Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: CUSO on January 24, 2013, 11:49:38 PM
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In addition, I have Gilberts Syndrome. And when you combine those 2, I am also having severe Gallbladder problems.
I Know it is my gallbladder even though the ultrasound and HIDA came in clear. My oncologist believes that also. It is frustrating because I am healthy other than the painfull gallbladder and the huge spleen.
The GB issue started in October. Many severe classic attacks. My right shoulder is killing me. I almost cried when the ultrasound tech was scanning, and I was sure they would find stones, but nada. Then in Dec my spleen started to swell pretty quickly. They did a PET scan and there is no cancer at all.
Dr said he suggests spleen removal and GB removal. I am 100% with the gallbladder removal, buy i am only 98% with the spleen. My mother had hers removed at 38 also. Now she has to take chemo now due to too many platelets. I am nervous about the spleen being removed, but I am in pain from it. I know my condition is not as serious as most. I was bodybuilding untill october when GB began. I have lost 30 pounds of muscle since then. I should have no problem getting it back, right? Thanks. just a bit nervous about the spleen removal. Once it gets this big, would it ever shrink? Thanks
HI DONNA
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Donna,
Try to maintain good Hb by taking foods which are rich in iron. Spleen is enlarged due to low hb. If you maintain good hb, you should start seeing it getting shrink and back to normal. Moreover your doc might suggest iron tablets additionally if hb is low.
-P.
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I dont think I have a choice at this point. My spleen is causing pressure on my kidney, lots of left shoulder/back pain. it is sensitive in the front as well. dr did say i have a cyst on it as well. he said it wont shrink. looks like i have a baseball sticking out my left front torso. It is just do darn uncomfortable. When you put my gallbladder pain into the mix, It all hurts..... I need to get them out to get on with my life. I am down 30 pounds since october.
Any post splenectomy advice will be welcomed. I am scared a bit. OPSI is scaring the hell out of me. My mom in her late 50's is now dealing with incredibly high platelets. I assume I will be dealing with the same.
Once my spleen and gallbladder are gone will I be able to resume my bodybuilding?
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Donna,
Once you are healed from the surgery, there is no reason you cannot resume bodybuilding. The combination of Gilbert's Syndrome and thal minor does lead to gallstones, and it may be that you have a stone lodged in a duct that is causing the pain. The spleen size is unusual in thal minor, but not unheard of, as minors do often have enlarged spleens, but not of that magnitude. But it does happen due to a high rate of red blood cell turnover or hemolysis. Regardless of the cause, the description you've provided of your spleen size presents a spleen that is in danger of rupture from a sharp blow.
Once you have had a splenectomy, you want to guard against clotting issues and pulmonary hypertension (PHT or PAH). Natural vitamin E complex can help you avoid the clotting issues. L-carnitine or L-arginine supplements can help you avoid PHT. If you've been bodybuilding, you may already be taking this. Think antioxidants, both supplements and diet. The high rate of hemolysis leads to a high rate of oxidation in the body and this must be countered to maintain good health.
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Andy, thanks. Actually my name is Mark, I said Hi Donna because I knew my mother in law was reading this and I was saying hi to her.
I am really nervous about this surgery. I weighed 230 all muscle in October, today I am 200 and I lost it all.
So since I am suffering classic Gallbladder problems but all the tests show my gallbladder is fine, you think there might be a stone in a duct? The oncologist is just putting my Gilberts and Thal together and deducing that my GB is bad.
The things about my spleen that make me nervous are germs. I have 2 small kids who are like little Petri dishes of germs. Also I like to fly a lot, so being on comercial airlines with people all around, is that dangerous? So vitamin E will help me be proactive with the platelet issue I may face in a few years? Dr said in 2 weeks I can begin lifting again, sound right to you? He will do it laparoscopically. I know I am rambling but I am very nervous.
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Sorry about that Mark. How big is your spleen?
Vitamin E is a mild blood thinner and powerful antioxidant. It can help reduce the danger of clotting and also helps to counter the oxidative stresses that are caused by the high rate of hemolysis you are experiencing.
There has to be an explanation for your gallbladder pain and that would involve gallstones, whether or not they are easily detected. Gallstones blocking a duct can be extremely painful, so this is a real possibility. Thal minor alone greatly increases the possibility of gallstones and Gilbert's magnifies that risk. However, the combination does not create such severe symptoms in most patients. Because we occasionally hear from a beta minor who has symptoms of favism, I think you should review the list of antagonistic substances that can cause hemolysis. It is named favism after fava beans, which are a broad bean, but it can also be related to ingestion of certain medicines or chemical exposures. Your high rate of hemolysis is unexplained but is evident by your large spleen. See the link at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830
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Here is update after seeing my surgeon.
