Back in the hospital.

I have been "healthy" since my last time I was on this website, thanks to you guys I got put on hydroxyurea 500 mg twice a day & magoxide (but I stop taking the mag because it gave me the poops). Any way my hemoglobin went fron around the low 6's to the high 7's and two Fridays ago it was 9.0 The BEST it's ever been.
I had forgot to mention to my dr that I thought I pulled a muscle that Monday & my left shoulder & left side neck was hurting.

Well after that Friday morning Doctor appointment on Saturday my son & I went hunting we were in the woods from 5;30 am till 7pm.
We went to our campsite for the night and was back in the woods Sunday @ 5:30am but my neck really started hurting so we packed up every thing and was back home by 3pm (that's how I knew something was wrong when I didn't want to hunt all day long.

By Monday evening my left side neck started swelling up so I set a dr appt but it was for Wednesday after that pcp appt he sent me for a ct of my neck and told me to see a ent on Thursday.  So after the ent put the thing up my nose & down my throat he told me go to hospital to be admitted because my left side neck lymph node was swollen to the size of a lemon.

So iv been in the hospital Thursday, Friday, sat, sun, mon, & today is Tuesday October 30 and my hemoglobin is down to a 6.5 so they transfused me with 2 pints of blood & I'm about to go to surgery to remove the lemon sized lymph node that was determined to be "decomposing" in the center.

I'm 33 years old with hemo E beta O thal & am starting to get scared that my time is running out,  I'm worried about iron overload.

Can any one tell me what I could be expecting in the next few months & years?

Thanks
DiMattia



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Have you had your iron checked? In addition to serum ferritin. you should have a liver MRI, Ferriscan if possible, as iron load is not easily determined by ferritin alone in thals who don't regularly transfuse. Also, I would like to know the results once the lymph node that is removed has been tested. It is most likely the result of a low immune system, but if anything is found, it will affect any advice given.

There is no reason to be alarmed about how much time you have left. You only need some direction. If iron is an issue, it can be addressed with chelation. I will say that many thals who have not chronically transfused, do choose to transfuse as they get older, as it can make a huge difference to quality of life. With today's chelation choices, this is a much easier choice to make. Are you currently taking Exjade? With your history of extramedullary growths, regular transfusions may be the best course, with a goal of keeping Hb no lower than 9.5.  I see no reason why you can't turn things around. Are you also taking folic acid?

You may benefit from contacting Eileen at CAF. I think you should try to be seen at one of the Centers of Excellence to get a full evaluation and have a treatment program designed that you can follow locally. I cannot stress the importance of this enough. My observation is that patients seen annually at these Centers are healthier and outliving patients who are not in a managed care program. I have become very passionate about this, as patients in the US are still dying far too young, when they could survive with properly managed care.
Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

Hi,

I too have swollen lymph nodes since past 2 and a half year (I'm Thal Major). Why is your doctor taking a sudden decision to do a surgery and remove it?

Andy, is it advisable? If so, it's making me scared of what reason I'm having swollen lymph nodes at many places inside my body. Of course mine is not a lemon sized, but you can say a bean sized.

Please Mattia and Andy, let me know.

editing, Mattia, I would not advise to jump off to hospital bed for surgery in a hurry, lymph nodes often swells because of infection also.

Anyway, I have a miracle tonic advise for you here. Couple of days, after over exaggerating on my 2.5 years old lymph nodes, I searched the internet and I found a link:


http://www.earthclinic.com/CURES/lymph_nodes.html

I then ordered BRAGG's ACV and I was starting to feel very nice reduction in my swollen lymph nodes (just read above article and reviews) but in middle, I got sore throat so I've discontinued at the moment. But I will once again start and I have belief that it will cure it greatly, I wanted to post this since so long.

Over the centuries, ACV has been considered as a magic tonic. Try it. Make sure to buy ORGANIC and UNFILTERED.
-P.

Have you had your iron checked? In addition to serum ferritin. you should have a liver MRI, Ferriscan if possible, as iron load is not easily determined by ferritin alone in thals who don't regularly transfuse. Also, I would like to know the results once the lymph node that is removed has been tested. It is most likely the result of a low immune system, but if anything is found, it will affect any advice given.

. 

 No results back yet from the L.N.  but my 102 fever has gone away, along with most of the pain.  They only check my iron by the ferritin,  I think they may have did a liver MRI a few years back but I don't know what ever come of that.

There is no reason to be alarmed about how much time you have left. You only need some direction. If iron is an issue, it can be addressed with chelation. I will say that many thals who have not chronically transfused, do choose to transfuse as they get older, as it can make a huge difference to quality of life. With today's chelation choices, this is a much easier choice to make. Are you currently taking Exjade? With your history of extramedullary growths, regular transfusions may be the best course, with a goal of keeping Hb no lower than 9.5.  I see no reason why you can't turn things around. Are you also taking folic acid?

I'm not on exjade any longer for some reason I didn't get approved for the financial aid for it and my insurance does not cover it.  My hb has never been as high as 9.5 I just hit 9.0 for the first time ever last week.  I have been on folic acid for as long as I can remember, but to be honest the last few years I have not been taking it like I should.  What does the folic acid do for us w/ thal?

You may benefit from contacting Eileen at CAF. I think you should try to be seen at one of the Centers of Excellence to get a full evaluation and have a treatment program designed that you can follow locally. I cannot stress the importance of this enough. My observation is that patients seen annually at these Centers are healthier and outliving patients who are not in a managed care program. I have become very passionate about this, as patients in the US are still dying far too young, when they could survive with properly managed care.
Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org

I will contact them thank you.


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DiMattia - Just read the post. Sorry to reply a little late.

To answer your question on the need of folic acid or other supplements, I found the information below on thalassemia.com (under Standard of Care Guidelines)

Nutritional deficiencies are common in thalassemia, due to hemolytic anemia, increased nutritional requirements, and morbidities such as iron overload, diabetes, and chelator use.

For nontransfused thalassemia patients, folate supplementation (1 mg daily) is recommended

Please update us on your condition. Hope you are feeling well now.

Well I'm still in the hospital, the surgery went good on my neck they removed the lymph node, put tubes in my ears (because of the extra bone formation in my head is causing fluid build up and infections) & transfused me w/ 2 units of blood.

Oh the blood was because my hg dropped to 5 . Something but now is back up to 7.8.

They still don't know what caused the massive infection in my lymph node or what kind of infection it is, so they are keeping me here until the culture grows and they can figure out what antibiotics to use on me.

You do not know how bad I want to go home, iv been in here for 9 days and iv missed out on one weekend of hunting already and I'm 99.9% sure I'm going to miss this weekends hunting also.


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