Nikki's New Lungs

This is a video blog, enjoy!

It seems like time is flying by. Sunday was my eight month lung-a-versary. The results of my bronchoscopy came back on Monday.  It had been just a little stressful waiting for the news these last two weeks. It was a nice lung-a-versary present to learn there were no signs of rejection!

Unfortunately, there’s a “but”.  I’m rejection free, BUT I am growing a Staph infection in my lungs. Remember, the doctors had found Staph in my sinuses.  Because of gravity, it drained into and is growing in my lungs. I have also had a persistent cough that has been progressively getting worse. My doctors scheduled an X-Ray for today.  By tomorrow, we should know if we are going to do anything to treat this cough.

Yesterday, I had my angioplasty. We started off with the plan of going through the groin. As the doctor was trying to thread the wire up to the clot, she was having difficulty burrowing through. She injected dye through an I.V. in my forearm to diagnose the problem. She said, no wonder you were having symptoms in your arm, the vein is completely occluded. Over the past 8 months without the blood flow, the scar tissue had formed and hardened. It was a good decision to do the procedure.

Once we knew that this was a complete blockage, we had to go to plan B. She had to put another smaller catheter through my upper arm near my bicep. I think we used just about all the supplies in the hospital while trying to break through the clot. She kept sending the nurses out to get a different size catheter or a different size wire. She finally got through. Once the wire had penetrated the clot, she inflated a small balloon. Because of all the different catheters we used, the vein in my arm was starting to spasm. It was time for plan C.

It’s amazing to get the play by play directly from the doctors.  Almost everybody gets sedated for this procedure, but not yours truly.  I know, I’m crazy.  I like that I can watch through the same monitor as the doctor. So plan C involved going back though the groin with a wire that had a lasso on the end of it and grabbed the other smaller wire from my arm. It was fascinating to watch.

We were having a conversation about our dogs when she said to me, you may be interested in knowing you have a wire going from your groin, through your heart and out your arm. In the operating room, we call that body floss! We all started to laugh. Medical technology is unbelievable.

Once she was able to thread the larger wire, she was able to blow up a larger balloon. It was quite painful as it needed to stay inflated for sixty seconds. After the balloon had deflated she rechecked the progress with dye and there was some movement. She blew up one more balloon that was even larger with the hopes of expanding the vein further. The minute it was expanded was very difficult. The pressure was so intense, my head and neck felt like they were going to explode. I just closed my eyes and squeezed the nurses fingers. She counted down the seconds and finally it was over. Once again, they rechecked with dye and confirmed we had blood flow!

In the first picture below, blood had to travel elsewhere since the main vein was blocked. You can see all the little veins filling because of the blockage. Notice the blood flow stops where it should continue downwards. The second photo shows the flow after the angioplasty. You can see how it is one flowing movement. No more little veins.  The blood is flowing as it should. I included the last picture that shows the balloon when it was inflated.

I tried something different, my brother and I took a Ukrainian egg decorating class. I am glad he asked me to join him. It was great spending time with him doing something unique. As you can see, my final product is very amateur but we had fun.

Yesterday, I definitely had a “Good Friday”. In the morning I had a consult with an Interventional Radiologist. We discussed the clot in my neck and came up with a plan. On April 28th, I will be going to the hospital to have an angioplasty. An angioplasty is a procedure to repair a blood vessel. The doctor will insert a catheter in my groin then thread it up to the clot in my neck. After the catheter is in place they will blow up a balloon which should help to depress the clot and allow for more blood to flow. If this works, it might mean I don’t have to be on the blood thinners forever. It should also prevent my hand and arm from turning purple when I raise my arm above my head.

I also met with my dermatologist for my yearly mole check. Everything went well. He explained that now that I have been transplanted, I am VERY susceptible to skin cancer. Transplant patients are extraordinarily prone to skin cancer due to the immuno-suppressants. Out of all the organs, lung transplant patients are at the highest risk because we take the largest amount of medication. It doesn’t mean I can never be in the sun again, but I have to take extra precautions whenever I am outside. I will be buying sunscreen by the gallon from now on, and checking in with my dermatologist more frequently.

