I went for the CT SCAN and to my surprise it is not what I had in mind, both lungs are actually infected. They found two glands in my left lung and one gland in my right lung, which means the surgery will be very very difficult.

So now I am starting to be kinda negative, to be honest they told me that they have never done something like this – especially with the extreme drug resistant TB, especially on both lungs. Chances are it might work but as I said before it is very difficult, and to add to that it might not work and the infection might spread further to more of my lungs.

So there is no rush on all of this. It sure is a scary situation isn’t it??????

I have had negative thoughts lately: like why bother fighting for something that we all see that it is impossible… With the support of MSF staff they tried to encourage me not to give up…

Someone said “MIRACLES DO HAPPEN”. At that point in time I was back to my old self but still there is that voice that keeps on saying “WHY BOTHER”. Apparently I am waiting for a huge yet hopeful MIRACLE TO HAPPEN. I am so patiently waiting for that day.

To be honest, the surgery part doesn’t sit right with me. Something is not feeling right …so far I will take my chances but as I said before, there is definitely no rush.

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Comments

45 Responses to Both lungs

  1. Dear Phumeza, Once in a cycle of Negative thinking it can be like a spinning, crazy wash machine where you don’t even remember what it’s like to be dry. Rather don’t even climb in! Remember, that you are the Future. I send you so many hugs!

  2. I will prayer for you today. Remember with God all things are possible. And miracles do happen everyday. A hug from the United States. Never surrender-have faith. Sue Ann

  3. Phumeza baby, GOD loves us all. you were never excuded. i will be lying if i can say i know how you are feeling since i never walked the route you are walking. But looking in your story i can say it is indeed very very difficult aspecially with your age. you almost completed your struggle and left with days of happiness. while giving GOD your trust,remember Doctors are doing everything in their power to save you and they are almost there. never put a blame on you,that TB will soon be away and you will be getting back to your studies.

  4. Hi Phuneza.
    Isaiah 53:

    He had no beauty or majesty to attract us to him,
    nothing in his appearance that we should desire him.
    3 He was despised and rejected by mankind,
    a man of suffering, and familiar with pain.
    Like one from whom people hide their faces
    he was despised, and we held him in low esteem.

    4 Surely he took up our pain
    and bore our suffering,
    yet we considered him punished by God,
    stricken by him, and afflicted.
    5 But he was pierced for our transgressions,
    he was crushed for our iniquities;
    the punishment that brought us peace was on him,
    and by his wounds we are healed.

    God has the power to heal my sister. My prayer is with you.
    You will not die, you will live. That’s my declaration for you.

  5. Hi Phumeza,

    Keep up the faith and hang in there. I wish you God’s blessing and quick recovery.

  6. Stay strong and never give up! All the best and God Bless. Greetings from Malaysia :)

  7. Phumeza nyamezela mntana’sekhaya. This battle is not yours alone. Have hope and faith and I send you love.

  8. Dear Phumeza,

    You are strong and can pull through. Ask a lot of questions. The more you read and ask your doctors, the better you will understand what is going on and will be mentally prepared. Make your own Mantras on how you get through this most challenging time for you. We will keep you in our thoughts and prayers and will closely follow your recovery back to good health!

    Here some MDR/XDR info for you, which you likely will have all reviewed already, being the active and inspiring blogger that you are!

    http://www.who.int/tb/features_archive/m_xdrtb_facts/en/index.html
    http://www.nejm.org/doi/pdf/10.1056/NEJMoa0800106
    http://www.ncbi.nlm.nih.gov/pubmed/20417785
    http://academicpublishingplatforms.com/downloads/pdfs/mhsj/volume5/201103230050_17_V5_MHSJ_KAZAKHSTAN_Yerimbetov_et_al_Pulmonary_Resistant_Tuberculosis.pdf
    http://www.umdnj.edu/globaltb/downloads/courses/2011/netbc2011/MAHAN%20MDR-XDR-NETBCC-Mahan.pdf

    You have already received the great poem Invictus by David Negrin. But the same poet has also written about his feelings about the hospital discharge. Something to look forward to. I attach here both for you and a little bit of history, you may already be very familiar with:

    While incarcerated on Robben Island prison, Nelson Mandela recited the poem “Invictus” to other prisoners and was empowered by its message of self-mastery. The same poem is also given in the Invictus movie by Nelson Mandela to the Springbok rugby team captain to prepare for the post-apartheid Rugby World Cup of 1995.

