Grrrrr..........Hospitals!

I don't usually post too many rants, with me being a mod and all that. But I'm fuming, and need a good vent, and this is the only place I can vent.

I have a CF team, and Psychiatric team, a neurology team, and a neurology homecare team.

The CF team, is my main source of everything, and is the grounding center. All my other team's organise thorugh them. My CF team consists of 2 consultants-1 has been there since the unit opened and is the one who helped open the unit. He deals wth lots of other clinics though, so I never ever see him. The other is a new consultant, joined team this year, he's mainly a CF consultant, this is the consultant I mention. Everything is authorized by him usually. Then we have the registrar doctor. He's been with us nearly 2 years, it was through him that things got done really. Consultant's don't have ears apparently, so it was my doctor who did all the listening and pushing. He sorted it out so any worry at all, I only had too ring CF unit, and they'd do the rest. This is because I was never sure which team to ring, so in the end I just never rang any, and decided too leave it, until I got bad. IMHO my doctor is the best person ever, and I think I'd be in a lot worse a situation if it wasn't for him. He's leaving in December, and am worried what's going too happen.

Last lot of IV antibiotics I had was at the end of October. The ones before that were August July and April. 

I am supposed too be having them every 3 months for 2 weeks at a time. 

April and July-2 week courses. I had to go in early due too a cough starting.  

August- Dragged in by the hospital, for the 4 days prior too my wedding.

October-Routine IV date, feeling icky and tired, had a weeks course.

When the 3 month routine was agreed, it was agreed with my doctor, nurses and dietician, it was towards the end of my July course. It was decided it was a good idea. I'd been stressing as I couldn't deal with letting people know I was ill. Been hiding my cough from Paul, put on a happy front whenever went upto hospital. I was getting really wound up, as I kept dropping hints all was not well, but noone was picking up on them. Eventually, my lung function dropped from 96% to 86% to 70%. IT was then I confronted my consultant, and had a big arguament with him, as he decided it was asthma not my CF that was causing my LF to drop. The same thing had happened the year before, when my LF dropped to 60%. It was a different doctor then, and he too had decided on asthma, until my LF dropped too 60%.

Anyway-after stating my case, it was agreed that if I did have asthma, it's only mild, and wouldn't have effected things so quickly. 3 monthly IV's agreed.

August comes along. I battle on for a couple of weeks, with occasional blue nails, and increasing tirdeness. I put it down too wedding stress. Came out in spots (these now seem to be definately infection related.) Again, thought they were most likely stress related. Also I was feeling run  down as my friend had just died, the day after going upto see her, and the funeral had been organised for a day before wedding. Hospital appointment-5 days before wedding. Doctor keeps telling me I need to go in for IV's. I wasn't at all happy about it, but as soon as Paul found out that's what was wanted. I had no choice. So I went in on the Monday,I was suposed too be stopping in all week, going too funeral Friday, then home for weekend, then back for another week Monday.

Friday comes round, consultant comes round early in the morning. Says it's ridiculous I'm on IV's, and that they should cut short the course, and tels me I shouldn't have asked for them (yes, even though it was pestering from doctor that put me on them). I readily agree, I didn't want the darn things anyway.

Get through everything-honeymoon 2 weeks later, not many worries.

By the end of September I was coughing loads again. Consultant tells me that my lung function was normal. By end of October when my IV's were due again, I was exhausted, almost throwing up with coughing fits. In quite a state really. Speak to doctor again, he agree's too carry on with routine IV's. Consultant doesn't agree, even though he hadn't seen me himself, but stay's quiet till end of 1st week.

End of 1st week-in enters the consultant. I'm starting too feel better, but still not eating right, still tired and still got a bit of a cough, although almost dry, not having anymore coughing fits, and no longer looking pale. He sends me home, saying that the way Iv's have been going I'm going too become resistant. He also says that now, the gap between my routine IV's is going to be 4 monthly instead. I pointed out that was ridiculous. But he ignored me.

So, now we're towards the end of November. about a week after stoping IV's, I began to feel ill again.

