Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Waleed on July 26, 2012, 01:39:21 AM
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Dear members,
I read somewhere that patient exhibited beginning of congestive heart failure symptoms. Can anyone inform what those symptoms are so that we better act in such serious condition?
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Some of the symptoms of the onset of heart failure in thals are palpitations, irregular heart rate, chest pain, shortness of breath, exercise intolerance and edema. Edema, retaining water will result in constant swelling at the ankles. This is an important sign of possible heart failure and aggressive chelation measures should be taken.
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Andy, my heart rate always stays around 100-110 even while sitting and doing nothing (stationary)!
Should I be concerned?
Chest pain I do have, but mostly due to gastric trouble which after taking antacid works out my problem.
However, I will this time most probably go for T2, been super busy and also my dad been a lot busy. Tomorrow, he would inquire if this is done in my city or I shall travel to Ahmadabad during next transfusion (after 2 weeks approx) and get it done.
-P.
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I don't want to speculate until you have the T2* results. Make sure you are taking a magnesium supplement along with calcium, in no less than a 2:1 ratio cal to mag. Anf vitamin D needs to be taken with them to promote absorption.
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I would also suggest that you are checked for pulmonary hypertension, PHT or PAH, as this can also raise the heart rate. It is treatable in thals with the drug, sildenafil citrate. The supplements L-arginine, L-carnitine and L-citrulline can also help to boost the production of nitric oxide, NO, which helps to counter PHT.
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Andy, I'll get T2 done shortly.
And by hypertension, you mean blood pressure? I have instrument at home and my blood pressure is always normal, just the heart beats always range around 100 or so.
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No, pulmonary hypertension is not related to blood pressure. It is an increase in the pressure in the pulmonary artery between the heart and lungs. The increase in pressure in this artery in thals is primarily caused by a loss of elasticity in the artery, which is related to depletion of nitric oxide in the artery. It can cause an increase in heart rate and is one of the great dangers that confronts thals. It cannot be tested for at home.
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Alright Andy, so what is the exact name to get that test done? And is it done through blood sample or through some other procedures? Do let me know, thanks a lot.
Now that I know, I am actually getting scared as my heart beat is high. :wah
And if that test shows it high (can you also point out normal range of that tests if possible?), is there any way to make it better and bring it down to normal?
-P.
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PHT is not easily diagnosed. A series of tests may be used. You can read about this at http://www.mayoclinic.com/health/pulmonary-hypertension/ds00430/dsection=tests-and-diagnosis
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PHT is not easily diagnosed. A series of tests may be used. You can read about this at http://www.mayoclinic.com/health/pulmonary-hypertension/ds00430/dsection=tests-and-diagnosis
Andy, now that is really scary. Can you tell me some basic blood sample test if possible? Oh, and I read on above link also a phrase doppler echocardiogram, is it Color doppler? If so, I've got it done back in January 2009 end and it was perfectly normal, should I get it done again if it could help it diagnose?
The link also mentions some variables in blood samples may also point out, so what levels or variables it maybe? Tomorrow morning, my blood sample is to be taken for transfusion, so if I know which tests possibly I can get done, I shall know then, speedy reply would be appreciated.
I also want to ask other thals as to around what their heartbeats stay normally?
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Pratik,
How low does your Hb get before transfusion?
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Pratik,
How low does your Hb get before transfusion?
At the most, maybe around 8 VERY RARELY, otherwise stays 9-10.
-P.
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Keeping your Hb above 9 at all times does help as the heart doesn't have to work so hard to pump blood. In the end, the real key is chelation compliance. Get your iron load down.
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So Andy, shouldn't I get any tests done now or be concerned about?
I am trying to bring iron down, I had switched back to 1200mg a month ago and now would start it again tomorrow. Also I will be getting S. Ferritin tests done and would let you all know about the updates of the same.
-P.
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You should get the T2* test.
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Yes, that would be done. But shouldn't I got for some of the PHT tests or you'll decide that on the basis of T2 reports?
-P.
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Andy, now that is really scary. Can you tell me some basic blood sample test if possible? Oh, and I read on above link also a phrase doppler echocardiogram, is it Color doppler? If so, I've got it done back in January 2009 end and it was perfectly normal, should I get it done again if it could help it diagnose?