He said they both new to be removed. I did not get the measurement but he kept calling my spleen "massive" and all of the dr.s that have seen it and felt it were astonished. He said there is no way to remove it laproscally. Now it appears we are looking at long recovery time. Add to that I need 2 vaccinations that I need 14 days prior (gettin them tomorrow) and my wife Goin to Europe for 9 days on the 17th. I probably won't even have surgery untill the end of Feb. damn.
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Update. Surgeon called today. I will be getting spleen and gb removed on Wed feb 6. 1 day before my birthday. I am gla this will be over, but I am nervous as hell. As I said before, this will not be laparoscopically done, the will be a big insouciant because the spleen is so damn big. Any pre/post operative advice? I will be in the hospital for 4 days.
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Make sure you understand the post-splenectomy requirements concerning the pneumovax vaccine and daily use of antibiotics. It is common to take daily antibiotics for 1-5 years or more after a splenectomy. Talk to your doctor about this. Also, be aware that there may need to be some alterations to your diet after the gallbladder is removed, if you consume foods high in animal fat.
I know you're nervous about the surgery, but it is a fairly common procedure and many thal intermedia and majors have had it. Our member Nur had a huge spleen removed (25 cm) without any problem, and she is not a large person.
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ALL THE BEST AND HAPPY BIRTH DAY IN ADVANCE.
DONT FEEL NERVEOUS AND FOR THE BIRTHDAY ALSO . YOU WILL RECEIVE SPLEENECTOMY BENEFITS ALSO FOR THE LIFE TIME
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Dear Mark,
I wish you a successful surgery and fast recovery! I hope you feel better after the removal of your gallbladder and spleen.
Please give us your feedback on how you feel after the surgery and how you cope with the new challenges of removed spleen.
It's really important for us (I believe) to have feedback from people that underwent spleen removal.
Best of luck!
Mart
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Surgery was 3 days ago. Gallbladder was removed lapro, and spleen was open. In my bwlly it was over 25cm. After it was pulled out It was 18cm. The doctor took a picture of it. I do t know if I can post that or not. Just now 3 days after surgery, I am getting 2 pints of blood. I feel terrible, but doc says it was because my hemoglobin was so low. I am halfway through my transfusion. Will keep posted
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That's a pretty big spleen. It's size did pose a danger to your life from accidental rupture, so removal was the best course. I think you will feel much better once your Hb is higher. Good luck with your recovery.
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My first day home after surgery. My spleen was 1900 grams. Their was a vein running down the middle of the spleen that was the diameter of a thumb. I am sore. My platelets are holding at 420. 3 days after the splenectomy, my hemoglobin crashed to 6? I think. They transfused 3 units of blood. I remember nothing at all for 48 hours after. I feel ok now. I hate taking pain meds because they are making me feel terrible. Hydrocodone always makes me feel ill. Any alternatives? I do have a pic of the spleen if anyone wants to see it
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My first day home after surgery. My spleen was 1900 grams. Their was a vein running down the middle of the spleen that was the diameter of a thumb. I am sore. My platelets are holding at 420. 3 days after the splenectomy, my hemoglobin crashed to 6? I think. They transfused 3 units of blood. I remember nothing at all for 48 hours after. I feel ok now. I hate taking pain meds because they are making me feel terrible. Hydrocodone always makes me feel ill. Any alternatives? I do have a pic of the spleen if anyone wants to see it
I'd want to see the spleen pic, just curious. 2 Kg, hmm, that's huge.
Hope you'll feel better, you'd feel glad in future for this courageous step of yours.
As for painkiller, try ibuprofen.
-P.
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Wish you speedy recovery
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Here is a pic of my spleen.... The ruler is 15cm, dr said spleen was over 20cm in my body. it weighed 1900 grams.
today has been the start of my first good day since the surgery exactly 1 week ago. I am not going to lie, for me i had a very rough day 2 and 3 post op, probably because my hemoglobin was out of wack, also becacuse i became aware of my incisicins and they freak me out more than anything. but i almost feel great day 7. I stopped the pain meds yeasterday and I dramatically started feeling better. STOP PAIN MEDS AS SOON AS POSSIBLE, THAT IS KEY. Dont suffer though. I go get 2 vaccinations next week, and a visit to surgeon. then oncologist wants to visit the week after to make sure my blood is doing good. but i am excited to begin this new chapter in my life.
