24.3.12

Good bye RSV, Hello Rejection: Steady My Heart



This month and a half has been a bit tough. The after effects of the RSV have included pneumonia, lung infection and concerns of rejection and my PTLD returning. Physically and emotionally, this month has been very hard and exhausting.



My doctors have been most recently concerned with some spots that have managed to pop back up in my lungs. I had xrays, cat scans, pet scans, bronchoscopies and blood work this past month, all of which came back inconclusive as to if the spots were infection or cancerous. My doctors then ordered a second bronchoscopy to biopsy my lung lymph nodes and suspicious spots to get some more clear cut answers. I was very relived to find out, my PTLD was not the culprit, and that I did not need to be concerned about malignancies in my lungs. I was informed, that for the first time in my donated lungs almost 4 year life span, I have grade 2 acute and chronic rejection.



My doctors have been concerned all along with this RSV infection, since it put me at a much higher risk for developing rejection. I am thankful I am at a transplant center that is aggressive with it's care and was able to diagnose it early on.

Because of the rejection and infection. I am being treated with a strong IV antibiotic for the infection and another very powerful IV steroid and added immunosuppressive drugs for the rejection. It's going to be an interesting balance of reversing the rejection and controlling the infection. Added immunosuppressive drugs will increase the risk of cancer, which for me and my history, makes the balancing act a little more complicated. But I know at I am in great hands at Duke. And I can be assured that I am in the palm of my God's hands, which give me the peace I need to get through this obstacle.



These next several days and weeks will be tough on my body physically and emotionally. But I need to remember, despite these hardships, there is a reason, a purpose to it all. I also need to constantly remember about how much support we have received during all of this. My family, friends, and complete strangers have reached out to our family. Praying for us, sending us encouraging notes, making meals, watching our children and just loving on us. For that, I am so grateful for and undeserving of. Thank you.

Even it hurts
Even when it's hard
Even when it all just falls apart
I will run to You
Cause I know that You are
Lover of my soul
Healer of my scars.








50 comments:

  1. Thankful you have an answer. Love and prayers for a speedy treatment and recovery.

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  2. So glad you know what it is now and don't have to keep wondering. Know that I'll be praying that cancer stays away and that these new meds get rid of that rejection! Our God is so faithful!

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  3. Praying for you, Tricia!!! I've followed yours & Nathan's lives (and Gwyneth's too!) for several years now. Praying that the meds work!!

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  4. Oh, Tricia - we keep praying and knowing that you are in the palm of Your Father's Hand...praying that you feel His love overwhelming you, His peace fall on you like a warm blanket, His provision and His protection over your body, your immune system, your strength and your emotional and psycological and physical health!

    Blessings in Christ,

    Amy Stephens
    www.caringbridge.org/visit/rosegirl

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  5. Tricia, thanks for continuing to be so open about what you are going through. Praying that our all-powerful God brings you His peace, wisdom, and healing as you face this latest challenge. Will be praying for you, Nate, Gwyneth, and all of your extended family, as I have since I was first introduced to Nate's blog the day after Gwyneth was born.

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  6. Praying so so so very hard for you! For your husband and for wisdom for your doctors! You are an inspiration!!

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  7. Love your positive attitude.I will be praying for you.

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  8. Tricia...thank u for sharing these next steps in your journey. Praying for u to have all he strength and spirit u will need as each day and each challenge come. Sending love hugs smiles and virtual energy!!! xoxo

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  9. From your neighbors in Manteo (also alumni of Duke's wonderful care) sending prayers and peace your way.

    Love, the Smiths
    from Manteo First Assembly.

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  10. Tricia....Tranks for the update....will continue to pray for you!!!
    Hugs!!
    Susan
    Redwood City, CA

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  11. I promise to pray for you.
    Lots of love from Kingston, Tennessee
    ~~ Kim Waggoner

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  12. Praying for you as this weeks go bye with these treatments.. Hang in there!!!

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  13. Praying for you especially these next few weeks.

    Also just wanted to say how much I appreciate your spirit. I am 36, a mother, and have ovarian cancer. This song and lyrics you posted was exactly the encouragement I needed tonight.

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  14. Praying for you and your family, especially in the next few weeks. You are in the hands of the Great Physician, and i pray that all this "tricky" management of your meds to go smoothly!

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  15. Sweet Tricia, I am holding you in my heart and prayers! I know you and your family are in the Lords hands and I absolutely believe in miracles! I pray for the infection to clear, for the rejection to disappear and that the meds will work harmoniously in your body for your perfect and quick recovery!!

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  16. hey babe, been praying for you so much...I'm thankful you have an answer, even though it's a scary one...we know God is with you but I pray you'll feel His hand on you and His comfort - i love you so much and my heart breaks for you and all you're going through...PRAYING for you!

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  17. we put you on our Sunday School prayer list this morning. We are praying for you.

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  18. Tricia, I'm praying that the treatments will help your rejection, and that youll be able to get back to your "normal" self very soon. Sorry you've been having such troubles!

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  19. Tricia, I have followed your journey since Gweneth was born and continue to pray for both of you, I fall in the complete strangers category. I am committed to continue to pray for you specifically as you battle this delicate situation, your medical team for wisdom as you battle and for Nate and the kiddos. How comforting to know that none of this has taken God by surprise.

    You are loved,

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  20. I am so sorry for this news, but I am thankful that it is not cancer and that you have such great doctors. You and your family are in my thoughts every day.

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  21. I came over from the Facebook group. I'm so sorry to hear about this! What a rough patch you seem to have hit lately. I pray that healing comes quickly, and if not, that you can receive the strength you need.

