Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: §ãJ¡Ð ساجد on September 10, 2007, 11:41:10 AM
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Hi guys,
I've been suffering from epistaxis (nose bleeds) AGAIN!!! :banghead This Friday, I had a nosebleed which just didn't want to stop. However, it did stop after about half an hour in the emergency room where we couldn't find any doctor :mad (I guess the nose bleed stopped on it's own knowing that no one will come to cure it :spit)
My Platelet counts dropped down to 60,000 per micro-liter. One of the doctor related it to hyperspleenism. My spleen is 7 cm enlarged and he advised splenectomy. :quiver
However, my other doctor prescribed me Vitamin K which increased the Platelets to 81,000 in two days. She said the splenectomy cannot be done even at this level and advised me to continue the Viamin K.
Let's hope the platelets continue to rise and hopefully I can change the minds of the doctors for splenectomy.
Vitamin K has proved to be amazing for me :biggrin
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Hello Sajid,
i am really sorry to hear about your situation,i hope vitamin K will help you,wishing you health and joy.
ZAINI.
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Hi Sajid,
After reading your post i can relate,i often do and when i was younger also suffer terrible long nose
bleeds they would go for 1 & 1/2 sometimes 2 hours long and wouldnt stop!
But i hadnt realised it could be the cause of other problems such as the spleen as you mentioned.
im 28 yrs old and still have my spleen,and apparently its not enlarged.
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Hi Sydneygirl,
My doctors can't seem to find any thing else wrong?
What was the cause in your case?
I have no allergies going on and I try to keep cool as possible in summer days like these.
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Sajid -
Is there any particular reason you want to "keep" the spleen? Are you afraid of the surgery, or the lessening infection fighting effect of not having a spleen? I dont know much about Pakistan :( but, are antibiotics readily available at your clinic?
I might be reading this wrong, but is your spleen's total circumference 7 cms, or has it enlarged 7 cms from a previous measurement? Here in the states, the doctors supposedly don't yank the spleens until they're in the double digits. Mine was 19 cms. Are you having any pains from it other than the nosebleeds?
Im so sorry this is happening...I hope that the Vitamin K helps your platelets, whatever the outcome after that. This is your first priority. All my love, Sajid! :hugfriend
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Hi Courtenay,
Yes, I'd rather keep it inside me than add it to the surgeon's trophy shelf :biggrin After all it is here for a purpose and I don't want to face the post splenectomy problems like increased risk of infections and blood clots. This will add to the list of medicine that I have to take regularly, something that I really like to keep short :)
However, I'd prefer any medicine as long as it keeps me away from the Operation Table. I hope Vitamin K does just that.
The size they determined was by feeling it. This means they measured 7 cm of the spleen by feeling on the area. While according to the doctor who advised me the operation; hyperspleenism can even occur to spleens as small as 2 cm. It is just that it has gone bad and is now malfunctioning.
Somehow I don't (or don't want to) believe what he said :-\
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Hi Sajid.
Its another episode,I feel for you .I hope you get well soon,Take care.
Much love
Kathy
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hi brother
i promise u that your noseblooding came to an end....
in fact that u make the surgery....
after spleenecomy the platents rise up to a million...
and dont be afraid for infects......
for about a year now i have no no one...
and think about the periods of transfusing..u will enlarge em.
panos
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Hi Sajid
When the doctor felt Hassan`s spleen she said it was very very enlarged and so we had an ultrasound. The doc who did the ultrasound had a chart according to which the normal size of the spleen for a one year old was 6cm, for a two year old was 6.3cm and so on. The ultrasound showed Hassan`s spleen to be 8.5cm ie enlarged by 2.5cm. So you see just by feeling you will not get an accurate reading. In any case Dr Mathur has given something more for his spleen. You used to take peanuts for your platelets. Did you stop them? Please do consult a speciallist before taking any decision. Praying that your spleen need not be separated from you
MAHA
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Hi Maha,
I had discussed peanuts with sister Danielle in the later posts and it turned out that they had no role in increasing the platelets furthermore she told me that they decreased them!! and my body had been making platelets on it's own. I wish I had stopped them as soon as she told me through her knowledge and experience but I thought it must have been vitamin K in them that did the trick; but when Andy posted the link about mineral content and I checked about the peanuts; I was shocked they contained no Vitamin K at all!! instead they contain heaps of IRON!!!! :hissyfit I had been poisoning myself just because a local nurse told me about something who didn't even know about what she was talking about. :pissedoff
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Hi Again Sajid,
I dont know what was causing my nosebleeds & my haemo doctor didnt look into it at all and brushed it off,i do suffer from hayfever but my nosebleeds were never with the sneezing etc.
