1. Community
  2. Blood & Immune System
  3. Anaemia

Hereditary Sphereocytosis, Opinions wanted please

Posted , 3 users are following.

charmaine22
charmaine22

OPINIONS PLEASE 

I have tried and tried to reach a second opinion via pediatric haematologist but keep hitting road blocks as I am told the paediatric heamotolist team I see if the only one in our state. So no second opinion unless we travel.

My daughter has hereditary sphereocytosis from me. We have always generally been told that in my case my spleen should have been removed earlier then it was (3 years) as it caused complications which resulted in heart murmur and spleen 15 times its actual size. 

Now with this I was hoping to have my daughters spleen removed early on in life before it had the chance to cause any of these problems in my daughter. However I was now told no and to wait it out and see how she goes... She now has gallstone and is having hole gallbladder removed, she also has a heart murmur now. I asked if she had spleen removed back when i wanted it done would she have these problems now?? the answer they said is no she would not have gallbladder or heart murmur.

even with that they still want to leave her spleen in and just remove the gallbladder. I worry about further complications arising with spleen the longer it is left in....

what would you do ? have you had spleen removed and gallbladder at the same time ? How would you go about this ?

please and thank you 

0 likes, 2 replies

2 Replies

  • hudhud77817
    hudhud77817 charmaine22

    Posted

    Hello I have not had anything done but I read that they really don't like removing a spleen as it plays a important role in defending your body against infection. Also if they were to remove it your daughter would have to be on a low dose of antibiotics for her entire life. So it sounds very serious as time goes on they learn new things in medicine and maybe when they said that to you they have now realised it may not be the best thing for a person. Also having is she having her gallbladder removed entirely or just the stones?

    • charmaine22
      charmaine22 hudhud77817

      Posted

      Yes the hole gallbladder they've said there's no way to remove just the stones..

      yes I was deffinatly on antibiotics along time (20 yrs)

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.