Nikki's New Lungs

I’m finding my recovery is definitely a slow process. It seems I have one good day then one bad day. I will get excited because the pain will be a little better one day but the next day I am back to taking the heavy duty pain meds. I am relieved I’m squeaking out some good days though. Hopefully today will be a good day so we can participate in some of the Fourth of July activities.

My niece, Lauren, is my new full time nurse. What a wonderful little helper she is. She has been watering all the plants, preparing my meals, doing the dishes, cutting my food, making the bed, she did a few loads of laundry and put all the clothes away, and even made chicken stir fry for dinner Wednesday night! Did I mention she is eleven years old? I’m lucky to have her staying with us.

Another benefit is the sling I received last Friday. It is so much more comfortable than the sling from the hospital. It has a cushion that goes around my waist which holds my arm out to prevent the strap from rubbing on my incision and my sternum. Before, I was dragging a pillow everywhere to support my arm.

Happy Birthday America! Happy Birthday Ben! Thank You to the Troops! Have a wonderful and safe Fourth of July weekend!

With everything I have endured lately, I have something to celebrate. Yesterday, I took a deep breath with my new lungs. Yesterday, I celebrated double digits. It has been ten months since my transplant! As I take a deep breath with my hand on my chest feeling my pretty pink lungs filling with air, I say a little something to my donor. A thank you. An I love you.

I have been fortunate to have had excellent help around the house. It is difficult managing on my own. My right arm is immobile in a sling. But it has also been hurting to use my left arm. It makes it a lot more challenging to do anything. I knew my right side would be painful with the incision and all the digging around the doctor had done during surgery in the shoulder area. I did not realize the impact of my sternum being cut and how it would effect using my left side.

I attempted to stop taking the narcotics but quickly came to the conclusion my body is still in need of more potent pain management. My desire to simply will the pain away, isn’t quite ready for implementation yet. Everyday there is a slight improvement though.

I am definitely no longer taking a detour. I’m on the correct road to recovery!

I was mentally, physically, and painfully drained on Monday. For the first time since surgery, I was actually able to get a decent amount of sleep Monday night. I think my mind and body had enough, I just needed to shut down. But as the song from the classic movie “Annie” goes, ” The Sun’ll Come Out Tomorrow”

Yesterday, the sun did come out. I FINALLY had a small amount of relief in my pain. It is small, but for the first time an improvement. My throat felt a little better, I was able to swallow ALL of my medication. And, I was able to eat substantial food! It certainly was soothing to feel a little like myself again. It is amazing what a new day can bring.

After hearing Monday about more clots in my arm, luckily the hematologist had time to meet with my mom and I yesterday. I had so many unanswered questions he was able to resolve. He reassured me that I do NOT have a blood disorder. Others who have experienced the same vein issue as myself, unfortunately sometimes continue to produce clots due to the lack of circulation. My body SHOULD make new capillary veins to take on the blood flow but the process will take months.

One of my fears was, if I keep producing clots in my arm, will I eventually lose my arm? He told me he has never heard of anyone losing an arm. I may be more symptomatic i.e. swollen arm, tingling, numb sensation, but my arm is sticking with me! For now, the plan is to be back on the blood thinners with hopes to dissolve the new clots. We will reevaluate in three months.

Today, my friend, Megan, stopped by with some delicious lunch and some baked cookies. As you can see how adorable (and scrumptious) the cookies are, it was a nice reminder how blessed I am to have new pretty pink lungs. Without my donor, I never would have survived the past surgeries. Without my hero, I may not have been typing this update. Thank you everyone for the delightful and uplifting messages. I have endured some tough days lately but your comments and support have honestly given me a strength to keep fighting. Love and hugs to you all.

It is very difficult for me to type due to the pain I receive on my incision across my chest. And I’m using one hand, so this will be brief. When I came home Saturday, I noticed my right arm was VERY swollen. Very much like the Popeye arm I had after my transplant. My right bicep is almost twice the size as my left arm. We thought maybe the I.V. I had in that arm had infiltrated. This means the fluid I received was no longer in the vein but was absorbed in the tissue.My mom had to take me to the University today for some blood work. I don’t get a signal on my phone in the basement where the lab is located. We no sooner got in the car to come home, not a block away from the clinic, and I had a voice mail pop up on my phone. My doctor ordered an ultrasound to look at my arm. We turned around and headed back to the basement at the U.

After the test, I opened the bathroom door to find my transplant coordinator standing with my mom. I sat down in the wheelchair and she told me I have a couple new clots in my arm!!! We then proceeded to go upstairs to meet with my doctor. Once again, after hearing yet another bit of devastating news, I broke down in tears. Tomorrow, I am going to meet with the blood specialist again. We need to know what is causing these clots.

