Splenectomy on March 13th

Decision made 2 months ago to go for the splenectomy once it was clear that azathioprine wasn't working after several months of trying - surgery scheduled for Wednesday 13th March. I had the indium scan in London back in November and it was pretty conclusive that it's my spleen that's sequestrating most of my platelets (>85%) so I have a good chance of success, at least until my liver picks up some or all of the work!

So, the challenge is to get my count up over 50 for surgery - it's zero today! Weekly IVIg was getting my counts up over 100 during January but then stopped working abruptly about a month ago, even when getting double doses on consecutive days every week during February. Have been having lots of dizzy spells, blood pressure drops etc which could well be due to the IVIg, since the blood cultures I had last week all came back clear, so no underlying infection or anything. So, with a mouth full of blood blisters and a nosebleed that's lasted for over 2 weeks, as well as all the usual bruising and petechiae etc, I'll be getting my third Romiplostim (N-Plate) injection on Friday (it's not a long term treatment option for me as it's not in policy on the NHS in Scotland - can only have it long term if you've failed splenectomy or are not a candidate for it), and started a 5 day course of dexamethasone today as a last ditch attempt to manufacture and maintain some platelets in the next week.

Can't say the next 2 weeks are going to be pleasant, as my two previous courses of prednisolone were awful and dex is reputed to be even worse, plus surgery isn't going to be a picnic either. Am holding on to the strong belief that splenectomy will work for me to get me through all this - I know it may not be long term but any kind of remission would be a bonus, however temporary! I've not taken the decision to have a splenectomy lightly, but have read up on it all, had all the vaccinations etc and just want it done now

Good luck! Sounds like you've done all you could possibly do. I hope it works for you.

Keep up your positive attitude, that will help you through the surgery. When I had my splenectomy I kept imagining myself well and healthy after. I concentrated on the things I could control, getting exercise and healthy foods etc. the splenectomy was not too bad and I was feeling good in a couple weeks and all the way normal in 4 weeks.



Good luck with getting your counts up for surgery, hope you do okay on the dex.


Dru

Actually, Rachel, the splenectomy itself will probably be the easiest treatment--if you're having a laproscopic one. I had an epidural instead of a general anesthetic, which meant, in my case, that I wasn't sick for 24 hours after surgery. The only real discomfort I had was that they can't always (maybe usually) pump all the CO2 out of the cavity, so until it dissipates, you might have shoulder, head pains as the gas rises. That didn't take too long--a few days. But the surgery was very easy to recover from--just tiny holes. I was instructed to take it easy for a day or two. I bought overalls since I didn't like the feel of anything on my waist for a week or two.

My splenectomy didn't work, but the surgery was easy compared to other surgery.

Good luck!

Am definitely being positive about it - I already eat pretty healthily, stopped drinking alcohol a year ago (and don't miss it a bit!), don't smoke - haven't been able to exercise much, but do try to walk whenever I can - my usual sports are (or rather were) climbing and martial arts, so they've been on hold for the last year while my counts have been so low and unresponsive, so am sooooo looking forward to getting back to the fitness levels I used to have before ITP and predisolone robbed me of it! I used to go mountaineering every weekend in the SCottish mountains - a couple of flights of stairs are a challenge for me at the moment - but not for long! Can just envisage that scene from "Rocky" where he makes it up the steps and pumps the air in victory! Will make a change from collapsing in a wheezing heap! On 2nd day of dex and although insomnia has kicked in (am prone to that even without meds) I'm only a wee bit jittery today, no roid rage yet! It's a 5 day course so might be a ranting monster by the weekend but fingers crossed my nearest and dearest get through it unscathed ...

Platelet count permitting, we're certainly going for the laparoscopic approach as the starter for ten - i have my pre-op assessment tomorrow so guess I'll find out then if it's a general anaesthetic or an epidural - I suspect the former after the meeting I had with the surgeon a couple of weeks ago, but I was fine within a couple of hours when I had a general for an ear op a few years ago, so hopefully won't be a problem. It's so reassuring to hear from people that the op is actually not so bad, and the tips on controlling what I can in order to help myself physically and mentally really help too! I already have some overalls I use for decorating but they are boggin' (a true Scottish phrase!) so think I may go for a new pair or even break out a dress for the first time since before winter ... hopefully won't need a maternity dress to accommodate any leftover CO2, appreciate the heads up on that side of things, had heard it could be sore so am prepared for that too!

Hmm, all getting very complicated now. On 3rd day of Dex, and although I don't have a blood test until tomorrow, my ITP symptoms really have not improved (and have in fact got slightly worse re. bleeding today) so I very much doubt I've had an increase from Tuesday's count of zero. Suspect that even pumping platelets in before and during the splenectomy is still going to be too risky with a count less than 50, so fingers crossed I'll have some kind of response by Monday, when I need to tell my parents whether to make the 350 mile drive on Tuesday to come and look after me after surgery on Weds - no point them coming up if that's not happening!