Consultant has wrote a letter too all my team's. Went to see my psychaitrist the other day, and she mentioned a bit about letter. Basically it says that my LF, which I can't get about 86% now, is normal. I had a bit of a fit at hearing this. Told my psychiatrist that was rubbish, told her what my LF was at start of year. How can he say it's normal. Obviously though it's nothing too do with her, but he's going to pass it on.

2 weeks ago, I had a virus, came out in spots again. Was really unwell with it, but perked up quickly after a couple of days. Since then, I've been feeling worse and worse. All last week was spent trying not too be sick, while coughing up loads. This is the worst I've actualy ever been with this cough.

I can't lay flat to sleep, and have too prop up on 5 pillows, before my lungs will even settle. This has been killing my back and neck. But been sleeping realy well. The trouble is in the day.

I have 18 steps upto my house, and they are tiring me out whenever I use them. So been trying too stay in.

I've been in toruble yesterday with my Physio, as I'm menat too do a 20 min walk every day, without crutches, and I can't manage it. She dragged me on a 20 minute walk yesterday. By half way, I could hardley breathe. By the full distance, I was close too falling over, and couldn't do anything at all for the rest of the day. She says she expects me to do that walk every day. But, the thought is seriously upsetting me. I don't want to be in that state everyday. I do chest physio in morning and at night. I don't want too be too tired too do my evening session, because obviously, right now, I definately need it.

Anyway, I've not told the hospital I've not been feeling well. I was waiting for my appointment on Monday. Last night a nurse called me, to cancel my appointment. She said there was only one doctor on, and they were only having emergancy patients in. And they were reorganising my appointment to 10th December.

I got off the phone, and just immediatly broke down crying. I just seriously think they see me as a number. They didn't even ask if it was ok if they cancelled apointment, just said they were doing. I asked them if I could just have my port flushed, without seeing a doc. As when they flush, they also take bloods, and if it was an infection, they will have spotted it in my inflammation levels. 10 minutes later Paul got in, and rang the unit for an explanation. I was still crying my eyes out, had set off cough, was trying my hardest not too throw up, while coughing, then I couldn't breathe, which set off tears even worse.

They agreed to see me on Monday.

I've had about enough with the agro. A week of IV's, is enough too stop infection from afecting me, but 2 weeks are needed too keep it down for a couple of months.

The way the hospital are going. IF I do become resistant too antibiotics, it's because of them. 

Along with all this, they are also going against what everyone else tells me, what the kids unit told me, and what my old doctor told me.

A lot of the arguaments are stemming from, I start too feel ill, before it effects me. My first symptom is I lack in energy. I don't feel sleepy though, I just feel drained of energy. I start too tire out on stairs. The next symptom is my appetite goes, I just no longer feel hungry, and after I week of this, I have too start foce-feeding everything.

These 2 signs, when I was at the children's hospital were generally enough for IV's too be started. Obviously coughing damages lungs, and infections harm them. They decided it was best to start them, before my LF got hit. When I got upto adult's there was a major disagreement about this. In some respects I agree. With just the little symptoms, it was decided oral antibiotics were a better start. This worked for a bit, but then it stopped. Even though I was having oral's, the symptom's got worse.

Now they will only treat an infection, when I'm coughing my head off, and weight starts too fall.

They say that my LF results play a significant part in deciding when I need IV's but I don't believe them. As I say, lost 10% lung function, and they have no decided too just class that number as normal, rather than trying too work out where it has gone.

I've been considering just moving unit's as soon as I learn too drive. I want too move to the best in the UK. Trouble is, it's at the other side of England.

I'm just so frustrated with it all. It would be fair enough, if I'd kept quiet about how much they wind me up. But I haven't, I've been vocal about my concern's. Noone seems too want too actually address them though. They're happier too just let me boil, than try too sort thngs out. That obviously makes me 1000 times more annoyed when they make the same mistake again, and again just ignore it.

I think a lot of it is a money problem, and more cuts too the NHS. But, To be hones,I don't think patients should be made too suffer, or even be aware of it. If I coulkd afford too go private-or if private wzs actually much better than the NHS. I'd do it.

Ok, whinge over-I needed that!

