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LIVING With SCD(Sickle Cell Disease). - Health (5) - Nairaland

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Re: LIVING With SCD(Sickle Cell Disease). by hinere(m): 4:58pm On Aug 10
Chii59:

Stop it. Just stop it.

Why?
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 12:42am On Aug 16
hinere:


Why?
Coz I don't want such adverts on my thread.
I don't want people that read thinking that I'm working with any of you . This thread is meant to be neutral with no religious or affiliation with any organizations.

No such adverts henceforth.
Respect yourselves

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 1:29pm On Aug 21
Will be sharing Kemis story today.

Enjoy!!!
HOW WELL DO YOU KNOW YOUR SYMPTOMS?

As someone living with sickle cell one thing I have come to term with is my symptoms.

Last week Monday, I was home and feeling extremely tired, 3 days prior to that, I have been losing my appetite to eat foods, fruits and even drink water. The highest I can do is to force myself to drink water by adding little garri inside the water.

So Monday came, I was so tired to do anything, with constant headache that paracetamol is no longer working for.

So I decided to go to hospital , before going, I already went to lab to run Malaria Parasite and PCV to enable faster consultation and diagnosis.

Getting to Hospital, I talked to the Dr , see me smiling, the result already show anaemia and presence of malaria parasite.

Though I really can't say how serious it is. I just knew that I will definitely be admitted even if not for blood transfusion.

Knowing fully well I will be admitted, I am still not comfortable, I still try asking if the Dr can treat me with drugs alone.
He laughed at me and said Kemi you are going on admission.

I just told him, I need to go back home and prepare,since I used my leg to come here. Though I was tired , I can still go back home.

Got home and receive some emails that I must attend to urgently. I forgot about hospital and focus on the work.

Back to hospital, I was examined again, I needed blood transfusion.

Thank God I have my brother with me who has same blood type with me.

Did I tell you? All through I was on call to attend to some work. After the call, I have to attend to a client on phone, the phone call was like 1 hr plus.

Even at the lab, the were like you are not too pale, I have learnt to mask my pain or tiredness to some extent.

I never knew I will spent 9 days on that hospital bed.

After the treatment, I still have this constant headache even when I was obviously stable.

But the Consultant said you are staying here because of the headache, I told him Dr give me drugs now, I will be fine. He said no, like he knew there is something more.

Friday evening came, I told my mum, I was feeling cold, I use one blanket, it wasn't enough, use another, it wasn't enough.

Ahhhh, my mummy has never seen me like that in many years. I knew she was afraid.

Within 5 minutes I was shaking like a fish outside water, the vibration was too much.

All I could say was mummy call the Dr, the Dr came running with a nurse, my temperature has skyrocketed, I couldn't breathe again.

God just knew what was happening and sent the consultant to come at the right time.

Dr, check blood pressure, check temperature, body was so hot that the thermometer couldn't read it again, the nurse scream sir, the temperature is so high.

All I could say was to affirm I shall not die but live. The next prayers was God I am yet to fulfill my purpose don't allow me to die with my full potential.

My mum didn't know what to do?
I used all my energy and said Dr please I can't breathe.

The Consultant ran outside to bring oxygen himself, open oxygen it was hard, ahhhhh! Which kind frustration is that, he brought another one,
All through I was already given injection, yet the temperature and cold never reduced.

After 2 hours, the cold started reducing, my veins collapsed, they have to use my leg,

Drips upon drips, test upon test, injections upon injections.

After 3 hours of being on oxygen, I got some relief
My mum, dad and Toba were lost, running helter skelter, buying this and that.

In all this, I am grateful to God, what if I neglect those symptoms and not go to hospital,
What if I thought I was well and force my discharge by signing?

What If I thought I can manage it at home? What if I see no seriousness in it.
Two symptoms I don't joke with is tiredness and headache

I follow my own advise. I kept telling sickle cell warriors, don't neglect symptoms like headache and Tiredness, they are not only linked to Malaria.

Infection and malaria was actually the underlying cause. Even if I drink ugwu, malt,milk, tomatoes,and all that,it won't even help the red blood cells that was breaking down at higher rate because the underlying cause was never addressed.
My mother was scared, I haven't had blood transfusion in the last 10 years but this is me thanking God for sparing my life..

With God by my side, I'll keep winning this battle.

©️Kemi Oguntimehin

3 Likes 1 Share

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 6:07am On Aug 28
UPDATE!