    William Ernest Henley at Muswell Hill

    INVICTUS

    Out of the night that covers me,
    Black as the Pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds, and shall find, me unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll.
    I am the master of my fate:
    I am the captain of my soul.

    Here William Ernest Henley’s poem about hospital discharge:

    At the Old Infirmary, Edinburgh

    DISCHARGED

    Carry me out
    Into the wind and the sunshine,
    Into the beautiful world.

    O, the wonder, the spell of the streets!
    The stature and strength of the horses,
    The rustle and echo of footfalls,
    The flat roar and rattle of wheels!
    A swift tram floats huge on us . . .
    It’s a dream?
    The smell of the mud in my nostrils
    Blows brave–like a breath of the sea!

    As of old,
    Ambulant, undulant drapery,
    Vaguery and strangely provocative,
    Fluttersd and beckons. O, yonder -
    Is it?–the gleam of a stocking!
    Sudden, a spire
    Wedged in the mist! O, the houses,
    The long lines of lofty, grey houses,
    Cross-hatched with shadow and light!
    These are the streets . . .
    Each is an avenue leading
    Whither I will!

    Free . . . !
    Dizzy, hysterical, faint,
    I sit, and the carriage rolls on with me
    Into the wonderful world!

    Best wishes for all the confidence in the World,
    Stay strong!

    Dr. Hans

  9. Hi there,
    I am so sorry that you are going through this. I have added you to my prayer list. Trust God and give Him your health. He is the master physician and there is no problem or disease to big for Him. I and a friend will be praying for God to give you the peace that passes all understanding. We have great hope for your recovery…

  10. Dear Phumeza,

    I don’t really know the right words to say, because I simply cannot imagine the pain you have to go through. But I know you must have been very brave to get to where you are today, to have defended your stance in the face of the disease you are fighting. So please, please, don’t give up. Even though it is very difficult, but for better or worse, let us ignore all the negatives and have faith that things will turn out well. As you said, “chances are it might work”, so let us hold onto this piece of hope :) We will pray for you.

    Love, Sil and Leo

  11. Never give up without a fight. If it all ends up the same way, why not fight for a change? You can do it girl. Being optimistic is the first step to healing! All the best to you.

  12. Dear sister
    When I think about myself or look at myself in a mirror..the first thought that comes to my mind is “AM I STILL ALIVE?”. That was my past before someone saved me from death. That someone can save you, give you the strength and the peace you need.His name is Jesus. Just let Him in your life and ask Him to deliver you. He will because Jesus Loves You as He loves me. May you be healed in Jesus Name.

  13. You have won the first battle with your attitude. Yours is a really moving story and one can only wish you recovery that’s soon. Looking forward to hearing you say: I eventually made it!

  14. phumeza
    I am not religious so I cannot speak to miracles. Even here, in Canada, where we are supposed to have such great health care people suffer – not to the degree you do of course. I personally have a terrible disease and recently the ongoing pain had me feeling suicidal. I am a single mother of a fabulous young woman and i cannot justleave her. I also work with teens with Autism who need me.
    As I said i don’t believe in miracles but yesterday through a series of “lucky events’ i got in to see a special doctor – who after 13 years TOOK MY PAIN AWAY. So all things are possible. Every day I write, email and petition our government to SEND MEDICAL SUPPLIES to countries around the world -nobody should have to live your experience. HAVE HOPE amazing things do happen. Your courage alone gives you a MUCH HIGHER chance of surviving! Attitude is very important. If there was something directly I could do – other than give $ to MSF which I do – I would do it for you right now.
    HAVE HOPE!
    Now that i have read your story you will be in my thoughts daily………
    Safe nights and days to you
    with love
    from a stranger who CARES IN CANADA
    <3
    karen

  15. What a very brave and strong young woman you are! I know you must feel uncertain and frightened and tired, but still you are willing to share your story and remind us all over the world that we all share in the struggles and celebrations of life. Please do remind yourself that people do care so when you are having a hard day, you can think of people all over the world who wish you well. Sending you healing thoughts and very best wishes for a full recovery and praying that you find moments each and every day that bring you some peace, love and joy.