And…I am happy to share with you the preliminary results from my bronchoscopy. They came back with no signs of infection or rejection! Yahooo!

A wonderful Easter to all.

The Wall of Heroes at North Memorial Medical Center is a powerful tribute to those who have given the greatest gift, the gift of life. Last night Fox9 News featured the Wall of Heroes. Click on the link to watch the video Wall of Heroes

After all the issues I have been experiencing lately, today was a fabulous day. I had PFT’s (pulmonary function tests) to check the capacity of my new lungs and I am jumping for joy!! My lung function is at 75%! I am so excited. I had a significant improvement since the last test six weeks ago. I can’t remember how old I was the last time I had numbers that high. I am so grateful to my donor for giving me this opportunity to celebrate such an accomplishment.

As for the swollen glands in my neck, my salivary glands are plugged. My doctor told me to suck on lemons! The lemons are supposed to make me salivate (no kidding) which should help to unplug them. He took a swab of the back of my throat to determine if the redness is a mild viral infection. He also stopped one of my medications. That’s one less pill I need to take throughout the day.

Tomorrow I have another nerve racking test, a bronchoscopy. It’s the TRUE test that checks for infections and rejection. I will let you know when I have the results.

Once again we spent a weekend night in the lovely emergency room at the U of M campus. I had a pretty severe headache on Thursday night that even made me nauseous. I ended up calling my transplant coordinator because the pain was so bad. She told me that if it got worse, I was to head to the hospital. They worry about brain bleeds when on blood thinners.

The headache subsided a little but was still lingering on Friday. Since it had lasted for such a long period, my doctors wanted me to head to the E.R. After eight hours of laying there and trying various medications, I only received a little relief. Today my headache finally disappeared. I also started to get a sore throat yesterday. Every time I’ve eaten in the last couple of days, the glands in my throat have swollen up like balloons. It’s the strangest thing.

I am pleased I have a routine checkup tomorrow to discuss all my issues. It never ends with this girl 🙂

Yesterday was not the best of days. I received the news that the darn blood clot I have had since surgery has not disintegrated at all. That means I will most likely have to be on the blood thinner, coumadin, forever. The doctor is going to talk to the Interventional Radiologist to see if there is anything we can do. First we need to find out if an angioplasty balloon could even reach the clot and possibly place a stent. The clot is attached to the vein that starts in my neck (jugular) and curves around to under the clavicle bone so it’s a tricky spot. Then I need to know if the risks out way the benefits. Right now, when I have my arm over my head like when I’m washing my hair in the shower, my arm turns a slight purple. I am bummed to hear this news but I am still breathing and feeling well. Let’s hope this is only another bump in the road. Just because it is pothole season in Minnesota, doesn’t mean I need to have them too!

One of my dreams for a very long time has been to ride on the BIG rides at the Mall of America with my niece, Lauren. I haven’t been able to go on any of the thrilling rides ever since I have been on oxygen (at least seven years). Since my surgery she has been asking when I will be able to join her. The doctors had told me I had to wait for a number of months to allow my sternum to heal before I could endure any rigorous movements.  This last Wednesday, I had a dream come true! I never thought I would say I spent seven hours at the MOA riding rides but we did!!! We went on everything that we could, sometimes multiple times and we even spent an hour and a half on the obstacle course when you wear a harness and climb all the way to the ceiling of the building. I was so proud of both her and Dana as I convinced them to conquer their fears as we went on rides they weren’t very comfortable trying. I couldn’t wait to get on them.  As it turns out, they ended up being all of our favorites. I even had my picture taken with SpongeBob 🙂

Then there are my sinuses. I learned I am growing a Staph infection in those little holes that could possibly be causing the slight cough I have been enduring. I have mentioned before that what ever is in the sinuses drains to the lungs. I was started on an antibiotic for a couple of weeks.

April is National Donate Life Month! Please remember to share the importance of registering to be an organ, eye, and tissue donor by checking the box on your license. If you would prefer to register online before your license is up for renewal, click on the link Register as an organ, eye, and tissue donor Also, Friday, April 11 is National BLUE and GREEN day. If you support organ donation please wear Blue and Green!