Life is full of up's and down's

Hello everyone, hope you have all had a good Christmas, sorry I haven't posted on here for a while. Been a little busy with work and other things to. Well i've enjoyed this year, made lots of happy memories by going on hen-do's, weddings, holidays and meeting lots of new friends at the PHA UK Conference. 

I really enjoyed meeting lots of you people at the conference and it gives me hope that there is a lot of work and research going on to eventually find the cure for PAH. It was a joy to finally meet Stacie- you are such an inspirational person. Also Tess you were lovely to talk too. As where many others who filled me with hope to battle this horrible condition.

As it says at the top "Life is full of up's and down's",  i've had a few wobbles over the last few months. Basically because I have been tired or because I just really hate having to battle this condition on a daily basis. I hate that I can't go for a really long walk with our beagle anymore, it really stabs me in the heart as I loved going walking. I also hate the fact that I struggle to go out with my friends drinking till the early hours of the morning as it makes me feel so tired and ill, as I found out when I was on a hen-do in n Manchester back in June. I long to be able to be free from PAH and do normal things- yes I know I can still enjoy myself. 

Well Christmas at our house this year has been quiet and fun. We all went round to my sisters (Caroline) house on Christmas Eve and had to wear our Christmas jumpers, we had turkey baguettes with Brie and cranberrIes, it was a fun evening. Then on Christmas Day we celebrated Alex's 30th birthday-my sisters boyfriend. Caroline invited us all round to her house  for birthday drinks, and she and Alex stayed at their house and had a birthday meal together. At our house it was just a lovely family Christmas meal-mum, dad and brother. Boxing Day again was a fun day. Caroline and Alex came over for there Christmas Day. So basically i've eaten and drunk lots and it's been fun. 

So here is to a very happy new year to you all. Let's hope it brings joy and good times. I'm already looking forward to 2016 as i've got a hen-do in Marbella in April and a wedding in August. Let's see how many more things I can do and make happy memories. 

All the very best to you all. 

As always thanks for reading. 

A positive PH specialist hospital visit

Well we are already at the the of October. As I'm currently writing this i'm on my half-term hols from work. Not done a great deal apart from having my INR's checked, meeting up with friends and generally sleeping. Being back at work has real took it out of me this term. I have already had a week off with being ill!!!! It wasn't PH related thank goodness, but it made me feel awful. I had a virus/cold/chest infection and felt miserable the whole time. I had to get myself better as I was going to Zoe's PH Phighters party. It was lovely to finally meet with Zoe and know that there is someone else with PH who lives not to far from me. The party was fantastic and the total amount of money raised was well over two grand. Well done to all of Zoe's friends, family and colleagues. 

Me and Zoe.

Last week 19/10, I had a clinic appointment with my PH specialist. All is well and i'm stable on my meds. They have taken me off my amolodipine tablet as it's doing exactly the same thing as the sildenafil and macitentan. The specialist said it shouldn't make much of a difference to me but if my symptoms flare up I have to ring Sheffield and they will put me back on them. I also asked about a "fit to fly" certificate as i'm going to Marbella next April on a hen do!! The specialist said I would need oxygen as my oxygen levels dip up and down. So now I have to ring my specialist centre and speak to the nurses to arrange oxygen for myself. I also got to meet two other PH patients whilst at Sheffield, Judith and Steph. Was lovely to meet them both, i've never actually met anyone from the Facebook group at my specialist centre before. Was good to have a chat about how we manage our PH and how we where feeling. Steph I hope your feeling better. 

 I'm also looking forward to meeting lots of other PH friends at the conference this weekend. 

Never forget.....hmmm easier said than done.

Most of you will now know that i am now on the active transplant list waiting for double lungs. On the 6th August i started doing to pulmonary rehab classes. This is where we do a series of exercises to build my strength up for when I have my transplant. The exercises are fairly easy to do and consist of lunges, sit to stand, wall presses, biceps curls using weights, step up's, bike and something else which I can't quite remember what it is. After the hours exercise there is usually an education lesson, sometimes I stay for these but the majority of people have COPD. I'm enjoying going to the classes even though it's more aimed at COPD patients, but i've met some lovely people. There is a lady in my class that has IPAH, she uses oxygen which I don't at the moment. 

