Celebrate the Little Things

When my platelets dropped off again rather sharply after the op, it left me concerned as to what options I had left. I began to wonder about what kind of therapies they might suggest to me next and if I had many options at all.

I became active in the two Facebook ITP groups which are a wonderful support for people trying to make sense of - and live with - ITP. There people were discussing the different therapies and their experiences with them.

One lady shared a story about one of her family members who had a count of zero and didn't respond to any treatments. She eventually died. Stories like this are scary to hear about, but eye opening too.

The problem with ITP is that each person afflicted by it will present the disease in a slightly different way. Some will suffer from a lot of bleeding, bruising and intense fatigue where others will have the petechiae and fatigue, or no symptoms at all.

In the same way each person responds to the treatments in a different way. One person may have great success with a treatment, yet it may do nothing at all for someone else. One person may experience no side effects to a drug that others react very strongly too. So in many cases our Drs simply have to try different things and hope they'll find a perfect match between patient and treatment, and hope the results will last. This can be challenging and disheartening for patients and their hematologists.

The frustration I have is that in New Zealand (as in Canada) we don't have full access to all the therapies that are available to UK and American patients of ITP. For instance the two options I was presented with were surgery or Azathioprine - and I was cautioned against the drug.

If I was in the UK or America they would likely give me a range of drugs to trial and, in many cases, surgery would be one of the final options.

Most of the time having ITP is little more than an inconvenience, a specter that hovers in the back of your mind. When things are going well it can be easy to forget that you're unwell and that ITP is a dangerous condition to have.

On a lighter note, things at my end have continued to improve.

I recovering from the virus I fell prey to a couple of weeks ago and the double dose of penicillin seems to have prevented my catching any secondary bacterial chest infections.

Two weeks ago I was sitting on platelets of 36. That rose the following week to 66 which was a great relief. Imagine my delight today when I found out I'm now sitting on 184!!!

I couldn't believe it. I'm so stoked!

I said to the hematologist, "So it looks like the operation has worked after all."
He gave me a funny look. "Well, things are looking all right, for now. They did drop very low though. It may not last long," he said in a voice that implied he wouldn't be surprised if the crashed again in the near future.
I said, "Yes, but I was told they'd probably drop off after the surgery and then go up again."
He just looked at me. "Not that low."

Still, I refuse to let his pessimistic prediction get the better of me. I won't let myself worry about what will happen if/when I crash again.

I'm determined to celebrate this and think of it as a victory. Long may it last!

Post Op

On Friday the 25th I had an appointment with my hematologist. She was pleased with the fact that my platelets were at 226. She told me to stop taking my garlic and fish oil supplements as these thin the blood.

My folks finally arrived on Sunday afternoon after an extended stay with my brother on their way south. I had to go into the hospital that evening for a blood sample to be taken (in case they had to give me a blood transfusion) and I was also to have an injection to thin my blood.

When we got in to DPH they told us they were no longer going to give me the injection. We couldn't help feeling a little peeved. We'd driven all the way into town and they were only going to take a blood sample which they easily could've taken the following morning.

My hubby dropped me off at the hospital just before 7am and I headed up to the 4th floor trailing my little purple suitcase. I was given a lovely set of hospital pjs, a stylish gown and boxers. "One size fits nobody," the nurse joked as she handed them over.

I was first on the list for surgery. As I'd requested I was given a little pill to help me relax. At 7.30 was taken down to theater and asked to climb on to the operating table. My memory at this point is a little hazy, no doubt the de-stressing drug was beginning to take effect. They gave me a mask to breath into....

.... and the next thing I knew someone was saying, "You have to wake up. You're in the recovery ward. The op has been done, it went well and you need to wake up."

The next thing I was aware of was pain.

I admit I moaned and grizzled a fair bit after this.

I think they gave me a few oral pain killers. Then I remember someone saying it wasn't enough and they were going to have to give me something else. Another someone started giving orders. A pain pump was pressed into my hand and I was told to pump it as much as I needed to. The pain eased quickly after that and I think I went back to sleep.

My next memory was waking up on the ward with my Mum sitting beside me. Apparently I'd been awake before this and had a conversation with her and my Dad when I'd first been taken to the ward, but I don't remember any of it or that my Dad had even been there.

The pain pump was brilliant! It was my very good friend for the next 24 hours.

I was very unsteady on my feet, and pretty spaced out for much of the first day. I remember being fairly proud of how coherent and with-it I was, but apparently reality was a little different...

The next morning (Tuesday 29th) the surgeon and his team came round first thing to check on me. This was the first time I'd seen what they'd done to me. I think I was a bit scared to look before that. I had four wounds/incisions. Two small ones just below the line of my lower left ribs, one more towards the center of my tum and another larger one on my side.

