"I've got a brand new mobility scooter, and I will give you the key"

Hello folks, just a quick and easy blog today.
So, i've come to the realisation that I need help to get around places e.g. Going to the zoo, walking the dog. This has been on my mind for a while now and I didn't want to have to give in to the idea of getting a mobility scooter, but I have done!!!
On Friday 4th August I purchased a brand new scooter from a company called Monarch mobility. They came out to my house a few weeks a go with a scooter and let me have a play around on it. In the end my mind was made up that I would get one, but the only problem I had was lifting the scooter up to put it in the boot of my car. It was far to heavy for me to lift, I very nearly blacked out when I tried to lift it. And I also cannot rely on my Mum and Dad to put it in the car for me. Mark (salesman from Monarch) said why not think about getting a hoist fitted in my car. And as my car is a motability car I rang them and enquired about getting a hoist fitted and if they could help with the financial side e.g. Getting the hoist fitted and paying for it. Motability where very good and sent me a grants application form, all I had to do was fill it in and send it back with the reasons for having a hoist fitted in my car. It took a few days to hear from them but in the end my grant was awarded and I can have the hoist fitted this week.
The scooter I have got is called a Smarti scooter, and it folds up easy with a remote control. It is one of the lightest scooters i've used so far. You don't have to take it to bits when you want to put it in the car. The battery is really light as it's lithium and just slots in where my feet sit on the scooter.
You can also unfold/fold the scooter manually if the remote stops working, it's very easy and straightforward.
I am now looking forward to getting around places a lot easier, especially for when I go on my holiday to Cornwall next week.
As always thanks for taking the time to read my blog

 

Holidays-accessible for all!!!

 Hiya folks!!!
Back in the Easter holidays I visited Cornwall for a week with my mum.
Now, I love do love Cornwall but some of the places we like to visit can be easy to access and others not to easy.
Well my idea was to hire a mobility scooter for the week to help me get around the beautiful places we like to visit.
I hired the scooter from a shop called "Independent Living" based in Newquay, just half an hour away from the holiday park where we stay. It was £50 for the week, they had to take my driving licence as part of the deposit as I paid by debit card, if I had paid cash it would have been easier.
When we phoned up to book the scooter we specifically asked for a light-weight scooter, this wasn't a light weight scooter!!! It came apart in 4 bits and was very heavy to lift in and out of my car!!! My poor mum even said it was heavy and struggled with it, she trapped her finger in it to!!!


   
              Here is the scooter!!!

Anyway, the scooter enabled me to get around the places that I haven't been able to go since becoming ill. We visited Padstow and enjoyed walking (well my mum did the walking!!!) around and managed to get the scooter upto the war memorial at the top of a steep hill which I would never make up if I was walking myself. It was a beautiful day but very windy and I was so happy that I got to see the beautiful view from this place.

 

      The beautiful views from the top of the War Memorial in Padstow

We also visited The Eden Project and i was very surprised that it was all easily accessible. I was able to access all the outside area and the domes that are there. We had to go on the land train to get to the biomes, even though I could access the majority of the pathways, I was worried that the scooter battery would die on me as some of the pathways where quite steep to get up. At The Eden Project there are two biomes you can go into and explore- The Mediterranean biome and The Rainforest biome. The rainforest biome is very stuffy and humid, you can walk around it and experience what it feels like to be in an actual rainforest. As i got to the top of the biome I started struggling as it was so hot and humid, i began to feel really hot, breathless, dizzy, nauseous and as weird as this sounds thirsty!!! It was such a relief to come back down and out into the fresh air again. There was one thing I enjoyed though, you get to cross a bridge and steam comes up from underneath to recreate a cloud formation, this was so refreshing. The Mediterranean biome is much more refreshing and is beautifully decorated in all the stunning Mediterranean colours of blue and white. There was a lot more flowers that I recognised in this biome. In the middle of this biome was a Mediterranean style restaurant serving different kinds of food e.g. Olives, Antipasti, focaccia and Spanish Paella. We didn't try any but it smelt amazing. In the middle of the biomes is a place where you can buy food and this is known as The Core. We ate in this bit and a had a big dish of nachos to share between both of us. Overall it was an enjoyable day out and I really enjoyed myself. 