When are the tears going to dry up? When is the pain going to stop? When will the bad news end?

Nikki was discharged from the hospital yesterday.

She’s home. But it hasn’t been a pleasant experience. We still can’t get her comfortable. She finally found a chair that she liked at the hospital. There was a chair with no arms that was a little too small. The pleather chair they have for family members is supposed to be the comfy chair, but that was too big for her. This one was just right. The arm rest was at a good height so she could rest her immobile appendage without too much discomfort.

Goldilocks Chair

Please note that she was using the commode only as a stool. And check out that birds nest she’s got in those golden locks from being in bed for almost a week. I’m not the best brusher, but I try. Her bed at home is not too firm and not too soft. It’s just right. And she needs the sleep.

The last couple of days have continued to be a struggle. They haven’t been able to get her pain under control, but she realizes she’s just going to have to power through it. The other pain medications that they’ve tried after the transplant and the rib removal either didn’t work or had adverse side effects. With this pain medicine regimen, she’s able to reduce some of the pain and keep her nausea at a reasonable level.

Today she commented again that she feels worse than after her transplant. Now she’s in pain, but is unable to use her arm. It stinks to be immobile and home bound. She needs help getting out of bed. Mainly because she can’t put on her sling by herself. With only one hand, it’s difficult to open any pill bottles or packaging for her abundance of medications.

She’s made steady improvements over the last few days. She was able to take a walk each day.  Before Saturday’s double feature of a pudding cup and a few tablespoons of cottage cheese, her last meal was on Monday night. Today, she was even able to eat some cherry chicken pasta salad that our friend, Julz, brought over. The inflammation in her throat is still bothering her. Remember, she had the tube down her throat for about 6 hours and that really irritated it. This was after having the invasive tube down her esophagus for a few hours for the rib removal the week before. If I barely touch it while adjusting her sling, she blurts out a quick and loud, “OW!”

Her day has consisted of lying in bed and walking to the dining room table a few times. Once we get her positioned and her elbow propped up, I make her lunch or dinner. Fortunately for me, her menu of pudding and cottage cheese is still within my culinary capabilities. Today, after turning down my offer to make oatmeal (or porridge), she even declined home made fluffy pancakes. She’s just not ready for them yet.

We’ve got to have someone with her all the time for the next few weeks. I believe we’ve got the first week covered with volunteers to Nikki Sit.  There is a possibility we may need someone to come to the house on Tuesday morning from 7:30 AM until 11:00 AM. The work will likely be pretty easy, but it’s a great setting to enjoy a cup of coffee in the morning. Please send a message to nikkisnewlungs@gmail.com if you have some free time to lend a helping hand.

Or, let us know if you would like to stop out for a visit in the next few weeks.

Thank you again for all the kind words, thoughts, and prayers. They certainly help.

I took a picture of Nikki yesterday. She called it her sad face.

As you can imagine, she was pretty upset when she learned the bypass wasn’t successful. We were all upset. To see her go through all of this pain and still have the clot really makes you second guess. 

In speaking with several doctors here, we do think that the rib and tissue removal will help to free up space for those collateral veins to grow larger and carry more traffic. I think Highway 100 used to be called Lilac Parkway. Now it’s 3 lanes wide and people cruise at 65 miles per hour.  

Her surgery was on Tuesday. It was all day Tuesday. She was intubated so long during surgery that the tubes that were shoved down her throat irritated the esophagus so much that she’s been unable to swallow. This has proven to be a challenge in her recovery. She is still unable to swallow her pills. Her pain and anti-rejection meds needed to be delivered via I.V. A few of her pills were able to be popped open and the contents of the gel caps were sprinkled on a small spoon of pudding and she was able to take those down.  Most, however, are not available in liquid and she’s unable to take them. 

Nikki still hasn’t been able to eat. She can only take small sips of water. Two at a time. The swelling in the throat is being treated with steroids to help with the inflammation. This makes it difficult for her to talk. And a main reason she still hasn’t been up to having visitors. So that makes it reasonably quiet in the room. I’ve actually got a nice mobile office set up. It’s good to have an understanding boss. Aside from the nurses, vascular surgeons, cardio-thoracic surgeons, pulmonologists, occupational therapists, physical therapists, orthopedic therapists, nursing assistants, and cleaning crews, I can actually get quite a bit of work done. 

Nikki still has quite a bit of pain. Yesterday, she said she thinks this surgery is more painful than her lung transplant. I think she was just on better narcotics for a longer period of time while her sternum was starting to heal last time. We learned a bit about her pain medications when she had her rib removed a couple of weeks ago. Taking it via her PCA works better for her than taking it via constant drip. PCA is an acronym for Patient Controlled Analgesia, but she just calls it her “Little Blue Buddy”.

