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. 

 

A weighty issue!!!

As we all know PH limits how much exercise we can do. I'm trying my best to keep-fit and have joined a local gym, with the healthy lifestyles team at my local council. My gym programme is tailored to my needs and activeness and I just do what I can manage. Last week I couldn't manage to go to the gym as I was absolutely exhausted from getting up at 4 in the morning with the silly dog!!!! So I decided to go swimming, but this is one thing where I have to be supervised doing so I asked one of my friends to come with me. She is a qualified swim instructor and life guard. Well I managed about 10 lengths and felt so much better after doing a bit of exercise. 

Another issue is what it says in the title "A weighty issue!!". I'm really struggling to loose weight at the moment. I joined weight watchers 8 years ago and the programme has changed so much. I seem to be struggling with the new programme and it's getting me so annoyed. I loose weight one week and be really good then i'm putting it on again the week after!!! It just does not make much sense to me. So i'm going to ask at my next specialist appointment which is tomorrow 16th March. Should I just quit weight watchers and try another different weight group eg slimming world??? It may be worth it for me. I have lots of nice clothes in my wardrobe to wear and just can't fit into them!!! How annoying as I used to be quite a slim person before I got PH!!!!!!  

Anyway this is just a short blog this time round. 

As always thanks for reading my blog.

It's true what they say-"Having a chronic illness is tiring"

Well I know this is late but happy new year everybody.

As the title says, it's true living with a chronic illness is tiring, especially when your not feeling 100% yourself. Since the new year I have been a busy person living my life to the fullest, as much as I can without PH defeating me.

I had a routine appointment with the transplant consultant at the beginning of January. All was well apart from the fact that I have put a bit of weight on. Who doesn't over Christmas and New Year!!!! He basically said I need to keep as active as possible, which as we all know is very hard work when you have PH. But I joined the gym back in November and try and go twice a week. That sometimes doesn't happen especially if i'm meeting up with friends during the day or if i'm really tired. I also try and go for a walk with my mum/dad and Jasper doggie. Weather permitting, as always I struggle when it's very windy, like it has been at the weekend. 

The last few weeks have been somewhat busy. I've been staying at work an hour longer than I should so I can help out with the lunch club. And i've started to feel the effects it has on my body. Today (Monday) my body just did not want to play. I got up as usual ready for work, had breakfast and my tablets. Then just as I was about to set off for work I was sick all over the kitchen floor and sink!!! Now this got me very upset and worried as this was how I was just before diagnosis with PH. I thought to myself that it couldn't be PH as I would have been like that for a while if things where deteriorating. I think it's because i'm feeling rather exhausted and had had a busy weekend to. It also doesn't help when i'm smothered in a cold!!!

Anyway as i'm writing this I am feeling better but just absolutely worn out. But I will carry on none the less. It's only 1 and a half weeks of half term. I can make it and I will!!!!! 

This weekend coming 6/7th Feb is my brothers birthday. So I will be busy celebrating that with him and my family. The weekend after that will be celebrating his birthday to. We are all going to the casino in southport. Should be fun, as i'm a "lucky" person as my family keep saying.

I will let you all know how we get on. 

As always thanks for reading. 

Here's to a fab 2016.