(http://i767.photobucket.com/albums/xx318/cuso123/spleen.jpg)
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Here is a pic of my spleen.... The ruler is 15cm, dr said spleen was over 20cm in my body. it weighed 1900 grams.
today has been the start of my first good day since the surgery exactly 1 week ago. I am not going to lie, for me i had a very rough day 2 and 3 post op, probably because my hemoglobin was out of wack, also becacuse i became aware of my incisicins and they freak me out more than anything. but i almost feel great day 7. I stopped the pain meds yeasterday and I dramatically started feeling better. STOP PAIN MEDS AS SOON AS POSSIBLE, THAT IS KEY. Dont suffer though. I go get 2 vaccinations next week, and a visit to surgeon. then oncologist wants to visit the week after to make sure my blood is doing good. but i am excited to begin this new chapter in my life.
(http://i767.photobucket.com/albums/xx318/cuso123/spleen.jpg)
Oh my god, never saw spleen in my life. And that's huge.
I'm glad you got it removed.
Wish you a speedy recovery, Mark. Get well soon. :)
-P.
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Hope you feel better soon Cuso. the worst is over...now it can only get better...
sorry i have no suggestion for pain killer...i have used naproxene and they worked for me but not sure it is strong enough painkiller for you or not.
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Wow that sure is a huge spleen. Now I believe removing it was the right thing to do! I wish you quick and full recovery.
Pratik: Generally ibuprofen, aspirin and other NSAIDs are not recommended right after surgery because they impair normal platelet function and may cause problems with bleeding.
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Pratik: Generally ibuprofen, aspirin and other NSAIDs are not recommended right after surgery because they impair normal platelet function and may cause problems with bleeding.
Oh, didn't knew it!
And I don't use ibupf. anyway, I like to get diclofenac or simple paracetamol. I suggested it because I believe people in Western countries are more familiar with ibupf.
-P.
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10days post op....
My body is adjusting better to having spleen removed than the gallbladder. I am still sore and I can't imagine being 100% again, but it will happen. I can't tell you how hard it is weighing only200 pounds when I was a monster 235 bodybuilder. I don't even look in the mirror any more. I am getting better day by day. I see the surgeon in 3 days for a follow up. I will also begin my vaccinations. My wife is going to Europe tomorrow for 9 days. I can get around a bit so that is ok. I just want to show her a big improvement when she gets back. It's these insicions I want to heal
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3 weeks today, i had my spleen and gallbladder removed...
I am starting to feel normal again. My platelets have spiked to 1.4 million. My oncologist said it is normal. I am taking a baby asprin every day. He will recheck my platelets in a month. everything is healing up nicely. I got all my vaccinations. All of my pain is completely gone. It is a miricle. I am depressed that I have lost 40 pounds in 5 months. I was a bodybuilder and i cant even look in a mirror today, i am quite depressed. i only weigh 200 pounds. I normaly weigh 240 all muscle. i have always been the big guy, now i am the skinny guy. dr said in 3 more weeks i can begin building again.
IF YOUR SPLEEN HUGE AND IS CAUSING PAIN, DONT BE AFRAID TO HAVE IT PULLED
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3 weeks today, i had my spleen and gallbladder removed...
I am starting to feel normal again. My platelets have spiked to 1.4 million. My oncologist said it is normal. I am taking a baby asprin every day. He will recheck my platelets in a month. everything is healing up nicely. I got all my vaccinations. All of my pain is completely gone. It is a miricle. I am depressed that I have lost 40 pounds in 5 months. I was a bodybuilder and i cant even look in a mirror today, i am quite depressed. i only weigh 200 pounds. I normaly weigh 240 all muscle. i have always been the big guy, now i am the skinny guy. dr said in 3 more weeks i can begin building again.
IF YOUR SPLEEN HUGE AND IS CAUSING PAIN, DONT BE AFRAID TO HAVE IT PULLED
Well, at least you have better build than mine. :)
Don't worry, you'll get to it again.
-P.
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It has been 3 months now. I just finally passed over 200lbs. Now understand i was a 245 lb bodybuilder 6 months ago. I am about to start boudybuilding in another week. Things are good. i really notice no difference without a spleen. I wish I could say the same about the gallbladder. The scar is huge and it is quite numb all arround the incision site. i just started rubbing vitamin E on it. Make no mistake, it is a major surgery, but highly recoverable with time. I will check in from time to time in case someone has any questions about the procedure.
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Its been 6 months now. I am over 215lbs. Body getting shape back. I notice no difference without spleen. I am feeling great. Only issue is that my platelets will not go below 620. I take a baby asprin every day. Also just found out my 3 year old has thal minor...
Bear in mind, my family has an unusual strain of thal, almost all of us get our spleens removed. Grandfather, mother and a brother and me... My 3 year old has 1st visit to hematologist this Friday. Porr kid, she is low on energy and has black circles around eyes just like me when I was a kid. maybe there is something they can do to prevent her spleen loss later in life... People, do the surgery, especially before it gets to large like mine did and they have to open you wide instead if the laproscopic way.