LUNG UNFOLDING

    Home Spirometer 

The testing for my third-year anniversary of the lung transplants went really well. It began with a CT Scan at 7:30AM where we met a 4-week transplant person in the waiting room. She had Covid then got RSV, which totally destroyed her lungs. Imagine. What a shock.

We chatted waiting for our scan while Michael was talking with her husband in the waiting room. They were a really wonderful, supportive couple. She asked me if I had one piece of advice for her. I did.

From the CT Scan we headed to the Lab for the spirometry test (lung capacity). Something that has bothered me was my spirometry scores. I’m around 2.15 and was happy until I ran into women and men who were in the 4-6 range. After transplants, the lungs continue to unfold up to two years. After that, no more expansion is possible. 

Since I had the collapsed L2 before the transplants, I no longer had my regular gym routine and had difficulty just walking with a walker/cane. I didn’t go back to the gym until over a year after the transplants, but at a much lower level of exercise. Through the years, I wondered if my lungs had fully expanded.

From the Lab, we walked to the transplant clinic and met with one of my favorite doctors. She asked me to do my home spirometer in front of her and said I had good form. I told her about being worried about my low score. Pulling up the CT, she showed me that my lungs were fully expanded.

What a huge relief. 

Telling her that I was concerned that others had such higher scores, she said I was a tiny woman with small lungs. Others were much larger people with larger lungs and capacity. I started to laugh because I still don’t think of myself as a “tiny” person! If you have read the previous blogs, I had to lose well over 100-pounds to be approved for the transplants. I also asked it they had to shave the bottom of the lungs to fit into my body, she checked and said no. 

Two mysteries solved in one appointment! Lungs fully expanded. Lungs fit into my chest cavity. 

So, what piece of advice did I give to the woman while we were waiting for our CT Scans? Exercise to make sure the lungs are fully expanded before the 2-year deadline. 

MAINTENANCE OF LUNGS - YEAR 3

The work to maintain the transplants really changed after two years. The doctors loosened their reins, the RN was still available for any questions or to address any issues and I really felt I had the skills to handle the responsibility of the daily maintenance.

In February 2023, I had my final scheduled bronchoscopy along with the CT scan, spirometry and visit with a transplant clinic doctor. Here was the schedule for the year:

May 2023 - Zoom appointment with clinic doctor.

August 2023 - CT scan, spirometry and in-person visit with a clinic doctor.

November 2023 - Zoom appointment with clinic doctor.

February 2024 - CT scan, spirometry and in-person visit with a clinic doctor.

Last year, my hematologist and liver doctors released me from their care. That was a good thing. 

Being on prednisone since 2005, my bones are very brittle. Every time I fell, I broke a bone. Finally, needing time to completely heal, not falling for 6-months and off of Fosamax for three months, I qualified for Evenity in January 2024. 

Evenity. It is a bone-building drug that will not interfere with the anti-rejection drugs. My first injections were at the infusion clinic and the second set of injections will continue next week.  It consists of two injections in the abdomen once per month for 12 months. There has been no side effects, so far, and my fingers are crossed that this drug will really improve my bones.

The other important work of maintaining my lungs is consistent exercise. Working out has always been important to me and it really improved my numbers post-transplant. 

I love cooking and I swear Michael is still married to me because I am a good cook! Healthful food and being aware of what we are eating is important to us. With Michael’s issues, saving that for future blog, the doctor recommended he eat a Mediterranean diet. I will give detailed information about that as it has opened up a new world for us. 

Lots happening. More to come.

ROUGH DAY

Dear Reader, you may remember when I wrote about the pre-transplant doctor telling me the importance of the patient having enough grit to get through the process. He remarked that I had the most grit of anyone he had ever met and I replied that he had never met my mother! It is true. At 95-years old, she is one strong woman who continues teaching all of the family life lessons. But yesterday, we finally faced the necessity of her entering into a Hospice program. 

It was a rough day. A sad day.

Mom had a series of strokes six-weeks after I returned home after the transplants in May of 2021 and endured Covid in January of 2022. With Covid, the hospital doctors approved her return to the facility to die but she fought her way back to life. With extremely limited vision, she was walking with the PT and still engaged in life. 

But, it suddenly changed.

Mom began with delusions and obsessions and it grew to her being non-responsive and sleeping 24/7. As a woman who always had her makeup and hair in place everyday, she recently was no longer doing either. Earlier this week, we were have a conversation and I watched as her eyes began to glaze over then closed. She fell asleep. She had made a dramatic downward change since Thanksgiving. I was concerned that my timing may be off but the hospice RN told me with all the changes we noticed, we made a good decision to begin hospice at this time.