Anyway back to my tale and the reason why I have put the title as it is. I went on holiday to Cornwall lwith my mum in August. We stayed in a static caravan on the lovely Mother Ivey's campsite. My brother has bought a plot on there to put an adapted static on for his use as he is a wheelchair user, I won't go into to much detail about it though. Anyway me and mum set of on the Sunday 23/8, I had packed all my clothes and just before we set of my mum said to me have you got everything?? My reply was yes. We got down to Strensham services on the M5 and I suddenly realised I had forgotten to pack all my tablets except my sildenafil!!!! How very silly of me!!! I was so annoyed with myself!!! My mum was not best pleased and said "I'm not turning around now for them, you will have to ring your dad and be very nice to him to see if he can post them out to you!!!" So I rang my dad and asked him to post my tablets to me on Monday morning using special delivery so that they would be there on Tuesday morning. We got to Cornwall on Sunday evening and it was lovely, we watched the sun go down from the headland of the campsite and then went back to the caravan. On Monday we decided to have an easy day as I didn't know how I would feel from not having all my tablets. I managed fine but felt a bit more breathless than usual. Tuesday arrived and I went upto the caravan site shop and there was my name on the board "Makin" hahaha!!!! I went into reception and said I have a delivery today my name is Catherine Makin. The receptionist said oh yes I think it's here, and pointed to a pile of brown paper bags/parcels on the floor. Finally my tablets had arrived!!! I quickly took them and we went out for the day. The campsite has its own private beach so on Wednesday we decided to go down and have a little walk along the sand. Now to get down to the beach is a very big slope, I can get down but can't get back up again as I don't do well with inclines as they make me breathless really easily. 

This is Mother Ivey's beach.

Anyway I decided I would go down and have a wander along the beach with my mum in tow. It was a lovely sunny day, the wind was a bit cool but I had my shorts on!!! We walked along the beach and sat down on the rocks for about an hour watching the waves crashing onto the rocks. It was pure bliss!!! Eventually we set off back up the beach to make our way up the big slope. I'm thinking yeah I can do this, I will just take my time. We approached the slope and I was a little out of breath, I then spied a little golf buggy just at the end of the slope but there was nobody in it. Then my mum spotted one of the staff from the campsite and asked if I could jump in the golf buggy to take me back to the top of the path. The gentleman was lovely and said I could jump on the buggy and he would take me back to the caravan. I said I would be fine walking back upto the caravan so he dropped me off on the campsite road very near to the caravan. We also had a wander up to the lighthouse at Trevose Head on the headland but it was very windy and I couldn't walk far as the wind really takes my breath away. That night we went to watch the sunset at Trebarwith Strand, such a beautiful place and it's good for watching the sunset. We found a pub to have our tea in and then dove down to the car park. Bearing in mind the car park is on a bit of an incline, and as I mentioned earlier on I don't do very well walking up inclines. So we sat and waited for the sunset but it kept going cloudy so we didn't get that good of a sunset. Never mind there is always next year to watch it. 

This is a picture of the sunset at Trebarwith Strand.

On Thursday we went to a vineyard- can't actually remember the name. But the wine was gorgeous!!! Unfortunately they didn't have any red wine in as it all depends on the produce if the grapes. The grapes that where being grown this year won't be used for another year to produce wine. That's how they make wine apparently!!! We then decided to go to Polzeath beach. One of my mums favourite places. We found a parking space and decided to go and get a Cornish pasty for our dinner. We wandered along the beach and sat down on the sand. It was so busy as it was the school holidays. We sat on the beach for about 2 hours then mum said come on we have to get going now, need to pack our stuff and go home 😞. The journey home was horrendous!!! They had shut part of the M5 at Birmingham so it took longer to get home than it did to get to Cornwall. 

Anyway that's my tale of my holiday, I managed fine without my tablets for 2 days and had fab tIme in Cornwall. 

