Enlarged spleen and low platelets

[Jellybaby]

Hi,

I'm wondering if any one has the same
Issues as me I have liver disease due to my cf and it has caused me to have an extremely large spleen resulting in really low platelet count.

I need to have surgery on my back for other reasons but I can't because it would be too risky with my low platelets!

Have spoke to doctors and they said it wouldn't be good to take my spleen out and we have kind of run out of options has anyone had low platelets because of an enlarged spleen and do you know of anything or procedures that help? Anything would be appreciated so much!
Thanks

 

[randomgirl]

Yes!! I have this exact same problem. My liver and spleen were so big that I looked 8 months pregnant before my transplant. It has been almost 14 months since my double lung and liver transplant. My liver isn't big anymore (since it's a new liver) but my spleen is somewhat big and I still have low platelet count. A month ago, I was allowed to have sinus surgery even with low platelet count. Unfortunately, I have not been given any advice on how I can increase it except a blood transfusion. So I'm no help...sorry.

 

[Jellybaby]

@randomgirl oh so glad to hear I'm not the only one! Thanks for that glad your doing well!

 

[randomgirl]

You're welcome . I'm sure there's some more people too that just don't get on here. And thanks.

 

[Jellybaby]

@randomgirl just wondering, they were able to do your transplants with low platelets were they?

 

[randomgirl]

Yea they were. I ended up having so many blood transfusions (I think like 20) and it replaced all of the blood in my body twice. I'm talking about this all happened within the 13 hour surgery with my lungs and liver. I had to get bypass surgery during the transplant.

 

[Jellybaby]

Oh that's good that they could do it I'm suppose to have surgery on my back but because there would be so much blood loss they can't do it as I have something like 25 platelets, there all getting stored in my giant spleen! Thanks for that good to know there are ways around things if necessary!

 

[randomgirl]

Yea it was good. Hmm 25 platelets sounds pretty low...I don't remember my amount. Maybe you can ask for a blood transfusion before surgery? If you don't know, it's just a bag of blood they flow through your iv. They almost did that with me for sinus surgery but they decided I would be ok without it. Is your liver enlarged too?

 

[Jellybaby]

I will definitely ask about blood transfusions next time I'm with the doctor, thanks for that suggestion! And I do yeah big spleen big liver huge tummy!

 

[yanne]

I have the same problems; extremely enlarged speen and liver cirrhosis. And low blood platelets. There is a maximum of blood transfusions they can do in a year (I thought 8, but I could be wrong). I don't seem to have any physical problems like bruises, although my infections have dramatically increased the last three years.. I think I have lower immunity because of the liver- and spleen- problems. Plus I have Burkholderia Multivorans. Anyone got a golden combination like that? :s

 

[lilywing]

In additon to CF, I have an auto-immune disease that causes my body to destroy normal healthy platelets. It's called ITP (idiopathic thrombocytopenia purpura). I have had chronic, critically low platelet counts (under 20) for the last 13 years, and bleeding is a huge issue and concern with everything (ie - chest tubes, port placement, any surgery, and of course, future transplantation). I had a splenectomy in 2000, and have done relatively well without a spleen. My platelet condition was not helped however. But the cause of my low platelets is different than yours. I'm just saying that a spenectomy was not detrimental to my overall health. Obviously, I do any thing I can to avoid getting sick and coming in contact with sick people. But I did that before anyways.

 

[Jellybaby]

@lilywing thanks for your message its good to hear you're keeping well anyways there was talk of a splenectomy but same as you said the doctors wouldn't advise doing it because of infection etc. but I think it could still be an option...even if they took half of it out! They always look shocked when I say I have around 25 platelets least I'm not the only one, thanks for your help