Last night, we spent the evening with old friends and I was able to talk about it. They were so supportive and one of them had a similar experience. 

My goal? I so wish to make her as comfortable as possible, that she continues to have no pain and that she passes peacefully.

I had amazing parents. Truly amazing. In my heart, I know they will be together again. 

CHANGES IN THE PROCESS

 In early November 2023, a friend had lung transplants. I met her through this blog and visited her home several times during our many May road trips. We talked a lot before and after her surgery, I tried to share everything I could think of that might help her through the process and recovery. After the surgery, we shared the profound feeling of gratitude for our new lungs.

What shocked me was how the process had changed in just three years since my transplants. The biggest change was when she was finally put on the transplant list, she was guaranteed a transplant in thirty days! Thirty days! I was waiting and waiting on the list for around 168 days, I think. 

Also, when I was transplanted, it was required as standard practice to be within a year of death. It was a long recovery to regain my health after being so ill. She, on the other hand, had the surgery, left the hospital in a week, went to a rehab center connected to the hospital and began pulmonary rehab. Within three weeks of her surgery, she was doing 15-minutes on the treadmill, bike and another piece of apparatus. Last week, she just finished her required 90 day stint of post-transplant rehab.

Because she was not as weak going into the surgery, her recovery was much faster. Marvelous. I am looking forward to learning any other new procedures and processes.

I also want to offer to answer any questions you may have, dear reader. I promise to answer honestly, no matter how difficult.

Anniversary #3 and Counting!

 

Well, it has been awhile since we last connected. I have so much to share and am planning to post on a regular basis again.

On January 24, 2024, Michael and I celebrated the 3-year anniversary of my lung transplants. It was a day filled with memories, shared breakfast with friends and a lovely, solitary Italian lunch together overlooking the harbor. 

A week earlier, the owner of a local company knew that I had baked baklava for years as I also brought them some before sending it to my brother for his birthdays. She gave me a recipe from Instagram for Baklava Cheesecake. Yes, you read that right. For my anniversary, I made it the day before and delivered a huge hunk of it to the company. She was so surprised and was going to immediately share it with the employees. Our neighbor and another couple also received big hunks so we just had two pieces each over two days. It was delicious and surprisingly not very sweet but rich with butter and cheesecake!

I do want to share so many things: weight, diet, Michael’s health issue and new diet, a friend’s recent transplants and the advancement in the process, speeches to nursing students, current relationship with the transplant clinic, learning to reach out, medications, limping, gardening, organizing, my 95-year old mother’s health and so much more.

On this quiet Saturday, Michael made coffee, served me yogurt before making a simple breakfast. This man makes breakfast every morning, still does all the food shopping as we are aware of crowds and I try to avoid them whenever possible. I’ll do the laundry while preparing our tax information for processing, which should take 4-5 hours. After taxes, I will make dinner as we rarely eat out. 

I am feeling fantastic, lowest weight as an adult, saturation rates have been 99-100%, low blood pressure, back to the gym, eating fantastic home cooked meals, reaching out to friends and continuing to being grateful for everyday.  

 

2.5 years!

Dear Reader, 

All is going well. I just had my 2-1/2 year post-transplant meeting with the head doctor of the Transplant Clinic. He reviewed all of my medications, labs and tests and declared that he was not going to change a thing! He also made me very happy by saying I was taking good care of my lungs and myself in general. I replied that I had promised my donor I would do exactly that. 

I did return to the gym just last week after fracturing my right patella (my driving leg!!) at my mom's facility on May 3. That was a challenge! It was very painful and I was unable to put any weight on it for 10 days but Michael was marvelous, as always. He wheeled me, sitting on my walker, from my camp on the living couch to the bathroom. We even had midnight phone calls when needing a bathroom visit. After the ten days, I was still very unstable but became more and more independent. Michael mentioned one day that he missed our midnight phone calls! He was recently diagnosed with prostate cancer and, thankfully, he is on Active Surveillance. It is very small, appears to be non-aggressive so he will be closely monitored. We did learn that all men get this cancer, though most don't know it. They usually die from something else.

The nice news is that we are celebrating our 50th Anniversary! We didn't think I would be alive and here I am! Reservations are made for a week in Palm Desert (fancy area next to Palm Springs) thanks to our friends Sue and Jim. 

William is doing great, he was awarded another Gold Record from a group he toured with a couple years ago. It was a surprise! He also signed a huge contract for an album cycle beginning next year. But, the big news is he met the love of his life. Finally. We are so happy for them.