This is the view of the biomes-to the left of the picture is the Rainforest Biome, the middle is the core and to the right is the Mediterranean biome.

This is a picture of the bridge you can walk across and experience what it's like to be surrounded by clouds.

 
This is a picture from the top of the rainforest biome.

Anyway I had a lovely time in Cornwall and am looking forward to my next trip back again in the summer holidays.

It just shows that I can get around places and still enjoy myself to!!!

As always thanks for taking the time to read my blogs.

Ferrinject study-part 3- the final visit

Hi folks hope you are all well.
So following on from the blog "Research all the way!!!" I was back at the Royal Hallamshire hospital on 17th May. This was my final visit for the ferrinject trial. Again all my tests had to be re-done- ECG, bloods, MRI scan, 6 minute walk test, exercise endurance test on a bike!!! This time I didn't have an infusion as I only get 2!!! I was told that only people who are severely anaemic get the ferrinject-iron, but it's not be proven to work!!! Some people may have had it and it may well work. This is why the research team are doing the trial to see if myself and other PH patients who are deficient/low in iron benefit from the ferrinject infusion. If it works I may be offered this as part of my treatment. The results won't be ready till maybe for another 12/18months. I really hope it works as i'm fed up of feeling tired all the time.

Anyway after my last visit to Sheffield back in February where I had the second infusion-(still don't know which one I had!!), I felt better in myself e.g. I felt less breathless, felt less fatigued/tired, and my exercise levels seemed to increase!!!! Is this just a coincidence that I want the ferrinject to work or did it really have an effect on me?? We will have to wait and see what the results show. Anyway, this time I did my walk test and didn't need to stop or sit down in the middle of the test. Mercy, the research nurse said that my walk test had gone up each time I had attended the clinic- it had gone from 93 the first time to 450 metres on Wednesday, I was very impressed with myself. Even on the endurance test which is where you are hooked up to an ECG monitor, a breathing mask to measure my breathing and a blood pressure monitor, I impressed myself as I managed to do the whole test without stopping till the end!!! I was moderately out of breath this time, whereas last time on the exercise test I had to stop as I was severely out of breath. I do try and push myself to my limits on things like this as I know I'm in the right place if anything happens to me.
Whilst I was in the research clinic I saw one of my PH doctors Charlie, he said I was doing well and that after this visit they would like to see me back in normal PH clinic in 3/4 months. I have to stay well as my sister gets married in September and i'm being chief bridesmaid!!!
That's all for now folks, hope you enjoy reading.

A little bit of everything

Hello folks hope you are all well.
It's been a while since I blogged, so I thought I would do one to share what I have been upto.
First up was my recent trip to the Royal Hallamshire hospital for part 2 of the Ferrinject trial. This consisted of a night over in Sheffield and all my tests repeated from the first visit. See my blog titled "Research all the way" for more on the trial. This time the bike was working!!! As they have got a new one. The tests consisted of MRI, 6 minute walk test, bloods, ECG. I also saw on of my PH doctors Professor David Kiely, he said I was looking very well and was pleased with my progress and that I could continue on the trial. I had the second infusion-(which I don't know what it was). I think this time I had iron as I felt different to the last infusion that I had. I felt less tired, less breathless and basically had a lot more energy than what I usually have. I will try and get a few pictures of me doing my tests on my next visit to Sheffield. I'm back in May for the final trial visit, this time all my tests are repeated as usual but no infusion is given.

After Christmas I decided to start swimming again!! I've always liked swimming and am quite confident in water. But having PH makes things like exercising very difficult!! I can get quite breathless and tired if I do to much, I also have to be supervised whilst i'm swimming just in case I start to feel dizzy or feel like I'm going to faint/black out!!! Not that that has ever happened but it's just precautionary. Anyway I go swimming once a week with my mum,  as long as i feel well and i'm not to tired. If i'm feeling tired I won't go swimming as this can make me feel ill or make me go dizzy. I really enjoy swimming and it's good to see how far I can get. I just take my time and swim one length then stop and rest, and swim another length and stop and rest. I know my limits and stop myself when I know i've had enough. Hopefully this will also help me maintain my weight and also increase my lung function to.

