garden, it's hardly a corner plot though as there is a lot of land. His gravestone is set flat, very simple with just his name and date of death on it as he wished. My fathers ashes are scattered here and my mom will now join him. Should the house be sold at a later date this part of the garden will be fenced off and always belong to the family so there won't be issues with this. Maybe it is the thought of how sad this time will be that
is keeping me awake, though in truth I do sleep badly.
Right, dawn chorus outside so must try to get a couple of hours sleep., have a lovely day everyone
We collected Izzy from nursery and there were lots of tears ...... mainly from me! I have loved this nursery and they have taught Izzy much over the four years she attended. It was sad to know this was her last day before a short holiday and big school. Quite where these years went I don't really know. What I do know is I am so grateful that I have been around to see this little baby grow into the almost five year old she is today.
Danielle, my daughter, was still at work when we collected Izzy from school and took her back to the cabin. Fire lit and tea cooking it was playtime, a wheelbarrow came in handy for this and she enjoyed being pushed around the garden by her grandad very much, not sure if Colin's new hip enjoyed it quite as much. There was also wood to be added to the fire and the garlic bread to keep on being turned as the fire was a fierce one and we didn't want this burnt as Izzy loves her garlic bread.
My daughter arrived to join us from work, sadly my son lives in Leeds and was working later in the evening as he is a D.J.at the Distrikt Bar so was unable to attend. Izzy continued to play outside with grandad whilst my daughter and I had a lovely catch up. This was long overdue as my daughter is a very busy working mom and our conversations are generally very quick sentences when she comes to collect Izzy to take her home. It's the general kind such as "here are her paintings she did at school, and can we have her swimming things tomorrow please?" However we got to spend around two hours catching up on all her news and letting her know all that had been, or was about to happen with us.
Tea in the cabin is always a very informal affair., thought there is a table and chairs big enough for six people we think there is nothing nicer than sitting with our plates balanced on our laps watching the flames from the fire outside the cabin door as the day draws to its close. Then it is time for the numerous candles to be lit in the cabin whilst we all continue discussing what is next on our agendas. The next for us is our small holiday, due to begin on Monday with Izzy. Five days at Center Parks in Sherwood Forrest. Then the biggie, BIG SCHOOL.
By this time it's home time and showers for everyone as with the best will in the world the smoke does tend to make us all very smelly! My legs are never very good at night and were very wobbly. I don't know how ph affects other people's legs but mine get very very heavy and what with that and my knees wobbly it leads to a very odd gait when trying to walk.
So ends another day in the Ayrton household. Evenings are never good for me so after a quick shower it was time for a rest on the bed. I did fall asleep for a short while but woke at around 10.00 and now the time is 3.48 and I certainly don't feel sleepy,
Today will be a sad day as we scatter my moms ashes in the garden where my brother is buried. My brother died young but expressed a wish to be buried in his own garden, it's hardly a corner plot though as there is a lot of land. His gravestone is set flat, very simple with just his name and date of death on it as he wished. My fathers ashes are scattered here and my mom will now join him. Should the house be sold at a later date this part of the garden will be fenced off and always belong to the family so there won't be issues with this. Maybe it is the thought of how sad this time will be that
is keeping me awake, though in truth I do sleep badly.
Right, dawn chorus outside so must try to get a couple of hours sleep., have a lovely day everyone
Friday, 21 August 2015
The Beginning
20th August 2015
I decided to write a blog so that anyone interested in what is happening in the Ayrton household since being diagnosed with idiopathic pulmonary arterial hypertension could see what we were up to! Who would have thought I would still be around to be writing this when I was diagnosed almost five years ago.
Life was good before diagnosis. We were living the dream in Javea, Spain, a wonderful place where we had the most fantastic friends. We loved the Spanish way of life and had both joined a walking group. Unfortunately my walking was very quickly curtailed as my health deteriorated but I still enjoyed the life and long lazy lunches with friends around our pool. All our family and friends came out to stay with us and we had some amazing times with them all. We made many new friends in Spain too, wonderful friends. Fortunately we are still in touch with them all and see them as often as we can and keep in touch by e mail.
The life we knew was brought to a crashing halt when, after two years of not feeling "right" and a series of visits to the doctors as I was not picking up after a chest infection. we were told I had pneumonia. I was given antibiotics and told it was fine to fly to America for three weeks where we had a very busy holiday booked. Little did we know then but the journey itself could have killed me!
