As many of you are aware Katy was admitted to Children’s Hospital last night ( Monday 6-10) after her blood work from Friday showed some crazy numbers… of course our #1 fear is and always will be is the fear of rejection and when I got the call from Mike that we needed to head in immediately… I immediately feared that would prove to be true. As it turns out Kathryn has CMV.
Cytomegalovirus is a very common virus found in approximately 85% of the population… the fellow last night quoted 95% but I couldn’t find numbers to back that up. Like many other viruses it is a non issue for the healthy non immunosuppressed crowd however it can be fatal for a child like Kate if left untreated. The biggest issue right now is that as this virus attacks Katy’s body it can do irreparable damage to her heart AKA rejection or other vital organs
Prior to transplant Kate tested negative to CMV however her donor was positive. As a result Katy has been treated with a drug (Valcyte) to prevent her from contracting CMV ( clearly it did not work) so it is now our fear, although not confirmed yet that she may be resistant to the typical drugs used to treat CMV.
Currently we are settled in on 8 East and we don’t see a discharge date in site. There is talk of going home with a picc line since the current med she is being given to fight the CMV ( Ganciclvir) is given twice per day via IV and it is unknown how long she would require that drug.
I am a mess… I finally felt for one split second life was dare I say normal. Soccer, swimming, play dates. Just start to get comfortable with our new life and smack!
Katy is so brave and so strong. Never complains… but if she has to go home with a PICC line I just KNOW she will be devastated…since it will ruin her summer that she is so excited for… we have so much planned.
I am done… I feel like this is our forever and we should never try to move forward since we will always be knocked back down anytime we try.
Please pray that the meds work and get the CMV under control without damaging Katy’s precious heart.
8 comments:
Prayers for you an your family. I know it's so hard to stay positive but I know Katy like all heart patients are strong willed and strong in health. She will make it through this and summer will continue on as plane. Just a small speed bump in the road. Stay strong Murphy family.
I hope the following helps you to breath easier (though I do understand that it probably won't, because I know first hand the worries and real concerns of post-transplant families, etc). With that stated: My husband's donor heart was also infected with CMV and he went through the same course of treatments for CMV as you describe here). It was an inconvenience at most. He did well. Also worth noting, CMV didn't kill him. Complications related to his life long battle with type 1 diabetes caused a series of strokes, and he was lost to that last stroke. TRY to keep your positive outlook!! I know it's difficult. I know how tiring it can be. You and Katy and Mike & Patrick will find strength in each other, as you always manage to do!! I'm rooting for you all. Extra prayers going out today that you find your next wind needed to push through this latest battle. It's just a new battle. Now go put on your Super Mom cape and kick ass!!! Much love to you all. --Carolyn Fine
Praying for Katy, your entire family, and the doctors/medical staff making decisions for her now.
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With thanks
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Do not lose your faith...that has carried you so far and will carry you further...she will see in you strength...it is a ripple effect...she will feel it...biggest hugs for you call...my prayers have never faltered...I will pray to the arch angels for their strength to become hers...<3<3
Do not lose your faith...that has carried you so far and will carry you further...she will see in you strength...it is a ripple effect...she will feel it...biggest hugs for you call...my prayers have never faltered...I will pray to the arch angels for their strength to become hers...<3<3
I had CMV that ran rapid, because my dr's didn't treat me correctly and it did do some damage my heart. Granted, I didn't have a heart transplant, but I do have some serious immune system issues, like lack there of. My husband, who I was engaged to at the time, took me to see his liver transplant dr. I was immediatly put on an iv of gancilivir, or however you spell it. It took me several months to recover from it, we still have no idea WHY I had such a bad reaction to it. But please know that they are treating her correctly, and that she WILL get better!!!
Hoping all is well. My prayers are with our Katy girl. Whenever it gets quiet on here, I get extra nervous. Lots of love.
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