Hello everyone

Hello everyone.
THE drama of my health continues.
Here, its me Kathy, as confused as ever . three weeks ago the doctor  told me that my symptoms and blood tests results  is consistance with having multiply myeloma.
Today when I went for my futher blood tests the Ct scan result of the enlarge glands in my neck, it was not ready ,but the Doctor this time told me ,he is certain that I've got THAL minor and sickle cells traits and he can't see me having much problems ,therefore I should enjoy life.He did say they are concern about the enlarge gland in my neck and I  will probably need biopsy at some stage,
despite of  his advice I'm still in pain .I feel it is  bitter sweet result for me ,I'm still confuse.
I will keep you all inform  with my search of finding the proper management of my whatever illness I've got.
THANK_YOU all for being there and for caring for a lost person like me.It help me to write and vent my fustration,that is because I feel ,that either the doctor don't know or they don't care enough.Thanks

Kathy,
     So sorry you are having such a hard time.  It is incredibly frustrating when you can't get answers about your health. When you have more than one illness or medical condition, things get really confusing. So, is your doctor saying you have cancer, or you don't?  I would probably go for a second opinion from another doctor, if you can.  Usually if a person needs a biopsy, it is done as soon as possible.  Why is he saying sometime in the future?  If there is any chance of your having cancer, time is of the essence, as far as treatment is concerned.
     Do you know what your average hemoglobin count is?  Sometimes doctors who do not know better, tell patients they have Thal minor when they may have Thal intermedia.This happened to me for many years and caused me many problems. 
     Keep your spirts up and keep fighting!  Please let us know what is happening.  Jean 
     

.Hi Jean.
Thank-you for caring,( Abnormal heamoglobin 38.9)
(heamoglobin F)0.3
and some other blood result was not good either and my GGT was very high too.
It seems as if I' ve got very little choice ,everytime I go to see the doctor i'm allocated to a different one and I have to explain my condition to them all over again I'm getting depress and tired of doing so because they are not listening.
I don't have private medical insurance, therefore I have to deal with government health system.
Anyhow its better than nothing at least its keeping  me alive(LOL)
regards kathy

Kathy,
     I don't know what key I keep pressing that sends messages accidentally, but I seem to do it all the time.  Anyway, the only way that I know hemoglobin levels is when the numbers are like 6.6, or 10.5, etc.  (Can anyone convert her level - 38.9 - for me so I know what it means?)                                       
     Are any of the doctors you see blood specialists?  I guess that doesn't always matter as the one I saw years ago didn't know much about Thalassemia.  One doctor I was tellling my story to kept looking at his watch.  I wanted to say that if he needed to go somewhere, he should just go!  Another time I told a doctor I would go anywhere, teaching hospital, research hospital, specialist, ANYONE, ANYWHERE I could get some help, and he just didn't have any ideas for me.  That's when I took matters into my own hands.  Luckily I had insurance and some resources to go somewhere. 
     I wish I could be of more help to you. If I knew what your hemoglobin level is, I would know more what to say.  Please keep trying, and post any information you get and also your frustrations.  It helps to be able to talk to other Thals.  Jean   

Can anyone convert her level - 38.9 - for me so I know what it means?

If you want to convert the hematocrit to hemoglobin, just divide the hematocrit by three.  That should make her hgb around 12.96 (or 13 if you round to the nearest tenth).  That's on the low side, but still in the normal range for women.

THANKs to JEAN,.DANIEL AND JZD24 .I have  faith and hope that my higher power is and will be by my side all the way.None the less its nice to know that there are people like you who care.I'm gratefull for all the blessing ,
Something miraculous happened in Tasmenia in Australia, two miners were rescued from under ground after being buried for many days following an earthquake.THIS renewed my faith.

Kathy

Hi Kathy10 the lab data you have discussed does not tell anything which one can diagnose either thal minor or sickle cell trait. Multiple myeloma is a rare malignant condition where there is typical features in your X Ray and other blood tests. Why they suspect multiple myleoma in you I am suprised, usually its in old age.
Any way if you want rule out your thalassemia stauts, request your doctor to do a hemoglobin electrophoresis, if your hemoglobin A2 is more than 3.5 and your CBC and blood picture consistent with thal minor you can be a thal minor. Hemoglobin electrophoresis and simple sikling test can distinguish both thal minor and sickle cell trait as well.

Hello Mustho,
Thank -you for your interest in my case, and I do appreciate all the helping hints that is forwarded to me.
It has been ascertained that I do have thal minor and sickle cells.
I've also been told recently that I've got an increase in my lymph nodes and my immune system is compromised.I was advised by the doctor to keep a close eye on it and to have a good diet intake or more or less to be cautious .eg to avoid anything that might make it worst.
the heamatologist will review in three months,therefore life goes on.
kathy.

Hi Kathy10 as I said earlier its not difficult thing to rule out sickle cell trait and beta thal minor, I am still curious you have beta thal or alpha thal. Because my understanding compund hetrezygous like this of sickle beta thal sometimes need transfusions, but they may not need transfusion either.

