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[thalatrait]

Hi all,
I am having thalassemia trait. I do not need transfusion but I do become pale occasionally. It is because of this until now I do not have a boyfriend!! I am worried....who would like to marry a person with thalassemia? Anyone here having the same problem as me???    :'(

[caraiti]

Hi and welcome.

Being in a relationship is more about being compatable with one another and not about what you have inherited.
Having Thalassaemia does not mean the end of the world, it just means you need to take care of yourself better.

I am the only one in my family who has the Thalassaemia disease, but both my birth parents and two half sisters have the Thalassaemia trait. They all have productive lives and are very much enjoying what they do. My mother works in clinical coding and she has a husband, three children (not including me) and a grandson. My father drives a tow truck and transports vehicles for the police. He is divorced and has three children (not including me) and two grandsons.
One of my half sisters takes heart tablets for her tachycardia. She is in a relationship and has two beautiful boys and my other sister gets pale and takes iron tablets for her anaemia. She is in a relationship and just loves to socialize.
As you can see it shouldn't restrict you from living.
I was once like you where I couldn't see me having a relationship that would head to marriage...
but one day I met a person who loved me enough to see past the needles and hospitals and marry me.
One day you will meet the right person but in the meantime, just enjoy what life has to offer.

[caraiti]

After 7 weeks my hb was 90 not bad but I still had 3 units of red blood cells.
I am now feeling very bloated, my stomach makes me look like I'm 6 months pregnant which isn't an exaggeration and I'm feeling drowsy.
Told my nurses what I have been up to with this website and asked them for some input on what experiences they think I should submit.
They were full of ideas and suggestions. One nurse Jenny, loves reminding me of the times when I decided I wanted to learn to do my own port a cath, how fast my blood should go and how I wanted more input with my clinical management and how I was always blocked by one nurse. Jenny loves those stories as it paved the way for some patients to take an active interest in their medical history.
Both my nurses tell me that although I'm worried I might bore you guys, they feel it is interesting to others so I'll get right on to it after I've had a rest.

[caraiti]

Apr 1974 at 2 yrs- high amounts of lead found in body. (thought to come from home & enviroment)
                       -  evidence of anaemia and raisedreticulocyte count of about 7%
                       - despite elevated foetal and alpha two haemoglobins, not thought to be Thalassaemia
                       - not clear whether genetic or acquired condition
Jun 1974           - Diagnosed Beta Thalassaemia Intermedia
Apr 1978 at 6yrs - Decision made not to transfuse - avoid iron overload for now
                          -foetal haemaglobin 31% (thought to be the reason not feeling anaemic too much).
Nov 1979 at 7yrs - Hb 49g/l transfused and operation postphoned 1 week
                        - Splenectomy performed when noted it was 8 to 9cm long two months prior
Mar 1984 at 11yrs - decision made to start transfusions and desferoxime therapy. Keep hb above 90g/l
                          -  First transfusion was 5 units of red blood cells and continue on 6 weekly basis
                          - Desferal dose at  1500mg in 50mls of normal saline over 12 hours 5 days a week.
                          - was also advised to drink 4 cups of tea.
Feb 1988 at 16yrs - Transferred from Paeditrician care at Princess Mary Hospital to Adult Haematology
                             care at Middlemore Hospital.
May 1988             - Port a cath inserted into left top breast tissue
Oct 1988             - Met birth mother and her family
Nov 1988             - Met birth father and his family
Jun 1989 at 17yrs - Adopted father passed away
Nov 1989            - Saw hospital counsellor to help deal with losing father and coping with meeting birth  
                           parents and their families.
July 1994 at 22yrs - Referred to Gynae re recurrent UTIs
                          - Staph aureus bacteramia in port
Mar 1995 at 23yrs - Diagnosed with endometriosis
Feb 1996 at 24yrs  - placed on Clomiphene for HRT
May 1996             - Portacath infected and amenorrhoeic
                         - iron overload at 2,890
Apr 1998 at 26yrs - started fertility treatment
Jun 1988             - Diagnosed with IDDM Protophane & Actrapid insulin
Mar 1999 at 27yrs - Portacath removed due to recurrent infections 2months shy of ten years
Jun 1999             - CIN 3
Dec 2000 at 28yrs - Pneumonia
Jul 2001 at 29 yrs - Port a cath inserted under right breast
Oct 2001             - Sinus problems noted
Jul 2002 at 30yrs   - Diagnosed with Haemosiderosis with biventricular cardiomyopathy
Feb 2004 at 32yrs - Diagnosed with Osteoporosis
Apr 2008 at 36yrs - ? Osetoarthristis iron related arthritis or chondrocalcinosis                        

[caraiti]

I have been asked by admin to write about some of my experiences as I live my life with Thalassaemia.
It is not easy for me to know where to start or what issues to address.
So again I will ask you the members, to ask the questions or tell me what you would like to hear and I will try to fulfill your curiosity.

