Feeling Down...

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Kathy11

Re: Feeling Down...
« Reply #15 on: November 10, 2006, 07:44:11 AM »
Hi Manal;
I hope you are feeling better I'm thinking of you,
Regards Kathy  :smile2
:flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers

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Offline Zadkhi

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Re: Feeling Down...
« Reply #16 on: November 10, 2006, 10:50:40 AM »
Hi all,
     Since I didn't know any of my hemoglobin levels until I was in my 20's, (when I found out I had thal intermedia), I can't give much advice on levels in children. I know I was sick a lot as a child, and I would have simple illnesses longer and more intensely than others in my family. But when I felt well, I had lots of energy. I think I subconsciously had this feeling that I'd better do everything I could while I could, until I was down again. I am sitill like this today!
     My spleen was enlarged, but they didn't correlate that with thal at the time. I also had pains in my legs, that my pediatrician said were growing pains. Otherwise, I developed fairly normally - went through all developmental milestones at the normal times. I am 5'3".
      It wasn't really until my early twenties that I started getting more and more sick with infections and very tired. My spleen was getting bigger and bigger. I seemed to be really sensitive to smells, chemicals, foods, etc. I was hospitalized for 10 days because I couldn't keep food down. Finally I found out what I had, and the doctor said my body was used to a low hemoglobin, and that I was just fine with a hemoglobin in t he 7 to 8 range. Then over the next years I had many problems with pain, infections, etc., and I finally, iin my 40's had my spleen and gall bladder out. The large spleen was making me really sick.
     Anyway, I didn't start on regular transfusions until I was 52! I wish I could have started on them earlier because my hemoglobin was going in the 6 range by then, and it was difficult for me to stay healthy. If  I could have started in my 20's, that would have  been great. I started having a lot of pain in my left cheekbone and my hips, shoulders, legs, etc. My bone marrow was working extremely hard. They think I also have fibromyalgia, so I don't know how much that affects everything.
     I hope this helps - sorry to repeat my story for the 700th time for those who have heard it. I think a person can usually do fairly well with intermedia until he or she gets older. This is just my story though, others may have different experiences. All in all, I have done fairly well.  Jean 

I'm quoting this post both for my own reference and to remind myself to write a more thorough and coherent response when I wake up in the morning!

With that said, I'm absolutely amazed at how similar my own story sounds compared to yours!

I have a form of alpha thal called Hemoglobin H Disease and my Hg count is consistently at a high 7 and I too have 'grown used to' my hemoglobin.

My illnesses have always been rather frequent and took longer to deal with, but other than that and some of the 'random' (hey, -I- thought they were random!) symptoms you described (including the horrible leg pains that I thought only I ever had growing up!), I was 'fine' until more recently when I hit adulthood and suddenly, I didn't feel so 'fine' anymore.  Either that or my coping issues suddenly became more apparent as adult concerns and responsibilities and activities started coming into play.

I started getting sick all the time all year round once I hit adulthood, which was 6 years ago.  They were so frequent and bad that my doctor thought I had an auto-immune disorder and for the last 4 years, I've been dealing with severe chronic depression.

I tried a trial run on transfusion therapy and it bumped my Hg levels to 9.6, but I really didn't notice much, if any difference, and it discouraged me from considering transfusion therapy.

But the more I've thought about it, the more I wonder if maybe I should seriously consider it as an option.  ???

Thanks so much for posting your experience and thanks to Andy for linking me here!

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Offline Zadkhi

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Re: Feeling Down...
« Reply #17 on: November 10, 2006, 11:34:29 AM »
Dear Christine,

I wish you could talk to my mother; she found out that I had Hemoglobin H Disease when I was not even 2 years old and I'm sure she went through a lot of the same worries and fears that you're having right now and would be able to at least share some thoughts with you.