The link also mentions some variables in blood samples may also point out, so what levels or variables it maybe? Tomorrow morning, my blood sample is to be taken for transfusion, so if I know which tests possibly I can get done, I shall know then, speedy reply would be appreciated.
I also want to ask other thals as to around what their heartbeats stay normally?
Dear Pratik,
Let me share with you that inspite of having normal heart function shown by 2D Echocardiography (LVEF 62%) done before going to do MRI for Cardiac and Liver Iron Assessment for Thalassemia Protocol(i.e. T2* MRI), my T2* Score is very poor. Though i was having chest pain at that time the 2D Echo was showing normal heart function.
My one friend faced the similar thing (Echo Normal and MRI Poor) and yes he is having some higher heartbeats.
So, i want to draw your attention that it doesn't matter that your Echo is normal or not you should done T2*MRI.
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You should get the T2* test.
:agree
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Yeah Dharmesh, I am about to get T2 done, have sent you a PM regarding details of the center where it gets done as am planning to get it done under a week as transfusion is planned tomorrow.
And Andy, as tomorrow is blood transfusion, today was blood sample test and my Hb is reported as 9.4. It could have been around 10 but I got fever on couple of days so maybe that cut it down.
Also ferritin is to be done this time, that report would come tomorrow evening probably or on Monday, I'll update my ferritin thread once I get the reports.
-P.
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Yes Dear Pratik,
Got your PM,
I would be happy if you had called me.
I think that you should go through your doctor or Peditrician under whose your treatment is going on and not directly as you are going first time.
Anyways please find the answer in PM.
Hope that your results will be ok.
By the way HAPPY JANMASHTAMI.
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Happy Janmashtami to you as well, Dharmesh. :)
Oh, and I am and was currently too busy as I was preparing for tomorrow's transfusion, I'll call you later tomorrow or text you first from my mobile so you'll recognize my number. ;)
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Dear Pratik,
Let me share with you that inspite of having normal heart function shown by 2D Echocardiography (LVEF 62%) done before going to do MRI for Cardiac and Liver Iron Assessment for Thalassemia Protocol(i.e. T2* MRI), my T2* Score is very poor. Though i was having chest pain at that time the 2D Echo was showing normal heart function.
My one friend faced the similar thing (Echo Normal and MRI Poor) and yes he is having some higher heartbeats.
So, i want to draw your attention that it doesn't matter that your Echo is normal or not you should done T2*MRI.
My latest 2D Eecho Cardiography report
LVEF reduced to 54% from 62% :(
there is very mild pain in heart
i think there is more iron overload in heart inspite of chelation
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Dharmesh, remind me what your current chelation program is.
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Hi,
I am on 50mg/kg (30mg/kg morning & 20/kg mg evening) defrijet (deferasirox) with split dosage &
Desferal 20mg/kg (60+ vials per month) S.C. through pump for 12 hours
BT (275 ml*4 units volume) approx 1100-1200 ml L-Rcc (4 units every month)
I do feel that iron is getting reduced but not from heart
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Dharmesh,
Are you planning a T2* test? You are chelating well and I think your perseverance will pay off over time. It takes 17 months to remove half the iron load from the heart. Heart and liver scans are the only way you can measure your progress. It may be slow, but you began with a significant iron load. I would suggest a T2*. You need to know what your current status is and if any other intervention is required. If you do not have swollen ankles and feet, you are most likely safe, but you really should get the heart scan.
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It's been an year for me too and I have never got a T2* done in my life. Last year planning went into vague too.
I'm really planning to get it done this time at least by August end or so.
I kinda like to travel very less, so even if it's just 120 km away, I feel like it's very far. Hopefully, I'll to get it done this time!
I found after my Vitamin D level rose (and also with incorporating use of CoQ10) heart takes a little less stress. Earlier when I used to climb up stairs, I could feel some kinda load on to my left chest side, as if a kg weighted bag is attached or so, not now.
Also I'm getting hypoglycemia since past 2 days continously in middle of the night around 5 AM, so I really now need to slightly adjust my dosage again (I'm not even taking Cinnamon!). Hopefully when my iron comes extremely down, I'll be able to fully curb this thing which does not let me rise from my past. Every day I somehow think about my good old days before Osteoporosis and diabetes. What if it was not there, what if? - Getting bombarded with these questions daily in the mind itself is a big challenge.
Anyway Dharmesh, keep chelating and keep fighting. We'll win this fight!
-P.