Because my platelets had been so high there had been no need for me to have any infusions of platelets. The surgery had gone well with no complications, he was pleased with how it all looked and thought I could probably go home the next day if I was strong enough.

My platelets were are at 230.

My Prednisone had been given intravenously during the op and increased to 30mg (up from 15mg) to cover any post-operative stress my body might experience. I was then given 30mg orally on Tuesday and it was dropped to 25mg on Wednesday. The plan was to decrease the Prednisone by 5mg every two days until I hit 15mg.

I'd also been given my first dose of antibiotics intravenously, but now I started taking them orally. Pencillin VK 500mg twice a day for the rest of my life.

The pain pump was taken off me at about 10am and I was given oral pain relief; panadol, codeine and tramadol. I'm not allowed to take ibuprofen or asprin because they thin the blood.

I was encouraged to eat, though I really didn't feel like it. Mum came in with Dad in the morning and spent the day with me, chatting, drinking coffee and generally just hanging out. Dad went off to potter and do a few odd jobs he'd managed to find that needed doing.

Mum helped me shower in the morning (the nurses were so busy there was no way they could have found time to assist me) and read a book while I snoozed in the afternoon. My Dad brought the kids in to visit for a short while after school and my hubby dropped in again after work. A couple of friends also popped in.

I slowly began to regain my strength and by the end of the day I could hobble to the bathroom and back to my bed without assistance as long as I had something to hold on to.

On Wednesday morning my platelets had dropped a little to 219. I was given the all clear and told I could go home. My wounds were cleaned and dressed and by the time the house surgeon had got all the paperwork together it was after lunch. I was wheeled down to the entrance and left the hospital at about 1.30pm.

Pre-Op

On Friday 11th I was back in Dunedin Public hospital for my pre-operation appointment.

I met with the House Surgeon and her attendant student, the Registrar and the Anesthetist. They examined me, tested all my vitals and took more blood tests. Feeling like I was signing my life away, I signed off on the op.

I also had an MRI, which was not related to the upcoming op but to problems with ovarian cysts I had last year, the appointment just happened to fall on the same day. I've heard terrible things about MRIs. About how loud and clostrophobic they are. I coped with it pretty well. I just kept my eyes shut and pretended I was having a nap. It was really loud though...

All up it took about three and half hours.

I will have to go in briefly the Sunday evening before the op to have an injection to thin my blood to prevent blood clots. Now you'd think that having a condition where low platelets (trouble with clotting) is an issue would make this unnecessary, but apparently it doesn't work like that, go figure.

At the same time they'll take blood from me in case I need a blood transfusion after the operation. Apparently they would normally have done this when I was there on Friday, but something about my condition means the blood will only be good for 48hrs rather than the usual 20+ days.

I have to present myself to ward at 7am on the Monday morning (28th March).

I will be given platelets before the op (though the Anesthetist thinks this is a waste of time and will have a discussion with the surgeon about it. The theory being that those platelets will end up in the spleen and be removed with the spleen so you may as well not have had them. I'll let them argue it out...) and then they'll give me more during the op, once the spleen has been clamped off.

The Anesthetist asked me if I wanted to be given something to dope me up and help me relax before going into theatre. I unashamedly said, "Yes, please!"

So my hubby will drop me off first thing, on his way to work. My folks will get the kids off to school and then come in to the hospital so that someone is there with me when I come around afterwards. Not that I'm going to be very with it, but (big baby that I am) I didn't really want to wake up alone.

All going well, the op will be laproscopic and will last about three hours. I'll have four small incisions in my tum, mostly on my left side, as the spleen is under the left ribs. One will be next to my belly button where they will insert the camera.

The reality is slowly sinking in...

I phoned the hospital yesturday to find out the results of the bloods they took on Friday. I couldn't believe it when the nurse said I was sitting on 200+. I was so taken aback I actually can't remember the exact number.

Once I hung up the phone a false, inner voice began whispering, "See you're fine, you don't need this op. It's pre-mature. You've had so many people praying for you; you're all better. You don't need this op. There's still time to get out of it." My inner Golem had awoken ... and has been tormenting me ever since.

Of course I know it isn't true. I know the platelets are high because the meds are working and without them I'd be a mess. As much as I don't want to go through with this I know I have to. This is the best and the most sensible medical option for me right now.

I didn't think my platelets had been this high since I was diagnosed with ITP but when I was talking to my Mum last night she reminded me that I'd broken the 200 mark once before when I was first on the Prednisone. I'd got up to 210 before the level started to drop off.

