Splenectomy on March 13th

Rachael - how are you doing?

Hi Sandi (and Mark - thanks for the email asking how I was!) and anyone else reading this ...

I think my last update was that I was sore, and put that down to lack of painkillers - it was actually an infected haematoma at one of the wound sites (the other 2 have healed perfectly) so I've been on antibiotics for the last 2 weeks, which finish today. Medics reckon haematoma is resolving itself but can take a few weeks - it's discharging now, which is unpleasant but apparently a good sign on the healing front here's hoping it keeps healing, I'm a bit lopsided with a lump the size of a small apple on one side of my belly!

Platelet count not too good - done again yesterday, 37. So, although it's still early days, I think I need to accept that maybe the splenectomy hasn't worked, despite all the positive indications from the indium scan and my immediate post-surgery response. That said, I've had an infection and I've got a cold, so that could take the counts down and my system needs more time to settle - right now, I'd definitely be happy to achieve a safe count, am no longer hoping for something in the normal range, and at least I'm fortunate enough not to have any bruising etc unless I get below 20. Apart from the haematoma being sore, I feel better than I have done in months - anaemia is now sorted (ongoing iron tablets) and I have enough energy to go round the park most days, and have started driving locally (will hit the motorway on Monday for my first full day back in the office!). Weekly blood counts have resumed given the 37 this week so ITP still a bit front and centre in my life just now, hoping it'll recede into the background a bit soon ...

Hi Rachael,

I've been thinking about you. At least you have good news about feeling better than you have been for a while. Good you have been able to get in some walks too. Good luck going back to work for a full day.

Don't worry, at some point soon Itp will fade into the background of your life.

Dru

Rachael

Thanks for the update.

Sounds like it continues to be somewhat of a roller coaster! Welcome to the lopsided club! At one of my surgical portals two of the three muscle layers didn't quite close - its not quite a hernia and they said it wasnt worth the surgery to fix... so I'm a bit lopsided for life.

I'm sure the platelet numbers can be worrying - we're all thinking of you and sending good and platelet-inducing thoughts your way.

Mark

I didn't realize that you'd had the Indium (or I forgot). You sure tried to cover your bases and it's too bad things didn't quite work out. It's still possible to stabilize, so I hope you do!

An update 4 weeks on from surgery ... still have one wound open as it's discharging (lovely!) from the haematoma, but at least there's no infection just now and the lump is going down alowly. Still might be with Mark in the lopsided club for a while though!

Not so good news on the platelet count though - 16 today, so looking more and more like the splenectomy hasn't worked. Discussed options with doc and we're going to monitor things for a few weeks to see what my count eventually settles at and how symptomatic I am before starting any other treatment - which will be (in order of preference) romiplostim, rituximab, MMF, eltrombopag and vincristine. Not read much about MMF before so will dig about on this site and educate myself!

Thanks for the update and glad the infection is gone. Sorry to hear about your counts. I'm sure one of the treatment options will work... Keep up your positive attitude. Were you able to get back to work? I always find work as a good distraction from itp!

Yes - work totally been a good distraction for me during my entire ITP "career" My employer has been really good about the time I've had to spend having appointments and treatments etc, plus I can work at home when I need to so am very lucky that way. I went back to work pretty quickly after the surgery - out of hospital on the Saturday, worked full days (at home) on the Monday and Tuesday, but that was a bit much, if I'm honest, particularly as that's when the haematoma started making its presence felt! So, I worked half days until the end of last week, and since I can now drive again, I've been on full days back in the office this week. Normality is great - and my colleagues do actually exist as real people - has just been instant messaging and phone calls for a month!

Am feeling pretty calm about the situation - given the information I had before the op, I'd still make the same decision to go ahead with it, so am not bitter or angry about it. Am hoping for a stable count that means I don't have to have any treatment but have accepted that's unlikely and I'll join those of you on Romiplostim in a few weeks time!

Rachael

Glad to hear that you are in good spirits! - And I agree that you made the right decision - and I recall that NHS won't pay for regular Nplate injections unless you've tried a splenectomy, so your decision makes sense from that perspective as well. One thought, which I am reluctant to express, because I 'm not sure how useful it is, but,.... given that you were a good candidate (indium test) I wonder about accessory spleen. THey are more difficult to find with laproscopic surgery...

We're all rooting for you!

Mark

Doesn't the indium test indicate only if the CURRENT platelet destruction is in the spleen? That doesn't mean, alas, that later another organ couldn't take over the destruction. I think they figure that's what happened in my case.

I applaud your positive attitude, Rachael!

If I remember correctly, when Ann had that done, she got percentages. It wasn't like it's 100% the spleen or 100% the liver. I hope she jumps in. They can determine that the spleen is responsible for 77% of sequestration and the liver is responsible for 23%. They then tell you that since most of the spleen is harboring platelets, you have a high likelihood of success. That doesn't mean you are guaranteed anything.

