Question re: Thalassemia Intermedia

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Question re: Thalassemia Intermedia
« on: March 27, 2012, 12:35:27 AM »
HI
I am a 44 year old that has been diagnosed with Thal Intermedia since I was about 6.  I have had a spleenectomy 7 years ago and 6 years ago had a portal vein thrombosis and 8 months ago a large clot in my cecum resulting in major surgery.  I have had intermittent transfusions but developed a lot of antibodies to blood so I am told not to have intermittent transfusions.  I am looking for advice regarding becoming transfusion dependent/////  My last hgb was 7.2 and hct 23.7.  I cannot maintain above that and I realize part of it is age.  I am on Coumadin, Folic Acid, Questran, Vit B 12 injections, Vit D.....I have no bleeding issues or tendencies.  Infact, my last INR was only 1.8.  Yes, I am exhausted, pale, Total Bili 5.4,Direct Bili 0.2, short of breath,,,,all the time....No pulmonary hypertension, pulmonary function tests are ok, I do have osteopenia.  Iron levels are currently 'ok'
...It has been suggested to become transfusion dependent, but the idea freaks me out.....just looking for advice or thoughts.  The idea of being 'dependent' is not my style, and it is becoming one of the hardest decisions I need to make. 
Thanks for any input.   ???
Linda

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Offline Valkyria

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Re: Question re: Thalassemia Intermedia
« Reply #1 on: March 27, 2012, 05:48:22 AM »
From personal experience, I would recommend starting transfusions. I started feeling very tired, irritable and short of breath when my hb dropped into the 60-70 range in 2009. Since commencing regular transfusions I'm feeling much better, this past December I took long walks in the dead of winter admiring Christmas lights, two years ago my hypersensitivity to cold would have never allowed me to enjoy it. After three years I have taken up jogging again this spring. I no longer worry about being too fatigued to drive safely after work. Blood transfusions have given me my life back

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Offline gwftan

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Re: Question re: Thalassemia Intermedia
« Reply #2 on: March 27, 2012, 02:54:07 PM »
Hi Linda, 

I have HbH(mutations that put me into this status).  I am 35 years old this year.  In fact I had started a post about increasing hb quite sometime ago.  I, too had been suffering something similar to what you’re facing, in a different context.  My hb started getting downhill, from the usual 8.5-9.5 range to a dip of 8 last year.  It was a particularly difficult year, managing life, children with such a low hb.  I agree for transfusion once, just to try out partially, and to prepare my body better as I went overseas the week after.

I don’t quite see eye to eye that being transfusion dependant at low hb partially because I think having to cope with the excess iron from the transfusion, is another big issue.  I myself are suffering from the consequences of transfusion and wrongly prescribed iron tablets(large doses of it) due to the birth of my childrens and never got any chelation approved by my haematologist because I fall under “safe” range (Ferritin 1000-2000 safe? for the past 7 years).  Till today, if not I stumbled on this forum, I’m still in the dark on how to safely get rid of the excess iron.  It is a slow process using green tea but it is working. 

In fact last year I spent a lot of my time doing research and worrying.  I was worried about the sudden drop and worried about the outcome of my health.  I’ve seen many doctors, haematologists in and out of the country but none could offer me a solid advice what was happening to me.   Seeing all this, my husband approached his friends for advice and one told him he was “cured” from going from transfusion to transfusion free.  He even managed to raised his hb to the level, he was able to donate blood just by going to qi gong!  I told him sceptically, I’ve never heard of such a thing.

In January this year I enrolled into the China Soaring Crane Qi Gong which has classes 3 times a week.  I do  not believe in this at first, I just went with an open mind that I’m going to get some exercise, that’s all.  In January I had a check-up with the hematology clinic, my hb is 8.  Recently I went for another visit(2 month’s appointment), my hb was 10!  Surprised and delighted!  I actually felt a difference in my physical health.  I still get fatigue easily but surprisingly the endurance has changed, I am lighter to climb stairs, can walk more distance, even going to gym seems to be much pleasing these days. 

During these 2 months, I also went for ultrasound, in fact to rule out the gallbladder stones as I was complaining of pain.  The consultant radiologist happened to be a tai chi instructor as I glanced his office.  I was chatting with him that I just enrolled for the qi gong class, it seems to hit his “like” button therefore he shared with me his experiences.  Having a doctor advising people to try out alternative medicine was downright odd but anyway he shared there used to be a patient who has only 6 months to live.  As there are no hope/cure, he started going for tai chi as an alternative.  Surpirisingly, after 5 years, the man is still alive!  He told me there are many research going on, prolonged qi gong/tai chi are able to change one’s DNA(he cited it on the mice).

His own sister-in-law has thal intermedia.  She used to go for transfusion, after practising tai chi, she do not need transfusion anymore, in fact her hb has gone up to the normal level.  His own mother, has hypertension, has reversed the hypertension after going for tai chi.  In fact, he advised me to continue learning and practice as it is good.

Therefore whether you think it is possible to reverse this low hb, I am here to say that there are testimonials that this is possible.  Only word of advice, confidence, determination and persistence is the key.  Once you started this routine, you must continue it so that the benefits are there to continue keeping the health to the optimum.  As a beginner, there will be time when one felt it is useless(therefore some opted to stop), because one may feel their sickness has gotten worse.  You must read more to understand that this discomfort is temporary because the “chi” is trying to clear the blockage in our body.  At the end of the day, what we aim for is a better health and better life.

There are no harm trying this alternative, if it happens to work for you.  Otherwise, being transfusion dependant is an option but I would think going for transfusion every few weeks, and undergoing chelation is not a solution for life.  I would rather practice a 20-30 minute of qi gong exercise, maintaining a good healthy lifestyle in exchange for that.

Re: Question re: Thalassemia Intermedia
« Reply #3 on: March 27, 2012, 04:40:02 PM »
Thanks for the words of advice.  Even as I sit here doing 'routine' mom stuff before the kids come home, I am tired and short of breath.  You are correct that this is no way to live.  My children and husband sense my irritability...the joke is 'mom's not in the mood....'  I don't think my husband fully understands how debilitating this disease is.  I usually just respond when I asked how I am feeling "fine."  No one likes a complainer, and the house still needs to get cleaned, the laundry still needs to get done, dinner still needs to be cooked, etc. 
Appreciate any and all feedback!!
Linda :ty

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Offline gwftan

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Re: Question re: Thalassemia Intermedia
« Reply #4 on: March 28, 2012, 03:05:49 AM »
The low hb contributes to the stress and irritability.  We need to control the stress level, as I believe, being under pressure and stress is will lower down the hb level.  My husband too, do not understand how it feels to be under the normal hb level as he is normally high.  Everytime he would asked me too, how I am feeling but I have nothing to comment except I'm ok... because there are no way to describe how I am feeling.   Even I snap at kids just because I feel I'm in no mood in any games they are into, running around me is giving me stress and headache??

I hope you can sort out this problem pretty soon.  I believe there is a way to it, you never try, you will never know. 

Good luck!

 

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