Wedding day and a trip to London

Well it's been a busy few weekends for me this July/August. Firstly i went to my friend Heathers wedding to her partner Laura on the 25th July. It was over in the Peak District at a hotel called The Maynard. Just 20 minutes away from Sheffield!!! I had such a brilliant time at the wedding but was so tired the day after. Let's give you an insight into that day. I had to set off at 10:45/11am to get to the venue. And my brilliant brother volunteered to take me and pick me up. I was up at 7:30am to have my hair done by the hairdresser. Then i had to go and collect my flower from the florist. By this time it was 9:00am and i thought before i get dressed into my outfit i will have a bacon butty and a rest so I don't get to over-tired. So there i am sitting on my bed with my feet up and resting, then my mum comes to me and says "it's nearly 10:00am are you not getting dressed??". So i shot up off my bed and got washed and dressed and into my new dress. Being careful not to reck my lovely hair-do. I applied my make-up and spritzed myself with perfume and all ready for 10:45am. Not forgetting all my tablets that I would need for that day. Gosh so many things to remember when we are living with PH. Anyway we had a good run out through the Peak District to get to the venue this consisted of going on all the motorways, along the Snake Pass and into the little village called Grindleford, which was were the wedding venue was. It was a beautiful hotel and also the weather was good to. A little cool when the sun went behind the clouds. The wedding began at 1:30pm and i sat with two of my friends Paul and Leigh. My other two friends Carolyne and Chris where Heathers bridesmaids. They walked down the aisle and looked beautiful. Then in came Heather and Laura and they both looked gorgeous. It was a lovely ceremony and i very nearly cried!!!! I'm a bit of a softie!! After the ceremony we went into the hotel gardens and waited around for photographs and we had pimms and canapes. There was some lovely food-to many to mention. It was about 3:30/4pm when the wedding breakfast was served and i was getting a little tired and my feet where starting to hurt-after all i did have heels on!!! So I quickly changed into my flip-flops for comfort. The wedding breakfast was lovely and i was stuffed afterwards. We had champagne for the speeches which where done by Carolyne and Chris for Heather. And then it was Laura's bridesmaids-can't remember their names. I thought Carolyne and Chris's speech was better!!! Then after the meal we all went back down into the bar whilst the ceremony room was transformed into the evening do. By this time i was beginning for feel tired and just wanted to fall asleep. I waited till the cake was cut and the first dance was over and then i phoned my brother for a lift back home. I left the wedding about 10pm I couldn't go on anymore i was that tired. But all in all i had such a fantastic time. 

The second of my weekends was spent in London with my mum and dad. They treated me to a show- my all time favourite The Phantom of The Opera. The whole weekend was for me having to put up with everything i have been through in the last 12 months. Anyway it was another early start to one of my weekends. We set off from Preston train station on the 8th August, down to Euston. We stayed in a lovely hotel-Double Tree by Hilton which was a 5 minute walk away from Euston station. In my terms it would have been half an hour!!!! We arrived at the hotel and went straight to the room for a rest. I thought i will just have half an hours sleep to recuperate. Next thing i came to and my dad was saying "are you alright, you have been asleep for at least an hour". Gosh i must have needed that rest as it didn't feel like an hour. I got up and refreshed myself then we went out and caught one of the hop on hop off buses to do a bit of sight seeing. We got caught up in and ISIS demonstration on Regent St, which made us a bit late for getting back to the hotel for tea and getting changed ready for the theatre. We had a lovely meal in the hotel, i had butternut squash ravioli. It was delicious, I couldn't finish it as it was huge!!! We then set of to find a taxi that would take us to Her Majesty's Theatre in theatre land. Well what a performance of Phantom, it was excellent. I could go and see it again and not get bored with it. If you haven't already seen it I would highly recommend going to see it. We got back to the hotel about 11:30 and decided to have a drink in the bar. Then we made our way back up to the room for a good nights sleep. We got up the next morning about 9:00/9:15am to have breakfast. The breakfast was just as good as the meal we had. You could choose to have continental style or have a full English breakfast. I choose to have some fruit first then had a cooked breakfast. Theory being I wouldn't get hungry during the morning. We went back to the room, packed our bags and left our bags with the hotel until we needed to come back for the train. We set off out again into London. We got on another hop on hop off bus to go to the Tower of London. My dad went in search of a wheelchair for me as it would have been to much walking for me to manage. The only downside to that was I couldn't see all of the tower. When i've had my transplant i am going back!!! It was a fab day out and i got to see the crown jewels. They are stunning and so sparkly. After we had been in the tower we went to the gift shop. My brother wanted a beefeater bear!!! We then went on a river boat cruise along the Thames and again got to see some of the lovely historical places in London. It was a very hot day and i was getting tired and started feeling sick after the boat cruise. So we got back on the bus and stopped off at Harrods where we used the toilets and bought a drink to refresh ourselves. That's another place i will be going to once i've had my transplant. So i can walk around all the departments. It took us a long time to get back to the hotel as the bus went all the way round London nearly. We decided to get off at Oxford Circus and get a taxi back to the hotel to collect our bags, as we were running out of time to get to the train station on time for the train. We had about 30/45 minutes to wait at the hotel so we had a brew whilst we waited to catch the train. We got to Euston train station and had to wait in the departure lounge as my dad had booked assistance for me as the platforms at Euston are very long and I would have struggled walking along them. We got on the train and said our goodbyes to London. I had a fantastic time and will be back in the near future for another weekend of fun. Thanks to my mum and dad for the weekend.

