Horrible day

[beckag87]

Hi all,

I apologise now for my little rant...

Today (well yesterday now, Thursday), I was supposed to go back into the Wellington Hospital for my 2nd infusion. As of 10pm last night, one of the secretaries still hadn't confirmed the time of the infusion. I woke up this morning on edge as both myself and my mother had taken the day off work and arranged to be back at home in order to pick my little brother up from school and take him to his after school activities etc.

At 11am there were still no timings and as I am currently staying with my parents, it takes 1.5 hours to get there. Soon after that, my immunologist called to say that he had arranged a bed for 3pm. As the infusions would take 6 hours, all of our plans were now completely out of kilter.

At 3am, we walked through the doors. The room was lovely, overlooking Lords. However, the nurse came in and said I had to go through the whole admissions process. 2 hours later, no infusion. My immunologist had to travel across London to sort it out and sign forms before they would start the infusion.

Once it was sorted we then went through the arduous process of trying to find a vein. 3 attempts later we found one and kicked off the IVIG, only for the line to fall out an hour later (it was precariously balancing in a tiny vein in my knuckle). I eventually walked through the front door at almost midnight.

What a day. I feel better now for sharing all of that. Hopefully I will wake up tomorrow to something better!

[gilliem]

I think you picked a good title for your thread! I'm so sorry had such a nasty experience. Communication between medical staff seems to vary a lot from region to region, but I bet yours' could've done better than they did.
Best wishes,
Gillie.

[glowing]

Oh poor you. Hope you are feeling very much better today.
Glowing

[s162216]

Hi,

This reminds me a little bit of when I have to go to Addenbrookes in Cambridge when I have university holidays, you have to book a time which usually ends up being half an hour later as no chairs are available, most of the staff have little idea of what their actually giving me (and once tried to give it to me whilst it was still cold which was very painful and it specifically says not to in the product literature so I ended up having to wait for an hour for it to warm up) and they insist on flushing the line with saline at the end (which actually overdoses me as its rounded up to factor for whats left in the tubing and bottle and dilutes the IVIG, technically DW5 should be used)
Why couldn't everywhere just use the simple system that the QMC operates: infusions happen every Wednesday at 0830 in a small little room with 6 chairs and 3 more in another connected room and is run by 3 specialist nurses who know what their doing, they know us and we know them, so it works great. Plus you get the same people every Wednesday generally so you get to know them well.

I'm sorry that you had such as bad experience, hopefully it'll go better next time.

Sam

[liz2mac]

Hi Becks, how are you doing? We haven't heard from you in a while and I'm thinking of you.
Liz

[beckag87]

I'm here! Just had a long few weeks and a few funerals to attend. Am exhausted and for some reason am struggling to sleep again. It may be because the weather is a bit warmer! How are you all? x

[liz2mac]

Hi Becka,
Welcome back, I've missed you. I think most of us must be reasonably well, as the forum has been quiet! I'm trying very hard NOT to get excited and not to put the mockers on things, BUT, since I had my parathyroid out at the beginning of April I've been really well CVID wise. No infections, clear chest, what is more my energy levels are SO good in comparison to what they were. No more heartburn, less aching limbs and no more itching of my arms...........have I just put the mockers on? Lol
Liz

[emsy]

I know what you mean Liz. My hubby has been really poorly with bronchitis for the past 3 weeks, child #1 has had cough and cold for about 2 weeks and child #2 also full of cold, cough and conjunctivitis. Me?......Never felt better! I've been inwardly celebrating......until yesterday. Last day at work before a weeks annual leave and the cough & sore throat starts :-( typical. Hope the ig's do their job and fight this one off. I don't want to get like the hubby, he is really suffering.

[liz2mac]

Oh Emsy, how typical is that! Have you tried the Neilmed sinus wash system? It's very basic in so much as you literally wash out your nose and sinuses with a formulation of salts. A lot of us have found it helpful both for battling infections and for getting the allergens that cause hayfever out of our noses. God luck, we're all thinking of you!
Liz