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Nope.
Though it is the time for a fresh T2*Scan, but my Fe 5350 is suggesting iron overload. I think that i will go for scan when my Ferritin will be in three digits.
Ya it takes 17 months to remove half iron from heart but from whom splenectomised or non splenectomised? As the requirement of bt of splenectomised is low.
& i really think that 4 units of bt is a burden and true reason of iron overload. Recently , i completed 20 yrs of desferal therapy. (19 yrs alone desferal and 1 yr with deferasirox) and 4 more yrs of alone deferasirox. (total 24 yrs of chelation :rolleyes :huh
There is NO Swollen Ankles & Feet but fingers were swollen before 2 days in the morning when i wake up and it got disappeared in half n hour. & my Cardio is not worried with LVEF 54% , he said it is ok.
@ P
i also got hypo twice , @ 8.30PM on sunday & monday and also at 5.30AM today
I dont know what is cinamon.
My HbA1c is 7.2 (avg 193ng/ml, 3 months)
Rest all the tests .. it is a big list , pre operative, is normal ,,, ooh god thanks u very much :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin
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Nope.
Though it is the time for a fresh T2*Scan, but my Fe 5350 is suggesting iron overload. I think that i will go for scan when my Ferritin will be in three digits.
Ya it takes 17 months to remove half iron from heart but from whom splenectomised or non splenectomised? As the requirement of bt of splenectomised is low.
& i really think that 4 units of bt is a burden and true reason of iron overload. Recently , i completed 20 yrs of desferal therapy. (19 yrs alone desferal and 1 yr with deferasirox) and 4 more yrs of alone deferasirox. (total 24 yrs of chelation :rolleyes :huh
There is NO Swollen Ankles & Feet but fingers were swollen before 2 days in the morning when i wake up and it got disappeared in half n hour. & my Cardio is not worried with LVEF 54% , he said it is ok.
@ P
i also got hypo twice , @ 8.30PM on sunday & monday and also at 5.30AM today
I dont know what is cinamon.
My HbA1c is 7.2 (avg 193ng/ml, 3 months)
Rest all the tests .. it is a big list , pre operative, is normal ,,, ooh god thanks u very much :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin :biggrin
D,
Cinnamon is Tuj/Taj.
My heart is paining at times since this morning though, is it a gas trouble probably? Only left side pains at times at every 1 second interval for a while. I assume it's a gastric trouble. Was paining while I type and now it has lowered, haha.
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Dear Pratik,
Same pain here
Dil me kuch kuch hota he :wink
It is due to cardiac iron and gastric both
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Dear Pratik,
Same pain here
Dil me kuch kuch hota he :wink
It is due to cardiac iron and gastric both
Stopped now.
I think mine is solely due to gas lol.
Hope you feel well Dharmesh!
-P.
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Is congestive heart failure only for thanks that get blood transfusions? Or for B thal minor also? I've been getting palps that have been gettinn worse since they started 2 years ago. My HGB is usually never under 12 usually 12.2,12.5.. I have panic attacks so the thought of CHF scares the livinng hell out of me. I'm only 25yo...o I forgot to add I was diagnosed b thal minor at 14yo.
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Is congestive heart failure only for thanks that get blood transfusions? Or for B thal minor also? I've been getting palps that have been gettinn worse since they started 2 years ago. My HGB is usually never under 12 usually 12.2,12.5.. I have panic attacks so the thought of CHF scares the livinng hell out of me. I'm only 25yo...o I forgot to add I was diagnosed b thal minor at 14yo.
You can do things to prevent it. Regular normal exercising routine. It can be anything, walking, climbing stairs, yoga, all benefits. Supplements like Vitamin E, Vitamin D (yes, that's related with heart attacks and patients who have adequate D level are at low risk of attacks) and CoQ10 benefits a lot.
-P.
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You can do things to prevent it. Regular normal exercising routine. It can be anything, walking, climbing stairs, yoga, all benefits. Supplements like Vitamin E, Vitamin D (yes, that's related with heart attacks and patients who have adequate D level are at low risk of attacks) and CoQ10 benefits a lot.
-P.
So thal minors are at risk for CHF also? I quit smoking 2 years ago, and don't have any caffiene either...I've had tons of ekgs, stress echos and holsters, all normal results, even my troponin tests came back negative, only elevated test was mynD Dimer which was 640, norm is 250..