 

Carla, thankyou for letting me know about Kitt. I hadn't actually heard. I can imagine she is finding it tough. I have emailed her. Again, thankyou for letting me know x.

I still don't know what too do about the hospital, but I think I'm going to have to do some major kicking and screaming again to make them listen. It's annoying as I hate having to do it:(

Usualy I don't have to go to ER except in a real emergancy. The staff there have absolutely no CF knowledge, and are idiots really. We now have a card, with all numbers on for my consulatnts, CF team and chest ward. They never even bother too ask for advice, just try and go ahead and do things anyway.

The Cystc Fibrosis Trust, who basically controls all CF center in the UK, have set new guidelines for cross-infection.
Because of these new guidelines, I'm only actually allowed into the clinic on a Monday. All week I have struggled on, just waiting for Monday. It got me so wound up that they were taking that day away from me too, when I'm feeling ill.
The cross-infection guidelines make sense, but shouldn't be implemented on our unit, as there aren't the resourses to implement them safely.

My friend, is having the same problem with the unit and getting told the same things. Difference being his LF is usualy above 50% and it's dropped down to 20%. I think it is harder too deal with than normal, knowing that they are treating all patients the same irrespective of there lung function, and how they are feeling. It's like they are trying too treat all patients as if they are well or something. It actually makes no sense too me at all.

Depending on what is said tomorrow, I might phone the CF trust again, to report the unit, and what's going on. I've done it once before, a couple of years ago, and things improved, but it's just got really bad now. TBH, I think that the trust should know what's going on. I just hate phoning people.
It used to be that I could just post on there forum, and the trust would read it. The only trouble is-now the unit lso read the forums, so they know who wrote the complaint (I found this out the hard way.)

I only have time to write a quick reply. I really hope you feel better. My doctors pull stupid stunts like that alot.

Big Hugz!!!!

-Leah

Ok, so since my last post in this thread, I have been upto the hospital twice I think. Rather than start a new thread, I'm just using this one.
To make things easier, new consultant is 'M', old consultant is 'F'. M is taking time out of CF for a couple of weeks, so for a hile I'm going too be back too seeing F. The doctor who I previously mentioned has very sadley gone, we now have a new registrar doctor 'J'.

Ok, so went up for physio on Friday. Felt really really out of it, my physio thought I looked really poorly, which was ok, as that's exactly how I felt. F was the one who saw me this time, decided that it's actually depression not an infection. I argued that that was ridiculous (I may have already wrote this somewhere else hmmmm....). F started reading out some parts of my notes about admissions and such, that M had written. Not much of it was true, which I got really upset about.

M had wrote in my notes, that each of my previous hospital admissions, were at my request, which is just stupid. The second lot I demanded, ok as I wasn't at my best, it was my routine lot, and I didn't want too leave it until I got too poorley again. M had cut that course short too 1 week rather than 2, as he decided it was my depression getting in the way not infection. Well, at least this is what he wrote in my notes. His reasoning too me at the time, was too stop the course because my CPK levels had risen too 2000. There is NO note of this in my notes.

Anyway F actually listened too me, went through everything with me, what I thought was absolute rubbish and why. Why I thought IV's might be needed, why I didn't want them, What the next step should be, where my depression comes into it.
Now just recently I've been flying quite high for me, I've been relatively happy and content with life. Unfortunately because of the crap that M wrote, F is unsure what are signs of infection, and whether too treat me or not.
F did some blood tests, which should have been done ages ago, but for some reason weren't. They will check for inflamation, and show whether it is an actual full blown infection or not. I no longer have too see M, if I don't want too, and can request F, although may have too wait longer for appointments.


