PAIN

 Everyone asks me about the pain. I really have none. Zero. 

Instead of the incision down the middle of the torso, it is arm pit to arm pit just underneath the breasts. They then cut the sternum to gain access like lifting the lid of an automobile. That is later wired shut and stays for life. 

No more cracking or breaking of the ribs. They even intentionally damaged the nerves so the entire area of the breasts to the arms is numb. Completely numb. Three months after the transplants, I can feel a bit more in my upper right arm but with the continued numbness comes NO PAIN.

By the time the nerves repair themselves, everything has healed. 

Brilliant!

I am down to eleven drugs and expect to begin the Prednisone step-down to 6 mgs by the one-year anniversary during my monthly meeting with a transplant clinic doctor this week. I will also once again have a CT Scan, PFT and Bronchoscopy. Last months tests were all amazing. 

We are in touch with several other transplant people we met at the hotel and the hospital. They are struggling. There are issues including weight and blood sugar and medications. Some only got one lung and there are issues dealing with that mentally. 

Michael recently told me that I was on a heart/lung machine, opened on the table, for over two hours waiting for the lungs. No doctor had to fly them in. No doctor had to drive them across the state. She waited her turn while everything that could be donated was removed. She just had to walk them across the hallway. There was very little time when the lungs were not in a body. That affects many things including a reduced chance of rejection. 

I am convinced that is the major reason I am doing so well. The lungs are simply marvelous, young, no infections, no odd growths and just plain happy. No words can express how extremely grateful I am for them.  

DAILY MONITORING AND MEDICATIONS

I thought I would share the medications involved and the daily monitoring process after lung transplants. Before my transplants, I had no idea about the drugs so I thought I'd share that information. 

We were given a binder filled with tons of information and pages to record data we needed to take three times a day. Michael has been vigilant. Everything has been properly recorded. 

Every morning, the first thing I have to do is weigh myself. Everyone is on insulin after the transplant. My morning blood sugar readings make it clear I am not a diabetic. My problem was losing too much weight. It sounds good but if I get an infection or become ill, I am going to need that weight. The doctors want me right where I am - 5'3" and 143 pounds. Working with the nutritionist and the diabetic clinic, I'm eating things I haven't enjoyed in years. They added a fist-sized portion of complex carbohydrates to my meals. At that amount, it should keep my weight stable but not kick up the blood sugar. So far, so good. I am stable but sometimes the blood sugar is over 200, not good. A challenge for sure. Thirty percent of people going through the lung transplant process become diabetic. Hopefully, I am in the other seventy percent. After checking and recording my blood sugar, if it is over 131, I have to give myself a shot of insulin from a pen injector. 

Next up, blood pressure and heart rate. Each is taken and recorded. Followed by a thermometer for a temperature reading, also recorded.

The monitoring of the blood sugar, blood pressure, heart rate and temperature is before lunch and before dinner, too. Each number is recorded.

Also, I was given a spirometry to blow near my cell phone App that records the FEV1 levels. I blow into it three times a day and on Wednesdays, the system contacts me so I can report the highest level for the week. That information is sent to the transplant clinic.

Medications change constantly. We are usually notified by a phone call after my lab tests on a Monday and/or Thursday mornings. The team seem to tweak the medications each week. Before we go home next week, several of the medications will be removed. 

As of today, here is the list of medication:

TO PREVENT REJECTION:

        Prednisone - 20 mg Breakfast

        Cellcept - 1,000 mg Breakfast and Bedtime

        Prograf - .5 mg Breakfast and 1 mg Bedtime

        Azithromycin - 250 mg Breakfast on Monday, Wednesday, Friday

PREVENT/TREAT INFECTION:

        Bactrim - 1 tab Breakfast on Monday, Wednesday, Friday (prevents PCP)

        Valganciclovir - 450 mg Breakfast and Bedtime (prevents CMV viral infection)

        Posaconazole - 100 mg Breakfast (prevents fungal infection)

        Atrovent - 2 puffs Lunch on Monday, Wednesday, Friday (use before nebulizer)

