Thursday 6 August 2015

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. 

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