I always tried to keep myself cool too,but at times i did feel hot & my nose would bleed and
then at other times id just be sitting down & would bleed for no reason.
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Hey there,
The splenectomy may help you increase your counts..both the platelets as well as the WBC's..i've seen it in many cases..
On the other hand i've also seen cases where the platelet count after splenectomy was like 10*1,00,000 (10lacs)...still the person suffered from epistaxis...
dont know what to conclude..take care!
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Hi Sajid,
Sorry to hear you're having difficulties with your platelets, and with nosebleeds. All I know is that my spleen was like Courtenay's, 19 cm, and I was very sick with constant infections and short of breath. I also had not started transfusions yet, so I don't know if it was my low hemoglobin causing the trouble or my big spleen. I'm sure it was both. I did feel much better after my spleen was out. Dr. Vichinsky did not have me take antibiotics, maybe because I was older when I got my spleen out, and I don't get infections like I used to.
I wish I could give you some advice, but at least know I am thinking of you, and hoping that your condition improves. Take care, Sajid, Jean
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Hi Sajid
So sorry to hear about what you are going through, but did you consider partial splenectomy???
Manl
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Thanks everyone for your concerns.
Sorry, I couldn't reply to each of your messages; I am a bit too
anxious these days and a bit worried on what the outcome of my blood CP will be which is due this Saturday. You guys are the best! :happyyes
Hi Manal,
Yes, I'd prefer partial rather than total if I had to and if there is no other choice than the operation, but the problem is that it's like living in stone age here. I doubt that the doctors even know about such a thing as when I asked my doctor if there is any place where I can get it done via the laparoscopy and he replied: "You don't have to do modeling or anything? Why care about the size of the cut?" I was hooked up with the blood stand otherwise I'd have remodeled him myself :mad It's hopeless with these guys :-\
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Hi Sajid,
Can you visit Karachi? I am sure laparoscopy would be available here in Aga Khan hospital,or may be even partial splenectomy,think about that.
Wishing you luck,
ZAINI.
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Sajid,
I feel what you are going through. Regarding partial splenectomy, I don't think it is recommended for thals. I tried pursuing it for myself (in US and in India) but pretty much all the doctors were against partial splenectomy. They were firm and were very confident in thier opinion that partial splectomy will do no good.
Best of luck to you and hope you make the best decision for yourself.
--Hallu
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Sajid, my heart feels for you :hugfriend, i know how you feel especially when you are faced by doctors who are so indifferent and your restricted to limitations. Anyway, i hope you won't need to go through splenectomy and please make sure that there isn't other causes for this decrease in platlets other than the spleen. Who knows may be there are other things :dunno.
Please if i can do anything to help you let me know
Manal
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Thanks everyone!
Your each post gives me more points to discuss with my doctors. Let's see what happens.
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sajid
i've had my spleen removed last october an i've never had a nose bleed but its quite ok without it.im just very precautious of fevers an flu.i hate the scar though its approx 6 to 7'' across.
any way :goodluck an :getwell soon.
:hugfriend from trinigirl to you
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Hi Sharleen,
Thanks for the well wishes, I really need them regarding this issue as nosebleeds are happening increasingly frequent to me these days; in-fact now I get them after a couple of days that I've stopped complaining :biggrin It seems like a part of routine now. I've had the PT and APTT test done and I was put on Vitamin-K for another 2 weeks. I'll go in for a TransX this Monday and get my PLT checked. :-\
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buddy,
sajid my buddy i guess we could all be worst. :doh :nurse
bear wit it we still have hope.
trinigirl. :pray god is our only reassurance.