 :hug

But since my mother can't be here right now, I'll share my memories of growing up as a child with an intermediate form of alpha thalassemia.  After reading Jean's story and comparing it to my own memories, I realize that the symptoms of the intermediate forms of both types of thalassemia are quite similar.

My Hg count has always been somewhere in the 7 range (I will make an important note and say that my Hg levels, while low, are persistent and constant at this level and for the most part, doesn't fluctuate much unless provoked by illness or something else) and I never did transfusion therapy or was recommended to do transfusion therapy.  This was back in the early 80s, so there wasn't too much research done on thalassemia yet, especially in my neck of the woods, I was told, but my mother was told at the time that my own body would adjust to my lower Hg levels.

And it's true.  My body did learn to adjust to my lower Hg levels as far as I'm concerned.

As for my symptoms or evidence of my anemia, my most noticeable symptoms came in the forms of fatigue, leg pains/growing pains in my legs from %$#@ for several years, enlarged spleen, higher iron counts, and a definite penchant for catching colds.

I caught colds easier than most kids and took longer to get rid of them.  Despite having caught pneumonia and bronchitis on multiple occasions, I never had a transfusion even though my Hg count did drop.  I was hospitalized on several occasions because of the severity of the colds, but more often than not, my own mother who is a former nurse, took care of me at home and was very very mindful of getting me well as soon as possible.

My mother told me that the doctor advised her to:

- Watch out for fevers - NEVER let a fever get too high and go unchecked

- Don't let an illness prolong itself - Especially if there is fever involved, don't let an illness go unchecked

- Monitor the spleen size - Though that's more of a doctor's job ;)

- Monitor growth - Again, more of a doctor's thing

- Watch for iron absorption in the stools if there's iron supplements being given (iron deficiency -can- happen with thalassemic patients!) - Stools that are dark indicate that iron is being absorbed

- Make sure I have a healthy diet that is lower in iron and rich in antioxidants

- Make sure I don't overwork myself/push myself too hard in physical activities

- Rest when I need to

I know for HgH Disease patients, the symptoms don't necessarily show themselves until later and that the Hg levels sort of plateau out and settle into a number range and stay there.  In my case, my Hg levels settled on the 7 range and once it settled, it seemed that my own body resettled itself out according to the Hg levels.

I'm not sure if Lauryn's thalassemia condition does or will do the same, but if it is the sort to 'settle' out at a number, that's the better time (so I have been told by my former pediatrician) to measure how 'anemic' she is because then you have a 'base' number to compare with.

As far as I know, I was at an 8ish when I was first diagnosed and I've been in the high 7s since, and now at 24, I'm a grown adult - 5'4", healthy looking with no noticeable bone issues except in my pinky finger on my left hand.

But I have an intermediate form of alpha thalassemia and not beta thalassemia, so I don't know if the symptoms for someone with beta thal in my Hg range are different or the same/similar as mine.

I've lived with my 7 Hg all my life and only did a trial transfusion run 2 years ago and during my last checkup, my hematologist was very pleased that I had turned out the way I did and really, I have to give all the credit to my mother.

She was the one who loved me and nursed me in sickness and in health for all my childhood life and during my more trying years in my adult life.

She never let my illnesses, though frequent, go unchecked for long and was always at my bedside when I had bad fevers.  She gave me very nutritious meals from babyhood to adulthood and encouraged me to listen to my body and to its needs.  She also treated me like I was any other normal kid otherwise and I was, as long as I didn't have to run to keep up or stay up late at nights to write papers.

Christine, I know you're worried, but cheer up!  It's scary to have to deal with something so unpredictable as thalassemia, but there are others here who have been through it and there are other parents who have raised children with thalassemia.

I've been through a bit of a ride myself in terms of my thalassemia, but my mother's love and care pulled through!  Mother's intuition frequently knows best (in my mom's case at least) so if you follow your heart and listen to what it says, I think you'll be able to make the right decisions to give your daughter the healthiest outlook possible.  :)

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Offline Zadkhi

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Re: Feeling Down...
« Reply #18 on: November 10, 2006, 12:16:51 PM »
And Christine?