This should have come up earlier but forgive my forgetfulness, there's do much going on with this small body and mind.
Got back to school (Osogbo) Since about 3 weeks now,(no, school hasn't resumed officially) . I have another professional exam fixed for next month and I needed to come back to school for some submissions pertaining to registration. Done with the reg, but I still have to stay back to read,(a lot of money has gone into it) since I haven't been doing much of it at home.

Now the exam in 3 weeks and I feel so empty upstairs,Like I haven't even been reading.
Moreso, I have been getting stressed,with serious pains on my hip daily (I should see a doctor soon,I feel it's getting worse)and having less sleeping hours too.

I know it will soon be over but I'll like you to say a prayer for me wherever you're reading this.
(Thank you for doing that).

I'd love to keep you abreast of what's going on with me but my phone hasn't been cooperative these days? But I'll still try.

I love y'all
Stay safe
Peace ✌️✌️✌️✌️✌️

3 Likes

Re: LIVING With SCD(Sickle Cell Disease). by sexuential: 5:45pm On Aug 28
Fhunkhy1:
Will be sharing Kemis story today.

Enjoy!!!
HOW WELL DO YOU KNOW YOUR SYMPTOMS?

As someone living with sickle cell one thing I have come to term with is my symptoms.

Last week Monday, I was home and feeling extremely tired, 3 days prior to that, I have been losing my appetite to eat foods, fruits and even drink water. The highest I can do is to force myself to drink water by adding little garri inside the water.

So Monday came, I was so tired to do anything, with constant headache that paracetamol is no longer working for.

So I decided to go to hospital , before going, I already went to lab to run Malaria Parasite and PCV to enable faster consultation and diagnosis.

Getting to Hospital, I talked to the Dr , see me smiling, the result already show anaemia and presence of malaria parasite.

Though I really can't say how serious it is. I just knew that I will definitely be admitted even if not for blood transfusion.

Knowing fully well I will be admitted, I am still not comfortable, I still try asking if the Dr can treat me with drugs alone.
He laughed at me and said Kemi you are going on admission.

I just told him, I need to go back home and prepare,since I used my leg to come here. Though I was tired , I can still go back home.

Got home and receive some emails that I must attend to urgently. I forgot about hospital and focus on the work.

Back to hospital, I was examined again, I needed blood transfusion.

Thank God I have my brother with me who has same blood type with me.

Did I tell you? All through I was on call to attend to some work. After the call, I have to attend to a client on phone, the phone call was like 1 hr plus.

Even at the lab, the were like you are not too pale, I have learnt to mask my pain or tiredness to some extent.

I never knew I will spent 9 days on that hospital bed.

After the treatment, I still have this constant headache even when I was obviously stable.

But the Consultant said you are staying here because of the headache, I told him Dr give me drugs now, I will be fine. He said no, like he knew there is something more.

Friday evening came, I told my mum, I was feeling cold, I use one blanket, it wasn't enough, use another, it wasn't enough.

Ahhhh, my mummy has never seen me like that in many years. I knew she was afraid.

Within 5 minutes I was shaking like a fish outside water, the vibration was too much.

All I could say was mummy call the Dr, the Dr came running with a nurse, my temperature has skyrocketed, I couldn't breathe again.

God just knew what was happening and sent the consultant to come at the right time.

Dr, check blood pressure, check temperature, body was so hot that the thermometer couldn't read it again, the nurse scream sir, the temperature is so high.

All I could say was to affirm I shall not die but live. The next prayers was God I am yet to fulfill my purpose don't allow me to die with my full potential.

My mum didn't know what to do?
I used all my energy and said Dr please I can't breathe.

The Consultant ran outside to bring oxygen himself, open oxygen it was hard, ahhhhh! Which kind frustration is that, he brought another one,
All through I was already given injection, yet the temperature and cold never reduced.

After 2 hours, the cold started reducing, my veins collapsed, they have to use my leg,

Drips upon drips, test upon test, injections upon injections.

After 3 hours of being on oxygen, I got some relief
My mum, dad and Toba were lost, running helter skelter, buying this and that.

In all this, I am grateful to God, what if I neglect those symptoms and not go to hospital,
What if I thought I was well and force my discharge by signing?

What If I thought I can manage it at home? What if I see no seriousness in it.
Two symptoms I don't joke with is tiredness and headache

I follow my own advise. I kept telling sickle cell warriors, don't neglect symptoms like headache and Tiredness, they are not only linked to Malaria.

