Dori is back & need you all more than ever

Sorry, it took me time to start this writing. Thank you for your help. I really believe that part of the problem is that I left this group. I know I should have those tests, but things like that are a bit complicated.

It has been 8 days now and I think I have got myself for a good amount back on track. I added my vitamins again to my routins (I took it all month long during April - a record) and also tea with meals. I am also taking 3 times a day L1. They really should have offered my a butler to set up a nicely schema for all those tablets ;)

I have contacted a few more  people to see wether or not Exjade/Deferiprone will be an option. And the really good thing is that today is the first day I have my pain under control. I am a bit scared I am going down to 2 tablets of diclofenac a day somewhere next week.

I have arrange a phone call with my doctor which will happen somewhere on Tuesday - any suggestions are welcome. As I had a lot of kidney pain during the week I suggest I must ask to repeat those Exjade tests. I wanted to complain about the still torturing pain but it seems that has settled down. Well, only if I do not move and walk so less as possible those stairs. And one should still be able to move a bit, not, so it might be a bit of concern. Also I must tell that I was yelling and crying of this horrible pain all weekend.

I was going through my very unorganised archieve (mixed sorts) and to my suprise I found a lab report from april, may, june 2009. Even then I had not such a high level of ferritine. When I did take my folic acid bravely my ery's went up. That really catched my eye.

Indeed, never lose hope. I will knock most of the iron out soon.  I am happy I am in this state during summer. I love summer. I always say I was born in a wrong country - haha.

Thank you Syaida and Zaini,

-Dori
PS Zaini, have you been able to get some good Exjade for little Z? I hope so.

Desferal:

I have asked the pharmacy about this last saturday. Not any mention of a formule - so I have no idea. My pumps with desferal were prepared somewhere else (a local hospital?) but delivered at home by pharmacy. I let them go back to '00 but nothing was found. Since those records (hospital where I was mainly treated) went missing I have no clue. And so long as I have no clue, nobody will give it another try.

A quote I used today to start with my preparations for tax law (I am already hopeless behind my own studying schedules) was "A journey of 1000 mile starts with 1 step".

I should not have written that about being painfree. It is again out of the roof.

Let me tell you this. During the night or early morning I can studying very well and my brains are also very active, hehe. I realized during last night that infections hence your ferritin up. Now I wonder how much it will come down now during this course of meds. On the other hand,  the level of ferritin says nothing about the amount of stored iron in one's body.

Totally off-topic, tomorrow I hope to find the power to go and see Fairuz singing in Amsterdam. I have no tix but they will put a screen up somewhere.

Dori

Hi Dori,
How are things going on with you now. Are they settled, or improving? I have read your post, and want to share with you this difficulties. I don't know what to tell you to eliminate this, I only can wish you recover soon.

Souly

Hi Souly, thank you for your kind words. Finally, I seem to have controlled this horrible pain Although I do not know why. Maybe it just take time for them to work. Or they reduced swelling over the last 1.5 week. I have no idea.

As for the chelation part: I am now up to 4 pills a day. I have not the feeling it is working but we'll seen. To my suprise I found out a couple of minutes ago that my next tanking up is at 5th July. Lab draws are at 4th July. So I'll continue my vegetarian diet until then. I know one earns more blood the other way round but this works the best for me. I hope to speak my doctor soon - but there's no particular date anymore - to discuss combin therapy of Ferriprox/Exjade.

Time to return to my law books. It is too hot for the Netherlands and it suddenly came up. I was not prepared. It is just way too hot. 35C+ and very stuff.

How are you doing Souly?

Dear Dori,

I am very happy to hear the improvement you have made. That's a wonderful news.

Dori, I am not a patient, but a parent of my two E-beta thalassaemia. One of them receives blood transfusion every four weeks. He is 6 yrs old and on a exjade. Fortunately, exjade is working excellent for him. He started with feritin 1380 with fluctuation in between and three years later (now) his feritin is around 700. The other son has not received any transfusion. I hope that he can escape from this. Although I am not a patient, I understand everything the patients go through and the obstacles they have to overcome. I am thrill to see everyone problem and I admire this platform for the sharing of useful information. I am not the active member, but I read through almost all and every post here. I am in a developing country, therefore, the medical care is far below the standard that I have to face. However, I encourage everyone here to have hope. Explore new possibilities to fight against this disease.

Again, I wish you all the best in your exam.

