Did I do the right thing ?

So I was schedule for my Spleen surgery today. have not seen my doctor in 2 months or had blood work done but when I went for my pre op they did a CBC got the results this morning and they were 44 . I was never certain about the surgery so this morning when the doctor can talk to me he's asked me why so many reservations about the surgery. they were unable to find a vein to put the IV in it seem like to me become a more complicated than it had to be and the doctor kept telling me I need to make my mind up because he was on time crunch so I decided to walk out and just go on watching my count with 44 I feel like I'm living a normal life . plus all the side effects from surgery and not having a spleen in my age of 27 is just too much for me to think about. so did I do the right thing ?

No one here can, or should, tell you if you did the right thing by walking out before you had your splenectomy. It is your body and you have to do what you feel is right for you.

Good luck to you!

thank you and your right. It seems like the more I think about it I just don't if the surgry is the right treatment. I'm just not sure if the surgry is worth the risk. With a count of 44 I feel like thats a good count for me.

Kimmie - I'd say go with what your gut is telling you. It's your decision.

Keep us posted!

I did the same thing, cancelled my surgery just days prior back in November.
I just wasn't convinced that it was necessary (at least at this point) and basically made the only decsion I could, which was to cancel and research more.
My platelet count has been in the 80-100 since then (after IVIG). But I know it can drop again at any time. If nothing else, then at least I have 'saved' this as still an option down the road should things become much worse.

I am also youngish at 35 and otherwise in very good health. I pray to have many years ahead and so think I need to keep all options open. It seems there are many more medications out there that I can try and I've learnt that sadly though they can be great, one human doctor might not know everything. It is my life so I will have to learn more to make the best choices.

I have young kids and though the doctors kept reassuring me against illness, I kept thinking about how often there is a sickness in our house. It would be impossible for me to go to the doctor whenever I get a fever or feeling unwell (which is the precaution the doctors told me I would need to take following the splenectomy). I did have the precautionary vaccines. But doctors advised without a spleen you are more suseptible to 'cocci' bacteria type (which the spleen normally filters).
Plus obviously concerned about going through it all and it doesn't help. Or that it helps for only a short time like 5years (I read somewhere success is considered a remission for at least 5 years). No offense to anyone, but that to me is 40 years old and so then what?
Also, what if there are new meds but you cannot take them if you had a splenectomy?

All these thoughts were considered and so I completely understand how you feel.
Like I said, maybe a time wil come when it is no longer much to debate, but they can cut you at any time (well hopefully counts are okay for surgery) but you can never go back and reverse the splenectomy.

Just this week I had a new issue with a likely TIA/minor stroke.
One thing this has shown me is that things change so no matter what choices you make, something new can come along and change everything again.

Kim, at least you did a reversible thing. A splenectomy is not reversible!

Yes, worse case you can have it in the future if you really need to. I've yet to get to the Rituxan step but if I ever do and that fails I will also be very, very leary of removing my spleen. Clearly you can live without one as people do even when lost through an accident but I'd rather not for the same reasons as all of you.

Living without a spleen can be different for people with autoimmune disorders, especially ITP. It's definitely a decision to weigh carefully.

I am newly diagnosed so what do I know...but I would say you definitely made the right choice. My hematologist said that he is happy if his ITP patients are feeling well with no significant symptoms and platelet counts settled at 40-60K which is, he says, out of the danger zone. Your platelets are your first line of defense to stem bleeding but they are not the ONLY line of defense; the body is amazing at having back ups and fail safes. He was aggressive in his initial management of mine with platelets at 3 and a bloody nose with petechia everywhere...but then told me we would begin watchful waiting. I know I am extremely fortunate so far as my platelets rebounded like gangbusters (at least so far) but I like his laid back approach. If you feel you are being pressured to make decisions you are not ready to make...I'd get a second opinion.

Kimmie,

I hope you are doing well. I think you did the correct thing. Keep up posted! hang in there!

Jeffrey

Thank you for all help.but they droped to 17 again. I have been on medical leave for 7 months now cause my job is a warehouse job not safe for low counts. Today my insurance informed me that my doctor released me to go back to work I was shocked I guess he got mad. I talked to the insurance and wrote an apeal but dont know what to do. Last time I worked they really wasnt listing to my doctor and my boss was yelling at me cause I looked tired all the time. Not for sure what to do. Should I seek a secind opintion? and is there other options for treatment?

Yes, there are many other treatment options. I don't know what you've tried, but there are these: Win-Rho, Rituxan, Decadron, Prednisone, IVIG, N-Plate, Promacta and a few others. Those are the most common ones.

well predison rituxuan chemo and immune surpresent pills i have tried but the others it seems that my doctor has no intrest in. told me that nplate cause lukemia but hasnt talked about the rest. Im starting to feel like if I dont look for answers my self I wont know the whole truth about things.

I have not heard of N-Plate causing leukemia. It can cause bone marrow problems but that is rare and goes away when the drug is stopped. Maybe time for a second opinion?

ya thats the point I am at right now I mad at the fact that he is not offering other treatment options and the fact that he wrote a person letter to my insurance letting them know it was ok for me to return to work with my count at 44 because I canceled my surgry. Now I am dealing with the insurance all over again. Its not a big deal but my job is not a safe place to work. any body know a good doctor in fort worth tx?

If I were you I would find a different doctor. With itp it is important to have a doc who will listen to you, discuss options with you and not be inpatient. Can you find another doc nearby? Also writing a letter to your work without talking to you does not seem right. My doc wont let me work with counts under 50 because I work with you children with special needs.



Dru

Come on guys, counts of 44 and 50 are 'do your normal thing' counts. Let's not allow ITP to take over.

That's true Ann And at home I would just act normally. I have gone to work at 30 but my doc is more conservative and she knows I have been bitten and kicked there. She just tells me I could go and do paperwork but not work with children.

And I like your attitude, I usually feel in control of this but right now at 6 am worried really for the first time since first diagnosed 8 yrs ago.

Ann you right and the letter was to the insurance and I tried to work with my job for 4 months of asking for light duty but there version of light duty was pushing carts and working pretty much normal task that was dangerouse. Plus threating to fire or demote me so I went on sick leave. I am meeting with my new boss monday he claims he has a safe job just for me I will see. And yes I am seeking a new doctor right now cause cbc every two weeks is pointless if the doc wont see me. I have considered a new job but I would lose insurance so no go. Its almost like I am trapped lol but thanks for all the help.

I had my spleen removed at 26 and I've has a remission and no known side effects. I have no complaints, but with so many options out there now I can say with total honesty I wouldn't have done it again. I'm happy not to have to deal with it anymore but at the same time I worry about the future. I think you made a good choice to wait, but if it's any peace of mind I'm happy, healthy and spleenless.

That makes me sad. I work with children with special needs as well and am rarely as high as 50. However, I have a great boss and coworkers who are willing to make accommodations for me such as lifting children for me if I need help. My doctor feels comfortable with that.

Thank you to everyone who has provided insight on this topic. I am going to Cleveland clinic on mon for a 2nd opinion. My hematologist has suggested after failing Nplate and rituxan to have a splenectomy but don't know if its the right thing for m

Yes, I was able to make a couple changes at work with having my assistant work with some of the challenging kids and helping move equipment. So I can work okay with lower counts if needed.