Infection and malaria was actually the underlying cause. Even if I drink ugwu, malt,milk, tomatoes,and all that,it won't even help the red blood cells that was breaking down at higher rate because the underlying cause was never addressed.
My mother was scared, I haven't had blood transfusion in the last 10 years but this is me thanking God for sparing my life..

With God by my side, I'll keep winning this battle.

©️Kemi Oguntimehin


God continue to keep you in gud health, understanding and crisis free.

2 Likes

Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 7:51am On Sep 08
Good morning my neighbors. How was your night? Have you ever heard of PICA? Probably most of you have individual experiences with it but I'll share mine later..

PICA AND SICKLE CELL DISEASE

Pica is an eating disorder that causes a person to crave and eat non-food items that have no nutritional value. It is a common problem in persons with sickle cell disease.

What are the CHARACTERISTICS OF PICA?

Persons with pica may eat a variety of non-food items, including paper, styrofoam, starch, chalk, crayons, dirt or clay, sponges, hair, or other non-nutritional items. Persons with sickle cell disease are known to have a higher rate of pica than the general population. The reasons for pica are not known, but some cases have been linked with iron deficiency, lower weight, lower hemoglobin, pregnancy, nutritional deficiencies, lead poisoning, behavioral problems, and a family history of pica.

HOW IS PICA MANAGED IN A PERSON WITH SCD?
If pica is suspected, your child’s lead and iron levels will be checked to make sure your child does not also have lead poisoning or iron deficiency. If these levels are normal, your child might be referred to the Psychology Clinic for therapy to help your child learn how to control the pica.

In some cases, health problems from pica can be severe, depending on what is being ingested. Possible problems include infection, digestive tract blockage, poisoning, malnutrition, and damage to the teeth. Some health problems may require surgery.

If you suspect that your child has pica, talk to the Doctor and seek for medical advise.
Re: LIVING With SCD(Sickle Cell Disease). by blanquecheque: 12:03am On Sep 15
I really commend your efforts, Fhunky1. You must really be an amazing warrior. Well done! I read your posts from the first one to the very last. You kept posting virtually everyday since almost two years ago, even when no one was showing any sin of reading! Wow! I salute your spirit! May God double up your health and energy. He will always meet you at every point you need him. You shall fulfill your destiny. Your life will be meaningful. You will look back one night with your grandchildren in your grey days and smile: "it was all worth it".

It's a great job you're doing. Keep it up!

And to all other survivors, the Lord will see you through the journey. Never waiver in your faith for a richer and more life.

PS: I'm sure you must have escalated this advocacy to other high traffic channels. Thumbs up!

Fhunkhy1:
Will be sharing Kemis story today.

Enjoy!!!
HOW WELL DO YOU KNOW YOUR SYMPTOMS?

As someone living with sickle cell one thing I have come to term with is my symptoms.

Last week Monday, I was home and feeling extremely tired, 3 days prior to that, I have been losing my appetite to eat foods, fruits and even drink water. The highest I can do is to force myself to drink water by adding little garri inside the water.

So Monday came, I was so tired to do anything, with constant headache that paracetamol is no longer working for.

So I decided to go to hospital , before going, I already went to lab to run Malaria Parasite and PCV to enable faster consultation and diagnosis.

Getting to Hospital, I talked to the Dr , see me smiling, the result already show anaemia and presence of malaria parasite.

Though I really can't say how serious it is. I just knew that I will definitely be admitted even if not for blood transfusion.

Knowing fully well I will be admitted, I am still not comfortable, I still try asking if the Dr can treat me with drugs alone.
He laughed at me and said Kemi you are going on admission.

I just told him, I need to go back home and prepare,since I used my leg to come here. Though I was tired , I can still go back home.

Got home and receive some emails that I must attend to urgently. I forgot about hospital and focus on the work.

Back to hospital, I was examined again, I needed blood transfusion.

Thank God I have my brother with me who has same blood type with me.

Did I tell you? All through I was on call to attend to some work. After the call, I have to attend to a client on phone, the phone call was like 1 hr plus.

Even at the lab, the were like you are not too pale, I have learnt to mask my pain or tiredness to some extent.

I never knew I will spent 9 days on that hospital bed.

After the treatment, I still have this constant headache even when I was obviously stable.

But the Consultant said you are staying here because of the headache, I told him Dr give me drugs now, I will be fine. He said no, like he knew there is something more.

Friday evening came, I told my mum, I was feeling cold, I use one blanket, it wasn't enough, use another, it wasn't enough.

Ahhhh, my mummy has never seen me like that in many years. I knew she was afraid.

