A Bit of Good News

As I suspected, once my platelets had broken through the 200 barrier they'd start to drop again.

On Monday 7th my platelets were at a very comfortable 188, by Friday when I had my pre-op they'll cruised to an all time high of 223, but on Monday 14th they'd fallen back to 196.

Still 196 is nothing to sneeze at. It's nicely above 150, which is the minimum my Hematologist wants me to be sitting on when surgery rolls around in a just over a week and a half.

After getting the result from the nurse this morning my Hematologist rang me and confirmed that I was allowed to decrease the Prednisone again by 10mg. So tomorrow I'll be down to 20mg.

Already, as I've been decreasing the dosage, the side effects are easing. I still have a lot of neck and facial swelling, but the pain in my neck and shoulders has eased and Panadol is usually enough to deal with it. The tingling in my hands and feet and the numbness in my face have gone. The indigestion has eased so much I very rarely need to take Mylanta, the Omeprazole twice a day is usually enough now.

So I'm excited and celebrating this small victory.

Now if they will just hold steady and if I can avoid getting sick for the next week and a half I'll be a happy camper.

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.

Friday Follow Up

On Friday 5th March I had a follow up visit with my Hematologist.

She was very pleased with my last platelet count of 151 on the previous Monday. But she took one look at my "moony" swollen face and announced that we would halve the dose of Prednisone, dropping me from 80mg to 40mg.

The hope and the plan is to reduce the Prednisone as much as possible over the next few weeks and still keep my platelets above 150. A nice safe level for surgery.

Each week I will have my bloods taken and will check in with my Hematologist before adjusting the dosage for the next day.

I have been on the 40mg dose since Saturday (only three days) and will get my blood results tomorrow.

It will be interesting to see what happens. Will I be able to maintain platelets of 150 on 40mg?

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.

Toughing it out

After my trip to hospital for a transfusion of antibodies in the middle of February and my unfortunate reaction to it, I came away better but with a sore shoulder. The pain in my shoulder initially receded, but on the Tuesday night following my discharge it returned with force.

Over the next few days it continued to flare and extend into the side and back of my neck. By Friday I was taking Panadol and Codeine which helped but I still suffered break through pain, especially at night.

On Saturday night as I was getting ready for bed I noticed my shoulder and the back of my neck had begun to swell. On Sunday I noted that the swelling on the back of my neck had traveled around to the front, destroying the definition at the base of my throat, and it was spreading up my neck giving me a double chin and swelling my jawline.

The pain was continuing. I had been experiencing tingling in my right foot which had become continuous. I had occasional tingling and burning sensations in my palm. On the Sunday my face began to tingle and I experienced a patch of numbness in the area of my left cheekbone which came and went. I began to worry that whatever was causing the swelling in my neck was causing pressure to my nerves or something.

On the Monday I visited a GP. She thought that some of my symptoms could be caused by the stress of my illness and upcoming surgery and speculated that the swelling I was experiencing might be due to an allergic reaction to a medication. However, since I was taking no new medications she decided to send me in to ED to rule out any other potential issues.

So, on Monday afternoon I was back in ED. They took full bloods and x-rays of my chest and neck.

The bloods came back clear. My platelets had risen to 70!!! The x-rays were fine. After some discussion with my Hematologist they concluded that the most likely cause of the swollen collar around my shoulders, my "buffalo hump" as the doctor called it, was a reaction to the high dose of Prednisone I'm on.

Obviously my body has decided to protest the sudden jump in dosage. But I was otherwise responding well to the Prednisone, as evidenced by my blood results. My platelets had jumped from 18 to 70 in a week and my doctors are reluctant to mess about with the dosage and risk another drop in my levels. They advised that I keep up the panadol and codeine for now and they'll review the Prednisone dosage next week.

So I'm sucking it up. I'm taking painkillers when the pain flares ... and trying to avoid any and all mirrors.

Symtoms of ITP

The symptoms of ITP tend to vary in intensity between those effected by it.

I tend to have a fairly mild response to a low level of platelets, compared with some of the nasty images I've seen on google.

According to the US NIH;

Having a low platelet count doesn’t cause symptoms. However, the bleeding that a low platelet count can cause may have the following signs and symptoms:

• Pinpoint red spots on the skin that often are found in groups and may look like a rash. The spots, called petechiae, are due to bleeding under the skin.
• Bruising or purplish areas on the skin or mucous membranes (such as in the mouth) due to bleeding under the skin. The bruises may occur for no known reason. This type of bruising is called purpura. More extensive bleeding can cause hematomas. A hematoma is a collection of clotted or partially clotted blood under the skin. It looks or feels like a lump.
• Nosebleeds or bleeding from the gums (for example, when dental work is done).
• Blood in the urine or stool (bowel movement).

Any kind of bleeding that's hard to stop could be a sign of ITP. This includes menstrual bleeding in women that’s heavier than usual.

Bleeding in the brain is rare, and the symptoms of bleeding in the brain may vary in severity.

Exhaustion
Some places on the internet deny that ITP should cause you to feel tired and leave you battling with exhaustion (maybe this is true if your platelet levels are above the critical zone) but my Drs are never surprised I'm exhausted. This is one of the first things I notice and the one symptom I find the most difficult to deal with especially when it leads to lethargy and the sensation of limb weakness.

Headaches
I sometimes get sharp, short lived headaches, this is probably due more to the weariness factor than ITP itself.

Mild Paraesthesiae
A tingling or burning sensation in the skin like pins and needles.

I have increasingly been getting this, especially when I'm in bed. It's not as uncomfortable or as intense as pins and needles but more like a random tingling in the toes/foot and fingers. Lately I've also been getting a sensation in parts of my hands that I can only describe as a burning, stinging feeling, as if I'd recently scolded or burnt it.

This may be a reaction to the steroid treatment rather than a symptom of ITP.

Petechiae (Blood Spots)
Flat roundish red spots under the skin which are caused by blood leaking from the capillaries in to the the skin. These can be anywhere on the body including inside the mouth.

I tend to get them most commonly on my chest, arms and legs, especially around my ankles. They can be quite scattered or in clumped in 'crops'.

Purpura
Are larger, darker spots or areas of bleeding that become purple or brown bruises caused by bleeding under the skin.

Bruising
I get a lot of bruises when my platelets are low and I couldn't tell you where I'd get most of them from. They're ususally the yellow or brown variety but occasionally I get a lovely purple one. The legs seem to be most vulnerable for this.

Bleeding
[note: If you have ITP and you hit your head go to your GP or ED as it may cause bleeding on the brain.]
Some people maybe have blood in their stools or urine or related spotting. Women may have much heavier periods. You maybe susceptible to nosebleeds and bleeding gums when brushing your teeth. Blood filled blisters may appear in the mouth and on lips. If cut, bleeding will be much, much slower to stop. "In general the more bleeding symptoms you have, the lower your platelet count" according to the PDSA.

When my platelets are low I get bleeding gums on doing my teeth and they are sometimes quite raw. I don't tend to get nose bleeds, though I sometimes have small blood clots on blowing my nose (what they call mild epistaxis) and spotting. This was the case even when my platelet count was 2!! unless I'm cut or punctured I don't tend to bleed.


I hope this gives you an idea of what to look for if you think you, or someone else you know, has ITP. Remember some people will have a much milder set of symptoms than others.