Just like the bumpy roads outside due to our wintery weather so are the bumps in the road with my health. The day after Christmas we took out my Hickman line with the thoughts that my clot would possibly disappear but, to find that the clot in my neck is bigger then before. Yesterday, I met with a new doctor, a hematology specialist, to come up with a plan of attack for this pesky clot in my jugular. We finally have my blood thin enough at a therapeutic level so now we will wait and see if it dissolves on its own.
We had a lovely New Years Eve celebrating at a friends house, Happy New Year by the way. The next day, the very first day of the year I received a phone call from my transplant coordinator. I knew if I was getting a call on the holiday it must not be good news, it wasn’t. I was told my blood test results were back and I was positive for CMV (Cytomegalovirus) and to start taking antiviral medication. CMV is a virus that can be dangerous for someone who has a suppressed immune system, aka this girl! It was a surprise to hear the news but not a big shock. We knew I was at risk, I had never been exposed to CMV before my transplant and my donor had. That means I will always be at risk of it popping up. CMV has cold or mono like symptoms and can make you feel awful. Fortunately the only symptom I had was weakness. I had been taking two and a half hour naps during the day and still sleeping at night. I have not napped in the last four days though 🙂
More blood work…I have been making three to four trips down to the clinic the last few weeks to get my foot poked for blood since I don’t have veins in my arms. I miss my Hickman for this reason and this reason only! Lately my blood work has been thrown for a loop. My white blood count is very low, one of my medication level keeps jumping from hi to low and back to hi, and we were having trouble getting my blood thin enough to dissolve the clot. It is such a game with all the medications but we are figuring it out as we go.
I had lung functions and an X-Ray on Monday. I think the CMV caught up with me because my lung function was slightly worse and I also have some fluid around my lungs. The fluid could very well have caused the drop in lung function. I will have another X-Ray next Monday to make sure it is not worse.
I know my road is bumpy right now, but I will take all these little bumps over a big one any day! I have such wonderful doctors working to figure it all out. Believe it or not, these are not rare occurrences after a transplant, especially within the first six months.
Today, I am happy to say I had great results, I am now CMV negative!! We will recheck in a couple of weeks and if I am still negative I will get to reduce my medication.
Nikki's New Lungs 
Just bumps dear, just bumps. Keep up with great attitude!
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Yes Wally, just bumps 🙂 Hope you are well.
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Nikki you are one tough cookie!! Loving prayers..Love you!
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Thank you for the prayers! Love you too!
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You can do it. Just put on some cute heels and climb over those little bumps.
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You know me all to well, nothing BUT heals on this girls feet 🙂
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I am praying that 2014 will be yours & Trevor’s best year ever!! Even though the road can be bumpy, I know that you will give it all you’ve got. You are one STRONG WOMAN and you’ve got the perfect partner for getting over the tough spots!
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Thank you so much Marilyn. Hope you are staying warm!
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Oh Nikki, I’ve said this before and I’ll say it again, you are one tough cookie! You explain your condition and situations like a doctor. So glad you gave us the blow by blow so we can understand just what you both are going through. You sound up beat and know that you have the best medical team on your side and the best friends on your side too.
Keep us updated, cuz we do care for you so much.
xo Heidi & Scott
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Thank you Heidi, it is nice to know you understand what I am explaining. You are correct, I have the best of friends supporting me. I am so grateful to have you and so many wonderful people in my life. I wouldn’t get through everything without all of you!
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we love you nikster…. keep that good attitude going….. we are so proud to know you!
love
r & m
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Thank you Richie! Get together soon?
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Nikki, Nikki.
Your news was hiding under a new category on my computer so I missed it. I am so sorry that this road has been bumpy, but there is no one in the world with your gratefulness and stamina and those are the best medicines of all. That and how much you are loved, near and far.
Hang in there, dear one. We would drop anything to do anything, so please let us know if there is anything we can do.
xoxoxox
R&M
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Thank you Mickey!! Maybe we can see each other soon.
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Thanks for the update, Nik!
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Sure thing!
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