In truth the holiday was not a success as I was too poorly to enjoy the holiday, could do very little and was constantly feeling I was about to faint or be sick. The only place I felt fine was in whichever bedroom we were staying in whichever hotel.
Back to Javea and another visit to the doctor who this time after seeing how poorly I was sent me immediately to see a specialist. After a series of tests my doctor told me he felt he knew what was wrong but Spain gives diagnosis quite differently to the UK. Very bluntly as I was being prepared for a right heart catheter ( a procedure where a tube is passed down into your lungs to see the pressure) I was told he could not promise that I would live six weeks. This was devastating as I was about to become a grandmother and did not know whether I was to be be grandmother to a boy or a girl. The doctor, who I have since come to respect so much for his speedy diagnosis told my husband to get me back to the UK immediately as there was nothing he could do.We were fortunate as we still had a home in England as well as Spain and as we were still living in the UK as much as in Spain we were still residents of the UK. We had paid private insurance in Spain so again something we were very thankful for.
Our journey back to the UK was very frightening and when I look back I wonder just how we made it. At that time we had friends staying with us from the UK. We trusted them implicitly so we threw them the keys to one of our cars and all the house keys and left them to shut up the house and the apartment at the end of their holiday on their return to the UK. We quickly took what we felt was needed and was soon on our way back to England.
We decided not to risk flying as we knew the pressure on my lungs could be so great as to kill me. My husband had been busy on the computer and had sent an e mail to Royal Hallamshire and their specialist David Kiely who said we must get back immediately and get to that hospital via our own Doctor or our local hospital. Time was of the essence so the day after the final diagnosis our journey began.
We set off on a beautiful morning at the beginning of August 2010. Colin had booked the ferry from Santander to Portsmouth and we had to stay overnight in a small Spanish town. The drive was horrendous as by this time I was experiencing so much pain in my heart. I called it the squeeze as every two or three minutes my heart felt like it was a sausage and someone was squeezing it to get all the meat out of the skin! After we arrived in this town we parked and needed to get to our hotel.
I could not walk more than three or four steps without stopping and resting, we were in despair. The night was scary. We settled down to sleep and about an hour after while Colin was asleep I had the strangest feeling, one I cannot describe but I felt I was dying. I was not scared strangely enough but knew I wanted Colin to be holding my hand as I died. I woke him up and said "hold my hand" he said "why" and I told him I felt I was dying. He must have been terrified but he cuddled me and we both fell to sleep.
After a very restless night we began our journey to the ferry at Santander and the journey across the water home. We had booked a four berth cabin and Colin made me a bed using all the duvets as my body hurt so much, by this time even the journey to the bathroom was very difficult and my breathing was very laboured. I was thrilled in the morning to see the coastline of the UK as I needed my family round me for strength.
Time to get out of bed and we were both shocked as I could not shower myself. Colin came into the shower with me and washed me and then half carried me to the bed where he had placed my clothes for me to dress. As he was finishing his shower he heard me cry and came to ask what the matter was, I said I couldn't dress myself his reply was "well I can dress you" and so he did. On leaving the ferry I wanted to go straight to the nearest hospital but Colin said no. Unbeknown to me he wanted to get me back to my home town as he feared I did not even have the six weeks predicted to live and he too wanted me to see my family..
I didn't see my home for five weeks. I was admitted to my local hospital immediately we reached my home town. An ECG was immediately given and the doctor told me there was no way I could go home, even for a day with my heart in such a condition. The problem was my local hospital had never heard of idiopathic pulmonary hypertension so could not give me any medicine, it took three days to get funding in place and I was then on my way to my wonderful A Team at the royal Hallamshire a hospital in Sheffield. A new life was about to begin.........
20th August 2015
I decided to write a blog so that anyone interested in what is happening in the Ayrton household since being diagnosed with idiopathic pulmonary arterial hypertension could see what we were up to!
Who would have thought I would still be around to be writing this when I was diagnosed almost five years ago.
Life was good before diagnosis. We were living the dream in Javea, Spain, a wonderful place where we had the most fantastic friends. We loved the Spanish way of life and had both joined a walking group. Unfortunately my walking was very quickly curtailed as my health deteriorated but I still enjoyed the life and long lazy lunches with friends around our pool. All our family and friends came out to stay with us and we had some amazing times with them all. We made many new friends in Spain too, wonderful friends? Fortunately we are still in touch with them all and see them as often as we can and keep in touch by e mail.