My mom turns 95-years old next month. She is one tough cookie! Grit! Guess where I got mine? She is blind in one eye and really can't see much with the other. Her health has been up and down and she just hates not having her independence. The medications for dementia really help. 

That's my update. I hope you are doing well, Dear Reader. 

YEAR TWO

Dear Reader,

January 24th was the second anniversary of my double lung transplants. It has been a very busy year, lots of medication changes, doctor appointments, medicals test but, now it is different. I am back! I have really turned the corner and am feeling like myself for the first time since 2005.

My energy level is finally great. No longer do I need to take a break while cooking or doing dishes or getting dressed. I am also back in the gym 3-4 days a week and my weight went from 154 pre-transplant to 145 post-transplant. When the doctors removed most of the prednisone after almost 17-years, my face lost its bloated look and my body just shed pounds. I am now on 6mg for life and my weight has settled in at 133-pounds.

If you read back in this blog to the time I lost weight through the Weight Management Group at the hospital so I could hit the 25-30 BMI required for lung transplants, you won't believe I am stable at this weight. It's been about 15-years since I lost over 100 pounds from my highest. 

Without Michael, I could not have made it through the first 6-months. It was overwhelming and he was my cheerleader and had my back. We will be celebrating our 50th Anniversary this September, which was just a dream before the transplants as I didn't expect to be alive. You can read about our hilarious Honeymoon from Hell also in this blog. 

I finally wrote a letter to my donor's family, who should have received it on the actual anniversary. Gratitude is the only word that can come close to what I feel in my heart and soul. 

Thank you, Dear Reader, for your comments and support all these years. I can only wish you all good health as you continue on your journey.

Love to you all.

All is Well

I just read comments from readers and wanted to thank you for wishing me well. It has been a challenging year and a lot of work but I made a promise to my donor that I would work hard to keep our lungs healthy. 

It was discovered during a bronchoscopy that I was born with small airways. The "gunk" from my lungs was clogging my small airways. There was a feeling of pressure where the new lungs were attached. I felt like coughing. To relieve the problem, I have been using a nebulizer treatment of 3.5% Sodium Chloride every morning and evening. 

Also, during a bronchoscopy in April, it was discovered that I had pseudomonas growing in my lungs. Dangerous. After a run of antibiotics, doctors were worried that some of it remained as my white blood count was low. So, they began a run of nebulizer Tobramycin - one month on/one month off for three cycles. I was on my last cycle on when I mentioned to the doctor that I had developed ringing in my ears. He immediately stopped the medication and sent me to an audiologist last week. Yup, I have a moderate hearing loss in one ear and a much low loss in the other. Hearing aids are being fitted next week.

But, I am alive. Everything is less important and I can deal with it.

Physical Therapy is continuing to help with the collapsed L4 - fifteen-years of prednisone!- and I am transitioning off of the cane. Exciting. I will be back walking along the beach soon. I am also going to join the other hospital gym I went to for years as they have closed my beloved pulmonary rehab class. 

The best news is I received a message from my RN who reported that the entire team reviewed my first year tests and reported, "You have taken excellent care of your lungs. Congratulations!" They didn't find anything. No Cytomegalovirus (I got from the donor), no yeast or fungal elements, no evidence of rejection, no influenzas, RSV, Paraninfluenza, Rhinovirus, Metapneimonovirus, Adenovirus and my spirometry was excellent.

So, my day begins with weighing myself, taking my temperature, my blood pressure and my blood sugar. After a bit of Michael-made coffee and half a container of Oikos yogurt, I read my favorite sites on the computer while I wait for him to made breakfast. My favorite time of day. After breakfast, I use my inhaler, nebulize the 3.5% solution to clear my airways, cough and try to get everything up then get dressed for the day. When I was using the Tobramycin, the total time on the nebulizer was around 40-minutes. Often I had to get up early for blood tests and doctor's appointments so that time had to be built into the morning routine. Many morning would begin as early as 4:30/5:00. 

At lunch, I again take my blood sugar. My doctors have reduced my prednisone to 10mgs and all agree that I did not get diabetes on the table, as 25-30% of transplanted people do. When it is reduced to 6mgs, I fully expect to no longer need to check my blood sugar. My numbers are fantastic.

Before dinner, I do my nebulizer treatment, check my temperature, blood pressure and blood sugar once again. I always cook dinner and have added carbs to our diet. I am loving blueberries and small oranges. 

As you may remember, I lost a lot of weight to get to the 25-30% BMI require to even be considered for lung transplants. My dietitian told me I would gain weight afterward but not to worry as we would work together to get it off. 

