Eye opening experience . . .

Hello everyone. I am a newbie to this site and would like to tell my thal story. I'm a 36 yr. old male from Ohio and was diagnosed at age 11. Doctors told me I was thal intermedia. Basically, found out because I became super fatigued for no reason. Anyway, I began having bloodwork done monthly, just tested, I have never had a transfusion. Did this for a few years then quit, because doctors said no cure or treatments. So why go get stuck in the finger? Fast forward 25 yrs. to today. My spleen has always been enlarged but has not bothered me until recently. I wouldn't say it hurts, I can just feel pressure @ the bottom of my rib cage. Being curious, I stumbled across this site, while on the web 1 night. Hence, the "eye opening experience." Wow is all I can really say. I have just ignored my thal up until now and would really like some advise from you guys. Believe me I have read every word on this site 2 or 3 times now and some of it is intimidating. Mainly, the blood transfusions. I would really like to not go that  route if possible. I have just had an ultra sound done on my spleen as well as bloodwork and will get the results next week. I also began taking folic acid and will start on the wheat grass spray soon. I already take a multivitamin and drink lots of tea. I'm really thinking my spleen needs to go based on what I've read on here, it's current size and the fact that I've noticed I catch colds more than I did in the past. I would like to know what finally made you guys take out your spleen, seems like a big step.

Thanks for your time and this excellent site.

Jamie

Hello Jamie

Welcome to the site.  I am also a new mwmber here and i think it is a very useful and excellent one.

What is the average of your hemoglobin??

Manal

Hi Jamie.

 

Do you know the size of your spleen? It is a key indicator of how bad the problem with it is. It also might be worth checking your serum ferritin level to see if you have any excess iron absorption from your diet. If you are managing without transfusions, you should continue to do so. Folic acid, vitamin E and wheatgrass spray may help your hemoglobin level some and will also help keep you healthier and may increase your energy level.

Hi Jamie

Welcome to the site and glad to hear you've enjoyed our stories. Its overwhelming when you get on here but you'll find that you will gain more experience on here than what any medical journal and doctor will tell you.

I had my spleen removed when I was 8 yrs old, all I was told was it was too big ( too young to understand at the time) Currently aged 37yr old I'm doing ok without it. I do have to take penicillian daily since having  my spleen removed however.  I am not the best practicing person when it comes to my medication and for some time now not been taking my tablets. (Knock on wood) I have not had any problems.

Wish you all the best of luck and once again welcome and keep us posted.
Miaki

Thanks for all the responses. I just talked to my doctor today and he said my spleen is 25 x 12 cm. Also said my platlet count was 106, down from 140 2 yrs. ago. So I meet w/a surgeon on Monday, to discuss removing it. Guess I'm going to lose 5lbs. overnight! Kind of funny that I had already been all over this site prior to my doctor visit, so I actually knew more than he did regarding my condition. I'm going to ask if they can remove my appendix @ the same time. Thanks again for all the support.

Jamie

  Forgot the hemeglobin tested @ 9.5

Jamie,

When my appendix burst, but before it was confirmed, the surgeon told me that once they opened me up they would take the appendix regardless. I would agree. Take it out. I was one who always felt that even if it had no known role that it must be necessary. After 10 years I have had only one intestinal illness and that was after drinking some bad water. It has definitely been a blessing to not have an appendix.

hello and welcome in this site you found the wright place to descuse your problem on my experience with my son ,,the Dr. told me when he porn he is intermidia but after 3 years he start transfusion ...when i take my son to UK to prof.jhon porter he told me if we remove the spleen we have a chance to redeuce the a mount of blood transfusion to be twice a year instead of every month ...  a ctually i refused because his spleen not large... also i remembar he told me sometimes we buke the spleen by a needle to release the blood from it ....also i didn't a gree (don't ask me why because idon't know why  ) any way i found out how i can keep the spleen small :- with transfusion fresh blood  and the HB not less than 9 you can sometime keep it go to 8   also with a daily  desferal enjection at home  fresh food containing protien like cheken so at least you keep the monester sleep and quite (normally i call the spleen MONESTER )
                                      take care hope to see you here always
                                                khalifa

Hello Jamie,

Welcome! It's a good thing you found this site, I to recently joined and its become one of my favorite places on the web.  I have learned more about Thal in a couple weeks than I learned over the last 22yrs.

I am 30yrs old and also Thal Intermedia.  I have been experiencing the same issues with my spleen. I have an appt on Sept 19th, but I'm sure its huge and the dr. will recommend removal.  Over the last month my spleen feels like it is rubbing against my rib cage and somedays its a little sore.  I am kinda looking forward to taking it out because I work out alot and running has become harder to do, plus I'm afraid someone will bump me if I play basketball and rupture it.  The thing I'm not looking forward to is losing 5lbs, I eat constantly trying to gain weight because I am so thin.  6'2" and 170lbs.  If I decide to have it removed I thiink I will wait until 2007 because my wife is due to have our baby in November and I'll need to be up and around.

