Almost There

Tuesday was a big day.

The social worker phoned to ask what changed my mind about going forward for transplants. I explained it all.

She then asked about my mom. I told her that mom was now in an assisted living facility and that my brother would be staying at my house during the 6-week post transplant period to supervise her care and drive her to appointments. I do not believe they would have moved forward with my transplants if she was living independently and they felt I expected to continue to care for her during this period. She was happy that I had a plan in place.

The final problem was that we were to name another person as backup for Michael as a caregiver if he became ill or other issues that would leave me alone during the 6-week period. We had chosen our friend Rick, our neighbor down the street. Rick of Rick and Natalie. He is retired, Natalie is still working and they travel once a year. Perfect. The social worker was not happy that we had not asked him yet.

She then told me that the team was going to review my case and I would be notified if they approved me being listed that day or the next.

Oh my.

I quickly spoke with Michael and asked him to contact Rick immediately. Learning he agreed to being our backup, I phoned to thank him. We had a great chat. Hopefully, he won't be called up to service though he has to go through some training like how to spot when I am rejecting the new lungs. I phoned the social worker to leave Rick's name and contact information.

Within a couple of hours, my transplant coordinator phoned.

THEY APPROVED MY BEING LISTED BUT...

Why is there always a but? We already had an appointment to meet with the surgeon next week. They wanted to wait for his approval before the team assigned a number to me. Only then will I be officially listed for new lungs.

Waiting Mode

We are waiting to meet the transplant surgeon next week. I think it is to have him review all my cardio tests and to give me the once over to see if I am fit enough to survive the surgery. In the meantime, there are appointments and doctors with mom and I discovered something yesterday.

I am not thinking clearly.

It was a subtle hint when I took the wrong freeway exit to CVS then couldn't remember exactly how to get around a freeway. Duh. Got it but felt rather silly.

Once there, I found mom's items then bought two items for us. Mom's stuff: no problem. As the clerk was checking ours, I realized I should have bought another Alka Seltzer Antacid as it was buy one get one 50% off. I told her to charge me for the additional 50% and I would go back to pick it up. Great. Done.

Heading back to grab another one, I picked up another of mom's Digestive Advantage Gummy Probiotics confusing it with my Alka Seltzer antacid. It became even more confusing as we tried to match the receipts with the items until we got some help. We three women tried to figure out what happened. To add to the confusion, mom's Digestive Advantage was for Kids, so that had to be changed. It finally occurred to me that it was all my fault, I had confused the two items and one woman ran back to pick up the needed items for me.

It was then that I realized why I was not thinking clearly: Having just read the paperwork about everything from pre to post lung transplant surgery, it was very daunting. I paused, looked at them and thanked them. I very briefly explained that I had been to appointments everyday last week and that I was being listed for new lungs after an exposure at work and was feeling very overwhelmed.

They were so kind that it brought tears to my eyes.

Step 2: Convince Doctor

Step 2: Meet with a transplant doctor to convince him that I am physically, mentally and emotionally ready to move forward with transplants.

Before that happened this morning, I did have my pulmonary function tests and a 6-minute walk test yesterday. I was rather surprised at the results:

• SPIROMETRY: Forced Vital Capacity- 1.34 or 45% of expected
• DIFFUSION: Diffusing Capacity with the hemoglobin excluded - 8.88 or 37% of expected

So, my lung capacity is about 45% and that 8.88 diffusion number is the lowest I have had since the very beginning of the disease in 2004. It explains so much. After a long day, I will sit down and totally fall asleep on the couch beginning around 5:30 or I will fight to stay awake until 7PM. I just don't have the quick flow of fresh oxygen going through my body anymore.

Today, I met with one of the transplant doctors. I was practicing how I was going to tell him that I wanted to move forward towards transplants and wanted to be listed. Nervous but feeling prepared, he walked in, recognized me, I reintroduced him to Michael and he asked, "What can I do for you today."

My quiet, soft-spoken Michael spoke up from the back of the room to say, "We are here for new lungs. We are ready."

Didn't need all my practicing!

This doctor totally got me and who I am. He did mention that something they refer to as "grit" counts and really can't be quantified but is so important as a transplant recipient. They want people with grit, not passive or people who are totally fearful. They just don't do as well. He told me I had a ton of grit. Loved that.

Through the conversation, I mentioned that I wanted two lungs. He said yes. He said he had never seen anyone with my 15-year history of pulmonary rehab and so fit. Apparently, that is very rare.

The problem: My numbers meet the minimum to qualify for transplants but barely. I do look too good but I did tell him that I really cannot do everything that I have been doing up to a year ago. It has been a difficult year, health-wise. I am done. My body is beginning to break down. It is time.

He recommended that I meet with the surgeons then he will take my case to the entire transplant group who will decide if I will be listed and what number.

I learned that my blood Type A only has 15 people currently waiting on the list. Compare that to the 60 people with type O and clearly I am in a smaller waiting room. The other good news was even after having a baby and blood transfusions, I have no antibodies that have to match. That alone will make is easier to match a donor.