The life we knew was brought to a crashing halt when, after two years of not feeling "right" and a series of visits to the doctors as I was not picking up after a chest infection. we were told I had pneumonia. I was given antibiotics and told it was fine to fly to America for three weeks where we had a very busy holiday booked. Little did we know then but the journey itself could have killed me!
In truth the holiday was not a success as I was too poorly to enjoy the holiday, could do very little and was constantly feeling I was about to faint or be sick. The only place I felt fine was in whichever bedroom we were staying in whichever hotel.
Back to Javea and another visit to the doctor who, this time after seeing how poorly I was sent me
immediately to see a specialist. After a series of tests my doctor told me he felt he knew what was wrong but Spain gives diagnosis quite differently to the UK. Very bluntly as I was being prepared for a right heart catheter ( a procedure where a tube is passed down into your heart and lungs to see the pressure) I was told he could not promise that I would live six weeks. This was devastating as I was about to become a grandmother and did not know whether I was to be be grandmother to a boy or a girl. The doctor, who I have since come to respect so much for his speedy diagnosis told my husband to get me back to the UK immediately as there was nothing he could do.
We were fortunate as we still had a home in England as well as Spain and as we were still living in the UK as much as in Spain we were still residents of the UK. We had paid private insurance in Spain so again something we were very thankful for.
Our journey back to the UK was very frightening and when I look back I wonder,just how we made it. At that time we had friends staying with us from the UK. We trusted them implicitly so we threw
them the keys to one of our cars and all the house keys and left them to shut up the house on their
return to the UK. We decided not to risk flying as we knew the pressure on my lungs could be so
great as to kill me. My husband had been busy on the computer and had sent an e mail to Royal Hallamshire and their specialist David Kiely who said we must get back immediately and get to that hospital via our own Doctor or our local hospital. Time was of the essence so the day after diagnosis our journey began.
We set of on a beautiful morning at the beginning of August 2010. Colin had booked the ferry from Santander to Portsmouth and we had to stay overnight in a small Spanish town. The drive was horrendous as by this time I was experiencing so much pain in my heart. I called it the squeeze as every two or three minutes my heart felt like it was a sausage and someone was squeezing it to get all the meat out of the skin! After we arrived in this town we parked and needed to get to our hotel. I could not walk more than three or four steps without stopping and resting, we were in despair.
The night was scary. We settled down to sleep and about an hour after while Colin was asleep I had
the strangest feeling, one I cannot describe but I felt I was dying. I was not scared strangely enough
but knew I wanted Colin to be holding my hand as I died. I woke him up and said "hold my hand"
he said "why" and I told him I felt I was dying. He must have been terrified but he cuddled me and we both fell to sleep.
After a very restless night we began our journey to the ferry at Santander and the journey across the water home. We had booked a four berth cabin and Colin made me a bed using all the duvets as my body hurt so much, by this time even the journey to the bathroom was very difficult and my breathing was very laboured. I was thrilled in the morning to see the coastline of the UK as I needed my family round me for strength.
Time to get out of bed and we were both shocked as I could not shower myself. Colin came into the shower with me and washed me and then half carried me to the bed where he had placed my clothes
for me to dress. As he was finishing his shower he heard me cry and came to ask what the matter
was, I said I couldn't dress myself. His reply was "well I can dress you" and so he did.
On leaving the ferry I wanted to go straight to the nearest hospital but Colin said no. Unbeknown to me he wanted to get me back to my home town as he feared I did not have long to live and he too wanted me to see my family..
I didn't see my home for five weeks. I was admitted to my local hospital immediately we reached my home town. An ECG was immediately given and the doctor told me there was no way I could go home, even for a day with my heart in such a condition. The problem was my local hospital had never heard of idiopathic pulmonary hypertension so could not give me any medicine, it took three days to get funding in place and I was then on my way to my wonderful A Team at the royal Hallamshire a hospital in Sheffield. A new life was about to begin.............
I decided to write a blog so that anyone interested in what is happening in the Ayrton household since being diagnosed with idiopathic pulmonary arterial hypertension could see what we were up to!
Who would have thought I would still be around to be writing this when I was diagnosed almost five years ago.
Life was good before diagnosis. We were living the dream in Javea, Spain, a wonderful place where we had the most fantastic friends. We loved the Spanish way of life and had both joined a walking group. Unfortunately my walking was very quickly curtailed as my health deteriorated but I still enjoyed the life and long lazy lunches with friends around our pool. All our family and friends came out to stay with us and we had some amazing times with them all. We made many new friends in Spain too, wonderful friends? Fortunately we are still in touch with them all and see them as often as we can and keep in touch by e mail.
