An unexpected drama at the Neuro physio appointment

Since the Olympics ended things have gone downhill. I'm really glad things didn't go wrong until after the games, I'd have been really upset to have missed any of the action.

As I have talked about in my previous blogs, I walk with crutches as I have hip and back problems. I suffer from chronic pain in both but last week my back pain became much worse. It seemed to gradually increase over about 3 days. I was up all night walking around and was really fidgety as I was trying to get it to a level where the pain was manageable. I had neuro-physio coming up on the Tuesday and that day couldn't come quick enough in my mind because my physio has a knack of reducing my pain by using pressure points to release muscle spasm. Unfortunately when I arrived I was in absolute agony and no matter what she tried it just didn't seem to help at all. In fact, I think it made it worse. I could feel my eyes watering and at one point I was silently crying because I really didn't want her to see me being such an idiot about it all. When she finally finished, she asked me to sit up, which didn't come easily. Unfortunately as I sat up, I projectile vomited everywhere. Thankfully she managed to move out of the way just in time and spared herself. After that I just sat there swaying with my eyes closed feeling really faint. I must have looked like a right numpty!! I told her I needed to lay down as I felt so bad. She called the doctor over from the other wing to take a look and they checked everything. I had really low blood pressure and my oxygen levels weren't great. I think the stress of the pain was causing all this. Any who at some point during all this I did actually pass out, and woke up to find an ambulance crew stood next to me. I really didn't want to go in  but they weren't giving me any option, and with that much pain it didn't look like I had a choice, it wasn't like I could walk out of there. They took me to one of the local hospitals.

I was seen really quickly at the hospital and given some painkillers to try and ease the pain before they examined me. I never understand why they always try and give paracetamol  (the weakest painkiller in a pharmacy), to a patient in severe pain!?! As was expected, paracetamol did sweet F A, so they gave me some oramorph aswell. This didn't help either, as I use this at home intermittently for the pain and I have a certain tolerance to the low doses which means I don't really get a lot of relief from it. Eventually he offered me some IV morphine but as  good as this is as a painkiller, I knew he would never get an IV in me. I always go through the same battle with them time and time again. But I did have to eat my words when he got one in first time, albeit in my little finger! I couldn't knock the fella, he did a good job there. Perhaps my veins have had a chance to heal during the period I've been well.

The doctors at the hospital were concerned about a fracture of one of my thoracic vertebrae. Mainly because I have some degree of weakening in the bones due to steroid dependency for the last 15 years (for my lungs). I had a thoracic x ray and it was clear of a fracture but the x ray managed to incorporate the first 3 lumbar vertebrae as well and the doctor told me he could see that there was literally no space between them, they were sitting one on top of the other. As you can imagine bone rubbing on bone can be incredibly painful. I didn't want to stay in the hospital as I had an appointment with my own doctor/GP that evening and my physiotherapist had had a long discussion with her about putting me on a new medication called Gabapentin which is a drug that directly targets nerve pain. This seemed like a good option as the analgesics I've been on until now have a wide variety of uses and so don't necessarily act on the areas where I need them to. The doctor wanted me to stay as the analgesics weren't totally relieving my pain, but I figured that I'd only be stuck in there for days on end, being given loads of opiates, only to leave for home with no better idea of what was going on than when I came in. As it was, by the time we left I was too drained and in pain to get to the GP anyway. So Sean called them and explained the situation and asked if we could pick up the aforementioned new drug prescription so that I would be able to have some relief that night. They agreed but we needed to wait to hear back from the doc that night as he wanted to talk to me. But,  low and behold..... he never called back so I was left with NO pain relief that night. I was so angry and so upset. I was in agony and this just wasn't fair.  Thankfully the next day I was able to see my own doctor who gave me a script for the garbapentin and also played around with the dosages of my other medications, adding in tramadol as well. This has really helped over the past few days and I have finally managed to get some sleep.

The physio visited my house a couple of days later to see how I was doing. I was using my oxygen a lot as the pain killers were affecting my breathing. But without them I would have been climbing the walls so it was a necessary evil really. She was a bit concerned to see me laid up in the bed, still in pain and quite knocked off by the medication. She decided not to do any physio work that day as I was still in a fragile state and she didn't want to risk aggravating the injury. She consulted with the GP and together they decided they want me to have an urgent MRI on my entire spine and have referred me to see a neuro surgeon at a clinic in Dorking. They think my symptoms match with a slipped disc which may or may not need surgery (if that's what it is found to be). This has worried me as it seems pretty serious stuff but I am glad that they have been proactive in trying to find a cause for this as throwing drugs at it and treating it conservatively (as has been a habit in the past) is really not a solution.