I've currently finished work for 2 weeks now for the Easter holidays and i'm going to Cornwall tomorrow (Sunday) with my mum for a week. I love Cornwall and the surrounding areas!! I call it my second home!!! We are hoping to visit the Eden project one day so I will post pictures when i'm back as the signal is rubbish in some parts of Cornwall.

Well I will leave for now, as always thanks for reading.

Love to you all xxx

Pulmonary Hypertension Awareness week

As it's Pulmonary Hypertension Awareness week I thought i would do a blog to raise awareness of this horrible condition that I have.
Most of you know that I have a serious lung/heart condition called Idiopathic Pulmonary Arterial Hypertension. It's not just "high blood pressure" as some people think!!! It is high blood pressure in the blood vessels connecting the heart and lungs (pulmonary arteries). This makes the heart pump faster to get the blood flowing round your body. It also causes strain on the right side of the heart and can lead to heart failure or even death if not treated with the right medication and the required specialists to monitor the condition.
There are many causes of PH, here are just a few:
Congenital heart disease
CTEPH (chronic thromboembolic pulmonary hypertension)
IPAH (Idiopathic Pulmonary Arterial Hypertension)

Pulmonary Arteries Hypertension or PH for short is a very  rare condition with only 7000 people in the U.K. diagnosed with it.
PH affects people differently in many ways, affecting the way we do our jobs, housework, getting dressed/showered/bathed. Even a simple task as going up a flight of stairs can become tiresome for us. There are a wide range of symptoms that include dizziness, fainting/black-out, shortness of breath, swelling of the feet/ankles/tummy, chest pain, feeling nauseous/sick, fatigue/tiredness.
I experienced majority of these symptoms prior to being diagnosed with PH two and a half years ago.
Luckily enough I have a good GP who picked up that something wasn't right with my heart and told me to go to my local A&E department at Royal Blackburn hospital. Once there I was admitted and they began testing me for all sorts of things ranging from clots on my lungs, hole in my heart etc. They then suspected PH but couldn't be sure as they don't specialise in that area. They sent me to the Royal Hallamshire in Sheffield, which is one of nine specialist PH centres in th UK.

Many of the specialist centres run different tests to diagnose PH including ECG, Echo-ultrasound of the heart, cardiac MRI scan, right heart catheter-allows doctors to measure blood pressure, 6 minute walk test, blood tests, chest x-rays. I myself have had all these tests done at different times when I have been to my clinic visits.
The treatments used for PH vary from person to person. Some people take oral medicines in a form of tablet, other people use nebulisers along with tablets, others have a Hickman line which pumps drugs straight into the heart.
At present time I am taking a lot of tablets which include diuretics, warfarin, omeprazole for heartburn/acid reflux, sildenafil and macitentan.
At the present time there is no cure for PH, but people can undergo heart/lung transplant or just double lung transplant. This is not a cure as you still have to survive the operation, will be on lots of drugs such as anti-rejection tablets, immunosuppressant tablets.

PH also has a big impact on our emotional well-being. It can be very frustrating at times as myself I realise I can't do what I used to do e.g. Walking the dog-I get very short of breath if i go for a short walk, I have to stop 3/4 times even walking on flat ground!!!! I used to play netball but obviously I had to stop that. I enjoyed swimming- I can still do this but it must be supervised just in case I start to feel dizzy or I black-out, so I always take someone with me.

I've tried my best to explain my illness in this blog, but writing this hasn't been easy as I have been lost for words and I also get very emotional when explaining to people about my illness.