Well, the weirdest thing happened. I think my body was so used to the large dosages of prednisone that I didn't gain weight. I am still just over 10-pounds lighter than pre-surgery. If I suddenly become ill, I have 10-pounds that would not hurt me if I lost that much. Any more, would be bad. It has been many years since I was in size 8. Feels great. And, I'm eating but being very careful of portion sizes and making sure I have good protein at every meal. I have been a stable weight now for over a year.

Our son just finished a month-long tour, stayed home for a couple of days and is now driving down from Seattle for a visit. I can't wait to hear how the concerts went and I always ask about any outstanding food he found. Foodie. We will surprise my mom as he just told us today he was driving down. I'm also planning what I should cook for him. Coconut Salmon with Napa Cabbage? Tri-Tip with Sweet Potatoes? Kilbasa with Pasta? Fresh Turkey? That's what's in the house. I'll let him decide. 

If you have any specific questions, I would be happy to try to answer them. 

Thank you again for your support!

First Anniversary

 Well, dear readers, today is the first anniversary of my lung transplants. It has been one heck of a year. I am feeling fantastic and remembering that I was so weak after the surgery that I could not roll over onto my side. Today, I can do almost everything.

A year ago, I knew I was not going to see another Christmas. It so was hard to ever decorate the tree. Taking it down was even more difficult. I spent a lot of time on the couch. This Christmas was magical. I over decorated!

Today. I never stop. I do everything I want and need to do. Making sure that we eat well having the food that I need to heal and build muscles, I cook dinner every night and even do the dishes. Michael still makes my coffee each morning and has added making breakfast. He still makes the bed everyday and even knows how to load the dishwasher. He has come a long way! 

Still needing a cane, I am close to being able to walk without it. Physical Therapy still happens every week and I work out everyday. It is my goal to walk the coastal trail I used to walk so easily. 

My lungs are healthy and good. I had low white blood cell counts and low platelets but that seems to be changing. On January 1, I got Covid. With luck, I was given the new Pfizer drug Paxlovid on the same day. After two days of a low fever, I awoke the third day feeling like my old self. I even tried to get up and pick up a few things. Michael pleaded with me to stay isolated for the 10 days and just cool my jets. I recovered with no issues.

With the Paxlovid, they remove my anti-rejection drug. YIKES! We had to drive to the city for blood tests every two to three days to watch the levels fall slowly. Apparently, the hard part is when the reintroduction of the Prograf happens too quickly, it can damage the kidneys and liver. What I didn't know was that I was the first of the lung transplant patients to receive this drug and so very grateful. Directing this experiment was the head pharmacist whom I later spoke with on the phone.

She chose me because my kidneys and liver were testing well and that I had no other issues other than the transplants. She said when she pulled the Prograf off of me, it was the hardest decision she made in her twenty-years. Lots and lots of stress. It was so successful that she is publishing a paper regarding my specific case and was already getting calls from other transplant clinic around the country for more information prior to the publication. 

Michael ended up getting Covid but is now testing negative. The very bad news is that my 93-year old mom also got Covid and was in a hospital from January 3 until she was sent back to her assisted living facility on January 20. She was in total isolation at the hospital and is now in hospice. My sister will be visiting her tomorrow and we will meet afterwards. It is very sad and very difficult.

So, I made it to the first year. I am so grateful to the donor and the family for their very generous gift of life. 

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.

Merry Christmas!

Merry Christmas! I am sure ours was similar to everyone's, a family bubble with no other people. Wednesday, William drove from Seattle to our home in one day - a record eleven hours - and mom also joined us on Christmas Day. It was rainy and cool but perfect to feel cozy in the house.

Unfortunately, the night before Christmas, I aspirated vomit into my lungs. After lots of choking and vomiting, I still could not get them clear. Sleep was impossible. Christmas was going to be difficult.William put on his imaginary Super Man cape and came to the rescue. That guy can cook. He and Michael put together lunch/appetizers, handed out the presents, entertained everyone then made a killer dinner. All this was going to be my job! I was feeling awful, still vomiting, unable to eat and not able to do much. By 2:00, I was able to eat some bread and it stayed down. 

Dinner of a boneless rib-eye roast, amazing potatoes that were boiled then baked to brown, Cole slaw and cranberries was delicious. I was able to eat a bit of meat and a couple of chunks of potatoes. William made Martha Stewart's Double-Chocolate Chess Pie. All I can say is OMG! My mom is a chocolate hound and she LOVED it. Very chocolaty. 

I fell into bed at 6PM and slept until 7AM, took two naps in the morning then a record breaking 2.5-hour nap in the afternoon. I am beginning to feel human again. I never had a fever or head ache or loss of taste or smell. This clearly was connected to the aspiration.