Now I have more questions since you have lymph node enlargements, well again lymph node may enlarge if you have frequent infections. I am not telling not to follow these things. But my curiosity is if you have a hemogolobinopathy there are possibilities your lymph nodes get involve.

Any way keep on following advice of your doctors.

Hi Mustho.
Next time when I visit the doctor I will ask him more questions .this time I will write down all my question so that I dont forget.
Forgive me I'm somehow ignorance as to what kind of thal I've got.But I know something is wrong with my body because I get lots of pain and I'm always tired , at times I'm confused and can't sleep and for the last five yrs my health has gone bad to worst .I  do have oesteoarthritis in both knees but I dont know if I get any other infection.very rarely get the flu and I recover very quick.
During my childhood I was always aneamic and nearly died when I was 6/7yrs old then the doctor said I had pernicious aneamia.But I never had blood transfussion ,only oral ferrous gluconate and folic acid, for treatment,But then it was in the 1960 thallasemia was unheard of.
I hope i make sence if not consider my age( LOL) Kathy

Kathy,
     Has any doctor ever said that your spleen was enlarged?  Have you ever had a blood test to check your iron (ferritin) level?  Maybe you have thalassemia intermedia.  They told me back in the 70's that I had thal minor, but it turned out that I had intermedia, and eventually needed regular blood transfusions. 
    It would be really good if you could get to a Thalassemia center. Where do you live?  Jean   

Hi Jean
I live in Perth western Australia and there is no thalassemia centre only a heamatology centre that deals mostly with oncology patients,
I've been told there are only 15 people with thal in this state.I have a feeling they think that I'm too old and crazy so I'm not worth the worry.I was given lithium and they said that I had bipolar disorder ,I've stopped taking that rubbish because it was killing me quicker.I got depressed because I felt sick for so long and no one in a position to care seem to be interested.The fact is I live in a racist state where colored people like me get ignored and died of the lack of recognition as a worthy human being.It is better for them to classified a person as being crazy than to invest time to find out whats the trouble. I know what I'm talking about I was working in the medical field for 28yrs.
People are dying here, everyday due to the lack of proper medical care and lack of govnment funding to hospital.

Hello Kathy,

Sorry to hear your having problems in our developed country. There is a thalassaemia society in your state also a treating hospital were all the thal major patients attend.

I would like to help you out so you can get incontact with the right people within this field within Perth. If you would like to email  me privately with your contact number I will ring you, and I will direct you to the right people. 

Here is a list of contacts within your state. I hope this all helps and that we can get you sorted out quickly. You are so worthy and nobody could ever put a price on a human life.

Thalassaemia Society of Western Australia
PO Box 879
Morley
WA 6943

Treating hospitals / clinics
Sir Charles Gairdner Hospital
Department of Haematology
Hospital Avenue
Nedlands
WA 6009
 
ph:  +61 8 9346 7600
fax: +61 8 9346 7607
 
Royal Perth Hospital
Department of Haematology
Wellington Street, Perth
WA 6000
 
ph: +61 8 9224 2244
fax: +61 8 9224 3511
web: http://www.rph.wa.gov.au/
 
Princess Margaret Hospital for Children
Roberts Road
Subiaco
WA 6008
 
Ph: +61 8 9340 8222
Fax: +61 8 9340 7802
Web: http://wchs.health.wa.gov.au/

Kind regards Miaki

Hi Maiki,
Thank-you for your concern .I've being seen at this centre you mentioned and they are the one that  at one visit told me, It seems that I could have multiple myeloma and get me worried for three weeks then the next visit contra-indicated by another of her colleage telling me that the doctor was wrong she should not have told me so.
I came to the conclussion that they don't know either/or cann't be bother , to them  I'm obsolete
 In the so called developed country people are very cold and very materialistic and indifferent to one another
I've worked as a resgistered nurse  in both of these hospitals mentioned in your posting.
There is something wrong with my health that is because they didnot dismissed me and my blood test is not correct,eventhough I requested for my blood tests results I was denied this time
I have live in Australia for 25 yrs and raised four decent sons  which is my pride and joy and every mothers dream. not to mention I've worked damn  hard too. The name develop mean nothing to me because I've experience some hard cold fact of so called develop country reality, some of the people can't stand any intelligent black people they think we ought to know our place and they surely try to cut you to pieces whenever the opportunity arises.I need to vent that is why I write my thought here and excuse me if this annoy anybody,but I'm not sorry .Thank-you for taking the time to read from me. Kathy the fustrated one.

Kathy,
   I can see why you are frustrated, but please try again. Maybe Maiki can hook you up with someone who does care.  It only takes one caring person to help.  You need some help and answers.  I went to so many doctors who didn't know anything about Thalassemia (but of course acted like they did), until I found some help.  It took years. 
     Try again and ask for a ferritin check.  If you have Thalassemia intermedia, your ferritin level could be giving you difficulties and making you sick or your spleen might be enlarged and causing you trouble.  In any case, they should be able to tell you something.
    Don't give up.  Jean