Life is worth fighting for!!!

Well it's been just over 12 months now living with IPAH. I feel relatively well and am stable on my meds. The last couple of months have been hard and stressful as I really want to keep up with everybody, which is proving difficult. Especially when my friends are all having nights out and not including me!!! I get very frustrated by this as i know i would not be able to keep up as I can't stand for long on my feet and I don't drink alcohol as much as i used to. But i have a very good supportive family who try to understand how i feel. 

In my last blog I mentioned that i had been to see the transplant team at Wythenshawe hospital. Well i've had my transplant assessment and seen one of 8 surgeons and been accepted onto the double lung transplant list. Scary thought now!!! When i had my assessment i was in hospital for 5 days and it was boring but i did meet some wonderful people who had transplants, not just lungs but hearts as well. They reassured me that i can do it. The staff at wythenshawe are fantastic, even when i had my right heart catheter they made me feel really calm and relaxed as i was very nervous and fell to pieces when I went for it. The assessment had all sorts of tests eg echo, ecg, loads of blood tests, x-ray of chest and teeth, 24hr urine collection, lung function test and oxygen levels where checked to. I also saw the social worker and organ retrieval nurse. Alot of information for to take in over 5 days. I was so overwhelmed with it all. I then saw a surgeon a few weeks after the assessment who explained the procedure for transplant and whether i would need just lungs or heart and lungs.  The surgeon said my case would go to panel where everybody involved in transplant care is there to discuss whether I could go on the list. This meeting was at the end of the week and I would know that afternoon/evening if i would be accepted onto the list. 

Anyway i got a call at around 9:30 in the morning from Laura one of the transplant coordinators and she said that they would be happy to list me for double lung transplant. At this point i was feeling fine and excited- i want my life back after all. However there was a few more tests that needed doing but i was ok to have these done whilst on the transplant list. The tests needed are a dexa scan- to ceck my bone density, some blood tests and a smear test. I also have to go to my local hospital to the Maxilo-Facial department to have my four metal plates and screws checked from when i had surgery to my jaws when i was 17.  I've had my smear test-not the most pleasant of experiences to have done!! I'm just waiting for my appointment to go for the dexa scan which is in August, then i will be going to Max Fax in September. 

I have been accepted onto the list and now it's just a waiting game. But i'm not going to stop living my life just because i'm waiting for transplant. I've got things to do and keep myself busy to take my mind of the wait. 

What is wrong with me????

Hiya everybody i'm Catherine, 32 and live in Whalley, Ribble Valley.

I'm writing this blog to tell you about my journey to living with Pulmonary Hypertension.  

I was first diagnosed with Idiopathic Pulmonary Arterial Hypertension just over 12 months ago.

This is a serious lung and heart condition that limits things that i do on a day-to-day basis. I will explain what this is later in the blog.

I first started to notice things where making me ill 6-9 months prior to my diagnosis with PH, i had been diagnosed with asthma since the age of 21 and was on a variety of inhalers.

I was on holiday up in the Lake District with my mum back in 2013 and we had done a bit of walking up to a lovely reservoir called Kentmere. As we where walking i had to keep using my asthma inhalers, these where not fully opening my chest so i couldn't breathe properly. As we started to walk back down again to the car my mum noticed the tips of my lips turning blue. After this incident things started to get worse!!!! By christmas 2013 i had started with a cold/flu symptoms and couldn't shake it off (i also work in a nursery), i went to my GP and they said "oh it's a cold/viral infection it will clear within 1-2 weeks. However it didn't and i was still feeling ill, so went back to the doctors and explained i wasn't getting any better, they then prescribed me some antibiotics and said it was probably another viral infection with sinusitis. So i spent New Year 2013 on antibiotics and feeling rather grumpy.

By January 2014 i still wasn't feeling well and at this point i started to cough phlegm up whilst i was doing my usual activity of walking the family dog. Every time i tried to walk anywhere i had to stop 3-4 times to get my breath back. So again i went to my doctors and asked why i wasn't able to walk without having to stop and catch my breathe and also my inhalers where not working. I was on a brown steroid inhaler and a blue click haler-(salbutamol). My doctor just said "oh it's your asthma just keep on taking your inhalers" They put me on a higher steroid inhaler and said to use it morning and night. So again i took my inhalers as i was told to do. This made no difference what so ever!!!! 

