The NHS Chronicles

Welcome to another instalment of the NHS Chronicles!

This bought of my illness is all happening right now, so it’s fresh in my mind. Of course, that should mean everything will be a lot more detailed and comprehensive, only I don’t have a particularly good memory for anything other than random animal facts, but we’ll give it a go.

Exactly the same as before I had sickness and diarrhoea, and my appetite plummeted. It certainly hasn’t been as bad as last time, as I never completely went off my food, but more just cut down my intake by about half of what I usually eat. It’s a considerable difference that’s for sure, and I have lost around a stone, but the weight isn’t coming off any further, in fact I am pretty sure I’ve starting gaining weight again… Actually, that’s a lie, a nurse just weighed me and I'm staying around the same weight.

On the 12^th of June, I had a prearranged (by email) appointment with my Immunologist at the Brompton Hospital.

My immunologist is a big part of my life now. Shortly after I’d been weaned off the steroids, several months after I was discharged from Hammersmith Hospital five years ago, my Haematologist referred me to the Brompton, and by extension my current Immunologist. 

He’s a brilliant man, crazy intelligent. I’ve asked his assistant before if he ever stops working, and she basically said that he goes on holiday on occasion, but no, not really, he never stops. One of these days I’m sure he will crash and burn, but not now. Not now.

After I’d stopped the steroids and was taken under his wing, I underwent some more blood tests (big surprise, eh?) and was told I have something called Common Variable Immunodeficiency (CVID).

There are five types of antibodies, otherwise known as immunoglobulins. A, D, E, G and M. If you have CVID, all of these levels are low, and I’m sure you can understand by now that that means my body will always struggle to fight off infections. This condition is something that I’ve probably always had, but it’s very rare, only around 1 in 50,000 people are diagnosed, and very little is known about where it comes from. It’s theorised to be to be genetic, but they aren’t 100%.

I used to get a lot of chest infections. I’d get a cold, that would develop into a cough, and then suddenly I’d be 90% phlegm. It got to a point where I was such a frequent visitor to my local GP, that they wouldn’t even listen to my chest anymore, they’d just nod and prescribe me the antibiotics. The antibiotics were always given to me in high doses, usually two tablets, four times a day, and they would take a while to kick in. The chest infection would go away, and within a few weeks to a couple months I’d be back for more.

My Immunologist did not like this. Too many chest infections and you can get all sorts of lung issues. He wanted me to start a treatment. The treatment that I would be on for the rest my life. I didn’t want to start it, because once I’d started it, I could never stop, my body would be too reliant.

This was 2015, and he essentially gave me an ultimatum. He would give me a back-up supply of antibiotics for me to take to Florida on holiday, and then when I came home, if my immunoglobulin levels hadn’t increased, we would start the treatment. I agreed, but in hindsight realise that he must have known the levels wouldn’t go up. Sneaky man. At one point, he even made me have tetanus and pneumonia vaccines to see if my antibody levels for those would rise, and I was ill for two weeks. Needless to say, my antibody levels didn’t go up.

Finally, it was time to go on a much needed holiday. Florida, we were coming to get you.

I felt like it was going to be my chance to have fun, not worry about my illness and just relax, but no… a chest infection snaked its’ way into my system and for my entire holiday I was ill. I tried my hardest to ignore it and push through, but I barely slept those two weeks, and when we came home I decided to start the treatment.

The treatment is called IVIG or SCIG. It depends on how it’s administered. As previously stated, in “I’m Where All The NHS Funding Goes”, my veins are awful, so IVIG was ruled out, as that would need to be done through a vein. SCIG stands for Subcutaneous Immunoglobulin, which meant I could do it from home and straight into my tummy fat, which I had much more of after the months of binge eating on steroids. Not to mention the binge eating after I’d stopped steroids. Hey, I like my food. Apparently, you can also insert the needle into your thigh, but I haven’t plucked up the courage to do that yet.

