Was diagnosed in 2003 splenectomy decision

I was diagnosed in 2003 and my dr was seriously anti spleen I am so sick of people saying u should have kept it cause it didn't make a difference, I'm aware it didn't make a difference but why can't people keep their opinions to themselves nothing worked on me back then and nplate was no where around. I have gotten this from drs and nurses it's do frustrating just because they act like it was a decision taken lightly. I was 17 and was told it would cure me. If I could go back I would of kept the spleen bug it's a little late for that and I don't need to be reminded all the time lol does this happen to anyone else?

Keli:

From what I see here, very few doctors seem to be anti-splenectomy so I don't think people hear that very often. If anything, the opposite is true and most of the time people are hounded or made to feel guilty for not choosing splenectomy.

I believe that everyone should do research and make an informed decision about splenectomy prior to agreeing to it. However, you were very young and since nothing works for you at all, having the splenectomy was probably not a bad choice in your case. There are times when it is warranted to try, and yours was most likely one of those situations. Someone obviously steered you in that direction at the time, so you were only doing what you thought was best. You don't owe anyone an explanation or a justification of your choice. Don't let it bother you, ok?

Thank you

Splenectomy was and still is for some people an accepted treatment for ITP. People should not give you a hard time about it!

I think you are very brave and strong to have gone through ITP at such a young age! It must have been frightening because its not a simple illness with a cause and cure. You made a good decision at the time with what was available for treatments. Hey, we've all made mistakes on this ITP journey! :pinch: If I knew 6 years ago what I know now, I would have done everything differently- I think lots of us would have! But live and learn.

Its hard for someone like a nurse to understand- they may have never been sick in their lives. My primary care doctor is very sweet but shes kind of young. She suggested that the reason I haven't gotten off of prednisone is because I am dependent on "the buzz", as if I like it too much to quit. I was so stunned by such a dumb statement that I didn't even respond. I dislike prednisone so much that I'd never considered such an idea. All I can figure is that she's NEVER ever had to take it so has no idea what she's saying.

Hope you're pregnancy is going well! So exciting- we do grow and mature through tough times and it can make us better parents. good luck!

The buzz? I don't know whether to laugh or feel angry for you. I've had doctors make weird statements like that but I never think of the right thing to retort until after I leave. Not quick on my feet, probably due to that Prednisone buzz I always have.

The Buzz??? Obviously this dear doctor has never had the joy of taking a high dose of prednisone!

Keli you did not make your decision lightly - and really you don't have to justify that decision to anyone. You did what you felt you had to do and that is that!

I've fired doctors before. I do have to start being a bit more tolerant though because I am running out of choices around here. I'm on Rheumatologist #6 or #7 in 9 years. They are hard to find. I fired one a few years ago and moved to another group only to end up seeing her again a few years later because she moved to the group I'd just joined. She was filling in for my Rheumatologist who was on maternity leave. Irony. She's the one who, when I first started with neuropathy, told me that it was in no way a symptom of Lupus and that I probably had MS. She said it like it was no big deal and walked out. Appointment over. Many of the people that I know with Lupus also have neuropathy and there are a lot of articles about the two. How could she not know that since Lupus is widely known to cause inflammation in every imaginable way?

My current Rheumatologist has said some insensitive things also, but she does work with me to find the best solutions. I have to keep her because I have no where else to go.

Group: I went to a local pdsa support group last week. We talked about how doctors should have to take high dose steroids as part of their training like police have to be tazed as part of training.

Kellirae- how are things going with your pregnancy? I haven't been on here in a while.

Omg the buzz I think I would of smacked the dr lol prednisone actually all the steroids are horrible! My pregnancy so far is goin pretty good I'm almost 11 weeks been getting 85000 mg of ivig a week my platelets were down to 9 this week so I got a lil more ivig then usual so I'm exhausted from all the freakin Benedryl and ivig I suppose but it will so be worth it me and my fiancé are so excited. We've been together 11 years right after I was diagnosed and been by me threw it all. Just hoping everything continues to go well and hoping this ivig stays working for another 30ish weeks lol

Sandi I'm right there with you with doctors I love in a small town in Florida and I'm tapped out in the dr department lol kinda stuck where I am on hematologist but for my high risk obgyn I have to drive about 45 mins to Orlando but it's Winnie Palmer heard their the best.

/Vdeutsch85 great idea with the drs having to take steroids lol

I'm glad to hear your pregnancy is going well! . If you have time you can look up articles by dr. Keith mccrae. He was my doctor at Cleveland clinic and has written articles about ITP and pregnancy. He is a wealth of info.

About the choice to have a splenectomy. I feel that we are all in itp together. We should be here to support one another no matter what decisions he or she makes. I know that we all have opinions including myself, but we should know when to draw the line so we don't hurt others. I'm sorry that people are hurting your feelings.

I'm glad that I'm not the only one in this age group with itp. You are showing me that there are ups and downs in life but can find true happiness from your 11 year battle. I'm glad you are fulfilling your dream of having a baby. I too would like to have one in the next few years.

There are for sure up and downs and when I was 17 and diagnosed I had a small pitty party lol and thankfully I have two people in my life who pull me right out of it my mom and my fiancé who have been there for the 11 years watched me struggle at times but I also realize there are worse things to have which turn me right around. When I had my stroke my mom and fiancé gave me about a month to sulk then made me get up work out do physical therapy which left me with only a small residual numbness in my ulner nerve. I got out of that so lucky and so lucky to have people push me to remain being happy and being the person I always have been with or without itp. I owe them both so much I don't think they have any idea what they really did for me

Keli

I get comments all the time about removing my spleen. Every doctor wants to know why I don't just remove my spleen and cure my ITP. I even have a sister who agree's with them. One day I sat down and talked to her and told her the possible complications that can happen when you have the spleen removed since than she doesn't bring it up. I am against removing my spleen but just because I do agree with removing it doesn't mean I'm right. I tell people to research make informed decisions. I do not believe in blindly following doctors.

I love the idea of doctors having to take some of the medications they prescribe. Maybe than they will get an understanding of why people like me refuse them!

Glad to the hear the pregnancy is going good. Sorry to hear you have to have IVIG (person opinion) I hated the stuff the side effects for me were horrible. I drive 40 minutes to see my doctor my next option is diving over 1hr away. I wish I could fire my hemo (like Sandi has) but I do not want to drive further.

Yeah, it gets to the point where you end up having no choice but to go to another state! I won't do that unless my life is on the line.