Anyone got any experience of how long Dex takes to work as a rule? Am I being too impatient with this?

Could always be that yesterday's brief euphoria has been wiped out by today's rage - not been in the best mood for waiting around for my pre-op assessment!!!

It might take a day or two yet to work. The problem is that sometimes a day or two after stopping the drug, counts can plummet. Does IVIG work for you?

Count was 13 yesterday, 4 today - so not exactly a steady increase. It's a 5 day course, which ends tomorrow - back to clinic on Monday for another count and review plus decision on treatment plan from here, whether have to postpone surgery etc. Had 3rd Romiplostim jab this morning too but doubt that's got time to do anything (and may not work for me anyway)

IVIg used to work nicely but stopped doing so a month ago - which coincides with me starting to get wild blood pressure fluctuations, dizzy spells, weakness etc - had palpitations, high BP, erratic pulse and protein/sugar/blood in urine after the last one (thurs 28th) so that's all been stopped. Ironically, the Dex has made the dizziness go away so I feel physically better for it, even if I'm having the steroid effects now instead.

Am pushing docs to define the plan from here - we can at least define what the surgical team say is the minimum count (usually 50 as we all know), and if they're prepared to pump platelets in to get it, if that means open surgery instead of keyhole, or if we just plain postpone if the Dex doesn't work. Will make the decision simple on Monday if we get the options on the table today.

Did have another question about pre-splenectomy fasting - what I've read implies a minumum of 24 hours on clear liquids only, but I just got a standard letter about that saying not to eat after midnight (maybe in case I turn into a bad gremlin, for all those who were on the planet in the 80s). Nurse didn't know at the pre-op assessment yesterday so I'll ask the docs, but to be honest, I trust the views of people on this site more on topics like this! Any advice welcome ...

I've never heard of 24 hour fasting. Usually it's 6 hours before surgery so some hospitals now say no food from 2am but others still stick to midnight for ease. Also some now say that plain fluid is fine and actually good to take up to 2 hours before surgery. Plain fluid means water, black tea or coffee, something like that but no milk as that's more like a food. Modern thinking is that if you drink within 2 hours of surgery it prevents nausea postoperatively. But not all hospitals have got that far yet, so do as your instructions say but don't worry about it too much.

I'll just add for completeness that the surgeon may require different for renal or heart surgery.

There have been people here have splenectomies with very low counts so they may still go ahead. It depends on the surgeon. The romiplostim injection can take 4 or 5 days to work so there's still time for that. I trust that they are highering the dose each time.

When I had my splenectomy I fasted from midnight the night before. I have never heard of 24 hour fasting.. That does not sound right.

Sorry you are having such a bad time with getting platelets up for surgery. Thinking of you and hang in, things will get better.

I had surgery last April. Fasting was from midnight on. No food or fluids, which was hard because I need my coffee in the morning.

Thanks guys - that all sounds better than trying to go for surgery without food for over 24 hours! Docs here thought that it wouldn't be a good idea to fast any longer than necessary so I'll follow the guidelines they gave me and your advice, which is very reassuring!

Surgeon off today but doc spoke to his deputy, and the signs are that they'll be going ahead on weds regardless of platelet count, final decision on Monday once Dex and romiplostin have had a chance to work over the weekend. Laparoscopic still the method of choice too, so that's good. Managed to keep steroid rage under control today by going for a lie down with a book for the few hours it really kicked in - logged into work again now that I can be vaguely human in my dealings with colleagues!

Thanks so much for all the support, can't say how much I appreciate it! xx

You learned the 'roid control' technique! Putting myself in time out always worked for me too. When I was at work, I'd hide in the bathroom and either cry for a minute or just breathe. When I was at home, I'd go into my bedroom and have my kids come in one at a time. Dealing with them 'en masse' was sometimes too much to take. Phone ringing, dog barking, kids yelling = AAAGGGHHHH!

Sounds like things are lining up for you. I hope all goes well!

My "roid control" is better today. Hope you are making lots of platelets, Rachel.

After a weekend of steroid-induced rollercoaster moods, my count yesterday was 5! Woo hoo, go me, absolutely no response at all! So, surgeon really not happy to go ahead with surgery tomorrow unless I can achieve a minumum of 30 (ideally 50) by some miracle - so back to IVIg yesterday (and probably again today) even though it's not worked for 6 weeks - even a minor increase for a couple of days might be enough to get through surgery, otherwise we'll have to postpone and increase the romiplostim to see if I respond to that.

So, all fun and games here!

Wow, sorry to hear that. Sounds very frustrating . Thinking of you!

Well, hang in there! I and many people on this site have been through a very similar roller coaster. I had romiplostim injections week after week, with a doubling of the dose (make sure they are increasing the dose) before it finally raised my platelet numbers, which had been 0-5. Then, my splenectomy knocked me into remission (year and half now). I wish the same for you - but I remember well those stressful many weeks before the operation.