The life we knew was brought to a crashing halt when, after two years of not feeling "right" and a series of visits to the doctors as I was not picking up after a chest infection. we were told I had pneumonia. I was given antibiotics and told it was fine to fly to America for three weeks where we had a very busy holiday booked. Little did we know then but the journey itself could have killed me!
In truth the holiday was not a success as I was too poorly to enjoy the holiday, could do very little and was constantly feeling I was about to faint or be sick. The only place I felt fine was in whichever bedroom we were staying in whichever hotel.
Back to Javea and another visit to the doctor who, this time after seeing how poorly I was sent me
immediately to see a specialist. After a series of tests my doctor told me he felt he knew what was wrong but Spain gives diagnosis quite differently to the UK. Very bluntly as I was being prepared for a right heart catheter ( a procedure where a tube is passed down into your heart and lungs to see the pressure) I was told he could not promise that I would live six weeks. This was devastating as I was about to become a grandmother and did not know whether I was to be be grandmother to a boy or a girl. The doctor, who I have since come to respect so much for his speedy diagnosis told my husband to get me back to the UK immediately as there was nothing he could do.
We were fortunate as we still had a home in England as well as Spain and as we were still living in the UK as much as in Spain we were still residents of the UK. We had paid private insurance in Spain so again something we were very thankful for.
Our journey back to the UK was very frightening and when I look back I wonder,just how we made it. At that time we had friends staying with us from the UK. We trusted them implicitly so we threw
them the keys to one of our cars and all the house keys and left them to shut up the house on their
return to the UK. We decided not to risk flying as we knew the pressure on my lungs could be so
great as to kill me. My husband had been busy on the computer and had sent an e mail to Royal Hallamshire and their specialist David Kiely who said we must get back immediately and get to that hospital via our own Doctor or our local hospital. Time was of the essence so the day after diagnosis our journey began.
We set of on a beautiful morning at the beginning of August 2010. Colin had booked the ferry from Santander to Portsmouth and we had to stay overnight in a small Spanish town. The drive was horrendous as by this time I was experiencing so much pain in my heart. I called it the squeeze as every two or three minutes my heart felt like it was a sausage and someone was squeezing it to get all the meat out of the skin! After we arrived in this town we parked and needed to get to our hotel. I could not walk more than three or four steps without stopping and resting, we were in despair.
The night was scary. We settled down to sleep and about an hour after while Colin was asleep I had
the strangest feeling, one I cannot describe but I felt I was dying. I was not scared strangely enough
but knew I wanted Colin to be holding my hand as I died. I woke him up and said "hold my hand"
he said "why" and I told him I felt I was dying. He must have been terrified but he cuddled me and we both fell to sleep.
After a very restless night we began our journey to the ferry at Santander and the journey across the water home. We had booked a four berth cabin and Colin made me a bed using all the duvets as my body hurt so much, by this time even the journey to the bathroom was very difficult and my breathing was very laboured. I was thrilled in the morning to see the coastline of the UK as I needed my family round me for strength.
Time to get out of bed and we were both shocked as I could not shower myself. Colin came into the shower with me and washed me and then half carried me to the bed where he had placed my clothes
for me to dress. As he was finishing his shower he heard me cry and came to ask what the matter
was, I said I couldn't dress myself. His reply was "well I can dress you" and so he did.
On leaving the ferry I wanted to go straight to the nearest hospital but Colin said no. Unbeknown to me he wanted to get me back to my home town as he feared I did not have long to live and he too wanted me to see my family..
I didn't see my home for five weeks. I was admitted to my local hospital immediately we reached my home town. An ECG was immediately given and the doctor told me there was no way I could go home, even for a day with my heart in such a condition. The problem was my local hospital had never heard of idiopathic pulmonary hypertension so could not give me any medicine, it took three days to get funding in place and I was then on my way to my wonderful A Team at the royal Hallamshire a hospital in Sheffield. A new life was about to begin.............
This stress sure does not help people with PH!
21st August It's a rocky road and I don't mean desert!
At last we seem to have a blog! Colin worked so hard last night on the one previously started but in the end he began it all again. Despite help from both Kath and Karen we just didn't seem to getting anywhere.