To add drama to all of this, mom's assisted living owner phoned while we were waiting to see the doctor. Mom was having a reaction to medications again and was in delirium. Again. So, after our visit with the transplant doctor, we rushed down to see her. She was fine and denying any problem. According to the owner, she was hallucination again and we think it was caused by a new drug she began on Tuesday. I am waiting for a call from her cardiologist for help and advice.

AND British Don's plane just landed and is meeting Michael at Blue Bottle Coffee before they make their way here for homemade appetizers, dinner and dessert. He will be with us until Saturday morning. Did I mention I had to change my hair appointment because of mom so I will be in the chair at 7PM probably snoring as she colors and cuts my hair!

Screeching Halt

Well, that didn't work. I had the whole day planned:

• Deliver some of mom's medications to her assisted living people
• Visit with mom
• Remove and mail her heart monitor
• Fill my car with gasoline
• Eat leftovers lunch in the car
• Arrive at my university hospital on time, park, make some phone calls then arrive right at 12:30 to the pulmonary function lab
• Then.....

They didn't have an appointment for me. I told them who in the transplant team had made the appointment and they got her on the phone. Apparently, after she made today's appointment, she cancelled another set of PFTs in March. Well, someone was confused. They cancelled today's appointment and saved the March appointment.

Sooooo, I am heading back up there on the only day this week when I wasn't going to be driving back to the university hospital. Wednesday, 10:00 for a 6-minute walk test and 11:00 for the PFTs. I hope!

Step 1: Gathering the Data

My transplant coordinator phoned this afternoon. After a lovely chat, we got down to business. The most interesting question she asked was, "Do you feel like you are sick enough to be listed?" It may sound strange but I did feel awful with the wheezing, which put me in the hospital but now recovered, I don't feel too badly. I am functioning. I am clearly slower and can't do all I wish to do but this is not awful.

She offered a plan: I am having pulmonary function tests on Monday to determine any changes with my lungs. On Thursday, I will be meeting with a doctor from the transplant team to review my CT Scan when I was in the hospital before Christmas and to determine if I am sick enough to begin the listing process.

So, we will gather all the data, stir in the doctor's experience to determined my next steps.

The Listing Process Begins

Happy New Year

2020

Day 1 of the process for new lungs began today with a simple phone call to my lung transplant coordinator.

On December 21 and 22, I was in the hospital with a wheeze that would not stop. Apparently, it was a dangerous situation in my "fragile" state and I would be discharged once the wheeze was gone. The Respiratory Therapist had been giving me nebulizer treatments every four hours but his eyes lit up when we talked about having to banish my wheezing. "I'll get rid of it," he said.

And he did.

It started with a nebulizer treatment attached to an Aerobika followed by another treatment that caused me to cough up mucus. We were able to keep the samples for testing then he began another nebulizer treatment of a drug that would soothe and open everything up. It worked. No more wheezing.

It was when I was ready to be discharge that SHE arrived. The head of the Lung Transplant Clinic. She told me to call the clinic to arrange for Pulmonary Function Tests for my current numbers and they would also make an appointment.

The process is that the entire transplant team will sit around a table, discuss the patient, review the files then they assign a listing number for transplants. The same information goes to the State, who also assigns a number. Dr. S. and I agreed that my initial number would probably be a little high but I would be on the list waiting for the next downturn. Once listed, I will not be able to be more than an hour from the hospital.

I have so much more to learn and will document the entire process both the good and the not-so-good.

In other news: My mom has fallen five times since Mother's Day and fractured her pelvis in October. After surgery and rehab she has landed in Assisted Living and still is expecting to have her independent living situation again. It doesn't look good. She and I were in different hospitals and poor Michael had to be with her through the night then drive into the city for my discharge. After finding that the hospital mom was in did not address two major issues, Michael and I drove directly from my hospital to her assisted living to drive her to her hospital ER, where she spent two days.

The knight in shining armor was our son, William. He arrived December 23 ready to help. He was magnificent. Our first stop: Mom's hospital where we found that she was so much better and being discharge December 24. While I was with her being discharged, Michael and William made Christmas happen. They set the table, made the appetizers, baked and frosted the German Chocolate Cake and distributed the annual homemade food gifts to the neighbors.

Mom was with us on Christmas Day and we both were waited on. They took care of everything. It was the best Christmas present I ever received as I was still recovering from being in the hospital.

The next day, we got a call that mom had a 103 fever and pneumonia. Back we went to her hospital's ER, where they kept her the night while filling her with antibiotics. While there, William took charge. He kept her calm, told her stories about the venues he plays in Chicago and she began to share with him what they were like when she and my dad were dating. He sat, very interested and listened. While I was out of the room to eat, he dealt with the doctors. As he was leaving for a tour in Australia the next day and said goodbye to her in the hospital, he held her and told her how much he loved her. It made her feel fantastic, loved, and valued.

Clearly a Knight.