I have entered a brief timeline of my medical history to give you an idea of what you may like to ask me or tell me.
Please feel free to submit your comments or questions.

[Jenny J]

Hello, Well I can see your blood transfusion has worked wonders for you today.  It must of been that big sleep you had there today.  What a fabulous place.

[caraiti]

I knew it would be you...
Welcome to the forum.
Now you can tell what you know for a change

Jenny J is one of the many nurses who have given me my bloods and watch me grow into an independent person.
Jenny is the nurse I was commenting on earlier in one of my posts.

[drbalo]

Hello, Well I can see your blood transfusion has worked wonders for you today.  It must of been that big sleep you had there today.  What a fabulous place.

Hi, nice to meet you! You must be a experienced nurse in taking care of thalassemia patients! Hope to see you sharing your words here.

Caraiti is one of the very motivated patients I have seen. I am deeply impressed by her! Keep it on!

Do bring more thalassemia patients here 

[drbalo]

Year 2008 onwards: Blessed and happy person ever

[caraiti]

Yeah and wiser hahaha

[caraiti]

Do bring more thalassemia patients here 
[/quote]

At this stage there is only me the other patients that Jenny looks after are Haematology patients that range from chemo, iron overloads, lucekaemia, anaemia and others... but there is only one Thalassaemic. I'm sorry.
Jenny tells me that there is a new patient that might have Thalassaemia but is yet to be confirmed.
In a way I'm sad because Thalassaemia can be trying but at the same time I'm excited because I might get to meet a Thalassaemic more in person.

Back in 2005 My husband and I flew to Melbourne Australia to meet Professor Bowden.
That was a wonderful experience as I got to meet Thalassaemics just like me.
I'll add that to a new topic

[caraiti]

My haematologist had decided that she had taken me as far as her knowledge so it was decided that I travel to Melbourne, Australia and meet Professor Don Bowden. After fundraising privately for 2 years I was ready.

The following are taken from my diary...

Terence & I are flying to Melbourne.
Feeling apprehensive about the flight. First time out of New Zealand.
Wondering about what's going to happen to me at Monash Medical Centre.
So many thoughts - questions about how they do things, am I normal, am I progressing well, does my management need to change?
I don't want to come across ignorant but there are questions I need to ask.
* How long does their chelation run, how is it administered?
* How often are their transfusions and how many units?
* Is it leucoyte depleted?
* My pituary gland is thought to be turned off
* I may have Osteoporosis

Going through customs and declaring my needles and desferal.
When asked why I have the stuff I answered that I have Thalassaemia.
The custom officer says oh.. go on through.
He actually knew what I was talking about.

[caraiti]

Sorry had a hypo so I had to stop and deal with it

11th July 2005
Met Professor Bowden today.
Very emotional. Wasn't going to cry but couldn't help it.
So much feeling & emotions that have been bottled away. To come through 33 years as an unknown and then find yourself in a community of people who understand and relate to what you are saying.
The key note Professor Bowden said "Treatment is to the patient's comfort level"
The patients are transfused regulary to maintain their hb levels to where they can function and live normally.
Discussing the infertility brought a lump to my throat and the tears. To hear that it is possible even if my pituary gland is closed brought alot of pain and fustration. Some of his patients need extra help conceiving so they have fertility treatment there.
I learnt that my weeping is not depression but emotionals controlled by my hb levels and that it is normal.
None of the patients have portacaths for their desferal but go subcut.
Professor Bowden didn't elaborate on the clinical management except to reinforce that the management be tailored to the individual. He wasn't too keen on my continuing to extend transfusions as he has seen patients with enlarged foreheads caused by bone marrow being over worked trying to produce the red blood cells. I promised to not push my body's limit.
Professor Bowden's main goal was that I go back to New Zealand confident in myself and what it means to be me - a thalassaemic individual.
Over there Professor Bowden doesn't use the label Thalassaemic as they are people. A community within a community. For me personally I use the label as that's how I identify who I am. In New Zealand it isn't well known so I probably don't get the same reaction on a bigger scale as these patients would do.
It's also comforting to have the label for me as it describes who and what I am, even though the knowledge isn't there for everyone to understand.

