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TOPIC: Post Spleen Journey

Post Spleen Journey 1 year 8 months ago #60046

  • D.Mann
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Well I have started my ITP journey post spleen. My surgery was Tuesday, August 2. It was a laparoscopic procedure that went pretty well. I had some scar tissue from a hernia surgery and my spleen was attached to my stomach more that usual. Both caused extra time in the surgery and a few extra days in the hospital. I came home Friday. Getting rid of the gas has been the worst part. I am sore but no real pain except when the gas bubbles get stuck.
Platelet counts:
Week before surgery 143
Day of surgery 45
Day after surgery 15 given 2 doses of IVIG
Friday 89
Visit the Hemo on Wednesday. He said it will be about 6 weeks to know if the surgery was successful.

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Post Spleen Journey 1 year 8 months ago #60048

  • Sandi
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I'm glad the surgery went well. Most people do complain about the gas being the worst part. I hope it goes away for you soon.

Prior to splenectomy, how long did IVIG last for you?

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Post Spleen Journey 1 year 8 months ago #60051

  • D.Mann
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I generally peaked at 1-1.5 weeks and started dropping slowly. Total time with elevated counts ~3 weeks.

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Post Spleen Journey 1 year 8 months ago #60052

  • Sandi
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You should have some idea if it worked or not based on what your counts do over the next few weeks. This isn't the best start. A good indication of success would be counts over a million the following day, however, I've seen people rebound even a few months later with counts that stay above treatment level. Hopefully when you hit your IVIG peak, they will just stay there. I have my fingers crossed for you and hope for the best!
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Post Spleen Journey 1 year 8 months ago #60071

  • Hal9000
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Oh good, they were able to do it laparoscopically. I remember after my appendectomy and looking down at my bloated belly. It was like, what's the deal with this. I need to loose a bunch of weight.

Good luck. Hoping for the best !
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Post Spleen Journey 1 year 8 months ago #60074

  • D.Mann
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Sunday was a really bad day but today all is well. My belly is soft again so I guess most of the gas is gone.

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Post Spleen Journey 1 year 8 months ago #60104

  • D.Mann
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Hemo visit today. Platelets at 358 without any meds. Had 2 IVIG in the hospital, Wednesday and Thursday last week. My highest count since diagnosis prior was 174 after 3 IVIG. Still have soreness but no real pain. Get another count in 2 weeks, then weekly for 6 weeks.

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Post Spleen Journey 1 year 8 months ago #60105

  • Hal9000
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Hard to complain about normal range numbers...

I think they told me not to lift anything over 10 / 25 lbs after lap. surgery. The lawn mower is self propelled so I didn't see any harm with mowing the yard after a couple of days. Probably shouldn't have, but it was no problem.
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Post Spleen Journey 1 year 8 months ago #60106

  • Sandi
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That's good news! I hope it stays that way!
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Post Spleen Journey 1 year 8 months ago #60108

  • CindyL
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Great news! Hope they stay that high.
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Post Spleen Journey 1 year 8 months ago #60110

  • mrsb04
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No meds how wonderful
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Post Spleen Journey 1 year 8 months ago #60159

  • D.Mann
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I was super excited about the 358 count earlier this week, now not so much. I developed sever pain in my gut Wednesday night along with a low grade fever. Called the doctor yesterday morning due to the pain. They said it sounds like your gall bladder. Blood work and CT scan reveled I have a blood clot between my liver and colon. Started blood thinner last night to break up the clot. Hemo said that it was not uncommon to see when the count jumps so high that quickly. At least its not another surgery.

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Post Spleen Journey 1 year 8 months ago #60161

  • mrsb04
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So sorry to hear this. I hope all goes well with blood thinner
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Post Spleen Journey 1 year 8 months ago #60162

  • D.Mann
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First dose seemed to help overnight. My daughter just gave me my 2nd injection. I was able to sleep last night, that helped for sure. The doctor said it I a fairly common thing to happen with this surgery.

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Post Spleen Journey 1 year 8 months ago #60163

  • Sandi
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Sorry to hear that. Yes, blood clots post splenectomy is one of the risks. I hope it resolves soon.
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Post Spleen Journey 1 year 8 months ago #60165

  • Hal9000
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D.Mann, did the doc suggest the clot was from cauterization around the removed spleen, or, because of high counts?

On a side note, I'm taking low dose aspirin while holding counts around 100 for upcoming colonoscopy. It was my idea to take the aspirin and my hema is ok with it. I get head aches with higher counts and the low dose aspirin is effective in stopping them.

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Post Spleen Journey 1 year 8 months ago #60167

  • D.Mann
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Hal, the doctor said it was caused from the rapid increase in platelets. I guess all those new, big, sticky platelets clogged up the works. I don't believe it was from cauterization since it is between my liver and colon.

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Post Spleen Journey 1 year 8 months ago #60193

  • Sandi
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How's it going? I'm assuming that no news is good news.