I live in northern California and I have been to CHO (Children's Hospital Oakland) before.  :)

I'll be more than happy to help you get more information on CHO and if you happen to come this way, I'd certainly be glad to meet you if it's something you'd like to do.

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Offline Andy Battaglia

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Re: Feeling Down...
« Reply #19 on: November 10, 2006, 04:28:52 PM »
Zadkhi,

I'm glad you mentioned CHO because I was going to suggest you visit there. I am curious as to what they recommended in terms of transfusing. Also, has any doctor ever suggested trying hydroxyurea?
Andy

All we are saying is give thals a chance.

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Offline jzd24

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Re: Feeling Down...
« Reply #20 on: November 10, 2006, 11:49:12 PM »
Hi, Zadkhi,
     Too bad I couldn't have met you the times when I went to Children's Hospital in Oakland! We do have similar stories. Before I went on regular transfusions, I tried a trial every other month for 6 months. That didn't make much difference in my health. My average monthly hemoglobin was not being raised enough (my opinion). So, I didn't start transfusions for awhile longer. Then I started doing worse, and I started monthly transfusions, with the goal of keeping my monthly hemoglobin level at a mean of 12. It's been 3 and a half years, and I am so much healthier. I don' think doing a short trial will really tell you that much (my opinion), when your body has gone for years at a low hemoglobin. It takes awhile for your body to adjust to a healthier level of health (if that makes sense).
     Good luck, Zadkhi, and nice to meet you. If I go back to Oakland, I will get in touch with you. My brother lives in Pleansanton.    :hithere   Jean

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Offline Zadkhi

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Re: Feeling Down...
« Reply #21 on: November 11, 2006, 12:05:44 AM »
OH MY GOODNESS!

I LIVE IN PLEASANTON!!!

 :rotfl

Ohhh my gosh, why couldn't I have met you before?!  This is just completely amazing! :lol

My biggest Eeeeep! factor in going on regular transfusion therapy has been both the worry about iron chelation and overload and money-wise as transfusions are very costly and I currently don't have medical insurance because I'm stuck between almost graduating from university and finding a job.  :huh

I'm definitely thinking very seriously about it though and I fully intend to discuss it with my hematologist the next time I see him.  Your story has given me more reason to really consider that avenue of treatment.  :)

And definitely let me know if you come by the area!

Who would have thought that I'd meet someone who could theoretically be so close by?!

 :yahoo

---

And to Andy -

Honestly, it's been several years - over 2 - since I've visited CHO.  Where I DID get counseling from them in regards to my thalassemia, I didn't do treatment under them because I was under the care of Dr. Lewis from Alta Bates at the time and had landed myself at CHO because of a mild thalassemic emergency.

Dr. Lewis was very encouraging in wanting me to look into CHO though, despite it being a Children's Hospital and all, and I do believe I'll be following his advice.  :)

On a related note, the Northern California Comprehensive Thalassemia Center @ CHO recently sponsored a walkathon for thalassemia in Berkeley!  I was in attendance and it was awesome to see thalassemia activism at work!

My initial impression of CHO and of the doctors that have worked with CHO or are working with CHO is that they're very caring and dedicated people and have quite possibly one of the strongest comprehensive thalassemia centers in the US.

I'd love to be able to work with them to help promote thalassemia awareness and if possible, be a patient under them as well.


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Offline jzd24

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Re: Feeling Down...
« Reply #22 on: November 11, 2006, 01:28:15 AM »
I CAN'T BELIEVE YOU LIVE IN PLEASANTON! That is just so amazing. I will definitely contact you if I go out there. I haven't been there in a few years. CHO is a really great thal center. I want to go back there.
     Transfusions are really expensive, and so is chelation. One would have to be very wealthy or have insurance to start treatment.
     What are you majoring in at the  university?  Take care, Jean

 

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