Within 5 minutes I was shaking like a fish outside water, the vibration was too much.

All I could say was mummy call the Dr, the Dr came running with a nurse, my temperature has skyrocketed, I couldn't breathe again.

God just knew what was happening and sent the consultant to come at the right time.

Dr, check blood pressure, check temperature, body was so hot that the thermometer couldn't read it again, the nurse scream sir, the temperature is so high.

All I could say was to affirm I shall not die but live. The next prayers was God I am yet to fulfill my purpose don't allow me to die with my full potential.

My mum didn't know what to do?
I used all my energy and said Dr please I can't breathe.

The Consultant ran outside to bring oxygen himself, open oxygen it was hard, ahhhhh! Which kind frustration is that, he brought another one,
All through I was already given injection, yet the temperature and cold never reduced.

After 2 hours, the cold started reducing, my veins collapsed, they have to use my leg,

Drips upon drips, test upon test, injections upon injections.

After 3 hours of being on oxygen, I got some relief
My mum, dad and Toba were lost, running helter skelter, buying this and that.

In all this, I am grateful to God, what if I neglect those symptoms and not go to hospital,
What if I thought I was well and force my discharge by signing?

What If I thought I can manage it at home? What if I see no seriousness in it.
Two symptoms I don't joke with is tiredness and headache

I follow my own advise. I kept telling sickle cell warriors, don't neglect symptoms like headache and Tiredness, they are not only linked to Malaria.

Infection and malaria was actually the underlying cause. Even if I drink ugwu, malt,milk, tomatoes,and all that,it won't even help the red blood cells that was breaking down at higher rate because the underlying cause was never addressed.
My mother was scared, I haven't had blood transfusion in the last 10 years but this is me thanking God for sparing my life..

With God by my side, I'll keep winning this battle.

©️Kemi Oguntimehin

Re: LIVING With SCD(Sickle Cell Disease). by Reuben700: 2:49am On Sep 15
Am a warrior but am 19 by the grace of God being a sickler has been very tough for me in a family of 6 am the victim since this year it been up to 6 months I have ever had crisis I was really happy with my self until someone introduced me to a drug that will help me grow the name is cikavit since then I have been falling sick is very tough for me and just depressed I don’t what else to do am just praying that death should come and take me away

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by blanquecheque: 7:30pm On Sep 16
Don't despair, friend. You still have a lot in you to give to the world. Just get a good haematologist and stick to his advice and you'll be fine. I understand sickle cell today is not sickle cell of even 1990. A lot has improved. Many live a ripe and full life. God will make you whole.

Reuben700:
Am a warrior but am 19 by the grace of God being a sickler has been very tough for me in a family of 6 am the victim since this year it been up to 6 months I have ever had crisis I was really happy with my self until someone introduced me to a drug that will help me grow the name is cikavit since then I have been falling sick is very tough for me and just depressed I don’t what else to do am just praying that death should come and take me away

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by williaam(m): 1:19am On Sep 17
Nice work @ op.
SCD is seen as a death sentence in Africa; and Nigeria has d highest number of SCD patients in d world. Am a warrior too, 34 years, living with SCD, is not funny at all, although i have not experienced much crisis but the last two i experience were life threatening. One in 2010; i was in 300l then in school, missed all my 2nd semester exams and i had an extra semester in school becos of dat, i even explained to d HOD; he just said dat there was nothing he can do, dat i should go an prepare for an extra semester. While the 2nd crisis happened during my NYSC period; because of that i was redeployed from Imo State back to Lagos State.
Its not been easy living with SCD; cos everyday u expect a miracle but what many of us don't understand is dat being alive is a miracle; pls let no one take dat away from you. I believe more can be done about the plight of SCD patients in Nigeria, i hope there could be a re-orientation about SCD; because many people are ignorant about the pain we face

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by Reuben700: 7:40pm On Sep 17
blanquecheque:
Don't despair, friend. You still have a lot in you to give to the world. Just get a good haematologist and stick to his advice and you'll be fine. I understand sickle cell today is not sickle cell of even 1990. A lot has improved. Many live a ripe and full life. God will make you whole.