Keep us informed on your decision and good luck.

Bobby

There is usually a difficult decision to be made when it comes to splenectomy, but I think when it gets so enlarged that it is pressing into the ribs or posing a possible rupture problem, that there isn't much choice. A ruptured spleen can kill you and it is best to take preemptive measures and have it removed.

Jamie, I think yours is so large the doctor will want to remove it and at this point it is most likely for the best. A spleen that large is not functioning the way it should be and can in fact, be viewed as an enemy of your body.

Bobby, please be careful with the contact sports until you have your spleen removed. A hard hit could rupture it and as you said, you have a baby coming and you need to be up and about for that. Basketball can get very physical, so you may have to cut out the competitive aspect for the time being.

Good luck to you both.

Wow, thanks for all the feed back! I will let you guys know how the surgeon mtg. goes but as far as I'm concerned, the "monster" is gone asap. Bobby, we are kind of in the same boat, I have a 4 yr. old son and do major physical activity. Work and play. What scares me is the rupture and bleeding to death thing, since I do a lot of mt. biking/snowmobiling deep in the woods, where I would never get help in time. Thanks for all of your comments Andy. Be back in a few days.

Jamie   

Jamie:

Welcome to the site. I have found this to be a valuable resource.

I have copied a post:

Kathleen:

I was diagnosed beta thal intermedia when I was a child and my hemoglobin levels were about 6 but I was never transfused. This was in the 60s. However, when I was sixteen (1970) I had my spleen removed due to hypersplenism. Since then I have had post-splenism sepsis three times and pneumonia once. Last fall when I had pneumonia, my white cell count was over 80,000.  I have also had the other classic thal issues: blood clots, leg ulcers, gall stones, iron overload, etc. It is only by the grace of God that I survived these illinesses.

I have read that now doctors prefer to transfuse to keep the hemoglobin levels higher to slow down or eliminate hypersplenism. Or if the new therapies can keep her levels high enough to eliminate hypersplenism. I would definitely get a second opinion.

If you have not been in contact with the folks at the Cooley's Anemia Foundation, please contact them for help in finding someone that can treat your child(ren). Eva Chin (www.cooleysanemia.org or you can email them at info@cooleysanemia.org) can help you find a doctor and can help you get a book called "About Thalassameia". This book has great information about this disease.

I am 52 now and I must say for the most part I live a "normal" life, if thals can be considered normal. In July, I purchased a 1999 Harley Davidson Electra-Glide Classic with only 4,340 miles on it and have planned an eight day road trip from Ohio through West Virginia, Virginia, Washington DC, Pennsylvania and back to Ohio.

I think the most important thing for your child is to find someone you understands her condition and give her the treatment that she needs. If it is possible to treat her early, this may eliminate some of the issues that she might face later in life. There is so much support out there today compared to 1960s use it to your advantage.

Ciao!

Barry

Jamie:

I would only have my spleen removed as a last resort. I hope that this information my be helpful. I live in central Ohio and have found it hard to find a good doctor. Eva Chin can help you with this.

Barry

Jamie,
     I also have thal intermedia and had my spleen removed when I was in my forties - I waited too long because the doctors where I live didn't know what to do.  I am 55 now. It was very large and I could feel pressure where it was pushing against my body. The ribs on my left side actually stick out farther than the ones on my right side because of my spleen being large as I was growing up. I didn't even realize that had happened.  I started getting very sick, and eventually couldn't walk across the room without being extremely short of breath.     
      I finally got my spleen out and I felt much better for awhile, but was getting sinus and other infections all the time, (I don't take penicillin). I started on monthly blood transfusions almost 4 years ago, and I do not get sick much anymore. The transfusions really helped me; I couldn't have continued without them.
     Goodl luck to you. There comes a time when that spleen just has to go. When it can no longer do what it is supposed to do, and it is actually making you ill, call the surgeon and say good-by!    :wave    Please ask any questions you can think of - we're here to share our experiences with you.   Jean

Hi Jamie,

Welcome to this wonderful site  . I too have thal inter. Had a spleenectomy at the age of five. I just want to tell you that thal inters tend to absorb a lot of iron from food, so go easy on red meat, tofu, honey etc. Drinking tea with your meals helps to cut down iron absorption. Green tea especially is supposed to help.

Hope this info helps you. Please feel free to air any concerns. Take care and good luck.

Regards,

Namitha

Hello all,
     I had an Ultrasound Wednesday and my spleen is 16cm, large but not extreme.  My Dr. suggest keeping it for now, which makes me happy.  My iron count is good and my HGB is 8.8(normal for me), almost identical to a year ago.  I'm not scheduled to go back for a year unless I have other problems.  Just and update.  Talk to you all soon. 

Bobby