Thanks for taking the time out to read this blog. If anybody has any questions then please don't hesitate to ask me about this condition that I have. Alternatively you can go onto the PHA UK website which is very helpful.
The website is www.phauk.org
#LetsTalkPH
#PHWeekUK

Research all the way

Hello folks, hope you are all well.
The last couple of days have been quite hectic for me.
I'm on half-term holiday and spent two days at the Royal Hallamshire hospital in Sheffield undergoing lots of tests, apparently after my last clinic visit I am deficient in iron, and there is a new treatment that the research team are trialling called Ferinject for iron deficiency in PH patients. This trial is over 24 weeks and for two of those visits I have to have number of tests done which I will explain as I go on in my blog. I have to stay overnight at a hotel so that the research team can do all the tests in 2 days.
I arrived on 2nd November and met Mercy who is "in charge" of this particular research trial. Mercy said she would put me up in a hotel for the night and also arranged for me to be picked up and taken back home via taxi so that I didn't have to drive all the way to Sheffield. I had all the usual clinic tests e.g. Bloods, ECG, urine test, 6 minute walk test. I saw one of the PH doctors (Charlie) and he went through all the information with me as well as doing a check-up on me to make sure I was medically fit to do all the necessary tests. He also told me that I wouldn't need to attend my usual PH clinic appointments as they will combine that with the research visits.
Unfortunately I couldn't do the bike test as the machine broke down just as I was about to start the test. So I was sent back to the hotel for the evening and me and my mum went over to Meadowhall shopping centre to get some tea and also do a bit of retail therapy.
The next day 3rd November I was told to be at the hospital for 8am as they needed to do a fasting blood test. I couldn't have any breakfast so I was absolutely starving!! I then went and had an MRI scan and came back to the research facility only to be told that I wouldn't be able to have the infusion as the bike test hadn't been done as it was still not fixed!!
So now I have to go back to Sheffield in two weeks time and hopefully I will be able to do the bike test as it should be fixed by then. And hopefully they will give me one of two infusions. I will either get the iron or it may be saline. Whichever one I get this time I won't get on my next visit which will be in February 2017. I'm hoping this trial will work, and make a difference to all the PH patients who are deficient in iron. The results won't be out for at least another year as it takes the trial 6 months to do. Hopefully if it works it could become a treatment for PH patients like me who are deficient in iron in the future.
 Hopefully I will meet some of the Sheffield patients next weekend 12th November at the Sheffield patient day.
Thanks for reading my blog.

Decisions, decisions!!!!!!

Hi folks, I haven't blogged for a while as i've been busy with work and other personal things to.

But I have good news!!! My sister got engaged back in July and I am going to be maid of honour at the wedding. The date is set for next September 2017. So that's one good thing to look forward to, i'm so excited.

As the title says "Decisions, decisions!!", well yes I had to make a big one last weekend 10/9/2016!!!!

As most of you know I am on the active transplant list for double lungs. Well I got a phone call from the transplant co-ordinators last Saturday evening saying they had a potential pair of lungs for me. Unfortunately they where ex-smokers lungs and I have opted to not have smokers lungs at the moment whilst i'm still so reasonably well. This was a huge decision for me to decline as yes I do want new lungs but i'm not willing to put my health at risk by accepting smokers lungs in case I get say like 4/5 years down the line after transplant to be told that I have something like COPD or lung cancer. Not to say this will happen. I've never been a smoker in my life and why should I have somebody else's lungs when they have smoked!! How do you know they have stopped smoking to!! 

At least now i've had a practice phone call and will know what happens when I get my next call. It has taken me just a little over 12 months to get a call!!! I'm sure I can wait another 12 months to!!!

I'm sure the transplant team at Wythenshawe will grill me next time i'm in clinic and ask if I still want to be on the transplant list.  

Well the summer is over with and i'm now back at work after having 6 weeks off for the hols. I work in a nursery and get school holidays off!!! It's ok for some!!! I've started on new hours as well. Going down from 14 hours to 12 1/2. I was struggling a bit on 14hours so decided to drop my hours. So far so good!! Counting down to half term in October which is very late this year. I'm off the first week in November!! Some schools where I live near are off the week before!!! It's very strange!!! 

Anyway that's all for this blog. As always thanks for reading. 

Hope you are all as well as can be.