Such was my frustration that when our elderly friend Roy called for his usual daily mug of oxo for once I just couldn't talk to him, I was trying and retrying the things we had been told to do and getting frustrated and very stressed. As any ph patient will tell you stress is a no no for us but I had it in spades! My poor heart was thumping like mad and my legs, always a problem at certain times of the day did their usual and just wanted to pack in. Pack it in was what I said to Colin many times as the evening wore on, I was in bed and he valiantly threw himself into sorting it out. The sounds coming from the bedroom and the study were as such. Me " oh just leave it, I am never going to do a blog, who would want to read it anyway". Colin " I can sort it and of course you want to do a blog, you have been trying for years". Me. " well it is just too stressful and I can't cope with this all the time. Colin " Well it's not you coping, just let me get everything in place, by the way what is your password for Facebook! Me, PASSWORD, you know I never remember them, just leave it, password for this password for that, I hate computers". And so went the the conversations in our home ALL evening.
The new blog he was setting up said it would take 20 minutes, also the video he watched said 20 minutes but the hours rocked by without it being completed. I just snuggled deeper into my pillows and Colin valiantly continued working on the computer until the eureka moment when YES, we had a blog and it was published! Will anyone want to read it, will anyone put on their blogs links to mine, I don't know and in truth I dont know where I can put links to theirs so a heads up on this would be very much appreciated. We still haven't quite got our heads round how to get my profile picture where it should be and how small it should be, mine comes out huge and not the thumb nail one we are trying to get so we have left that for the time being.
Now don't be worrying when you read this one day after the first blog that I will bombard you with them. I shan't but I just needed Colin to show me how to go on with it when he is not around the place.
Now my new journey can begin. It's been a rocky road, a very rocky road to get here and thanks to my doctors , the new meds they keep bringing out and to Colin for being my rock we have made it. The road has been twisting and turning as I have made my way to where I am now at on my ph
journey but I can now, in the future have a blog! I won't be talking about ph constantly, though at times I will need to give it a heads up. The blog is just everyday life and living with a chronic disease, family life, thoughts about the happenings in the world and oh, just anything and everything that flits in and out of this head.
I hope that over time people will be happy to see a new blog and happy to comment. For now I am happy that at last, I can join the bloggers. Have a lovely day everyone. XXXX
At last we seem to have a blog! Colin worked so hard last night on the one previously started but in the end he began it all again. Despite help from both Kath and Karen we just didn't seem to getting anywhere.
Such was my frustration that when our elderly friend Roy called for his usual daily mug of oxo for once I just couldn't talk to him, I was trying and retrying the things we had been told to do and getting frustrated and very stressed. As any ph patient will tell you stress is a no no for us but I had it in spades! My poor heart was thumping like mad and my legs, always a problem at certain times of the day did their usual and just wanted to pack in. Pack it in was what I said to Colin many times as the evening wore on, I was in bed and he valiantly threw himself into sorting it out. The sounds coming from the bedroom and the study were as such. Me " oh just leave it, I am never going to do a blog, who would want to read it anyway". Colin " I can sort it and of course you want to do a blog, you have been trying for years". Me. " well it is just too stressful and I can't cope with this all the time. Colin " Well it's not you coping, just let me get everything in place, by the way what is your password for Facebook! Me, PASSWORD, you know I never remember them, just leave it, password for this password for that, I hate computers". And so went the the conversations in our home ALL evening.
The new blog he was setting up said it would take 20 minutes, also the video he watched said 20 minutes but the hours rocked by without it being completed. I just snuggled deeper into my pillows and Colin valiantly continued working on the computer until the eureka moment when YES, we had a blog and it was published! Will anyone want to read it, will anyone put on their blogs links to mine, I don't know and in truth I dont know where I can put links to theirs so a heads up on this would be very much appreciated. We still haven't quite got our heads round how to get my profile picture where it should be and how small it should be, mine comes out huge and not the thumb nail one we are trying to get so we have left that for the time being.
Now don't be worrying when you read this one day after the first blog that I will bombard you with them. I shan't but I just needed Colin to show me how to go on with it when he is not around the place.
Now my new journey can begin. It's been a rocky road, a very rocky road to get here and thanks to my doctors , the new meds they keep bringing out and to Colin for being my rock we have made it. The road has been twisting and turning as I have made my way to where I am now at on my ph
journey but I can now, in the future have a blog! I won't be talking about ph constantly, though at times I will need to give it a heads up. The blog is just everyday life and living with a chronic disease, family life, thoughts about the happenings in the world and oh, just anything and everything that flits in and out of this head.
I hope that over time people will be happy to see a new blog and happy to comment. For now I am happy that at last, I can join the bloggers. Have a lovely day everyone. XXXX
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