A lot of people are also treated right before the surgery, so counts go up. After surgery, they are still up. So you really don't know, until it wears off, where your count will settle.

I'll see if I can find it.

It's here. A discussion in which Ann and KO quoted percentages about splenectomy success rates. I don't know how they determine the percentages.

pdsa.org/forum-sp-534/6-general-itp-discussion/10063-new-to-itp-my-story-attached-have-questions.html?start=120

This article explains how the scan is done and what results it gives along with the success rates. I see that as it was taking results of patients' scans done until the end of 2008 mine will be in there somewhere. Nice to think I've made it into the research journals!

onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.2010.08377.x/full

Quick update - last week's count was up from 16 to 28, so something to feel slightly positive about. Am not reaching for the champagne yet as things are still settling down, but there is a bit more hope that maybe I'm not going to end up in single figures, and may even be able to hold a count above 20 (and therefore not need any treatment, apart from for any future surgery like the imminent cataract removal I'm going to have to have - thanks prednisolone!). So, another blood count tomorrow, and am also seeing the surgeon for my 6 week post-surgery checkup - not sure if he'll want to do something about the haematoma/open wound but at least I can tell that things are healing, even if it's been a long 6 weeks to get here!

Hi Rachael,

Glad to hear your counts are up and you continue to heal from the surgery. You sure have a great attitude!

The NICE guidelines for offering you Nplate instead of splenectomy are that you only have to have failed one alternative treatment - in your case Prednisolone. Maybe the NICE guidelines are different in Scotland than England but I doubt it. I would be furious with my Haematologist if I had had my Spleen out to no avail - completely compromising your immune system and condemming you to taking antibiotics for the rest of your life. Research the NICE guidelines for Scotland and see for yourself whether this is the case.

Many local health authorities (including my own) are blissfully unaware that the NICE guidelines changed for providing Nplate from having to have failed Splenectomy to just having failed one alternative treatment.

Splenectomy is the cheap option - Nplate can cost the NHS £1000 a week for the rest of your life.

It is a disgrace that you have been put through what appears to have been an unneccesary procedure.

No,she does not have to take antibiotics for the rest of her life. The only thing you have to keep up with are vaccines for certain types of bacterial infections and have the vaccines every 10 years. I had a splenectomy in 1999 and have not had any more infections or illness than co workers or friends.

rjsmyth wrote: The NICE guidelines for offering you Nplate instead of splenectomy are that you only have to have failed one alternative treatment - in your case Prednisolone. Maybe the NICE guidelines are different in Scotland than England but I doubt it.

NICE only applies to England and Wales. Scotland has its own body, the SMC, which has indeed gone along with the European licence for Nplate which says it's for use after a splenectomy or if a splenectomy is contraindicated.

Splenectomy is the cheap option - Nplate can cost the NHS £1000 a week for the rest of your life.

Except I am cautiously optimistic that Nplate has pushed me into remission and others are finding the same. The NHS also gets a reduction in price for Nplate and most only need one vial of drug so more likely £400 a week. Oddly, eltrombopag is about to get the okay from NICE but it seems that they are sticking to the post splenectomy use for that one.

dru wrote: No,she does not have to take antibiotics for the rest of her life. The only thing you have to keep up with are vaccines for certain types of bacterial infections and have the vaccines every 10 years. I had a splenectomy in 1999 and have not had any more infections or illness than co workers or friends.

Different country, different norms. Antibiotics are recommended in the UK.

I'm on a half-dose of antibiotics every day, probably for life as things stand, but they may reduce the duration of that if guidelines change in the future - it's not a big deal to manage anyway so it doesn't bother me. No side-effects from it at least so that's a big plus!

Count was 30 yesterday (looks like may be stabilising at a relatively safe count for me) and surgeon happy that wound has now healed over, so I am dressing-free for the first time in 6 weeks! And I can have baths and go swimming - yay!

As Ann (and others have stated), romiplostim is not an option in Scotland unless you've failed splenectomy or are not a candidate (and I was a very good candidate for it, in fact!) so it wasn't a long term option for me before surgery - will be the next port of call if I need more treatment though.

Am back on the fitness trail as well now - hopefully can get back to climbing this week, plus walked to both hospital appointments yesterday (10 miles in total), back to yoga tomorrow night ... I have a redress the balance of a few months of almost total inactivity, plus 3 years ITP-restricted activity before that ... hoping to start running 10k races and going back to martial arts training again at some point this year though!

Ann wrote:
Except I am cautiously optimistic that Nplate has pushed me into remission and others are finding the same. The NHS also gets a reduction in price for Nplate and most only need one vial of drug so more likely £400 a week. Oddly, eltrombopag is about to get the okay from NICE but it seems that they are sticking to the post splenectomy use for that one.