I'd really like to start a family at some stage and so having long term issues with my spine and hips is a big worry for me. I am worried the pressure on my spine and hips as the baby grows will be majorly problematic for me and the  baby. I don't want the pregnancy to be one where I am laid up for 6 months of it in pain. That wouldn't be good for the baby. I asked the physio about this today. I know its not a pressing issue for right now but it was just something that was nagging me and I wanted to ask her about it so as I knew what to expect in the future. She really put my mind at ease as she said both her and her sister have had this injury and they were both able to bare 3 children each. She said that they actually found their back problems improved during pregnancy (who'd have though that!?!) as the muscles around the back relaxed to accommodate the babies growth. Apparently it's a common occurrence. So thats one less thing to worry about anyway. I'm waiting to hear when my appointment for the MRI and Neuro surgeon is. I'll no doubt blog about it more when I have them - should be happening in the next two weeks. 

Portable O2 and Hickman Lines

Today I went to see my respiratory consultant. He has been my doctor for over 15 years so we know each other well. I've approached him many times before regarding a portable oxygen supply. He is always so reluctant because he says if I have access to it portably, I will be reluctant to go to hospital when my breathing is bad which can be life threatening. But with my recurrent emergency admissions it seems ever more pressing an issue. 

I took Sean with me. I was worried about this as I didn't want to over-emerse him in my medical world. I want him to get to know me for me before he has to confront all that's wrong with me. But it seemed important to have him there as not only support but also so as he could tell my doctor what (in his experience) happens to my breathing when I sleep. And of course what he witnessed on the day I had to go to Resus recently. It's difficult for me to recount those events as I was largely unconscious for the majority of it. 

My doctor did listen and to my surprise immediately agreed and filled in the application to get me some portable O2 albeit only a bottle to carry rather than the re-fillable liquid supply. But I was happy for that alone. It gives me a lot more freedom to be able to travel in the knowledge that it buys me time if I am any distance from a hospital. 

Another very important thing I wanted to discuss with him was the option of a permanent port of some kind. As you may or may not have read from my previous blog posts, I have absolutely no venous access any more, thanks to years of medical intervention. He was concerned, as they always are about the risks of this getting infected. And also said he was worried about the cosmetic appearance of it. I told him straight out, I was at a  point where cosmetic factors no longer matter to me. Just to have the relief of not being stabbed multiple times with a needle would make my hospital admission so much more bearable. Alas, he agreed but my relief was short lived as he said he would have to consult the big guns at the Royal Brompton before he could formally agree to go ahead with a Hickman line. My heart sank as soon as he said that. I know the Brompton will never agree to it. I expressed this to him but he seemed not to be listening any more. Perhaps I'd filled his concentration quota for the day.

I find it all so hard. I seem to spend my week, every week, attending medical appointments. Never getting anywhere. Always fighting for what I need. Never getting it. It's pretty soul destroying. I hope if nothing else, he will at least send off the O2 request for he promised he would. He's been known on numerous occasions in the past to forget, or change his mind at the eleventh hour. My philosophy has become:

'If you don't get your hopes up too high, you don't have so far to fall when they let you down'.

Gastro Surgeons

Today I attended the dreaded gastro-surgical clinic appointment up in London. The last few times I've been have been nothing short of a nightmare. I've been pushed from pillar to post for years now as no one wants to take responsibility for performing my surgery. This is because they have so many concerns about maintaining my airway during it. This drives me nuts because its not like I don't spend loads of time going under emergency anaesthetic as it is. And (although granted I know emergency anaesthesia is life of death), they seem to be able to get a team together in quick time to sort me out then. Why will no one sort this out?

Bottom line is... I've had GERD for some years now. Which in itself isn't earth shattering stuff. But because I have the tendency to aspirate my stomach contents into my lungs - leading to pneumonia's and all sorts of nasties, I need this operation called Nissens Fundoplication. Its a procedure where they essentially create a tightening around the sphincter of the stomach so that it doesn't reflux the stomach contents up. In most 'healthy people' the sphincter does its job, unless you are a premature baby and its not developed yet, or elderly and its just lost its ability to contract. But due to lots of different reasons mine doesn't do the job it should and consequently I need the surgery - ASAP.

Today's appointment was very different. After being told my doctor had left (they forgot to tell me!?)  I had to start all over again with a new doctor. I wasn't too impressed and thought 'here we go again, may as well go home and not bother'. I had a bit of a wait in clinic but eventually was seen by a doctor who was truly the most capable doctor I've seen in this area. He was keen to listen to all my concerns and really apologetic for all the hassle they'd caused - though it really wasn't his fault. He spent ages making phone calls and made real commitments for things to be done to help my case. I felt strangely reassured. I usually don't hold out much hope for these guys because more often than not I'm let down by false promises. But he seemed really keen to make some progress with me. He is sending me for a bravo capsule examination. They've previously tried to send me for this but it has been cancelled at the last minute as yet again 'no one wants to be responsible for protecting my airway while they do the investigation. So a specialist theatre slot needs to be arranged and a different hospital. He has put the wheels into motion so lets hope things start to happen from here. The dude even gave me his email address and said if I didn't hear in 2 weeks then I should email him directly. How many doctors say that?!!?! If I can get this surgery to go ahead my life will be better by far. No reflux = no/very few, minor aspirations which means my lungs will be much happier :)