We also learned a better dosing for her anti-nausea medications. We’re hoping she will eat soon.

Nikki was able to sit in a chair yesterday for about 15 minutes. Today, we went for a walk. It was no 5k, but it was a big deal. I paced it off and calculated it to be a 0.15k. That’s the equivalent of about a football field and a half.

Yesterday was a little better than Tuesday. Today was a little better than yesterday. She’s recovering, but it will take some time.

I had my rib removal surgery last week and I have my vein bypass surgery tomorrow, what else should I do? Why not walk a 5k! Yesterday morning, Travis, Rosie, and I walked the Chad & Jenni Greenway’s Gridiron Gallop 5k run/walk to benefit youth athletics. Travis thought I was crazy to be in pain with my missing rib and walk that far. But really, he has known that I’m crazy for years now 🙂 We ended up walking around Lake Nokomis with our friend Bob. It was great to catch up with him. We even finished in less than an hour.Last night, my parents, brother, and Dana all came over for dinner. Since it was Father’s Day, I wanted to make something special. I asked my mom if she would help me make one of my dad’s favorite meals. She offered to cook the main dish if I made everything else. I told her it was a deal.  It only seemed appropriate that since I am in need of a “spare rib”, we had sweet and sour spare ribs of course! They were absolutely delicious.After dinner last night, our door bell rang. It was all three of the kids that live next door. They had made a get well soon card and had a bunch of the kids in the neighborhood sign it. They also gave me some beautiful purple flowers. Today, my mom, Travis, and I were able to meet with the surgeon who will be performing my surgery tomorrow. It was great to have him explain the surgery and answer all our questions. The doctor explained how he will not use a vein from my thigh, but use a vein from a donor. He will use the same incision he used during the rib surgery, although he will have to make it a little longer. As I mentioned before, he also needs to break my sternum in order reach the vein under the clavicle. It was good news to learn a broken sternum shouldn’t be as painful as removing a rib! He then gave me a pleasant little surprise when he stated I need to wear a sling on my arm for six weeks! That definitely makes it more difficult around the house, but somehow I will manage.

I also met with my primary physician today. He was very helpful with the preparation for tomorrow. Unlike the last time when I had six pokes before entering the operating room, he made sure that I will have someone from ultrasound available to start my I.V. in the morning. He also informed me, I no longer need to have routine bronchoscopies . Anytime someone tells you that you don’t need to have a tube stuck down your throat to scrape samples from your lungs is a fantastic day!

Looking forward to tomorrow and getting this clot issue resolved and on my way to recovery from these last several surgeries.

Surprisingly, last night I slept great. I think I was mentally drained from the day. I took some pain medicine about an hour before I went to bed. When my head hit the pillow, I was out. I slept from 11:30pm until 5am when the pain finally woke me up again. Longest chunk of time in over a week. It felt great!

I spoke with the surgeon today. He told me, the sooner the better to schedule the next surgery. I took the first available time for the operating room, which is Tuesday. It is called a partial sternotomy with right subclavian to innominate vein bypass with subclavian vein patch. Say that ten times fast!

The surgeon will use the same incision on my chest from last week. He will try and find a viable vein from my thigh for the bypass portion. If I don’t have a good vein, I will receive a vein from a donor. Another great reason to check the donor box on your license. It not only can save someone with a major organ, it can help in instances like what I am going through.

I checked in at the hospital at 12:30 this afternoon. The day was starting off much better than last week. Ultrasound came to my room to start an I.V. and only had to poke me once! I thought, today’s procedure is going to be awesome. They wheeled me away from my family to begin the process of placing a stent.

I was prepped in both the groin and the arm and we started the procedure. Interventional Radiology was in charge today. Once again, I had no sedation and was able to watch everything on the screen. The doctors were having difficulty threading the glide wires but we were slowly making progress. I was lying there thinking, we are so close, just a little further and we will be through the scar tissue. We started the procedure at 3:45pm and it was now 5:00pm.

That is were the road blocks went up. You know what it’s like when you are driving and you come across a construction sign that says, lane closed next 22 miles, and those seem like the longest miles ever. That is what the next hour felt like to me. At 6:00pm the decision was made that the scar tissue was like a rock. Unfortunately, nothing more could be done. There wasn’t a wire in the hospital that could pass through the vein. Trust me. They tried all of them! We were not able to place the stent and it is no longer an option to attempt again.

Now what? My understanding is, I may possibly need to have another major surgery called a vein by-pass. It involves breaking my sternum in order to reach the vein. I don’t have many details at the moment. Apparently the surgeon is going to contact me tomorrow to discuss the procedure.

After the thought of another surgery that will most likely be very painful, I admit, I shed a few tears. The outcome was unsuccessful today but I give credit to my medical team today and a heartfelt thank you for trying everything possible.