Essentially, the treatment involves drawing up immunoglobulins into a syringe, attaching it to a pump, and inserting it, via butterfly needle, into your stomach or thigh. Once a week for the rest of my life. It usually takes around two and a half hours to prep everything, and for the antibodies to pump into my body, so not too long, but it is a bit of a hassle. It is better than travelling up to London once a month for the rest of my life to do it via IV though.

Anyway, back to the appointment on the 12^th.

My immunologist was immediately concerned with the recurrence of sickness/ diarrhoea, but also with the fact that my energy levels had plummeted and that I wasn’t eating in my usual way.

I had a blood test, and he emailed me later on in the day to say that my white blood cells had dropped and he wanted me to get a blood test with my GP as soon as possible to check the other levels.

Well, as you can expect, I wasn’t able to get a blood test with my GP until the 28^th, at 9.20am. In those two weeks and two days my health didn’t get any better, but it did get worse. Whoop. I was eating a little less than two weeks previously, and I was breathless constantly. I was signed off work for a week during that time, and decided to hand my notice in.

The day before my GP blood test, I emailed my iImunologist and told him just how much more awful I was feeling. A few hours later he gave me a call, was appalled to hear that I hadn’t had my blood test yet, and he contacted my GP. He arranged to have the results of my test the following day fast tracked to the lab.

And when I say fast tracked, I mean fast tracked. It’s the quickest blood test result I’ve ever had.

At 9.19am I was called into the phlebotomist, and by 9.20 I was back out in the carpark and headed home. At 3pm I got a phone call from the GP, and they said that my levels had dropped even further. And this time guys, I have the figures! Exciting, right?

Haemoglobin – 65.

White Blood Cells – 0.8.

Platelets – 107.

Neutrophils – 0.1.

Now, I’m sure this will mean nothing to you, and it doesn’t really mean all that much to me, but from what I understand, they like Haemoglobins to be in the hundreds. WBCs should be between 4.0 and 11.0, and Neutrophils should be between 2.0 and 7.5. Platelets should also be higher, but they haven’t been concerned about the level they are now, so that’s a bonus. I had a platelet transfusion 5 years ago, and it looks like a bag of chicken stock. Chicken stock has a time and a place, and it is not being pumped into my veins.

That day, the 28^th, the GP gave me a letter and sent me to Pembury. What a waste of time. Mum very kindly picked me up and drove me there, my sister in tow. It was about an hour before we saw a triage nurse, and she was dumbfounded about CVID, because no one has ever heard of it, and so she pretty much immediately took us to an A&E holding room.

These rooms are about 8ft square. We walked in to find no bed, and one chair. I claimed the chair, mum stood, and my sister decided to sit on the disgusting floor.

The triage nurse said she was going to get a trolley, and she disappeared. Another nurse showed up with the trolley a little while later and asked us if she’d gone to x-ray. We said she said she went to get a trolley, and the nurse nodded and disappeared too. It’s quite incredible actually, this ability these nurses have; I wish I could vanish into thin air.

It was during this time that a woman down the hall pressed her buzzer for help. She only had one leg and needed assistance in walking down the corridor to the toilet. Naturally, no one answered. Eventually the lady’s family came back with a wheelchair to help her, and that’s when all the nurses showed up.

By this point, a cot had been brought in to my room and my mother had managed to get hold of a second chair, so we all had seats now. The second nurse had come back and told us off because apparently, we had told her that I had gone for x-rays. My mother argued the toss and told her that that’s what she had said, but the nurse wasn’t having any of it. She then proceeded to try and cannulate me, but couldn’t, and a new nurse was called in. He managed to insert a cannula in my wrist within about a minute. Good job.

This is me at Pembury in the A&E holding room. As you can see, I’m pretty pale looking (though I’m usually pale), but also pasty.

I look sick, right?

We saw the doctor, and then at 11pm that night I was taken to a side room in a gynaecology ward. I guess it was the only bed they had available. Almost 7 hours we were waiting for that room; it’s a long time, but it isn’t the longest time I’ve had to wait in A&E.