If I needed a warning about being sensible and taking my antibotics after the op I got one on Friday. One of the many people I spoke to said her friend's daughter had recently had a splenectomy but she'd stopped taking her antibiotics and now had peritonitis (fluid around the heart). Point taken: Don't be a git and stop taking your antibiotics, they give them to you for a reason!

A Surgery Date

I got a call from the DPH Surgery department today to tell me that even though I haven't received anything in the mail as yet, my surgery date is Monday 28th March. Just under three weeks away.

My pre-op appointment will be this Friday at 10.30am and I should anticipate that this could take 4 to 6 hours! I will be meeting with the anesthetist, surgeons etc and having whatever tests they think necessary.

I admit to being taken a bit unawares by the call. It shook me a bit.

I was ready to get the letter in the mail, to sit down and take my time to open it and get my head around it; getting the call took me off guard. I'd pretty much convinced myself the surgery would be delayed, but the date is exactly what the surgeon indicated when we met with him.

I think I'm still getting my head around it. It feels a bit surreal...

I also got the results of my latest blood test today. My platelets are sitting happy on 188!!!! (which is amazing) I will be able to drop the Prednisone a further 10mg to 30mg tomorrow.

Another Step towards Surgery

On Monday 28th Feb I popped into the local medical centre to have my weekly blood test before work. While I was there I checked in with the nurses to see how they were getting on with ordering in the immunisations I needed.

They still had one or two they were waiting on. Not knowing how I would respond to the immunisations I had hoped to get them out of the way early in the week so I could spend my days off work dealing with any side effects, but that wasn't to be.

On Tuesday I called the hospital to get my blood results. Wait for it....

151!

My platelets had continued to rise and I was sitting on 151!

So while I've struggled with the nasty side effects of the Prednisode it hasn't been for nothing. The drug was working it's magic. I was back in the "normal zone."

On Wednesday, 2nd March, I checked in with the nurses at the medical centre again. They had managed to get four of the five immunisations we needed. The fifth, Meningoccal B, could not be sourced - apparently they aren't manufacturing it at present.

It was decided that I'd go in the next day.

However when I got there on Thursday they took my temp and discovered it was raised (37.6), and so the doctor had to be called in to check me over. Eventually it was decided I was fine and could go ahead and have the jabs. Crisis averted!

I really had been dreading getting them done. I hadn't had an immunisation since the rubella jab when I was 12yrs old! In the end only one of them was really uncomfortable ... though I couldn't tell you which was the ouchy one.

I was patched up with four Barbie bandaids, two on each arm. My girls were very impressed when I came home sporting these brightly coloured momentos of my bravery.

I haven't had any adverse reaction to the immunisations. The ache in my neck and shoulder did increase and I had a bit of stiffness too, but nothing that a good dose of painkiller couldn't deal with.

So, I have been immunised. It's done. I've taken another step towards surgery.

"Stop the world I wanna get off!"

I got a call on my cell while I was meandering along the road to catch the bus into the hospital today. It was the Surgical Outpatients department saying they'd received a referral from my Hematologist and had an appointment for me at 10.30am this Friday. Yes, you heard right. In just two days.

I was a bit surprised since I hadn't actually told them I'd decided to go ahead with it yet, but my hematologist is the proactive sort and is obviously keen to get the ball rolling. Besides if I'd decided to go the other route it would have been easy enough to cancel it.

I dragged a friend along to my appointment since hubby couldn't get the time off work and got in there to discover my doctor was away but that she'd asked someone else to meet with me. Her replacement was lovely and answered all my crazy questions.

My platelets have dropped since Monday (when they were 31) down to 18 yesterday. So, as before, I'm to go for another bloodtest on Monday unless I deteriorate in the meantime, in which case, I'm to go straight into the ward.

Unfortunately, if my history is anything to go by, now that my platelets have slumped this low it's unlikely they'll come up again by themselves. I'll be monitoring myself closely over the next few days for signs that things have deteriorated further. However, because of my bad reaction to the Immugam transfusion last week they're now reluctant to give more unless they have to. As the doctor said, "If we can avoid putting you though that again, we will."

I had my suspicions yesterday that my platelets were dropping again. The site of my bloodtest was still seeping when I went to take the plaster off five hours after the test! And then this morning I noticed a few new tiny red petechiae on my upper right arm and shoulder. So I wasn't really surprised to hear the low result.

Of course if I can't maintain my platelets at the moment on the highest dose of Prednisone they can give me then we have other problems.

A surgeon isn't going to want to operate on someone with a low platelet count. After all, they don't want me to bleed out all on the table... that would be very inconvenient!

Ideally they'd like my platelets to be 80+. It's unlikely they'll do it if I'm sitting under 50. And that feels like miles from where I am now!

So how am I aside from all this? I'm knackered!

