An update and a question

[floopyjim]

In the interest in keeping this forum going and because I have a question, I thought I would keep you all updated! 

First of all - how is everyone?  Hope you are all keeping well.

I have just had (well, two weeks ago) a major bit of surgery on my spine - one of the discs basically exploded so they had to remove it and fuse the vertebrae.  I'm still in the initial stages of healing but getting better every day.  Amazingly, I didn't get an infection! 

My infusions are going well, the painkillers I am on at the moment make for a very sensation free infusion and I haven't had a chest infection for a year now!

Now to the question - I have been using this forum ever since I got diagnosed and there was the prospect of SCIG.  The people on this forum - particularly the Mods and Admins have been really supportive.  I was wondering if you would mind if I ask my specialist nurse if she could recommend this forum to the people who attend the PID clinics and wards?

Cheers,

James.

[john]

hi James,
I'm really happy to hear that things are going well for you at last.....you waited a long time!
Please recommend us to your nurse and anyone else who has or is involved with this rare and life controlling condition...we need more people to get involved with helping others up here and less who simply join for whatever reason and we never hear from them again!
My own news....I recently started having high fevers and terrible shuddering shakes after my infusions and ended up spending two and a half weeks in hospital on endless drips, a blood transfusion and IV antibiotics three times a day. It cleared up the fever (touch wood) and the consensus was that I had had a mystery blood infection that was fighting the new antibodies in my infusions and giving me a hard time!!
Upside was a private room and en suite on the thirteenth floor, with views of the whole of London!! Always tell he hospital that you have a compromised immune system and that to share rooms and loos with other sick people is a definite "No No"!
Lovely to hear from you James - John

[glowing]

Hi James and John,
I've been wondering how everyone is as none of us have been posting, usually a bad sign health wise. I'm pleased for you James that you received the operation you needed but sorry that you had to suffer so much pain. So sorry for you too John, you really go through some bad times. I hope you're recovering well. Aren't we lucky to receive help from modern medicine.

Take care, both of you and hope you keep getting stronger.

Glo

[floopyjim]

Thanks John and Glo - sorry to hear you were not well John - I too have mystery illnesses that make me feel pretty awful, I end up in hospital but confuse the consultants as I tend to not have a temperature and blood tests show very few problems. I guess it's one of the features of CVID.

I wish when I am ill that the hospitals do listen to me and put me into a room by myself; hasn't happened with the NHS yet though!

The operation on my spine was done privately using my health insurance so I got the equivalent of a 5 star stay in hospital with amazing food. Didn't want to eat any though. Instead of the usual standard of filling the space where the disc was with bone and using a metal plate to fix the vertebrae, the surgeon used a block made from something called PEEK that my bone will grow though - the result is no collar and almost full movement of my neck and head one day after surgery. Apparently the private hospital have access to some pretty cutting edge (excuse the pun) technology that the NHS have yet to adopt - TVs that show Sky without having to pay £10 a day is one example!

I have read that CVID can affect joints, I wonder if it was a contributing factor to my disc breaking down?

Anyway, Hope you all keep well, I'm off for an alcohol free beer...

James.

[gillie]

Hello everybody.I like the idea of an update all round.
I'm still doing really well after my 9 months in hospital. There's no sign of the Burkitt's lymphoma. I'm well, still taking lots of medication, but I reckon that that's not too high a price to pay for being as well and active as I am. I still have an infusion every 2 weeks, no sign of chest infection and my in-house 10 day antibiotic probably needs to be slung out. I haven't checked the use-by date recently!
John, I'm really sorry to learn that you've been having such a horrible time, but I'm relieved that you're able to post that things are improving. Tell Sue that I've gone for bust with my home-grown stuff this year. I have a fruit cage, rows of onions, potatoes in bags and a wigwam of rummer beans. I forgot the sprouts. I really like sprouts.I'm growing lots more, but I won't bore you with the list.
James, My husband would have loved to hear about your spinal surgery.Tommy's spine was a mess. It sounds as though there's a chance it might have been helped a lot by modern methods. I hope that you continue to recover well.
Best wishes to all,
Gillie.