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  22. I think having an answer is always better than not knowing. I've been following you (on Nate's blog) since the birth of your babe. I feel like I'm at a loss for words. I know you are in good hands at Duke, and I know that you know the Master Physician...and I know that miracles still happen...just look at the past four years and at Gwyneth. I am praying that He will touch you with another miracle with this lung situation.

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  23. So sorry to hear this news, but thankful that you have answers and some great doctors, and most of all an amazing God who is in the business of miracles!! You and sweet Gwyneth are living proof! We are praying for you here in Grenoble. love, Kristy

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  24. I've been checking your blog because you've been heavy on my heart and I knew when it was worth mentioning you'd do it on here. I am staying away from socail networks to try be more efficient. Now I know what specifically to pray for.

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  25. We're praying for you here, Tricia :D
    Tons of prayers for your family, too :D

    <3
    Cassandra and Theo (3)

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  26. Trish - been following your story since Gwyneth's birth. I'm so sad to read this but I will tell you this post is so uplifting and moving. You are on my prayer list!

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  27. My heart ached as I read this! I know this can not be an easy thing to "take". I have been following your journey since right before your transplant and have grown to love you and Nate's spirit. Please know that we are praying for you and your precious family! We serve an awesome God who loves us more than we can imagine. Rest in His hands!

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  28. I am so sorry. I've been following your husband's blog since your transplant. Praying for you. There is always hope.

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  29. Trust in the Lord with all your heart ... Proverbs 3:5-6
    I know you are, Tricia ... praying from Ohio that you will rest in the peace, love and protection of God. Praying for Nate, too.

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  30. Praying that the treatments will reverse the rejection and that God will protect you from any reccurrence of PTLD. Whatever happens you have an army of prayer warriors surrounding your family with love.

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  31. Praying for your sweet family and that you would have a peaceful heart.

    Big hugs!

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  32. I'm just so sad for you. I truly am. I can't imagine what you feel...how you have felt your whole life...wondering...waiting...worrying when you are happy even. I hate illness and sickness...I hate how the body can attack the body and be a traitor. I love you and I am praying for you.

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  33. Praying for you and your family

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  34. Although I haven't posted in the past, I have thought about you often, and frequently check for updates. I've been following your story since before Gwyneth was born. I want you to know that I said a prayer for you. It wasn't fancy, it wasn't long, but God knew what I was saying, and that's the only One who matters. Please know that I will continue to pray for you and trust the Holy Spirit to guide me.

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  35. God is still in the miracle business and I am asking him for a miracle in your life.

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  36. praying so much for you, girl! I have followed you guys from before transplant and have watched God work so many miracles in your life. Praying for Him to lift you up and heal your body!!!!

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  37. Prayers for you and your lovely family. Hoping this is just a bump in the road to wellness. Chin up!

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  38. Tricia, i am praying for you. I am humbled by your attitude. Keep it up. There is a reason. One day ee look back and see. I am thankful that God found a wsy to connect me to you and your family through our son in korea!

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  39. Tricia, my whole family is keeping you and your family in their prayers! We serve an awesome God who has a plan in mind for us all. I pray that he keeps you safe and in good spirits! Your attitude and faith are amazing. You are such an inspiration to us all. Hugs from Chester, VA!

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  40. Praying for your complete healing Tricia!!! God is in Control.

    ~Missy Roark in Indianapolis

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  41. My heart just fell to the floor when I read this on your husband's blog. Tricia, don't loose heart. God has kept you around these four years for reasons only HE knows. If he choses to call you home this way your family WILL be taken care of. God will see too it. Many prayers that another miracle is worked. May God grant you and your loved ones the strength to face the days that follow.

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  42. Praying for you! God can heal perfectly! We can ask with confidence for you!

    Psalm 27.

    Lord, hide Tricia under your ever-strong, ever-powerful wings.

    One thing we ask from you, LORD,that Tricia may dwell in your house and feel your peace all the days of her life. We ask that she can see the beauty of You and your plan. We look to You Lord.

    For in this day of trouble, He will keep you safe in His dwelling and in His presence; He will hide you in the shelter of his sacred tent and set me high upon a rock.

    Then Tricia's head will be exalted above the enemies of health and friends of sickness who surround me; at His sacred tent I will SACRIFICE (we will be thankful even though it feels like a sacrifice!) with shouts of joy; WE will sing and make music to the LORD.

    Wait for the Lord, be strong and take heart and wait for the Lord.

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  43. Irrespective of receiving daily oral or future injectable depot therapies, these require health care visits for medication and monitoring of safety and response. If patients are treated early enough, before a lot of immune system damage has occurred, life expectancy is close to normal, as long as they remain on successful treatment. However, when patients stop therapy, virus rebounds to high levels in most patients, sometimes associated with severe illness because i have gone through this and even an increased risk of death. The aim of “cure”is ongoing but i still do believe my government made millions of ARV drugs instead of finding a cure. for ongoing therapy and monitoring. ARV alone cannot cure HIV as among the cells that are infected are very long-living CD4 memory cells and possibly other cells that act as long-term reservoirs. HIV can hide in these cells without being detected by the body’s immune system. Therefore even when ART completely blocks subsequent rounds of infection of cells, reservoirs that have been infected before therapy initiation persist and from these reservoirs HIV rebounds if therapy is stopped. “Cure” could either mean an eradication cure, which means to completely rid the body of reservoir virus or a functional HIV cure, where HIV may remain in reservoir cells but rebound to high levels is prevented after therapy interruption.Dr Itua Herbal Medicine makes me believes there is a hope for people suffering from,Parkinson's disease,Schizophrenia,Lung Cancer,Breast Cancer,Colo-Rectal Cancer,Blood Cancer,Prostate Cancer,Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
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