Palliative Care Again

So I had an appointment with my palliative care doctor today to try and get some good pain killers for my chest pain. She didn't really know what the chest pain was but agreed that it was probably my pulmonary hypertension. Whether it's the effect if the pressures in my lungs or the effect of my lungs having to work harder. She did say it could be the iloprost but I'm not sure because the pain doesn't seem to get worse after I take it. She said it could be something to do with the stomach also because the pain is right at the bottom of my lungs so it could be something else. You have to be careful not to get fixated on the lung disease and just assume it's the lungs. I've had problems with my abdominal organs before now. 

She didn't get any tests done because I'm going up to Bristol early November and it's best not to have too many x-rays if you can avoid it. They aren't dangerous really, but when you've had at least two a year for the whole of your life, the radiation starts to mount up a bit. There's no point having one in Gloucester for them to do new ones in Bristol in less than three weeks. 

Anyway, she offered me a man made version of the oramorph, which tends to give people less side effects than the conventional form. I haven't tried it yet cause I have to drive back to Bath this afternoon and I don't want to risk it making me feel too drowsy to drive. There are lots of options if that doesn't work. It's just a case of finding the right painkiller for me. I'm glad I'm starting to get sorted on the pain killer front because I feel like my chest has got worse in the last few days. I'm hoping this new morphine is going to work. I'm falling a bit behind on my uni work. I think I'll have to spend tomorrow sending apology emails to all my tutors as I've missed a whole week of lectures now and I haven't recuperated at all. My palliative care doctor couldn't really help me on that apart from making sure I get a good night's sleep. Trouble is my pacemaker isn't very good at slowing my heart rate down enough to sleep. She said that was normal though so at least I feel less weird now. I've hallucinated whenever I've tried sleeping tablets so I'll just have to stick to camomile tea. 

I'll keep you posted on whether the new morphine does the trick.

Thanks for reading :) 

Visit to Palliative Care

So before you all start freaking out that I'm dying let me just explain. Palliative care is not something that is just available to those who are getting to the end. Similarly morphine, which I am taking, is not solely used for those waiting to die. Palliative care is probably best known for their amazing work for people who are dying, including making them comfortable and allowing them to stay at home with the help of nurses. This is not what they do for the majority of their time. They are a service, which is better informed and organised than a gp, which concentrates on managing the symptoms of people with chronic illnesses or diseases. They also act as a support for those dealing with life threatening illnesses and diseases, something that gp surgeries are not equipped to deal with.

The reason I was referred to the palliative care team was to help manage my pain. As I've mentioned before, I've been having quite a lot of chest pain for the last couple of months. As for the cause, no one seems sure. There's quite a few possibilities but there aren't many ways they can prove any of their theories. So I probably won't ever know what's causing it. Perhaps how it reacts to certain painkillers might rule a few things out but as to a definite answer - I don't think I'm ever going to get one.

I think the trip to palliative care today was really useful. The woman I saw seemed to be really well educated about my condition. Which is really unusual, considering how rare my conditions are. She sounded like she had read my notes pretty well. She had a lot of ideas about the pain. She said it could be an inflammation on my sternum, which I had broken twice so that my surgeons could access my heart for my open heart surgeries. She said things like that take a long time to heal because there's no way of putting a brace or strapping up my chest to allow the bones to heal after they've been broken so things like inflammation and healing problems are common apparently. So that could be a reason. She thought it might be iloprost playing a part as well because she said the infusion tends to be painful so it could be that. I did have the same kind of pain in January before I started it, but I guess this could be a different pain that just feels really similar. So in the last few days I've gone from my actual specialist doctor having no clue at all, to a specialist nurse and a random doctor I've never met before coming up with loads of reasonable ideas and, more importantly, solutions to the actual pain, which is stopping me going out and doing what I want to do. 

The plan is to have a look at some recent x-rays to look for inflammation in my broken sternum, and to check out my kidney function from a recent blood test just to check they're doing okay before I start putting more chemicals into my body and to try and find out what the best kind of painkiller will be for me. The only choice really is different forms of morphine that are slow release so I can have some background pain relief and something doesn't make me feel too calm or strange so I can still drive and keep up with everything that's being said in my lectures. Oramorph, which is what I'm on now, acts fast but stops working quite quickly so for a constant it's not brilliant. When I'm on the other morphine I can still take this as a top up when it's really bad. I don't feel I suffer much with the side effects of morphine but they do make me feel a little spaced out when I take a lot, which is fine if I've got nothing to do but if I need to drive or concentrate on work, it's not ideal. 

She put my mind at rest quite a lot about taking morphine all the time, the slow release form and my oramorph. She said it was virtually impossible to become addicted to it when taking it for pain relief. It's when you take it when you're not in any pain that it effects different receptors in the brain and causes addiction. And she said that for me personally it's probably the safest thing I can take, aside from paracetamol, which doesn't help the pain at all. Mainly because of all the medication I'm on is effected by taking things like ibuprofen but is perfectly safe with morphine. Even though we think of ibuprofen as being a quite safe over-the-counter drug, for me it's much more dangerous than taking morphine, which she said isn't really dangerous but has to monitored well because of the implications of taking it when you're not in pain. 

