Nikki's New Lungs

My beautiful mother & handsome father

Today my parents are celebrating their 50th wedding anniversary! I didn’t have the energy to organize a party. I told my mom maybe next year at this time, I will have had my surgery and we can have a 50+1 party. I am happy to say we will be celebrating together tonight by going out for a nice dinner. The blog may ruin the surprise, but we are giving my mom a bouquet of her favorite flowers and my dad a boutonniere to mark the special night. Happy Anniversary Mom & Papa!

Two years ago today our dear friends, Ben and Annie, threw a party for me. They called it a “Taking a Breather” party for Nikki. You see, once someone goes active on the transplant list, their drinking days are over forever. I was honored to have about 150 friends show up for my big bash. The most shocking moment of the night was when my cousin from Winnipeg showed up. I couldn’t believe he drove all that way to surprise me!

My cousin David and myself

After dancing on the bar at The Loon, we kept the party going at our friend Jay’s house. The last picture we took of the night, I was on the top of a ten person pyramid . It was such an amazing evening.  I am so lucky to have such supportive friends and family.

Yee-Haw!

oxygen tank delivery

Every two weeks I have oxygen tanks delivered. I tell my oxygen company how many I need, they pick up the empties and leave me full tanks. Here is the line-up!

oxygen tank conserving device

I then attach a conserving device to the tank. This device helps prolong the use of the tank by giving me a puff of oxygen only when I inhale a breath of air. Each tank lasts me about 2 1/2 hours at a setting of 3 liters. Without the device, oxygen flows at a steady pace and the tank would empty in about 15 minutes. These tanks weigh five pounds with the device attached. I prefer these smaller tanks over the larger, heavier options.

oxygen concentrator

While I am at home I use an oxygen concentrator. It is a noisy, heat producing, electric device that converts room air into oxygen (don’t ask me how). I then have 50 feet of tubing attached that allows me to roam the house tank free. Unfortunately, there’s just enough tubing to reach the washing machine.

This last weekend was quiet and relaxing. I didn’t have much energy on Friday or Saturday. We did manage to ride our bikes to a friend’s house Sunday for about an hour. Don’t forget, my bike is motorized.

On Memorial Day we went to my parents to have dinner with my family. We weren’t planning on celebrating my mom’s birthday (which is today) but ended up doing so. It was funny, both my brother and I bought cakes for dessert but didn’t tell each other. Happy Birthday Mom, I love you!

Me and my Mom

Zach getting his diploma

Today is a little tough for me. Our one and only nephew, Zachary, is graduating from high school in Arizona. Because I need to be at the hospital within a few hours if I get the transplant call, I can’t travel far while I’m on the list. It’s a struggle when I have to miss out on monumental family moments. Many of the family members traveled to Phoenix to be a part of the festivities but we had to stay back. We are proud of you, congratulations from Minnesota, Zach!

Last week I started using the Dexcom Seven Plus  It is a wireless CGM (continuous glucose monitor) that is helping me monitor and control my diabetes. It provides a new blood sugar reading every five minutes showing trends so I know where my blood sugars are heading and how fast. I still have to poke my finger to check my blood sugars but this is giving me additional insight to keep my glucose levels in a good range. I have already noticed a meaningful difference in my blood sugars. I can’t wait to report the results to my diabetes nurse at the end of the week.

I attach the sensor and transmitter onto my belly with an applicator.  It stays attached with some tape and can be worn in the shower just like my insulin pump, the OmniPod, for a whole week before I have to insert a new transmitter. It is very small as you can see. There is a tiny wire, about the size of a hair, which is inserted underneath my skin. An amazing little tool that is going to help me. Ah, how I love technology!

One of Travis’ co-workers was very sweet and bought me a little treat. If you have ever had a Droolin’ Moose malted milk boulder you know what I mean, they are delicious! I couldn’t stop at just eating one, I do think four was too many though. Thanks Amy!

Yummy!

Want to see one of the reasons I am waiting for lungs? In the picture below is my PFT graph (pulmonary function test). The black dotted line is the predicted lung function for my age, height, and weight. My actual result is the red line. You can see the significant difference from a “normal” lung function to my own. I am only breathing with about 30% of my lung capacity. I can’t wait to show a bigger graph!

After my regular check up with my doctor last Thursday, we decided to head up north to Lake Vermilion for the fishing opener and spend Mother’s Day with Trav’s mom. The weather was great, the only problem was the fish weren’t biting much! Although between five of us fishing, we did catch enough to eat lunch. I only caught one little perch, but as you can see Travis was the big winner with a 3 1/2 lb bass. We had a nice time, it was relaxing sitting by the lake but I was pretty exhausted coming home.

Travis and I at sunset

My only fish for the weekend

The BIG winner!

Me & Dr. Dunitz

Last week I had a routine check up with my primary physician, Dr. Jordon Dunitz. After looking at my weight, PFT’s (pulmonary function tests) and discussing my overall health, he gave me the “O.K.” to come back in two months, yippee! While I still will need to see several other Doc’s for a variety of reasons, this was good news.

Though we were very pleased that my health numbers were stable, my energy level was not. I have a new normal I have not adjusted to yet. Two weekends ago I couldn’t do anything beyond my health regimen except sit on the couch. It is frustrating for me not to have my usual vim & vigor. I am now trying to figure out my limits so I can continue to do most of the things I love. They will just have to be more spaced out.