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Post Spleen Journey 1 year 8 months ago #60194

  • D.Mann
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Well I just got back from my Hemo. I started having active bleeding and mouth blisters early this morning. Seems the blood thinner worked so well that my count has dropped to 13. They want me to stop the injections and start back on Promcta for a week or so to boost my count back up slowly. I see him the next 2 Wednesday's to monitor the count. I'm still having pain from the clot on top of everything. I'm very discussed with it all right now. Looking back I probably should have done platelets after surgery and not 2 IVIG. Then after the clot was found they should have monitored my count closely to avoid what has happened now.
I hope this information gives someone the right questions to ask and the knowledge to avoid going through the same thing. This really sucks right now.

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Post Spleen Journey 1 year 8 months ago #60196

  • midwest6708
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Post Spleen Journey 1 year 8 months ago #60199

  • Sandi
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Well that's not good news. I'm sorry to hear that.

Please don't kick yourself. Platelets after the surgery probably wouldn't have done much. You most likely would have continued to drop.

Blood thinners usually don't cause a platelet count to drop. Heparin can, but only if you have certain antibodies. If a person has ITP, heparin probably shouldn't be used and should be substituted with another one.

www.ncbi.nlm.nih.gov/pmc/articles/PMC2600013/

This is my thought on the clot, for what it's worth. Clots are a known complication of ITP but there are too many doctors who are not aware of that. Clots can occur along with ITP when counts are high or low. ITP can be a thrombotic disorder. I try to make that known here, but I also try not to sound like Chicken Little and scare everyone. I hope this was a one-time thing for you but just in case it isn't, you should ask your doctor to test for APS or other clotting disorders. Having that information can impact your treatment choices in the future. Clotting is more common while using a TPO or after splenectomy (not just after the surgery, sometimes for a lifetime) and if a person has a clotting disorder, it needs to be managed carefully. I once read an article in Blood Journal that stated that the body may sometimes lower platelets on purpose as a protective measure against a possible clotting issue. That stuck with me and after all these years of hearing ITP stories, I believe it.

This is a good four minute thirty second video that discusses it.

www.onclive.com/insights-archive/immune-thrombocytopenia/risk-of-thrombosis-in-patients-with-itp

I can't remember if you responded to Promacta before the surgery. You should probably ease up on the dose just to be on the safe side.
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Post Spleen Journey 1 year 8 months ago #60201

  • MommaBear
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Sorry to hear about your struggles post-splenectomy. That's a bummer! Hang in there. It will get better.

I wonder if they had waited one more day before giving you the IVIG what your count would have been, or if they had only given you one dose versus two.

Dr. Kuter told me that in patients with ITP, platelets are very effective at low numbers, sometimes even more effective than at high numbers. Just a thought.

I personally would avoid the Promacta for now, if at all possible seeing that you had a clot. Do you respond to Prednisone? Can they put you on a small dose?
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Post Spleen Journey 1 year 8 months ago #60202

  • D.Mann
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Promacta is the only thing that worked for me before surgery. That is one reason I tried removing the spleen. If the results are close to pre-surgery, I will still stay below 100.

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Post Spleen Journey 1 year 8 months ago #60206

  • Sandi
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Just be careful, okay?
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Post Spleen Journey 1 year 8 months ago #60210

  • mrsb04
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As Sandi says please be careful, I'd settle for a count of 50 at the moment
Am I correct in assuming you initially received injections to dissolve the clot? And if so they contained heparin is some form.
I've come across Heparin induce Thrombocytopaenia (HIT) many times over the years in the course of my job.. I just wonder if you've developed it.

This is an interesting article if you can find anywhere to get hold of it in full anywhere ( I managed it free through my nursing account). It states there are 2 types of HIT & it is usually transient. www.ncbi.nlm.nih.gov/labs/articles/14593977/
This is quite a good read too
www.ncbi.nlm.nih.gov/pmc/articles/PMC2600013/
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Post Spleen Journey 1 year 8 months ago #60216

  • Sandi
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MrsB - does Warfarin contain Heparin? I thought they were totally different.

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Post Spleen Journey 1 year 8 months ago #60219

  • mrsb04
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Not to my knowledge. As far as I am aware they act on different parts of the clotting cascade. Heparin inhibits thrombin production whereas Warfarin has an effect on Vitamin K synthesis & calcium.

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Post Spleen Journey 1 year 8 months ago #60220

  • Sandi
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Ok, that makes sense.

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Post Spleen Journey 1 year 7 months ago #60384

  • Sandi
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Hey DMann - how are you doing? Check in time!

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Post Spleen Journey 1 year 7 months ago #60392

  • D.Mann
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Well I'm still not back to work. After I was on the blood thinner my count crashed. I'm doing good count wise, 94 on Wednesday. I'm still dealing with pain from the clot or something else yet to be seen. I am having another CT scan next week to evaluate it all. The surgery has healed well, if this other stuff hadn't popped up I would be great. I'm feeling better everyday.

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