[caraiti]

15th July 2005
Today the Monash Clinic is expecting 12 patients. 12 patients in one room.
This is taking me some time to comprehend. Even just 1 patient would be exciting to me because that's one more than me. Sitting in the nurse's office talking through my apprehension with my husband..
It's the first few minutes of introductions I'm worried about. How do I start?, What should I say or do?
I don't want to come across as ignorant or boring. Wish my Haematologist was here to be my mouth, maybe then I can hide in the background. The nurse Libby was really great taking me around and introducing me to the individuals and their partners. I started weeping :'( and had to apologise to people individually on how meeting them face to face is overwhelming.
It comes back to living life as an unknown, no supposed future, expectancy and no patient to relate to. It's a shock! You go from one life to a different world in a blink of an eye.
The way my emotionals have been, I'm surprised my tachycardia hadn't played up.
This morning I could feel my heart racing and it didn't calm down until after the introductions.
Everything is different to what is at home. Their main transfusion area is the size of my haematology clinic alone. They have a corridor that runs beside the treatment room which has other rooms for the nurses and doctors. Off the main treatment room they have a kitchen for cuppas and a room with a bed where their needles are put in. There is a trolley that comes with goodies from the kiosk and a door that leads to a patio outside which they are allowed to sit even with their bloods.
They have a TV with lazy boys around it and a kitchen table where you can do puzzles, eat or just chat at. I'm quite envious of what they have but not enough to make me want to leave New Zealand or Dr Blacklock.
I got to know 5 patients and 1 partner today. I received alot of positive comments and confirmation that I'm doing okay. Everyone adding their thoughts and experiences which was very helpful to both me and my husband. I feel that I have grown so much in this small time than what I have done in my life.
I can't get over how there's another me in each of the people I met.
Each patient while receiving their bloods are behaving differently, theres the  quiet ones who just want to rest, the walkabouters, the livelys and the chatters. All the different faces that I go through when receiving bloods.
The main thing both my husband adnd I noticed was everyone's attitude - humour and positiveness.
Maybe this is the character of Thalassaemia. We all have ways of dealing with life but it is always with some form of humour or directness.
Through talking and sharing our experiences, I have rediscovered myself.
I made life friends that day and keep in touch from time to time.

[Admin]

(post by caraiti on: July 20, 2008, 09:43:44 AM )

This is a Thalassaemia patient's question at Thalpal.com

Is there any way found to fight tiredness?  For the last 3 or 4 months i feel my fatigue is getting worse, accompanied by short breath, dizziness and when i stand up after laying or sitting down, i would need some seconds till blacksight disappear.  Headache comes almost everyday, and when it's severe enough, i couldnt even lift my head from my pillow.  I am taking my vit supplement, Bcomplex, C, and calcium daily. I always feel the urge to sleep, but when i wake up i never feel fresh and fit, meanwhile i have many things to do.  My auntie who had thal minor just passed away at the age of 55 in her sleep, following dinner she felt tired, got short breath and laying down. (Is life expectancy for thal minor  shorter than normal people?) Her Hb range was 8.  My Hb ranging from 8 to 9, one of the doctor said, the anemia causing headache as there are lack of blood cells which supposed to distribute Oxygen to the brain, is that the reason of my daily headache?  I am now taking paracetamol daily for my headache, sometimes it works, mostly not. I cant take other pain killer as i have allergy.

This is the moderator's reply

The doctor is absolutely correct. Lack of oxygen is the cause and will cause headaches, fatigue, dizziness and numbness in the extremities. Your hemoglobin level is not sufficient to provide adequate oxygen to your cells. Although your Hb is not low enough to require transfusions, it is low enough to make a serious impact on the quality of your life. I have never heard that thal minors have a shorter life expectancy but I have heard from many minors in their 40's, 50's and 60's who say that their condition has worsened with age.

I would suggest adding wheatgrass extract and/or tablets to your daily supplement regimen. Make sure your folic aid supplement is at least 1 mg daily. Many members of this group are also currently investigating carao syrup to see if it can help with thalassemia. It is suspected that it may be of more benefit to minors than to majors but we even have one early report of a higher hemoglobin level being maintained in a young major, so this definitely bears some watching. Learning deep breathing techniques may also be of some value in drawing more oxygen into your lungs to help optimize the efficiency of your lungs. Mild exercise such as walking or swimming at your own pace and only for as long as is comfortable (do not push yourself) can also help to improve your circulation and help distribute oxygen throughout your body. A "hot" balm such as Tiger balm can be applied to the areas of your head that hurt the most, such as the temples and back of the neck. This will help draw blood to the affected areas.

I hope this helps.