Well sir a lot has to improve that’s only if you have money to sustain your self as a sickler for me I have no job talkless of money to sustain my self is very sad and depressing

1 Like

Re: LIVING With SCD(Sickle Cell Disease). by codedly: 5:25am On Sep 18
Double stem cell is the answer to all ailments in the body.09058204376
Re: LIVING With SCD(Sickle Cell Disease). by codedly: 5:26am On Sep 18
Its curative to sickle cell diseases
Re: LIVING With SCD(Sickle Cell Disease). by DreCharles(m): 11:21am On Sep 18
codedly:
Its curative to sickle cell diseases
Is it free?
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:27pm On Sep 18
Reuben700:
Am a warrior but am 19 by the grace of God being a sickler has been very tough for me in a family of 6 am the victim since this year it been up to 6 months I have ever had crisis I was really happy with my self until someone introduced me to a drug that will help me grow the name is cikavit since then I have been falling sick is very tough for me and just depressed I don’t what else to do am just praying that death should come and take me away

Hello Reuben. Good evening, I hope this response meets you well.
If I tell you I know how it feels please don't doubt it,, including all the financial implications.
If you have been crisis free for up to 6 months without any special drug I think you can still do it. If you feel like this drug has been a trigger to your recent recurrent crises I'll advice you stop it and then watch your body responses. Don't forget to take all necessary precautions pertaining to your health. You'll get through this my friend.
Will look forward to your feedback
Peace ✌️✌️
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:38pm On Sep 18
williaam:
Nice work @ op.
SCD is seen as a death sentence in Africa; and Nigeria has d highest number of SCD patients in d world. Am a warrior too, 34 years, living with SCD, is not funny at all, although i have not experienced much crisis but the last two i experience were life threatening. One in 2010; i was in 300l then in school, missed all my 2nd semester exams and i had an extra semester in school becos of dat, i even explained to d HOD; he just said dat there was nothing he can do, dat i should go an prepare for an extra semester. While the 2nd crisis happened during my NYSC period; because of that i was redeployed from Imo State back to Lagos State.
Its not been easy living with SCD; cos everyday u expect a miracle but what many of us don't understand is dat being alive is a miracle; pls let no one take dat away from you. I believe more can be done about the plight of SCD patients in Nigeria, i hope there could be a re-orientation about SCD; because many people are ignorant about the pain we face
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:43pm On Sep 18
[quote author=Fhunkhy1 post=94064579][/quote]
Thank you for your contribution Sir.
The government has nothing for us. We only have ourselves and our loved ones.
We are miracles ( even though we all haven't realized it yet) and we should treat every day as one. And we should live life to the fullest.
Stay happy Sir
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 9:48pm On Sep 18
blanquecheque:
I really commend your efforts, Fhunky1. You must really be an amazing warrior. Well done! I read your posts from the first one to the very last. You kept posting virtually everyday since almost two years ago, even when no one was showing any sin of reading! Wow! I salute your spirit! May God double up your health and energy. He will always meet you at every point you need him. You shall fulfill your destiny. Your life will be meaningful. You will look back one night with your grandchildren in your grey days and smile: "it was all worth it".

It's a great job you're doing. Keep it up!

And to all other survivors, the Lord will see you through the journey. Never waiver in your faith for a richer and more life.

PS: I'm sure you must have escalated this advocacy to other high traffic channels. Thumbs up!



This got me smiling,. Thanks for all the good wishes and prayers.
God bless you sir.

Well, this advocacy hasn't been escalated yet considering many things including my academics and finances, but I can assure you that it's on my mind.

Thank you for your encouragements again sir. Please keep all warriors in your prayers.

Have a great weekend Sir
Re: LIVING With SCD(Sickle Cell Disease). by Fhunkhy1(f): 2:12pm On Sep 23
Remember I told y'all that I was preparing for another professional exam (midwifery), well tomorrow il be writing the last paper.
The past 2 papers haven't been really smooth but I trust God and please Pray along with me.
Down with persistent headaches, insomnia and I also haven't been eating well.
I'll try to get all these regulated after my last paper.
I'm trying to be safe.
I'm trying to be fine.
I'm trying to avoid crisis in this crucial time too.

Pray for me.

Peace ✌️✌️✌️
Re: LIVING With SCD(Sickle Cell Disease). by Olujanny: 9:45pm On Sep 23
Fhunkhy1:
Remember I told y'all that I was preparing for another professional exam (midwifery), well tomorrow il be writing the last paper.
The past 2 papers haven't been really smooth but I trust God and please Pray along with me.
Down with persistent headaches, insomnia and I also haven't been eating well.
I'll try to get all these regulated after my last paper.
I'm trying to be safe.
I'm trying to be fine.
I'm trying to avoid crisis in this crucial time too.

Pray for me.

Peace ✌️✌️✌️
I pray you strength warrior. God with you dear.

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