[s162216]

Hi Jim (floopyjim)

Great that you've managed to remain infection free and that you've had your spine operation successfully; it's always good when you can have the latest and best.

Hi john,

Sorry to hear that you've been unwell and have had a problem after your infusions, hopefully it won't happen again

Hi glowing,

Great to hear from you and hope you're doing good!

Hi gillie,

Great that you're still doing well, there's no sign of the Burkitt's and you've had no chest infections.

To everybody here though, sorry I've not really done much lately as my research in the lab, the analysis etc is taking a lot of my time up and I'll admitg I've become a bit disillusioned that despite my best efforts I can't get the activity level to go up. Perhaps I should start doing the whole emails, Facebook, Twitter etc actively again and see if they work better this time. The problem is that they cause a lot of sign ups, but little actual postings from these new sign ups.

I'm doing well, apart from a minor soft tissue infection from my insulin pump site a few months ago I've not had any infections since last October. For some reason though my lymphocyte count had been acting a bit strange for the past few months, with it seeming to go from being normal to crashing down to way below normal. I've not noticed anything myself, but they're taking my blood every week to get a count for 6 weeks to see what's happening (amazingly it's actually easier for me to just get on the train for 15 minutes to Gartnavel General where I have my infusion to get my blood taken than get it done at my GP - you practically have to go on a waiting list to get an appointment so there's a fat chance of me getting it taken on the same day for 4 weeks, plus I have work in the lab that I can't just drop to go and have my blood taken!)

Sam.

[gillie]

Wow,Sam!! You're coping with a basinful, aren't you? Good to hear from you now. There seems to be so little action on here that I admit I don't come here anything like as often as I used to on the PiA site, where we had so many overseas people in the same states as us that it was vibrant and interesting all the time. I miss that so much. Never mind. All the best,
Gillie.

[mothergoose]

Hi I am still here I check fairly frequently for new posts. I am on my phone so can't write much I will get back on soon and give an update

Glad to see people are still around

[prickles]

Hi All

Glad to hear all the updates, hope things keep going in the upward direction for everyone. I try and look on here a couple of times a week but have had problems with our internet. We moved back into our house 18 months ago after the flooding of 2014 and still have things to sort. Caitlin has been really well after near death and being to ill in May 2014 she's only been in hospital twice since then for drainage of 2 abscess.

When these last 2 abscess appeared, she took the drastic decision to shave all her hair off! This has made a huge difference to the infections as she can now attempt to keep on top of them and stop them spreading to the rest of her body. She has had lots of hospital appointments and now wears braces on her legs to stop her hyper extending her knees. She sees the cardiology team as there is a possibility she has POTS, also under investigation is EDS.

Keep well everyone, I am off to feed our puppy.

Sue

[twinmom]

Hi All

I'm new here and I'm mentioning a couple other posts I just did my third infusion last week I do subQ, 6 sites, every other week.

One reason I am posting is my back, too, is a mess. I was an elite gymnast (elite was the term they used back in those days for the level one competed at - equivalent to level 10 now) then a dancer up through my late 30s. After the birth of twins I blew out my lower back (L4&L5) and now my middle & upper back is crumbling. I have major joint pain but all of a sudden after the third infusion my back pain is the worst it's been for years and my fatigue is relentless.

Did anyone notice severe back pain once they started the IgG? I'm waiting for the IgG to make me feel better although I hear it won't always have that effect. I'm rather curious why my doctor didn't put me on antibiotics in the beginning is this unusual? I had a severe lung infection that went on for about six months prior to this dx.

[twinmom]

Oops. I just saw something about mentioning other posts in my post above Pls just ignore that I should've read over it before I posted.