I'll keep my fingers crossed for you and me both that we are pushed into remission by Nplate - that really would be the best possible outcome.

The ability to be able to be given Nplate in the England would be worth the move down here from Scotland .

I must have expensive tastes because I am on two phials a week at the moment . Rather means I cannot live anywhere other than England and I would not risk moving to another PCT area either !!

Rachael,
Glad you can get back to your active lifestyle, you will probably get right back in shape quickly if you can already walk 10 miles!

Dru

So, it's now 2 months since my splenectomy, and my count's 15 today. I've had a cold this week so that may explain the drop (it was 27, 30, 23, 28) for the last 4 weeks but of course, it could mean I'm heading back to zero again. I feel fine though, no bruising/bleeding - and I did a 3 mile run on Saturday, very pleased with that since it's the first time I've been running in (literally) years!

Anyway, still on weekly blood tests but am now also being sent for ultrasound to see if I have any accessory spleens as that could explain how my counts have been post-surgery. That said, I did have a CT scan prior to surgery which didn't pick up any accessory spleens (and they specifically looked for them) so it'll probably have grown since, if the surgeon didn't get all of it out. In a way, it would be good if that was the cause as it means I still have a chance of getting a remission, but of course the bad news is that I'll need surgery again - and it was almost impossible to get my count high enough last time ... guess we'll just have to see what the scan finds, if anything. In the meantime, I'm living life to the full while I'm not on any medication - just so nice to feel normal after so long feeling crappy ...

Feeling good is fantastic! That is such an added bonus!

I have not seen many people get remissions from having accessory spleens removed. I've seen people go through 3 or more surgeries which is way more than I could ever tolerate.

Sorry your counts are down again. Are you going to try treating at all?

Sorry your counts are down, but glad you are feeling good! Keep up your great attitude and you will be fine.

Am not treating at the moment - even though count was 15 last week, I don't really have any bleeding or bruising, and feel fine (apart from the remnants of a cold) so am in agreement with my doctors that we'll hold off on the romiplostim for a while yet. I feel much better when I'm not on meds (as long as my count isn't zero - I start getting pretty tired if that persists!) so am delaying for as long as possible. Undecided about what I'll do re surgery if they do find accessory spleens - guess it depends how many there are, where they are, if it has to be open surgery rather than keyhole etc. - all questions I don't have answers to yet so am being patient

6 weeks since my last update on here - after the low of 15 then, I then stabilised in the 30's for a few weeks - and today my count is 71 Am not getting ahead of myself here as it could just be a blip (albeit a positive one, for a change) but hopefully it's a good sign that things are improving and the the splenectomy was actually worth it (it would have been worth it even if I'd stayed in the 30's to be honest!)

Did fall off mountain bike 4 weeks ago (having decided that a count of 31 meant a normal life) and got a huge haematoma on my shin - didn't hurt too badly so strolled around on it for a few days, after which it got very painful and my ankle/leg swelled massively. All getting sorted now, am seeing a good physio and going back to yoga tonight after 3 weeks of enforced idless, but I have learned the hard way what I need to do for injuries like this - they'd be minor for non-ITP people, but I've been told to go straight for a platelet transfusion to help stop the internal bleeding, and then at least 3 days with affected area elevated and on ice. So at least I know for next time

71! This is great news... So glad you are doing well.
Be careful! But glad you can get back to activities again.

Ann wrote:

dru wrote: No,she does not have to take antibiotics for the rest of her life. The only thing you have to keep up with are vaccines for certain types of bacterial infections and have the vaccines every 10 years. I had a splenectomy in 1999 and have not had any more infections or illness than co workers or friends.

Different country, different norms. Antibiotics are recommended in the UK.

Rachael - congratulations on the count of 71. I've just read through this thread and it seems to have been a roller coaster for you. I hope that you keep getting good numbers hun!!

I'm considering a splenectomy if cellcept doesn't work for me. I'm being referred for a scan to see where my platelets are being sequestered and will decide after that. The reason being that I don't really want to take chemicals long term. Bearing this in mind I specifically asked my new consultant if I *had* to take antibiotics everyday if I have surgery. My consultant agreed that I didn't need to - he said I did need to keep them with me at all times and take them if I began to feel unwell. However, he felt I didn't need antibiotics everyday if I didn't want to take them. I'm in the uk. I just wanted to add this to Ann's comment because she is right & it is recommended but you may be able to negotiate if you felt strongly enough about it.

I've been reading Rachael's story and am also considering Indium screening after apparent Rituxan failure. I saw that her counts were 37 after the splenectomy, and I understand that she went through some significant medical problems after surgery, but I still can't figure out if the splenectomy was partially or minimally successful. Can you give us an update?