  16. Phumeza, I’m thinking of you and sending positive energy your way.

  17. Dear Phumeza, thank you to share your story. You know? this is the begining to get cured, to share your feelings. Afterwars it is important that you listen to those who love you and care about you. But it is specially important that you hear those who, as you, has passed through same circunstances and have suceed, they will help you to be stronger and to belive that you will be healthy again very soon. If MSF is providing you with the possibility to participate in support groups or peer support, I definetilly recomend you to try them, they will really encourage you to fight. Best wishes and love. An MSF Psychologist

  18. Thank you for sharing your story. I think you are a very brave young woman. Take care of yourself, and don’t give up hope! I am sending good thoughts your way from New York.

  19. Have faith and know that God has big plans for you. This is just a minor setback on the road ahead.

  20. Dear Phumeza, keep your head up sister, we are praying for you! Please don’t give up!!! You are such a brave soul, and you deserve a long and happy life, just hang in there. Big hugs and love and positive energy for you :)

  21. Hang in there, Phumeza! Don’t give up!

  22. Dear Phumeza,

    Please don’t give up hope, TB is a very curable disease. i am a TB specialist nurse in the US and have been involved with treating drug resistant TB. The key is to take your medications daily and look after yourself, be positive and believe in ourself. Your trwatment will probably include daily injections but if you have a good nurse she will be gentle. Also ur sputum results will help determine which second line drugs can be used. surgery is the only option in very rare circumstances. Good luck and please dont give up hope.

  23. Never give up hope-NEVER. The mind is both mysterious and powerful. In this most difficult time, please try to find some light. Use your mind to concentrate on all you have known that is good. There is something in all these words above. Many people fight cancer when their diagnosis is hopeless. Do not underestimate yourself. Get rid of those negative thoughts. Do 3 things each day that make you happy and try to feel good as good as you can. You are not alone.

  24. You are in my heart and prayers beautiful seet girl.

  25. My thoughts and prayers are with you beautiful girl. You are in my heart.

  26. Lovely Phumeza,

    You are greater than this sickness. Your heart beats for a reason, and your life is worth fighting for.

    Sending you love from California,
    Kira

  27. Dear Phumeza,
    please, fight all you can for positive thoughts. Negativity will hinder your body in defending you from the infection. I myself was told years ago I might die, and here I am, alive and kicking, against all odds.
    Please, give yourself some minutes every day to feel weak and scared, you have the right to do so. But then quickly GET UP and repeat I AM A TOUGH GIRL, I WILL MAKE IT, as many times as needed. Do whatever you can to search for things to do you like, also little joys do help big time.
    I am sending you much strength and love, YOU CAN DO IT, MIRACLES DO HAPPEN.

  28. Hi Phumeza

    I’m so sorry to hear your latest news. It must have come as a blow. I also had very complex pulmonary TB. Initially, the TB was in my left lung, but on the morning I was due to have surgery to remove my entire left lung, the doctors discovered that I had TB in my right lung too. The operation had to be postponed. I was devastated. I thought I was never going to be rid of TB. This development could have sent me spiraling in to depression, but it had the opposite effect – it made me even more determined than ever to keep fighting against TB.

    Please don’t lose heart. Do do not give up on yourself. This is a battle that you can win – show those TB germs who is the boss!

    I’m thinking of you and sending you my very best wishes

    Amy, UK

  29. A poem for you, “Invictus” by William Ernest Henley. He was stricken with tuberculosis and wrote this confined for years to his sick bed.

