Should I do splenectomy or not?

Hello everyone!

I have been diagnosed with Autoimmune thrombocytopenic (ITP) at 10 years old. Today I am 30 years old. When I was a kid, my mom was taking care of me by giving me a special diet, by going to the doctors and so on. When I became a teen, my ITP was on in on, I mean was somewhere around 70. At age 18 my counts were normal, then 10 years I haven't check my blood, I didn't know how much my platelets were. All these 10 years I lived in Florida. In August 2015, I moved from FL to PA, and January 1st I noticed very heavy periods. I ignored that, thinking it will go away. Next, the period was the same way, then I decided to see the doctor. Next morning the doctor called me to my work and said that I must go to the ER since my platelets were 6. I didn't go to the ER, instead, I visited hematologist. The hematologist did IvIg at first, then Rituxan treatment. I was responding to IvIg, but not to Rituxan. My doctor suggested me to do splenectomy. By doing my resource, I suggested to try Promacta pills. Doctors agreed with me. At first, Promacta didn't help me, then we increased the dose. It still didn't really help me, then I suggested to do a Nplate injection. And from April 2016 till now I am doing the Nplate injection. I did try sometimes to skip a few weeks and see how my body will react. My platelets usually go down. Now, I kind of decided to do splenectomy, however, I am still not sure. I believe that life without a spleen can be so dangerous. Currently, I am on diet, trying to clean my body. I don't want to do splenectomy. However, I do want to have the kids. What are my best options? Can I be pregnant with ITP? While I am pregnant, can I do IVIG? Can somehow I can increase my platelets with some diet/lifestyle?
I have seen 3 different doctors. I asked them the same question "Can I be pregnant without doing splenectomy?" The first doctor said "no", second, "came to see me when you decide to have a baby", the third doctor said, "to ask your OBYGN".

Thank you so much,
Elena

Hi Elena,
I'm a newbie here (mom of a newly diagnosed 3-yer old), but I found it interesting that you mention geography. I wonder if there is a geographic concentration in the US.
As for pregnancy, I have read stories of women with ITP who did indeed go on to become pregnant and have healthy babies, and I believe they did receive IVIG prior to delivery. You will no doubt hear from the members here with much more experience.
Finally, regarding doctors, depending on your exact location and insurance, you may consider getting another opinion. A colleague of mine who has been living with a blood disorder has recommended Johns Hopkins in Baltimore or Sloan Kettering in New York City. We plan to get a second opinion at one of those unless my son's situation resolves quickly.
Wishing you the best.

Hi Elena. The decision of whether or not to have a splenectomy is a hard one. It often fails, sometimes right away and sometimes years down the line. It is also being used less often as an option because better options have come along, such as Promacta and N-Plate. Living without a spleen can be done, but as you said, there are risks. Not having a spleen can raise the risk of blood clots in those with ITP, so that is a factor to consider.

Women can and do have babies with ITP. IVIG or Prednisone can be used during the pregnancy.

When you said that you didn't respond to Promacta, did you mean that it didn't raise counts at all? How long did you try it?

Good luck in managing your decisions Elena. I've had ITP most of my life just like you (diagnosed around age 8 and am now 43!). When I was a child and there were fewer treatment options, I was given a splenectomy. It didn't really work and I've been managing my ITP ever since. Lately I've been using Promacta with limited success.
Regarding pregnancy, however, I managed to have three healthy boys while dealing with my ITP. I have always been relatively responsive to steroids, so I was able to manage my pregnancy with varying amounts of prednisone throughout. The third trimester was always the hardest time to keep my counts up, and the doses of prednisone were the worst then. They always had a goal of getting me to around 50 to be ready in case I needed a C-section, but I remember never quite being all the way there. Luckily, I was able to have all three naturally and never required surgery (never had an epidural either, which was what I would have wanted anyway, but something to look into if you really want one because it's not an option with low counts).
You can see a high risk ob/gyn to talk about your options with ITP. I would imagine that there have probably been improvements since I had my kids (My youngest is turning 12 today! Where does the time go?)
To readdress your main question about needing a splenectomy for a pregnancy, I would say that you certainly don't. While I did have one done on me as a child (I didn't get a say in it!), it certainly didn't cure my ITP or make things easier. It actually has changed the clotting Plenty of women on here have managed pregnancies and treatments during pregnancy without a splenectomy. Good luck as you decide about your options!

Elenita: If you read through the forums or just type splenectomy in the search bar there are hundreds of people who have been cured with splenectomy. It does not cure everyone but cures about 60%.
Any surgery is a risk, so you can have clots or even death.

Only reason I have not done it is I have a very active life style and I just dont like the downtime a major surgery of this sort will bring.

I wonder how long of a follow-up that 60% got?

i wouldn't touch my spleen. gold standard??? that doctor is an idiot( IMO).
my first hemo was pointing at my spleen and said if prednisone doesn't work we remove the spleen.
i removed him.

" My doctor suggested me to do splenectomy. By doing my resource, I suggested to try Promacta pills."
that is scary.... so no research no promacta...scary ... that doctor should be sued for malpractice.