A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Monday, 1 December 2008

Nothing new

In the past week I have had three hospital appointments, a trip to the walk-in centre, and I have a doctor's appointment this afternoon. Each appointment has been one of disappointment.

Last Tuesday I went to see the psychiatrist, which was the least disappointing/traumatic of my medical visits. Dr G is okay, but he often has his own agenda, which isn't actually all that great for a psychiatrist, and the result of this is that I have to try to cram in what I want to say whenever I get a chance. A lot of what I wanted to say last week, and on many of my recent appointments with Dr G, has been related to my asthma and more specifically my most recent admission. The problem is that Dr G doesn't seem to know what to say to me about any of this, and to be honest I don't expect him to say anything, just listen, which as I've already said he's not that great at. He wants to help. He wants to say something that'll make me feel better. He wants to be able to do something. He offers me medication, but there is no point in taking more antidepressants largely because I'm not depressed. Yes I've been stressed and been a bit traumatised, but I'm not depressed. He agrees and I don't take a prescription. There is nothing Dr G can do or say. The appointment finishes and I go home.

On Friday I had an appointment with the opthalmologist and optician at one of the hospitals. This is in part to check my coloured contact lens that artificially contracts my left pupil as it doesn't do it on its own. I have a condition in my left eye called Holmes Adies Pupil which, amongst other things, means that the pupil doesn't contract so I get dazzled by light, which can be uncomfortable. I know that there's nothing that can be done for this, and it's not life threatening in any way. In fact all the literature says that it is of little consequence, but this is a medical view when in reality the discomfort of bright light isn't nice and the fact that the lens in my eye doesn't accommodate is frustrating, because it interferes with my vision. My left eye doesn't focus well so things are often very blurred in that eye. Over time my brain got somewhat used to this and my right eye compensates to some extent. However, my vision is further compromised by cataracts that began to develop a couple of years ago. They're only small at the moment, but they're right in the centre of the lenses in my eyes, and the one in my right eye is bigger than the one in the left. I've written before about the prospects of this for me, but to say again, the opthalmologist is extremely reluctant to operate at any time to remove the cataracts because of my lungs. Most cataracts are removed under local anaesthetic, but apparently there's still a risk that a local anaesthetic would affect my lungs, so the consequence is that they won't do anything and I have the prospect of blindness ahead of me unless I can convince me asthma consultant to speak to the opthalmologist and convince her to remove the cataracts eventually.

Now on Friday afternoon I went to the local walk-in centre for the very silly thing of an infected toe. I hadn't planned on going there and was going to see if I could just sort things out by regularly soaking my foot in hot, salty water, but as Friday progressed my whole toe started to ache so I thought I'd better get it seen to, especially as I'm MRSA positive. So I went to the walk-in/hobble-in centre and sure enough was told that it's infected and I needed antibiotics, but as I'm on methotrexate the nurse practitioners who run the centre aren't licenced to prescribe antibiotics for me. I came away with a toe dressing, the phone number of the urgent doctors service in case it got worse over the weekend, the suggestion that I see my own GP on Monday and the news that there's nothing the walk-in centre can do for me. Oh great.

This morning I have been to see my asthma consultant, which is always the same - a chat, a check to see that things aren't deteriorating (too much) and confirmation that nothing can be done to help. Today was harder to take than previous appointments with Dr H though as he's decided to take me off methotrexate. There are some serious potential side-effects, such as lung fibrosis, liver failure and kidney failure. Thankfully I haven't suffered any of these so far, but the risk is on-going, my consultant has been concerned about the potential of them, and he has now decided that the risks aren't out-weighed by the limited benefit I was getting from the drug. It's not altogether unexpected, but I have been so upset today. I was put on methotrexate as a last hope of anything helping and now that hope has been taken from me. There is nothing else left to try, and again Dr H has said that we have to wait for science to catch up with my disease and try to hope that I live that long. You know you've hit a brick wall when all the consultant can offer is a prescription of hope, but at the same time removes the medication that supplied the hope.

4 comments:

B said...

You have so much to cope with, but meeting you you'd never suspect you have so much going on in the background.

Can't you change psychiatrists, though? Dr G doesn't sound good at all.

Take care. I'll keep hoping there is a medical breakthrough soon.

living_with_ba said...

I am at the same stage as you as far as treatment goes, they gave me some "hope" with two weekly IV therapy and that worked until I was kicked off the ward for being MRSA + and now no one will take me so we're trying to hold off attacks with six weekly admissions for two days, but there are no beds so I can't get my treatment that way either...seems cruel to offer hope and then take it away again, but if it wasn't worth the risk than it's better not to be on it, right?

Stay strong honey, I'm here if you need me!

ginge said...

HI, sorry to hear about naff doctors. they stopped Jess' metho last months and she's fighting the health authority to have it re-instated as again this was her last hope of some semblance of normality and being able to keep active for her 7year old.

All totally, shit,

Stay positive and we all love you so shout if you want company,G x

BeckyG said...

Thank you all for your comments. I'm still finding it difficult to give up on the idea of the methotrexate even though I don't have any choice now, but I'm getting my head around it slowly ... I guess. I'm still upset, but perhaps slowly accepting it ... maybe ...

B, unfortunately I can't change psychiatrists, because they're allocated depending on what GP practice you're registered with. Dr G is nice enough, it's just that giving you time to talk isn't his forte, which isn't the best thing to be lacking in if you're a pdoc, in my opinion. I think the problem is that he wants to be able to help, but knows that he can't change the asthma situation so feels helpless. He's used to dealing with people with psychosis etc, which he knows he can help with medication. My situation challenges him in different ways, and ways that he can't do anything to change. In some respects I feel for him with this, but it's also not terribly helpful to me. Oh well, such is life ... or so it seems.

Joey, is the IV treatment you're getting/supposed to be getting aminophylline? Do you take aminophylline or theophylline tablets anyway? I do, but get amino IV when I'm in crisis as it's the only thing they can give that works for me (I'm allergic to the sulphate component of magnesium sulphate). I was really surprised to read that they 'kicked you off the ward for being MRSA+'. I'm also MRSA+ and have been for a long time, but all it means is that I get a room on my own and they all have to put on their plastic armour of gloves and aprons before they come in. Very weird that you should be refused admittance because of your MRSA status ... I'm slightly confused by it actually ... anyway, I hope they sort it out and you get the treatment you're supposed to be getting.

Ginge, I'm really sorry to hear that Jess is going through the same thing with her methotrexate. It feels almost like a bereavement to have your last hope taken away, and imagine it must be especially bad because of her daughter. Give her my love when you next speak to her, and I hope that she's successful in her bid to have the methotrexate reinstated. It'd be great to catch up with you again, so perhaps we can get together sometime when I'm back from Edinburgh :o)

Becky.