It was definitely a waste of everyone’s time though, because the next day I was transferred to Maidstone. I don’t know exactly what Pembury does, but it isn’t much.

I was taken to the wrong ward. We all thought it was the right ward, there was a room available. The paramedics left; and I was told that I needed to be in another place, but the bed wouldn’t be ready for another hour.

At 10.30pm a porter collected me, and I was speedily driven to Lord North! My old friend!

As I was being pushed to the other ward we encountered another patient in a wheelchair. She was in hysterics, talking to a nurse about how someone else had said they were going to gank someone. The nurse told her that didn’t mean she needed to act the same way, to which the hysterical patient wailed “but she thinks she’s better than everyone else”! I have no idea what was going on there, I just averted my eyes and hoped they weren’t from Lord North.

The next day was Friday, so it would be my chance to talk to the doctors about what was going on. Hospitals have doctors over the weekend, of course they do, but they’re on-call doctors and they don’t have individual cases to work on, they’re simply there to monitor patients and control situations.

And to my surprise, when the doctors visited, who should walk in, but Bow tie consultant! And he remembered me too. We had a good old conversation, where he actually listened to me (character development). He told me that they were hoping to transfer me to Hammersmith as soon as possible, a fact I already knew because my Haematologist had emailed me, but they didn’t have any beds.

They also wanted to check my bone marrow again, like last time, because while they were pretty sure it was the same thing going on, they needed to double check. They said if I was in Hammersmith by Monday, then Hammersmith would do the biopsy, otherwise it would be done at Maidstone.

Why on earth they couldn’t have just done it at Maidstone to begin with, I don’t bloody well know! This would just mean that the progress we could have made in those four days was out the window.

I had a few units of blood transfused into me over the weekend, and regular blood tests to monitor the levels, but other than that nothing happened. My temperature kept rocketing too, so they gave me lots of paracetamol and IV antibiotics to treat a possible infection. None of it had any lasting effect.

And of course, when Monday rolled around, there were no beds at Hammersmith. Maidstone actually started to care for me then. They arranged an ultrasound for my splenomegaly (enlarged spleen), and the bone marrow sample to be taken. Both on the Monday. Finally, something was being done!

The bone marrow sample revealed the same as five years ago pretty much, that my cells were growing to a certain point and then engulfing each other. Actually, that should all be in the present tense.

Cue the steroids!

On the Tuesday, I was given one dose of IV Prednisolone. It took about 40 minutes to infuse into my system.

On the Wednesday, I was sent home.

I really shouldn’t have been sent home; I should have insisted that I stay, but I wanted to get back to my own bed. Season 3 of Leftovers had just started, and I desperately wanted to watch it!

Besides, I was in the process of arranging an appointment with my Immunologist on the Thursday, and I trust his judgement a hell of a lot more than any of the consultants at Maidstone. What he wanted to do was start me on a different medication, which essentially does the same as the steroids and suppresses your immune system, in a less aggressive way. The problem here being that it needs to be privately funded and Maidstone wouldn’t be able to get it. I was hoping that it could all be done as an outpatient. Oh, how wrong I was!

That afternoon my aunt very kindly picked me up from the hospital and drove me home. Thank you,

Sue.

That evening my breathlessness returned. I blame the stairs. And the lack of blood, but whatever.

I was still determined that I would make it up to London the next day though. As you can probably
predict, I didn’t.

Maidstone was contacted the next day, and a doctor told me that I would need to

be readmitted, and have a few more units of blood. The blood transfusions were going to take a while to come through, so she would give me a call to let me know when they were ready. Well, the call came, Mum drove me to Maidstone, and naturally, the bloods weren’t ready.

After a few hours in A&E I was readmitted to John Day Ward, the only spare bed in the building.

Unfortunately, John Day is a ward for respiratory issues, so they had no idea what to do with me,

and were just going through the motions.