It is possible to do the surgery with very low platelets. In this case, open surgery is safer (so they can see everything) and with platelet transfusion occurring (even though you're clearing them, transfusion will keep the value high enough during the window you need them most). I know it's scary.

For now its one day at a time- but things change and you'll get past this eventually -

Mark

Rachael has come through her operation, and early signs are positive.
Surgeon says post op blood test already showing a rise in platelet count

A big thank you to all on this site for you support and kind words, both Rachael and myself have found it to be invaluable.
I'm sure Rachael will be back online to update you in full in due course.

Thanks again.

Thank you for letting us know......glad to know the surgery went well and great news about the positive signs!

Rachael's recovery is going well, her count is already up to 280 and all things being well she'll be home tomorrow.

Thanks for the update! Tell her we said hello!

Just wondering how you are Rachael?

Thanks for all your support, Neil and I really appreciate it - he's been as affected by all this as me from an emotional point of view, and your support means a lot ...

I got out of hospital on Saturday with a platelet count of 252 Dropped a little from Friday's 285 (which Neil told you about) - guess could be due to the 2 units of blood I had transfused on Friday night (apparently it can do that - more of why I needed that in a moment!), or could be things stabilising quite quickly - am not going to be pessimistic and think my count is falling until we're a few weeks down the line as my body's been through so many treatments in the last couple of weeks, who knows what's going on! I have another blood count tomorrow so will have an early indication then, anyway. I feel so much better, and improving every day - just been for a 2 mile walk in the park! I have 3 small scars which are healing nicely, and am only slightly tender in my abdomen now so have reduced the painkillers to just paracetamol (that's Tylenol in the US, I think?) - am going to be sensible about my recovery and take it very easy, not allowed to drive for a few weeks anyway.

My count was 55 at the start of the op - but they had to transfuse the 2 units of platelets they'd got ready as it was clear I wasn't clotting properly from the outset - count was 109 immediately afterwards, then 173 the day after, then 285 and 252 on Saturday. Since I had absolutely no emotional attachment to my spleen by the time the decision was made to go ahead with the op on Wednesday morning, I can safely say that I don't miss it one little bit!

So, the transfusions of 2 units of blood - needed because my haemoglobin levels were a bit low - in the 70's - and I had a few dizzy spells and palpitations in the hospital (which have been happening for a few weeks now in fact) and one major faint on Friday (a vesovagal syncope, I think it's called - heartbeat dropped to 28, blood pressure to 63/40 etc) that happened an hour before I was due to be discharged - my parents and Neil glad it happened in the hospital rather than at home! A bit of research this morning, and there are a few articles that link high doses of IVIG to anaemia, particularly if you are blood group A or B (I am group A) as IVIg can contain anti-A and anti-B antibodies, so of course you then destroy your own red blood cells and end up anaemic, giving all the symptoms I've been having for a few weeks. Anyone else heard of this or had similar reactions to IVIg? I've had weekly or twice weekly IVIg since the start of Jan, at 60mg or 70mg per dose, often on consecutive days - so if the research is right, that would explain a few things, which is a relief! Will talk to docs at the haematology clinic tomorrow about it to see what they think, anyway. Am on iron supplements anyway for a while, to take with my (now) daily antibiotics, so not a hardship!

Glad all is going well. Let us know how the count goes!

I was so glad to see your post and happy you are doing well despite a difficult time there at the hospital.

Wow, a 2 mile walk! You will be back to your old self soon.

I had a problem with anemia also after IVIG. It took about 3 months after it for me to get back to normal.

Good luck at the doc tomorrow.

Glad your splenectomy went well! Hope your counts go back up and you go in to remission.

Not the best news today - count 112, so a big drop from Saturday's 252. Am trying to be positive and telling myself that things can still stabilise and it's been successful if my count stays above 50 long term, but maybe I'd got my hopes up a wee bit too high there for a while, as my initial response to today's count is one of disappointment. Oh well, will keep an eye out for the usual symptoms, back at clinic in 2 weeks unless there's a drastic problem in the meantime ...

Hi Rachael,
Well at least you are still have a good and safe count. It is hard not to be disappointed when they drop. But like you said you just have to be above 50. Get some good walks in and keep your spirits up!

I'm in disappointment mode too as my counts are going down with decrease of prednisone to 10mg. At least steroid side effects at this level are not too bad.

Dru

Hi Dru,

Sorry to hear your counts are dropping ... disappointment mode sucks! Here's to both of us (and everyone else on this site) finding that safe count somehow.

I have just braved the Scottish winter for a walk in the park, same 2 miles as yesterday but sore today, probably because not taken any painkillers since I got up 9 hours ago, so am not too fussed. Slow and easy wins the race, have to keep telling myself that too!