I think people get quite freaked out by the thought of morphine because of the stigma of death and addiction attached to it. I mean, it's a class A drug after all. But I don't think it's really this amazing, dangerous pain relief that some people think it is. It's sounds like quite an extreme form of pain relief, and the fact that's it's not actually relieving my pain might sound pretty strange to you but it isn't an all round great pain reliever. There are a lot of different forms, it's not all the same as what they give people when they're dying. And they probably give those people a higher dose than you could function on outside hospital. So morphine is a the most sensible drug for me to take and like palliative care, it's got a bit of a bad reputation. 

I'm really glad that I said I was a bit nervous about takinb morphine because of what people think about it, but she really put my mind at rest on that one. We also talked about anti-sickness drugs because whenever I'm ill I get insanely sick. I've never found an anti-sickness that works for me, my body just doesn't like them at all, even the ones they use on cancer patients going through chemo, but it's nice to know that if/when sickness becomes more of a problem we can have a look at trying some more out and seeing if there is just one that my body can handle.

I'm really happy with today. Even though I didn't actually get any more pain relief, but after my trip to Swansea next week it should all be sorted and at least I won't be at uni all the time so I can pick up new drugs and visit the palliative care team whenever I need to without having to arrange a trip home. 

So this turned out to be a long post. Hopefully knowing more about palliative care and morphine might come in useful at some point in your life.

Thanks for reading and happy Wimbledon season! (yes, I'm a tennis fan) 

Hospital visits

It's been quite an eventful two days! I've had lots of trouble with the contraception I'm using, and I ended up phoning out of hours and dashing off to the hospital at 11:00 last night (if you don't have out of hours in your country it's where you go when it's not a big emergency but you need to be checked out and the doctors are closed). They didn't want to give me anything to help because they didn't know if it messed with my PH or any of my medication. I was bleeding so much it was ridiculous. So it was a bit of a waste of time but at least it put my mind at rest a bit as she said the amount of blood I was loosing wasn't harming me because my blood pressure and heart rate would be all over the place but she wanted me to have blood tests done today. But as luck would have it, I had an appointment with my PH doctors today so I just got them to do the bloods. They weren't that helpful either with the whole bleeding and tummy pain problems. They just said to wait and see what happens.

Anyway they did kind of sort out my chest pain. A nurse from Hammersmith Hospital in London was there, which I was really happy about because I know she's really good. She was the one who suggested morphine for my chest pain when all the doctors were doing was dithering about and saying they didn't know what was causing it. When obviously the pain was the thing that was getting in the way of my life and they'd done all the tests they could do so they knew it wasn't anything major. But anyway, she said it was quite common to get chest pain with PH (why my doctor didn't think of that I don't know!). She said it could be my heart getting bigger from all the pressure and strain it's under and that could be stretching the outer layer of muscle around the heart and causing pain. Or she said it could be an inflammation in the lungs due to the pressure in the lungs. But neither are really bad, it just the PH having an effect on them, it doesn't mean it's getting worse or anything. 

They've increased my iloprost dose again but they don't actually do the medication in a big enough dose so I have to put my new dose and my lower old dose together. So I have to nebulise twice every two and a half hours now, which is a pain but it's worth a try. 

I completely failed my walk test. I hardly did 100yards and I felt so out of breath and the nurses had a panic because my heart rate was so high. But I felt fine after a lie down. Hopefully my breathing and stuff might get better on the higher dose of iloprost. 

I had a pacing check too and they said there plenty of battery left but it's quite difficult to say how fast it'll run out because the amount my heart needs it varies quite a lot. But it sounds like it'll be at least a year so hopefully I can get it done in the summer holiday so I don't miss any uni. 

I'm feeling so tired tonight and my chest is really bad from lack of sleep and that walk test, which my chest was really not a fan of at all. Think it's time for me to get some sleep. I'm off to yet another hospital appointment tomorrow just to check my hearing then I'm going to see my dad so it should be a nice evening. The hearing test isn't till 4 so I can have a nice long lie in.

Night all.

Thanks for reading 

Hospital visit

Well, I said I didn't expect them to come up with anything and they didn't. They have absolutely no idea why I am in so much pain. They just kept saying, "well, we know it's not the heart, that's good" but that doesnt help me. I'm still in pain and to be honest I didn't think it was my heart to begin with. I knew how this appointment was going to go, but I still wasn't really prepared for them to shrug their shoulders and start coming up with weird ideas. They're sending me to someone else because they reckon it could be heartburn. I've never had this but I'm sure for one it wouldn't continue solidly for 3 weeks and secondly be a 9 on the pain scale.

It is very frustrating not knowing what it is. I'm used to it, but that never really makes it easier to deal with, just easier to put out of your mind when you want to.

I'm really not keen on staying on morphine for a long time either, because I'm sure that's not good for you, but I don't want to be in pain either. It doesn't really get rid of the pain but it takes the edge off and stops you getting restless and unable to find a comfortable position. It's a highly addictive class A drug, which sort of scares me a little. But my doctors don't seem too worried about it. I know I'm not addicted because I often forget to take my next dose and only remember when the pain starts getting really bad.  But it's still a bit scary. I hate the idea of being dependant on something. Even though I'm practically dependant on all my drugs, it's just not a mental dependancy.

So I'm going to be in pain for a while. Good job my uni is done for this year. Except for two assignments I missed due to illness earlier in the year, but they're not due for a while I think. They're both essay type things, so I can whip them out quickly compared having to give in a story, which takes a bit more careful planning. That sounds a bit backwards but I'm a bit backwards myself.

Just got to hope the pain eases a bit in the next couple of weeks.

Thanks for reading!

My sexy oxygen tubes and one poorly chest :(