The NHS has this unusual way of protecting immune compromised people from the outside world and its’ diseases. It forces anyone who comes into my room to wear a thin plastic apron, that barely covers the front two thirds of a human body, and latex gloves. I don’t know how this is supposed to protect someone. To be honest I think it’s a waste of time and money, especially when the consultants are breathing on you while doing an examination, or god forbid someone wants to shake your hand!

Luckily, in my hospital stay so far, none of my visitors had been made to wear the apron and gloves. Until I was placed in John Day. The second day in that room an overly paranoid, hovering nurse was taking care of me. She meant well, but she just wouldn’t leave me alone.

My aunt, uncle and Grandma just so happened to visit me that day, and the nurse must have been having a power trip, because suddenly she was in the room ordering my guests to wear aprons and gloves! They’d already been there for two hours, if I was going to catch something from them I’d already had plenty of opportunity! But no, she told them they needed aprons and gloves and then left without telling them where they were. Good thing I knew! Can’t risk my health and all!

 

Work it guys, I feel very safe now!

I was finally given my blood transfusions, saw the doctors the next day, and was put back on the IV

steroids.

A couple of days later a bed in Lord North became available and I was transferred back there, into a

shared ward. I was given five more doses of IV Prednisolone over the coming days, and then transferred to pills. The dosage this time is currently at 80mg per day, which is considerably lower than the dose I was given five years ago, which might be why it isn’t working as effectively as they’d like. Or more importantly, as I would like.

After countless more blood transfusions and the steroids throughout that week, I began to feel a lot better. My energy levels shot up, though they definitely weren’t perfect, and I wasn’t getting breathless walking around anymore. However, my blood levels still weren’t stabilising, so it was decided that I would be re-released to travel up to London the next day and meet my doctor. And I was going to make it this time.

I met, along with my Mum, my Haematologist and Immunologist at St Mary’s and they told me they wanted to start the new pills, but they wanted me to be admitted to Hammersmith to do it. They were willing to let me come up the next day, but a side room would be arranged for me.

It was disappointing news, I just wanted to stay at home, but it was the best option really.

So, they took 12 vials of blood from me, which again told them that my blood levels were still dangerously low, and I went home for the night.

That evening I got a call telling me that my room was ready and could I come up within the next hour? I told them no, that I was having one more night in my own house dammit and that my consultant had said it was fine to come up tomorrow. They seemed confused, and said they would call me back. They called me back and said I could come up the next day. Thankful for the hospital reprieve, I slept well in my own bed, got a haircut the next morning and Dad drove me up to Hammersmith at about 10am. Because the bed was already available, we walked into the ward and straight into the room. Lovely stuff.

Well, 5 days later and I’m still here. Waiting.

80% of a stay in hospital is waiting. You wait for the nurses to do your observations, you wait for them to take your food order, you wait for the phlebotomist, the doctors, the results of any scan or blood test, you wait for everything.

At least the food in Hammersmith has improved. Not a huge amount, but enough for it to be edible. 5 years ago, the menu styles at Maidstone and Hammersmith were very similar. However, since then, the food options and quality at Maidstone hasn’t changed at all. You’re given your “menu” for the next day in the afternoon, where you have to choose your food pretty much 24 hours in advance, and then the next day you can’t remember what you ordered. Not that it matters, it’s still awful. At Maidstone all I ate were the jacket potatoes, sandwiches and salads; although once I did order minced beef, and I don’t know why. I didn’t order anything with it, it just turned up on my plate, brown and sloppy. Needless to say, I didn’t even try it.

Hammersmith has a proper menu now, with pictures included. The options are far more appealing than Maidstone then and now, and I decided to actually try something new. The first thing I ordered was the haddock and chips. That’s when you know it’s going to be alright, when they specify the type of fish it is. They come round in the morning with and iPad and take your order for the day, which is much more reasonable.

These are the menus at Hammersmith. They’re ok, right?

Anyway, so far, I’ve been playing the waiting game, and I’m definitely losing!

I still plan on adding photos to "I'm Where All The NHS Funding Goes", but I'll keep you updated!

Please feel free to comment! 

Speak soon,

Rachel.