Souly

Thank you for your kind words. I am happy to hear your son was able to decrease his level of ferritin so much. Keep the good work going on! I too hope your other son can escape from it. But remember, if it has to be happen, with two it is more enjoyable to sit in a hospital. That was probably very ugly English. It is so hot here, that it is a battle to keep studying going on. They expect storms but the sky is here still completely blue and almost cloudless - but there is a little wind It's over 36C outside.
I do not know where you life, but I do know (for example) how hard it is to life in Kenia and have a hbpen.
Thank you once again. How old are your sons if I may ask?
-Dori

Dear Dori,

I am sorry for not replying sooner as I was away. My elder son who is on hyper transfusion program is 6 years old and the younger son is 3 and a half years. I wish everyday that they both can avoid the transfusion. Luckily at least for now, the younger has not gone through it. Dori, I live in Cambodia where the knowledge as well as the information about thalassaemia is ignorant. When this happened to my elder son three years ago, I was not aware about the disease at all. The Ministry of Health seems not aware of this, and therefore, it is not on the priority list of its agenda. Recent test shows that the prevalent is about 30% carriers (basically similar to that in Thailand). That's why I have established the Cambodian Thalassaemia Association (it is not a member of TIF). Its purposes are to disseminate the information and the knowledge to the public. It has been working with the MOH to draft a guideline  for thalassaemia treatment (it is now in the final stage to be approved by the MOH ) through which it will help dozens of thousands of poor people across the country. My personal purpose is to not let other people have problem like me. I have to bear all the costs related to treatment including the hospital fees and medicines.

The weather in Phnom Penh (the Capital of Cambodia) is around 30-35 too. It's in a rainny season, so it is expected to rain almost everyday.

How is everything with you now?
Souly

Dear Souly,
Although I should learn about the spelling I do know it is the capital of Cambodia. I have always loved geograpy. Vacation started, I said in another post. I now remember I still must write out my notes from Antayla. I remember there was something about Cambodia there too. In Dutch we say Cambodja, isn't it?
What is the MOH?
Congratulations on all you do and please keep us up to date,
Dori
PS I am tanking up next tuesday.

Dear Dori,

MOH means Ministry of Health (To which I referred to the Ministry of Health of Cambodia). Another correction that I want to make from my last post was that The Cambodian Thalassaemia Association is a member of TIF (I said in my last post that it was NOT). TIF invited me as the Chairman of the Association to attend the conference in Antalya too by partly sponsoring some expenditures. Due to the budget constraint, I could not go. I have now applied for the conference in Thailand again (3-5 November 2011). I hope that I will be fully sponsored this time as the cost will be must less compared to that in Turkey. I wish you and others in this forum can go there as Southeast Asian region has very high prevalence and so many people are struggling to find the right treatment.

There are a few dedicated medical doctors, scientists, official from the MOH, parents and those who are very concerned about thal established this association. It is still young and have not done many tasks (although we have many task to do) due to the budget constraints. I hope that we can overcome this difficulty in coming years so that every patient and couple at risks can benefit from its activities.

Together, from every angle of the earth, will free this society from Thalassaemia major.

Souly



 

Soouly, thank you for your informative posts. I love to learn new things and to see how it is connected and how not. I would like to go to Bangkok as I believe Asia as a part of the expierence. Also the very first (bone marrow) transplant) on PKD was done in Bangkok. If I may refound the article and the doctors names/hospital I would like to give them to someone who is going to Thailand as I have a few questions about it. This little boy had PKD along thalassemia and he is the not the only one. Let me try the other case...http://www.sltrib.com/sltrib/home2/52101940-75/jonah-family-gomez-verschoor.html.csp

Do you know by chance what sickle hemoglobin D is? Is it the disorder sickle celle disease (fully not a carrier?).

I had a blood transfusion this week and did lab work on Monday. With my dumby brains I could notice it shows sign of inflammation not particular infection. It is always difficult to remember the difference. I went in again on Friday has I had to do some particular tests for wednesday. I had to be there and I do not plan to be there twice this upcoming week. My hgb was pretty low (8.5) so I wonder how much my post-hgb will be.

Budget contraint.... the hotels always have many, many stars. I hope you really can go to Thailand!!!!

you're a gem dori.
best wishes always!!!

Thank you for your kind messages. It helps me to read them. I am very  frustrated. I wish I could say it is a lie, but it is my truth at the moment. I wrote this message for facebook but decided to post it here:

Joanne, and others, sometimes I am frustrated, sometimes more than ever which happens when I do not speak to Mariam for a too long time, but everything is evil. I mean we all do not want to take pills but we have no choice, right? It's the mixing of Exjade I hate the most (beside side effects) and it's the 8-hour rule from Ferrprox plus the immediately hour afterwards I hate the most. I need to plan those pills a lot because the hour after I need to visit a bathroom. if I do not immediately that iron burns in my bladder. And yes, it let me eat day and night (which you can see) if I not be the boss about my food patron. Ignoring the urge/pressing to eat is hard. Nowadays I simple cannot eat. I do not know why. I try but I cannot. Stupid stomach.
Joanne, generally people have no problems with Exjade. But I would advise you to play with the times and see what works the best for you. Don't listen to me. I am only frustrated. fe is 2100+ Remember: decide self what works the best for you and keep the motivation going!

It is not that i want to complain, because I do not like to complain. But nowadays I am very frustrated. Dearest ferritin level, be brave and be kind.

I also needed a extra tranfusion (two units) and will have my regular transfusion this wednesday (2 units). So my dearest ferritin level won't go down (for awhile).

How are you doiing, love and prayers? And how is the family from Bangaldesh doing?