By April 2014 i was getting more and more breathless and walking and doing my exercise like swimming was becoming such an effort for me. At this point i started being sick after everything i ate, my ankles and feet also started to swell, i also couldn't walk out of my drive at home without having to stop at the end to get my breathe back and i became increasingly worried and stressed as to what was causing this to happen. This couldn't just be asthma. Anyway after much deliberation i went back to the doctors and demanded that they find out what was going on. And why i felt so tired, lethargic, being sick every time i ate something. My doctor was excellent in picking up that there was something seriously wrong. I had 2 ECG's and blood tests, the blood tests came back normal apart from the liver function one so i had to have this one done again, both ECG's came back dodgy and the doctor said i want another one doing just to check it's right as he thought the leads had been put on the wrong way round. However after the second one he knew something wasn't right as my heart was jumping all over the place.

By the end of May 2014 my doctor wasn't happy and told me to go to ambulatory care at my local hospital which is in blackburn. He said take a bag they will admit you, obviously they didn't!! Ambulatory care is like an out of hours GP surgery but in the hospital. Anyway they did a series of test like chest x-ray, ecg's, blood tests and then i had a consultation with a doctor. They said my heart was beating very fast and was enlarged but to take furosemide tablets which are water tablets to help take the swelling from my feet and ankles. They sent me home and made me appointment for an Echo scan, this is an ultra sound scan which shows how well your heart is working. The appointment didn't come through till the end of June 2014. Anyway they next day after i had been to ambulatory care i was violently sick and in floods of tears as i was feeling rather shitty!!! My mum rang the doctors and he said to take me up to A&E and stay there as i desperately needed admitting. I got to AE and got a rather snotty nurse who kept asking why i was here and what was wrong with me. Your the nurse you should know!!! Anyway after a quick examination i was taken into the urgent care bit of A&E and was told to wait until there was room on the MAU ward (Medical Assessment Unit). Throughout the afternoon/night i was given random tests, yet agin more blood tests and they put me on an ECG monitor. I had an anti-clotting injection stabbed into my stomach which was horrible as it made my tummy bruise. 

The next morning a series of doctors came to see me and asked why i had come to hospital and what my symptoms i had. I said i was breathless and could not walk far without having to stop, i said that my feet and ankles where very swollen even after having rested them, i mentioned the fact i was being sick after each meal i had eaten, i also had a dry persistent cough, i was tired and lethargic. This time the doctors picked up that something was seriously wrong and moved me onto Coronary Care Unit to be assessed. I had numerous blood tests,  24 hr ECG's, chest x-rays, CT scans, then i had rather weird test called a bubble echo, i can't really explain what that is. They ruled everything out from clots in my lungs, hole in the heart but couldn't find and explanation as to what was actually wrong with me. They said we think it's something called pulmonary hypertension which is high blood pressure in the lungs which leads to right side heart failure. Ive never heard of this and was terrified of what it was. The consultant at Royal Blackburn said they where going to ring The Royal Hallamshire at Sheffield!!!!!! By this point i was getting slightly worried. Anyway as it was a weekend they rang and there was no consultants about to talk to so they waited till the following Monday  to ring. The rang and finally got in touch with a consultant at Sheffield, they said we need a few more tests doing before i could go home. They wanted me to have some lung function tests to determine how my lungs where working and how much i could blow out. Of course i needed and appointment for this so had to wait until later in the week to have it done. After all the tests where done i was allowed home. Within a week of me coming home i had an appointment at The Royal Hallamshire, the doctors and nurses there where excellent. I had more blood tests done, another chest x-ray and ECG, MRI and CT scans. I also had a test called right heart catheter-this is where they insert a fine tube into your lungs and heart via either the neck or groin and look at the pressure in your heart and lungs. I then saw Dr Condliffe and he gave me the devastating news that i had Idiopathic Pulmonary Arterial Hypertension. I couldn't believe what i was hearing and thought "why me??". It's called this as there is no known cause for it to happen. He gave me loads of facts and information, i was told the only way to prevent this condition was to undergo a double lung/heart transplant. But I probably wouldn't need to do this just yet.  I was started on sildenafil, macitenatn, furosemide and amlodipine to begin with. These are all meds to help stable the condition. I've been put on other meds which are spironolactone, warfarin-blood thinner as they don't want any clots to form, i'm also on omeprazole  as i was getting really bad heart burn from the sildenafil. At the present time i am stable on my medication, i have also been to see the transplant team and been accepted onto the waiting list fora double lung transplant, but i will put all that in another blog later. 

Thank you for taking the time out to read this.