        Ambisome - 25 mg Lunch on Monday, Wednesday, Friday 

                            (nebulizer prevents fungal infection)

ULCER:

        Omeprazole - 20 mg Breakfast

PREVENTS BONE LOSS:

        Calcium - 1 tab Breakfast, Lunch, Bedtime

        Fosamax - 70 mg Before any food on Saturday morning

        Vitamin D - 2,000 units Breakfast

OTHER:

        Multivitamin - 1 tab Breakfast

        Magnesium - 800 mg Breakfast, lunch Bedtime

        Lasix - 20 mgs Breakfast

        Crestor - 5 mgs Bedtime

        Three eye drops for my glaucoma

        Levothyroxine - 150 mcg Breakfast

        Tylenol - 500 mg as needed for pain

These medications are to be seen as an example. My specific example at this moment in time. I am sure the list will change again before we head home. 

SINCE 2002 - 2021 A LIFE CHANGING DAY

At 12:06AM on Sunday, January 24 my cell phone rang. I kept it beside my bed incase something happened to my mom during the night. Michael popped up on his elbow, I grabbed the phone and looked at the caller ID: Alabama. 

"There are my lungs," I said to him. 

Yup. It was a woman telling me that she had a bilateral non-at risk set of lungs for me. She did one of the kindest thing that I didn't understand until later: She told me to take a shower before heading to the hospital. That was my only shower until two weeks ago. She asked us to text her when we left for the hospital and to text again when we arrived. 

We were out the door within the hour, heads spinning and with Covid rules in place, Michael was not able to be with me during the process. He headed back home to start making phone calls while I was put into a random room while waiting.

I later learned that anything that could be donated was given by the donor. It took time for all the different groups to collect the organs. The donor was very close to the hospital so the lungs were not outside a body for any length of time. Surgery began about eight-hours later and took six hours. We were so surprised to be receiving TWO lungs as people over 65-years old usually only receive one, as it is an easier surgery for recovery. We also felt we hit the jackpot as there was one FANTASTIC surgeon who I was so hoping to get. She did my surgery. 

Gratitude is the word that keeps coming into the conversation. Tears of gratitude. The surgery was rough, I'm not going to lie. I was intubated when they woke me up, went through two long days of hallucinations due to medications so it wasn't for a few days before I remember the morning X-ray tech coming into my ICU room for the morning X-ray. 

I hated having CT Scans and X-rays as they always said, "Take a deep breath and hold it!" Well, I could never do either! But that morning, I took the deep breath and I could have inhaled forever before holding it until the X-ray was done. It was the first time I realized that the new lungs were real. 

Later, during my first spirometry test, the tech printed out the the last test with my old lungs in red and overlapped the current test with my new lungs in blue. What a difference. I am actually going to frame it as a reminder of the gift of life.

After two weeks in the hospital, we were moved into a hotel about 25-minutes away from the hospital for a total of 6-weeks. We have one more week before we can head home. William came down from Seattle to stay at our house, take care of my mom and to cook for us. They have become best friends. 

I must say that the transplant clinic at this hospital is a well oiled machine. Every morning, I take my blood sugar, weigh myself, take my blood pressure and temperature. Two days a week, we are at the hospital at 7AM for labs before breakfast and medications. Usually two other days of the week, we are at the hospital for tests or appointments with the clinic doctors. There is very little downtime. We look forward to Sundays as William joins us for dinner as it really is our only day off from the hospital stuff, the twice a week appointments with the visiting nurse, Occupational Therapist and Physical Therapist. 

Yesterday, we went to the church where Michael and I met playing the Folk Mass fifty-years ago this Summer. I wanted to write in a Remembrance Book near the alter to the donor and the family. From the first realization of the new lungs, I felt they were very young lungs - late teen's or early 20s. I just knew. We had to meet the surgeon last week to fix a small problem with the incision (one arm pit to the other, under the breasts) when she asked how it felt to have new lungs. I told her about knowing they were very young lungs and she confirmed it. 

So much gratitude.