warning....moan alert!

[emsy]

It comes to something when its easier to see your consultant immunologist than your GP.

The all familiar chest infection has arrived :-( I took my sputum sample to the lab personally and called my GP for an appointment for some antibiotics as is recommended by my immunologist. GP (or rather receptionist) refused to even listen to me and the first opportunity I can even ring for an appointment is Tues morning for a possible slot the following week!!!! Called in at Immunology clinic and got seen by immunologist immediately, was given a course of antibotics and a spare course for next time :-)

So frustrated that no matter how often I explain my condition and how many letters my immunologist sends to my surgery stressing the importance of early treatment with antibiotics, they JUST DONT CARE!

.........and breathe........just needed to vent

[liz2mac]

Oh Emma, it makes me SO cross when these wretched people cant do the job they are paid for. As you say, its not as if they don't have the information they need. I have got to the point where I'm so tired of people's incompetence that I've decided to stop putting in official complaints. It won't last, so don't anyone out there sit back and relax, but I just wonder what we are supposed to do to finally make people sit up and listen.
I'm sorry you're feeling rough again, not easy when you've got two kids and are trying to work as well. Glad your Immunologist saw you though.
Best Wishes,
Liz

[mali42]

Hi Emma

I would make an appointment to see your DR and ask him/her about repeat presciptions for your antibiotics so you only have to phone the surgery when you need them so you always have a supply when the unexpected infections arrive.
Also ask the DR to put a note on your files to say you are priority when need seeing urgently and mention the receptionist about her not helping you and what should you do in future if the same situation occurs.

We don't need that extra stress when we are ill, Hope you feel better soon,

Malcolm

[gilliem]

Hi Emma. I'm sorry you're having such a rough time. I've nothing to add to Malcolm's reply except to say that what he suggests is quite common practice for people like us. I've always got a 10 day coures of Cipro in my medicine cupboard. All I have to do is 'phone my GP and leave a message to say that I'm starting it because.... If she doesn't think it's the appropriate antibiotic for what I've described, she 'phones me to tell me that there's a different prescription waiting to be picked up!
I'll admit, my GP is very, very good, but there's no reason i can think of why you shouldn't have a course of antibiotics in house.
Best wishes,
Gillie.

[emsy]

Yes I try to have a spare pack of antibiotics in just in case but tend to get from the immunologist but never seem to get round to replacing it once used. As it turns out, it looks like my GP did prescribe me some antibiotics that day, but the receptionist took in on herself to deny me them! Got a message the following day to say results were back and to keep using the antibiotics that GP gave me as they were fine for the infection.....erm, hello? Taking the ones from immuno by then anyway. Gonna go in on Tues to see if prescription is still there to be picked up so I have an extra spare pack.

To add to my bank holiday weekend trauma....child number 1 has now got tonsillitis and child number 2 has suspected rotovirus both v poorly :-(

[liz2mac]

OH Emma,
What a w/e yours is turning out to be, too poorly, no doubt crotchety children when you feel like poo yourself is not good. I'm so glad that your GP had done his job, I should tell him/her about the receptionist though, that was way out of line.
Hope things start to cheer up for you very soon.
Liz

[beckag87]

Hi Emma,

I too find that the secretaries are the main barriers to getting to see the GP/passing messages on/getting repeat prescriptions. The ones at my surgery have exactly the opposite attitude of the 'can do' one that I would expect but I stick with it because the GPs there are very good.

I hope that your children are ok - tonsillitis can be horrible - I used to get it a lot as a child. Most importantly I hope that you are being looked after. Thinking of you!

Becks

[emsy]

Now in hospital with baby Zach :-) paediatric HDU! Expected to be here at least 48hrs. I'm gonna have to do my infusion here this eve while hubby looks after a poorly Xander at home

[beckag87]

Poor baby Zach. Sending you both lots of love and well wishes x

[emsy]

Don't know why that is a smily face, was supposed to be a :-(

[emsy]

Are u still in hospital Becks? Hope all is well with you

[beckag87]

I'm still here - looks like I'll be here well into next week

[liz2mac]

Hi Emsy,
I'm so sorry for you all, its awful worrying about the little ones when they get so ill so quickly, then on top if it all you're not well either. I'm sending you all love and hugs,
Liz

[emsy]

Thanks Liz. I'm told Xander is much better and back to his normal self. Zach will be in hospital until Thurs at least. It has been hard work today as he has been unconsolably crying all day. I am taking this as a good sign as when we came in yesterday he could not cry. He was unresponsive, sunken eyes, very limp, severely dehydrated. He had gone into medical shock and his body had started to shut down. I think we nearly lost him. Doc kept saying "this isnt good, he is very poorly". They struggled to find a vein to rehydrate him and even drilled into his bone at one point to try and get fluid in.....that didn't work either. Finally they went in via a vein in his head. He's on 2 drips and a nasal feeding thingy now

[liz2mac]

Oh Emsy, you poor things. Is Zach your baby of 7 months? I can't begin to imagine the worry you've been through. Thank goodness he's coming up out of the worst of it to just being really ill. I'm guessing he's on nasogastric feeding? Are both the drips in his head, or did they manage to find a vein once he started to re-hydrate? Xander must be missing you both too, thank goodness he's recovered as well as he has. I do hope that you're getting some sleep, but I'm guessing you're just snatching cat naps here and there. The only control you have over how your body deals with all this whilst you're running an infectionas well, is to make sure you keep really well hydrated (hospitals are so dry), use as many cleansing gels as possible and eat as much fruit as you can to keep your vitamin levels up.
Please let us know how you all do.
Liz

[emsy]

Had a good night. Baby Zach seems much better and will be transferred to the ward today. Paediatrician wants to check his IG levels in view of my history but he has asked if I have any info on CVID. I thought it would be easier to direct her to some websites. Any suggestions tha would be useful for a paediatrician?

[john]

hi emsy,
glad things are looking a bit better for you all.
the best website i know is the american IDF site, and it's at

primaryimmune.org/

Take care - John

[slf]

Hi Emsy
Such a relief to hear some decent news from you,my thoughts were very much with you, I do hope that this is the sign of a long term improvement for you all.
Steve

[emsy]

Thank you everyone. We are on the ward now and it looks like we will be home tomorrow :-)

[liz2mac]

Hi Emsy,
I think your nearest paediatric centre is Newcastle. You need to be referred to Prof. Andrew Cant, a true gentleman who is very knowledgable. If your Dr's would like to talk to me I am very happy to do so, you've got my contact details I think? I am so relieved for you that things have taken a tuen for the better.
My layman's view of Zach's issues are as follows: (remember, layman, not medic!) Our babies have maternal antibodies until they are about three years old. In other words, what ever antibodies their Mother has, they have too. Now, if like me, you had not been diagnosed when you were pregnant and had very little in the way of antibodies, that's what your baby gets to have aas well. Until that is they begin to make their own. However, I strongly recommend that both your boys are seen by Prof Cant, if for no better reason (and it is an amazingly good reason) than having your mind put at rest. IF its of any comfort, my son was a very poorly baby (I wasn't diagnosed until he was nearly five) but he is a strapping 33 year old Daddy of two now. Glad you're back on the Ward. Thinking of you all.
Liz