Nikki's New Lungs

Another thing that has to be in check while waiting for transplant are my blood sugars. If my blood sugars are high I am more prone to get an infection. If I get an infection my blood sugars are going to get higher. It’s a never ending cycle. Lately my blood sugars have been alright but my doctor and I decided that they could be even better. It’s so important to have everything in check before transplant. It makes everybody’s job easier and ultimately helps with recovery. Late last week we started over with my insulin pump settings. I have been nervous and a little cautious this weekend. It shows, I had trouble all day today getting my numbers in a good range. Since they were much higher then I am used to, I have not felt the greatest, sluggish and off. I will be checking more often through the night so maybe tomorrow I will start off better then today.

When I went through the process almost two years ago for transplant consideration it was quite an ordeal. One of the most stressful moments in my life that I have ever experienced. I remember waiting to hear if I was approved. It truly is the starting point. There are so many tests and one thing could prevent it all from happening. I remember sitting in my clinic and receiving the news I had been approved! The emotions that went through my mind were unexplainable. PHEW! That was probably number one that I exhaled. Now onto the next step…….

If you are interested in spending almost 20 minutes and watching a video that explains more of the process and understanding how much goes into qualifying, my primary physician was interviewed by the CF Foundation. I am so lucky to have him, in my eyes he is the best! Actually, I feel so lucky to have my entire health team. They are honestly a team and I can’t express how grateful I am to be in their care. Lung Transplant: The Evaluation Process

Just went for an hour bike ride! Don’t forget my bike is electric (no leg work needed). And it was AWESOME! I went on bridges I never knew existed before! We took a bike trail to one of the lakes, went around the lake and came home. It’s so weird for me to say “we took a bike trail”. Can you tell I’m excited? Travis and I actually were able to go for a bike ride together. One of the things I have missed so much.

Have a wonderful St. Paddy’s Day!

Yesterday I had a quick doctors appointment. I needed to get a shot. When you’re on the transplant list, vaccines need to be up-to-date. One of the required vaccines is hepatitis B. It is a six-month series of shots. After the first shot, you have another one in a month, then the third and last shot of the series is six months from the initial vaccine. Then six months after the series is complete they take some blood to check to see if your body has accepted it. Unfortunately I have gone through this once and for some reason my body didn’t approve. So, we will try a second time. If my body doesn’t accept this time, they will not try again. It may mean that post transplant I could end up having to take a couple more pills. Before the nurse gave me the shot I talked to the syringe and gave it a little pep talk. Yesterday was my second of the series so now I wait for another five months. The only downfall from the vaccine is an awfully sore arm.

I did get some good news yesterday. March 1st I had my annual studies. They consist of chest x-ray, a lot of blood work, pulmonary function tests (PFT’s for short), a doctors visit, and every other year a bone scan. My results from all of the blood work was great. my body approved all of the other vaccines we have done. That is a good sign, now we just need this last vaccine to take. The picture below are of all the tubes of blood that are required for annual studies.

Filling all those tubes is not an easy task when it comes to my veins. It is near impossible to find veins in my arms anymore. We actually have to draw blood from my feet. It still took three pokes in my foot to fill all those tubes above. I have had so many IV’s because of  the need for antibiotics. While they are helpful with my lung infections, the medications are very harsh on the veins. We have tried more permanent methods like Picc lines or Port-a-caths but my body does not allow them to be used any longer. The Picc lines are in the arm but because I have had so many scar tissue has built up and they will not thread anymore. And Port-a-caths form what they call a fibrous sheath at the end of them and they plug. My body recognizes the foreign object and tries to heal it.

Today was one of those days that reminds me why I am on the transplant list. My energy level is very low. I sometimes push myself to do tasks that seem to be so simple yet require a lot of energy. Laundry for instance. I live in a two story house with a basement. Stairs are not my friend. I am out of breath when I get to the top of one flight. You add carrying a basket of clothes, that requires much more effort, even on a good day. When I carry stuff on the stairs I only get half way up have to sit down for a minute. I like to do laundry on days when Travis is around. He is able (and willing) to carry the laundry which is so very difficult for me.

Another reason I am reminded about being listed. I knew I was tired but we had to eat dinner. It seems to really make me tired if I have to cook much. I have not made dinner in months. We eat a lot of take out and it gets old. So I agreed to go to one of our favorite restaurants. I thought it would be quick since it was a Sunday night. 2.5 hours later we were finally leaving. It happened to be a popular night to go out. We saw friends that we don’t see very often which was very nice (love ya Kell bell & Kar bear). But on the way home it really hit me. I had closed my eyes almost the whole way. I love being social but I hate how it drains the little energy that I have right out of me. It was one of those nights I should have listened to my body and stayed home. Sometimes another night of pizza isn’t going to cut it though. Good thing is I can sleep in tomorrow.

What a morning! Thank you Joy Lim Nakrin at channel 5 news for speaking with me. It was wonderful to talk about my blog and awareness for organ donation. It is so hard to say so much in such a small amount of time. Things I always like to share which I didn’t mention this morning are 18 people in the U.S. die everyday while waiting for a transplant. Age and health condition do not prevent you from being a potential donor. One donor can help save or enhance up to 60 lives. There are burn victims that need skin graphs, corneas to see again, and broken bones that can be fused together in someones spine to help them walk.  One of the most important things you can do if you are or become a registered donor is discuss it with your family. Share your wishes and know what they wish as well. My goal right now with the shortage of registered donors it to not become one of the 18 that die before getting a transplant.

I need to give myself a little R&R the next couple of days to catch up on some rest. I was already pooped before this morning so now its time to relax. With my ribs aching last night I had trouble sleeping. Finally at 2:30a.m. I took a Tylenol to help alleviate some of the pain and sleep a bit before the alarm went off. For those that know me, a 7:00a.m. wake time is not usually in my schedule. Although when it comes to awareness for organ donation I will try and get up at any hour.

I came home this morning after getting a little breakfast (something I’m not always awake for) and laid down until 2:00 this afternoon. I would have liked to stay in bed longer but I needed to do a treatment. I am bummed I also had to miss a dear friends kid’s birthday party. Happy Birthday Brea! I miss out on a lot of things because I don’t have the energy or I am not feeling well. I am so fortunate to have the friends and family I have. They are very understanding when I need to miss things due to my health. Or they notify me if they or their kids are under the weather. Sometimes its hard for people to understand that a cold to you may literally be deadly to me. Or an infection could be enough for me to be removed from the transplant list. I love each and everyone of you for that. I like to say I have the best support system in the world!