Post Spleen Journey

Waiting to see the doctor now. Count is down to 5 this morning, with no blood thinners since Thursday.

Let us know!

If the pharmacy has it in stock, IVIG today and tomorrow then CBC Wednesday. If count is over 20 restart the blood thinner.

Good luck!

I just realized & I'm really not sure if I'm doing this right. Can I just write about my self here in someone's subject? I'm new to this forum and was so grateful to found this support group. Please correct me if I'm wrong.

Allie2

Allie, you could, but you'd get more personal attention if you started your own thread. It's better for you to start your own and it doesn't disrupt the thread that someone else started with their own topic or story. There is a term for jumping in on someone else's thread...it's called 'hijacking'.

Thank you so much for your guidance. My apology for my ignorance. I hope I have not offended anyone most especially "Post Spleen Journey"

Not at all! You're fine!

Count today only 7 and my other blood numbers caused my hemo to admit me to the hospital. They want to watch me closely for a day. Got to get the bleeding to stop or I'm going to have to get some blood.

Hoping for speedy recovery D.Mann...

Keep us posted, D. I hope things improve for you soon.

Sorry to hear this. Fingers crossed for you D

May you have strength and patience while going through this challenge!

Hi D.Mann,
I am sad and sorry that you have to go through all this! 7,000 platelets and be admitted. I hope it is a short admission and that you are back to feeling better and work again soon. My heart and good thoughts go out to you.
Be Well,
Cindy

Well my Hemo has named his special ITP patient.
Monday count 5, IVIG in the office and continue 50mg Promcta
Wednesday count 7, IVIG in office and up Promcta to 75, admitted to hospital due to hemoglobin 1 point from transfusion level and still bleeding.
Thursday count 6 hemoglobin up 0.5. IVIG, IV steroids twice, 75mg Promcta. I also received IV of something that will coat my GI tract to help stop the bleeding.
Friday if no bump in the count Rituxin 1 of 4 and IV steroids.
Hemo said he was going to throw the kitchen sink at me if needed to get the count up. Will probably try NPlate after I get out of the hospital for maintenance.

Thank you for taking the time to keep us updated. I cannot imagine how scary and frustrating all of this is for you. Words seem so useless, but know that you are in my thoughts and prayers.

Today is another opportunity day for your platelet count to be up. We're thinking you.

D.Mann wrote: Well my Hemo has named his special ITP patient.
Monday count 5, IVIG in the office and continue 50mg Promcta
Wednesday count 7, IVIG in office and up Promcta to 75, admitted to hospital due to hemoglobin 1 point from transfusion level and still bleeding.
Thursday count 6 hemoglobin up 0.5. IVIG, IV steroids twice, 75mg Promcta. I also received IV of something that will coat my GI tract to help stop the bleeding.
Friday if no bump in the count Rituxin 1 of 4 and IV steroids.
Hemo said he was going to throw the kitchen sink at me if needed to get the count up. Will probably try NPlate after I get out of the hospital for maintenance.

I'm so sorry that you are having such a difficult time of it. Does your doctor hold out any hope of the splenectomy having any positive effect on your counts at this point? Or is he just considering it a failure and moving forward with other treatments?

Hang in there! Thanks for keeping us all in the loop.

Yeah!!
Platelets have started increasing today. 4am blood draw was 17, up 10k finally and bleeding seems to have stopped or at least slowed significantly. Still will start the Rituxin today but probably no more IVIG unless the bleeding resumes.
Thank you all for your thoughts and prayers. I hope that the updates help someone get through a difficult treatment search.
Hal9000 how are you going to incorporate this treatment barrage into your spreadsheet. I may need my own column or tab. :lol: :lol:

Your definitely blazing a new path D.Mann. A really, really difficult new path. How to treat while trying to dissolve a clot. Even treating with something like Cyclosporine takes many weeks to take effect. The TPO agonists with a clot sound non productive.

I can't recall ever reading an old post about someone saying that they are currently treating for a clot...

My doctor said the spot the clot is lodged is a common one post spleen if counts sky rocket. He had seen it before, the surgeon said he had seen it post traumatic spleen.

Hal, we've had a few people here with clotting incidents. I've had a few personal e-mails also from people who have had clotting issues after splenectomy. One was the father of a teenager who kept having multiple clots after a failed splenectomy. She has been juggling low counts and blood thinners and in her case, may well have to do that for a very long time. Hopefully DMann's was a one time thing and once counts go up, he'll be good.

Hi,
I am glad things are improving!
I too am thinking about you and sending prayers for you to be past the clot and low platelet issues.
Be Well,
Cindy

D.Mann, I looked through all the posts with the word 'clot' in the subject line, but didn't really get anywhere. Like, a reference to the 'portal vein' leaves me in the dark. Maybe you can get something out of them...

Sandi, perhaps this post by 'aclow' is who you were thinking of?

My clot is a portal vein clot. It is slightly above where it all turns to a single vein.

Hal, that's one. Kelirae is another one off the top of my head. I'll look tomorrow.

My count was up to 27K Saturday and I am finally home. No bleeding now and full of IVIG, Steroids, and Rituxin. The last 2 days my count increased 22K after 4 days of no increase.

D.Mann wrote: My count was up to 27K Saturday and I am finally home. No bleeding now and full of IVIG, Steroids, and Rituxin. The last 2 days my count increased 22K after 4 days of no increase.

Congratulations on breaking out of hospital jail. Here's hoping that you are onwards and upwards with the counts (but no clots!) moving forward. Good news!

Your story I should say itp life sounds so similar to mine I had to respond. I went in for my 50th birthday to get routine physical to show everyone how healthy I was. Rarely sick never miss work overweight has been my biggest challenge. I do have a clotting disorder called factor v that pretty much everyone in my family has. My dr called me almost immediately to tell me I needed to talk to oncology because my platelets were so low. They put me on prednisone platelets went up for a week. Next I had Rituxan didn't even work 2 weeks. The next call was to schedule my splenectomy. All of this was in a year of being told I had itp. I had laparoscopic splenectomy nearly 3 years ago they did not put me on blood thinner which due to factor v and a platelet count in the 500's I should have insisted. So a week later portal vein blood clot pain so bad sounded like you know that pain. So in three years post splenectomy gradual decrease of platelets with last 2/3 weeks hitting 16. I have been on blood thinner entire time because I did get a second blood clot in my leg. Labor Day weekend they put me on high dose dexamethesone that's when they fell to 16 but they left me on the blood thinner and think I was bleeding internally so last weekend same dose of dexamethesone and no blood thinner and Friday my platelets were over 700. Ithey put me on low dose levenox but I'm scared of course blood clot labs tmrw I think I have a superficial blood clot on a varicose vein so they may increase blood thinner. I found the website on my own I tell all the drs to refer patients I have never felt so confused so hopeless because I never heard of it I don't know anyone with it and this site has brought me hope and helps to not feel alone in this. The drs at least at my hmo are sadly busy with cancer patients way more sick than I am. So this helps so much. I hope you are feeling better I'm sorry I talked so much lol just had to share with you.

And I just realized as I am a newbie too that I hijacked my apologies