I've been very stoic and practical though out the process of making the decision to have the surgery, but the exhaustion is getting to me now and undermining my calm. One of the draw backs of being on a large dose of Prednisone is that no matter how physically, mentally and emotionally exhausted I am my brain won't shut up and let me sleep.

I'm so tired right now all I want to do is curl up in a corner and cry. Let life carry on without me, I don't want to know about it anymore!

It sucks, but that's not the way life works...

I'm trying not to think too hard about the fact that I'm working Friday through Monday. I can't afford to take any time off and we're going to be working short-staffed this weekend anyway. So unless my platelets crash though the floor and I've no choice but to go into hospital, I'm be soldiering on.

What Happened Next

9th February: So back to hospital I went. I packed a small overnight bag on a hunch I'd end up being in overnight.

All three of my hematologists, including my Consultant and Registrar, were waiting for me in ED when I arrived and I was out of the waiting room, processed and into a ward within 20 minutes (which has got to be some kind of medical miracle, they were certainly pleased with themselves).

They did the usual processing in ED, examined my bruises and spots and questioned me about any illness or medication or health products that might have triggered the crash in my platelet levels.

The thing was, other than feeling tired much of the time I'd been fine. Which had them scratching their heads and frowning. I'd had nasty UTI in the middle of January but it was deemed to have been too long ago for the antibiotics to have caused the crash.

And that's when all the apples fell off the cart and my hematologist said, "I think we may have to consider surgery. Otherwise you would have to be on least 10-12mgs of Prednisone dosage, and that's too high."
Surgery was something that had been mentioned when I was first diagnosed. I nodded and asked, "So how long will we wait before we have to think about it seriously." Thinking that if I didn't improve in a few months we'd give it due consideration.
She said, "I think we could get you in in the next two or three weeks."
I stared at her. I'm sure my eyes bulged and my mouth dropped open in shock because she added, "There is a drug you could take instead but it carries a cancer risk and you're too young to take that risk." Seeing it was all a bit overwhelming for me, she gave me a hug. (I have lovely doctors!)

They soon had me up in the ward and hooked up to an IV line. I was given a large dose of Immunogobulin Intragram (antibodies) to quick jump me out of the critical zone and get my platelets back up above 10. It takes about three + hours to take on board the full dose.

Each time I've had an infusion I've had different side effects. The first time it gave me mild joint and muscle aches and an annoying dry cough that lasted for weeks afterwards. The second time I had almost no reaction - possibly because it was within days of the first dose - I just felt a little queasy. This time, I was fine (aside from the annoying cough) until the last hour when I started to feel queasy. By this time it was almost midnight, they were almost done and I was too tired to complain.

By the time they unhooked me I was feeling quite nauseous and headachy and was given some anti-nausea drugs. I tried to sleep.

I semi-woke later shuddering and shaking but too exhausted to even roll over and press the bell for the nurse.

Later when the nurse came in to do my observations I woke enough to ask for another blanket and tell him I was feeling cold and confess my quaking. The nurse promptly whipped out a thermometer.

I had a fever. He took my blankets away, turned on a fan and plastered a cold cloth to my forehead. I was too miserable to argue. My head was sore, the light hurt my eyes, my joints ached and I felt stiff everywhere. I had many of the flu-like symptoms of meningitis.

A doctor was brought in to check on me and they decided to cover their bases and give me IV antibiotics in case (though it was highly unlikely) I had an infection on the brain.

By the time my doctors came by about 8.30am the next morning I could tolerate the light and the headache and most of the stiffness was gone. After a bit of discussion with me and amongst themselves it was determined that I'd experienced meningism like symptoms as a delayed reaction to the Intragram. I'm still, almost a week later, troubled at times with aching joints (and the cough) but otherwise the symptoms have fully resolved.

My bloods showed the Intragram infusion had worked and my platelets were back up to 25. Because I "was a sensible person and tuned into my body" they were happy to discharge me.

I would have to go home and discuss with my hubby the next step in my treatment.
I would have to make a difficult choice.
The choice between surgery to remove my spleen or the drug Azathioprine.

I was given information about the drug and about post splenectomy considerations to help me make up my mind. We considered this information, studied abstracts from studies of ITP patients who have been treated by both splenectomy and Azathioprine, and read pages and pages of info on the internet about the risks and success rates of both these treatments. I talked to people who had taken this drug (though for different conditions to my own). We prayed.

On Sunday night we gave voice to the decision we'd made. I would have the splenectomy.

On Monday I updated my boss and discussed the time I'd have to have off work as a result, then trotted off to have another blood test. My platelets had increased to 31.

I had another test today and will find out the result tomorrow when I go into hospital to discuss our decision and find out what happens next.