Nikki's New Lungs

This coming Friday, February 14th, Valentines Day, there is a benefit being held in Stillwater at The Loft at Studio J supporting LifeSource in honor of Adam McCloud. Adam was a big-hearted young man that left this world too soon but was able to give the gift of life to many through organ and tissue donation. The band The Dweebs will be playing. There is a silent auction, dessert extravaganza, and I will also be saying a few words during the band’s break. If you would like to support Adam and his family with all proceeds going to LifeSource, clink on the link to the Adam McCloud Foundation to purchase tickets. Here is a link to the local news that aired last week to promote the event WCCO Adam McCloud

This last week I had multiple tests. My lung functions slightly improved again! They keep moving slowly but surely. My blood level for one of my medications keeps jumping up and down. Obviously my body has decided to be very sensitive. My white blood cell count barely moved but it did come up a bit. Maybe, fingers crossed, on Monday the level will be at a point which will allow me to get out of the house. Although now that the winter Olympics are on, I am glued to the TV watching and cheering for team USA.

I never thought these words would come out of my mouth but, I’m excited to get blood work. While I have been house bound all week I do have to go to the clinic for blood work everyday. I just wish I was leaving for a fun reason. My CMV is still negative which is a good thing, but my anti rejection medication levels are off the charts high, along with my white blood cell count still low. Who knows what the reason is, all of a sudden my level turned toxic. I haven’t made any changes to diet or schedule so it is perplexing. We will figure it out, but until we do my poor little feet get poked everyday. Now I understand why our dog Rosie gets so excited when I ask her “you want to go for a car ride?”. I feel like jumping up and down like she does when I get to leave of the house!

~Nikki

I am on house lock down. I was called this weekend with a message from my doctor to stay at home. My white blood cell count has become dangerously low, I am extremely susceptible to anyone that has been sick lately. My immune system is actually lower then when I was first transplanted. The good news is today, I received results that I am still CMV negative. I now get to cut the medication in half, the medication that is most likely the culprit to my low blood count. Unfortunately, it will take about a week to see a change. That means I’m on house arrest until then. At least it’s cold outside, I will cozy up to the fire 🙂

I was honored to be asked to speak at the Donate Life Symposium from LifeSource which was held in December.  Since I had received my transplant and was taking many immunosuppressants, my doctors advised me not to attend the event. We did however film a message at our house. And, Travis was sweet enough to attend, speak on my behalf, and give his own speech. I know, he is so amazing :). Click on the link to watch the video Donate Life Symposium. It starts with the “I am Hope” video that many of you have seen, but Travis and I follow that portion at the four minute mark if you want to skip ahead.

This weekend I had some more milestones. I have never walked more then three miles before on the treadmill. After this last Friday I can no longer say that! It felt so good to go so far. Though I was going at a 28.5 minute mile pace.

Also for the first time, Travis and I were able to play in the fresh snow and use our Christmas gifts to each other, snowshoes….It was so much fun to be able to do some sort of exercise outside especially in January!!

Our snowshoeing tracks

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.

Hope everyone had a very Merry Christmas. We have had a fabulous holiday. We hosted Christmas Eve with our families starting with a fondue dinner followed by opening gifts and spending quality time together laughing at stories. Today, we spent the afternoon with family and friends feeling the love of Christmas and joy. I feel so blessed to celebrate the holidays with my new lungs. I think of my donor everyday. I hope my donor’s family was able to find some peace during this season. Bless my donor.

Last week I had a good doctors appointment. My lung functions had slightly improved. It’s so exciting when I see those numbers getting better. Although my doctors did scold me. I am NOT, under any circumstances, supposed to be shoveling! When I told them Travis has lucked out because he hasn’t had to shovel at all this year because I have been beating him to it, you should have seen their eyes almost pop out of their head! My bones and nerves are still healing in my chest and I am still on a good dosage of prednisone which also interferes with the soft tissue healing. They had to remind me that even though I am feeling strong I still need to take it easy. So, I will have to wait until next year’s snow fall before I am allowed to grab the shovel again. I can’t wait!!

And…unfortunately I have formed a new blood clot in my jugular (neck). It was caused from the Hickman I have placed in my chest. The Hickman is the long term I.V. line going into one of my central veins. I have had the line since April, but since I have been on the blood thinner coumadin since my surgery, it is very surprising that the clot has formed. We are headed to the hospital tomorrow morning to have it removed. We were supposed to be stopping the blood thinners, but now I will need to take them for another three months. The Hickman was convenient because I am still having frequent blood tests and I was able to draw blood off my line. We will still have to check blood twice a week but because I have limited veins and won’t be able to use the I.V. line, we will have to poke my feet to get blood. I have mixed emotions about taking it out because it is so nice for blood draws. BUT, the great news about taking out the Hickman is I don’t have the daily maintenance of flushing the lines, the weekly dressing changes, and I no longer will have to cover and tape my chest when I shower!!

Girls Holiday Party

I had a wonderful birthday, a true gift of life. On Sunday, Travis made me homemade delicious pancakes. Then at night I had my annual girls holiday get together.

Tonight Lauren, Andrew, my girlfriend Annie, and I made the news for all the Toys we were able to donate in honor of my donor. Thanks to your help we were able to give 283 toys to Toys for Tots. I am blessed to be here to celebrate another birthday. Thank you all for the donations and birthday wishes! Here is the link to the news cast Kare11 Toys for Tots

Lauren and I shopping for some toys

Filled back of truck

Truck filled, we had Andrew’s car stuffed as well

Lauren, myself, & Andrew waiting for the news

Annie, myself, (Kare11 meteorologist Belinda) Andrew, & Lauren

We are going to try and be on the 6pm news cast on Kare11 delivering a whopping 275 toys! Thank you everyone who donated, there are happy kids out there thanking you also!