On Sunday I started with REALLY bad stomach ache, didn't eat much, until tea time, when I forced down a small roast dinner. By Monday morning, I was in agony, had gone a very peculier colour. I'd never been in this much pain before. So, booked into see my GP, as I didn't think it was CF related.
My GP was really nice, noticed the pain was coming in spasms, so presribed me some Mebeverine(sp?) It's an IBS medication. I couldn't have it with food, as I felt too sick, so had milk instead.
After some Paracetamol and Nefopam, the pain went away enough too sleep. At 2am, I woke up sweating, and in agony. I got Paul to get me more paracetamol and some water. Less than a minute after taking them, I threw up absolutely everywhere. I thought the pain would have gone after that-apparently not. I slept for the rest of the night on the sofa. 8:30am on the dot, I rang the CF unit-perhaps it was CF related after all. They got me a taxi, and by 11 I was there. They sent me straight for an x-ray. Looking at the x-ray, I could see exactly why certain places hurt more when I pressed. Both my small and large bowel were stuffed full, and it went all way up under my rib cage. (gross yes, sorry...........)
I was asked which med I wanted-Gastrografin or Movicol. I asked for Lactulose. It is by far the easiest for me too drink. The other 2 just make me hurl when drunk, and I'm not quite ready to have my first ever NG tube put down just yet.

35mls in first dose, just because there was so much too shift. 2 hours later another 20mls, 2 hour's after that another 20ml's and finaly things started moving.
I've had 40ml's in total today, and still have belly ache, although, nowhere near as bad.
My sputum, to just add insult really, has now changed colour, and the bottom of my lungs hurt..............Kind of like when youlay in a bad position for so long, it's that kind of achey hurt. The colour is now dark green rather than light green. I'm no longer on any antibiotics but fluclox, so don't know what too do. I'm sick of going too the hospital about it, and getting told there's no problem, so instead am going too wait till Friday, and see what my physio says about it, and see if she notices the change in my breathing.

I'm starting too wonder if my belly problems are some how related too chest problems, it's just so strange that the pain didn't start until Sunday morning, I'd had no problems until then.

I now know for sure however that any problem like this, is not too be treated by my GP.

I think I'm going too keep this thread updated on hospital apointments for a while. I'm finding it helpful too see what hapened at previous appointments, and compare it too what happened at my most recent. Especially when I can't trust the consultant's note keeping.

I have soooo many appontments already set for January, on the 2nd, 7th and 16th, Neurology, CF unit and Psychiatrist.
No January sales shopping for me:P
I'm sooo loosing track of everything right now. So many appointments and doctor's saying so many things. Only one more physio session before Christmas though, and that's this Friday, then I get a 2 week rest period.
Sleeping on the sofa again tonight, sweet dreams everyone x

Gem,

I'm just checking in to see how you are doing?  You're not still wrapping presents, are you?  Well, since Christmas Day isn't officially over yet, I wanted to wish you a Merry Christmas and a Happy New Year.

Big Holiday Hugs!

Carla

Arghhhh......... Sorry really needed that scream.........

So, the doctors have changed there minds again! Last week, they didn't want too put me on IV's, because they thought it was depression not infection causing me too feel ill.
This week, they're back too saying they don't want too put me on them, because of my muscles. And becauyse they might make my enzyme levels rise again.

My lung function is now at 79%. So it's dropping, and noticing the pattern, by next week, I'll probably be down in the 60's.
They wanted too just leave me on oral Augementin and Ciprofloxacin and Flucloxacillin, and see how I go. But, I went a bit mad, and told them I didn't want my lung function dropping any lower.
In April my Lungfunction was at 94%, then it suddenly dropped too 84%, and I haven't managed too get back upto 90% since. What if they let my lung function drop too 66% again, and then I don't manage too get it back up any higher than that. That would be my chances of ever having a kid totally blown out of the water.

Anyway, they decided too add in some nebulised Tobi. I'm not utterly thrilled at this, as it rips my throat to shreads, and makes it so I can't talk. But it's the closest I'm getting too IV's at the minute. Afetr my going mad aswell, they have agreed too start IV's after I see my neurologist next week, as long as he's happy with that.

It annoys me so much, that I have too fight with them so much. If I didn't then my Lung function would just keep dropping, and they'd ignore it. And, I'd just go on and on and on feeling ill, without treatment. I'm getting sooooooooo fed up of this constant battle.

Mind you, as long as they stick too there promise, I can stop the nebs next week so then I will be able too talk again, and start on IV's, and then start too feel better again.

I'm almost calm again now, lol!

Gem,

Just checking in on you.  Are you in the hospital?

Hugs!

Carla