    INVICTUS

    Out of the night that covers me,
    Black as the pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds and shall find me unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate:
    I am the captain of my soul.

  30. Phumeza, I know that this is a tough time.But there are people in different corners of the globe praying that you recover soon. Whenever you hear the voice inside saying “why bother?” please tell it that you’re doing it because you matter.Your presence matters. Because miracles DO happen.And you- you will triumph.
    love, from Pakistan.

  31. j,suis pas assez malin pour etre medecin,alors en toute conscience,j,y mets tout soutien,,,(courage)

  32. They said “Chances are it might work but it is difficult”. It doesn’t have to have to be a miracle, darling, you just need a chance, with a skilled doctor. I will be hoping for you!

  33. Phumeza, don’t give up! A hopeful, positive attitude is essential to healing. Even when discouragement assails you, focus on all the positives in your life. The more you focus on positives, the more of them you will see. You have lives to touch with your life. Don’t give up.

  34. Hi Phumeza,
    I’m sorry to hear of your situation and I certainly hope things work out for you.
    I may have missed your first few blogs but I do not understand why you need an operation, Unless the glands interfere with your breathing….??
    Whether it is drug sensitive, MDR or XDR, TB usually affects both lungs. The difference may be the extent to which each lung may be affected. In any of these situations, surgery is rarely ever required….even though situations may differ.
    I know it probably feels like its the end of the world but all these forms of TB can be curable. You just need to take your treatment religiously! With results from your sputum, they could be able to find a combination of drugs that may help you, which may include a lot of injections. The glands may even go away with treatment! It can take up to 2 yrs (or even longer) but I have seen quite a number of people triumph.
    Good luck Sisi..you will pull through. Just be brave, believe and persevere….

  35. Phumeza, I worked for MSF in Uganda and I met our MDRTB patients. I know it is an extremely difficult situation. You are in my thoughts and I am sure everything will turn out ok for you!

  36. Dear Phumeza, it is a scary situation, but I am sending you all the positive thoughts that I can to help you overcome it. With love and a BIG HUG, ~m. x

  37. I am thinking of you Phumeza. To have life is the greatest miracle of all, and fighting for it may be our greatest obligation. Trust in MSF, trust in God, but most importantly trust in yourself and never give up. :)

  38. It matters because you matter. You are important. Your life has purpose. You are a voice that should be heard. What you sat is powerful and life changing. That should not stop. You matter.

  39. Sending you all the best!

  40. I wish you the best, and pray for you. Do not be afraid of the surgery, if the doctors say it is the best way to win this fight you have to trust them, I think. Many warm thoughts from Norway, a cold country in the north.

  41. Hello Phumeza…
    Don’t give up! I really hope you find the strenght to fight this, I wish I could give you some of mine through this message. Even if I don’t know you, you are in my heart. Be brave! A big huge

  42. You are young, you are beautiful, but most of all, you are a FIGHTER! Never, ever, ever give up! Get the MSF surgery asap, and hope for the best.

    You are a fighter and you WILL overcome this! Failure is not an option!!!

    My warmest regards from California.

  43. I don’t know if you’re going to read this… years ago, I was told it was hopeless that I ever try to have children. I was told it would take a miracle, a one in a thousand or more chance that I would conceive and have a regular pregnancy. But I listened to my intuition and instinct about what to do with my body. It did take time, but now I have naturally had two beautiful girls, and defied all the odds… and my miracle came true. You have to believe it, and never stop. Listen to your gut, it will tell you what is right and wrong for you. :)

  44. Hi! Have faith in God, everything will be alright.
    My family n me are praying for u. May God heal u completely. Have faith in the treatment and b positive. Nothing is impossible…..always b positive.
    With God miracles are possible.
    All the best!

  45. Phumeza, I have my own health problems and I know how hard it can be to keep being hopeful when the news is discouraging and it has been a long struggle already. You are in my thoughts and I am wishing that you find hope and strength and courage and that after the surgery you recover to a new level of health and strength very quickly. Don’t give up yet.

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