Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

hereditary spherocytosis

hspherocytosis
0 Recommendations

it seems like everyone has had or known someone who has had their spleens removed becuase of hs.i have hs and i am 23 and still have my spleen. it has been enlarging over the last few years. i am told i should have it removed asap along with my gallbladder(b/c of gallstones) i am scared to have it removed. i am very concerned to find out how different your health is affected after having the spleen removed. mainly ... what about the yellowness of the eyes and skin? mine are constantly yellow. for those of you who have had it removed are the eyes ever yellow now? were they before splenectomy? what if i dont have my spleen removed?

Explore topics in this discussion:

Surgery Jaundice Pain Gallstones Spherocytosis Anemia

8 replies

MommywithHS

Hi. I'm 19 and I have HS as well as my 2 year old son. I had my spleen and gallbladder removed when I was 15. Before the splenectomy, I was constantly yellow. My skin and eyes and the day after my surgery, I had normal color and the whites of my eyes were white for once! Its not as scary as you think when you have your spleen removed. My spleen is so enlarged that it had connected itself to another organ. My son was diagnosed with it at 2 days old. He wasnt able to come home with me after birth, he stayed an extra 5 days because of his jaundice. My son is number 9 in the family with HS as far back as we know and only the 3rd boy. When my family first discovered that we had HS in our family, it only showed up in the girls. My mom and her 3 sisters had it. All had spleens removed before age 10. My 2 boy cousins had theirs removed for age 8, and my son is 2 and is doing pretty well with it as for now. He did have a blood transfusion at 20 days old. As for I, I had one transfusion my entire life, at the age of 4. I am so happy to hear of more people other than my family with it. Please, email me to talk more.

cemebel7

My 2 year old has just been diagnosed with it along with my 10 yr old (who was jaundiced at birth). So three out of five of my kids have it. We believe at this point my husband had it along with his mom(who is now deceased) Some other family members have said they will get tested others have said no they won't. My son has had no issues that we know of. My two year was hospitalized before diagnosis and released when they figured it out. My husband had his spleen removed at 4 years of age and didn't know why. Now we think this is why. He has had no issues and was shocked to find out about this. He also has never been yellow as to spleen removal removes the hemolytic process of this disorder.

jon123

I was born with Spherocytosis and was diagnosed at the age of 2; I was constantly yellow. At the Age of 9, I had my splean removed. I immidietly became pinkish/red. All the yellow in skin and eyes went away. and my HGB shot up from 8 to 14. Also I didn't have any Gall bladder stones. I really think you shouldn't fear surgery, it helpped me a lot.
My two kids (twins) have the deseases. they are aged 3; the boy needed 7 transfutions and the girl 3. I hope they never need more.
Once they reach age 5 , we will see what to do about surgery.
Best of luck

robertjo

Get it out before it gets too big to do laproscopically. (did i spell that right?) I was cut from by sternum to below my belly button. They removed my gall bladder and a huge spleen. Lots and lots of pain.....and pain meds. On my back for a week and then out of work for a month. One big scar and it actually blew out after 20 years and i had to get a kevlar patch!

Neeners

Honey - it is totally resonable that you would be nervous about surgery, but I would agree with the others here. Have it taken out - AND THE GALL BLADDER TOO - asap. You will feel better than you ever have. Aren't you dealing with anemia and fatigue along with the jaundice? You're also likely having quite a bit of pain that maybe you've just learned to deal with - but you don't have to!

It is actually dangerous to NOT treat this disorder with surgery once you get to the point you are at. Your blood is NOT cleaning itself and regenerating itself the way it is supposed to. Your blood is likely clotting too much and backing up in the system because it can't get through the spleen and gall bladder to be processed normally, because of the mis-shapened blood cells associated with this disorder. You don't wanna be messin' around with that!
Without surgery - Your spleen can rupture, leading to sceptic shock. You will also eventually deal with Kidney damage. And those can't be fixed!

By the way, it's not uncommon at all to not get to this point until your twenties. This disorder is highly variable in the way it presents in people and how it progresses. Often it goes undiagnosed because it can be so variable. Often it is underestimated for this reason as well.

If your spleen is enlarged, that is VERY serious, and must be remedied ASAP! Get the surgery scheduled and get on with your life! You'll be glad you did! Also be glad you have a doc that is willing to take the gall bladder too! Otherwise, you'd likely be back in the O.R. in the future to get it out anyway.

The surgery is pretty easy to get through, really. Your stomach muscles will hurt like &@#* for a few days. Make sure you have friends and family around you to help you for those few days. You'll be surprised how well you bounce back, really. Make sure they watch you very closely for infection right after the surgery.

You'll do great.
Blessings to you!

roboticagirl

I am 30 and was diagnosed with HS at age 2 when I had to have transfusions. I had no major problems with my HS growing up and I still happily have my spleen. I did however have my gallbladder removed at the age of 21. If your spleen is that enlarged you probably do need to have it removed, but I would ask more questions about having your gallbladder removed. Not having a gallbladder can cause problems with digestion etc. I would only have it removed it absolutely necessary. Once you get your spleen removed the risk of developing pigment stones should be gone right? i'm not a doctor, but ask lots of questions and even get a second opinion. A doctor wanted to take out my spleen when I was 19. I got a second opinion at the University of Washington Medical Center (one of the best hospitals in the US) and they advised me to NOT have my spleen removed. Good luck!

kmevery

I am 20 years old and had my spleen removed when I was 5. I HIGHLY recomend having it removed, if you are not having gall bladder symptoms, then leave it. When my spleen was removed my apendix was removed too. As for being scared, if you know you will be fine, then you will be. My advice is to have the surgery, just look at how many people have had it and survived, I have yet to hear about a death during a splenectomy. And the scar won't be too bad, mine is about 11 in. long, it goes horizontally from just above my bellybutton, to just around my back. Just ask your doctor flat out any questions or fears you might have. I live in MN and if my doctor can't answer my question with confidence he calls a specialist at the Rochester Mayo Health System here in MN, I'm not sure of his name, but I know he has helped me on more than one occation.

roboticagirl

Has anyone had biliary stones? I may have one/many right now. I go in for an MRCP soon which is an MRI to look at the biliary system. I still have my spleen and am wondering if I should finally have it removed because I don't want to have to worry about developing biliary stones again in the future. The procedure to removed them (ERCP) has lots of risks. Am I correct in thinking that once you have your spleen removed you no longer run the risk of developing pigment stones. I had my galldbladder out 8 years ago because of stones.

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You