Did I mention that William and Michael also totally cleaned the kitchen, which was spotless when I walked into it this morning. It was nothing but pure magic. 

We are still waiting for the phone call regarding my lungs. Every time the phone rings, we both jump. 

I so wish everyone happy holidays and a New Year's wish of ending this virus. My best to you on your journey. 

LISTED

 The call came at approximately 6:00PM last night. My transplant coordinator phoned to announce the decision of the entire transplant team as to whether I was qualified to be on the lung transplant list or not. YES! Even with the cane and my limp, they listed me.

A side mention: Something has kicked in after three months of physical therapy. I am still needing a cane but I have made great strides and hope to be walking on my own soon. Something finally kicked in. Audrey was watching me walk when she suddenly rubbed her arms. Goosebumps? She said she never has seen what I was doing. Usually people who don't improve for three months just give up. I kept pressing and pushing and it was beginning to pay off. She was just stunned how quickly I was finally progressing. 

The lung transplant coordinator talked to me about a single lung transplant and an "at risk" lung. I really want two lungs but, being over 65-years old, I will probably have only one. The surgery is simpler and the recovery a bit easier. She said that the long-term prognosis is the same as patients with two transplanted lungs. The other is a choice I will have to make. The donor might have been recently in prison or a drug addict or...you get it. I was horrified when first heard but someone in the rehab class had an "at risk" transplant, there was an infection, which was treated with antibiotics and that was all. It's been over three years since her transplant.

I would accept a single lung transplant and an "at risk" lung.

The testing begins. Later this week, I will have some blood tests, x-ray, echocardiogram and a CT Scan. Next week, it will be full pulmonary function tests, 6-minute walk test and blood gases. Can you image the difference in my last 6-minute walk test - where I walked the fastest ever - compared to walking with a cane? The difference is going to make my lung allocation number soar. That's a good thing. Tomorrow, I am going to have some blood drawn locally and shipped via FedEx for the doctors to have on hand to compare with a possible lung. They will be looking for antibodies. If I have any, they must match. The test last month revealed no antibodies at all. That makes it all a bit easier. 

Time line? With needing 5 liters of oxygen, she said I qualified for lung transplants as long as everything else is good. She suspects that I will be transplanted within six months. We will see. 

The Good. The Bad. the Ugly.

 Thanks for the nudge, Kathi. Yes, it is time for an update.

The Good: William arrived on Sept 2 and stayed for two weeks. For almost a week, he and I were alone as Michael flew to Austin to drive the rental van filled with British Don's stuff back to California, about 90 minutes north of us. I had cooked several meals before Michael left, William made Michael's birthday dinner of Maryland Crab with Crab Soup and Tater Tots. He even made the German Chocolate Cake. Ron next door and my mom received a nice big piece, too. William is marvelous with my mom and she adores him. I ended up cooking several meals but William did most of the cooking. He even made pizza with homemade dough and tomato sauce, Italian Sausage, thinly sliced fennel and finished with fresh Basil just before we ate it. Delicious! We looked through old family albums and lots of photos from his childhood. He took several albums home with him. He also took my Grandmother's Pre-WWII Dresden Tea set, Michael's phonograph along with my dad's albums - probably around 75 of them. It was a really nice two weeks. 

The Bad: The fires burning miles north of us drifted in on the winds and stayed for over a week. We couldn't see across the street. I had to go into it for physical therapy and doctor appointments for mom but I wore a very heavy mask. Still, it was difficult to breathe at times. Recently, I have been coughing really hard and needing my inhaler more than usual. I fear that I am having a downturn of the disease and going to finally need the transplants. The only problem is that I still limp or need a cane so I do not qualify for transplants until I can walk a certain distance within a certain amount of time. If I need transplants now, I will not get them. Scary.

The Ugly: The smoke. For one day during the worst of the smoke, the smoke was trapped above the atmospheric levels and blocked all light. During the day, there was no sun, only darkness. When it was a bit lighter, the sun was a deep red. Maroon. At 2:30, I felt like we should get in our pajamas and hop into bed. The word everyone used was Creepy. I took the photo below but it really doesn't do it justice. The filters on the iPhone cleaned it up and made it brighter. 

WAKE UP, LITTLE MUSCLES!

I'm still off the transplant list but I have an appointment to be assessed on August 20th. On that day, I will perform a six-minute walk test, pulmonary function tests, a CT scan and will meet with a transplant doctor to determine if I am ready to be listed. Again.

All in all, I am not feeling positive about it. Physical therapy is helping and these are probably the best therapists I have ever experienced but, as they keep telling me, it takes time to grow muscles. My collapsed L4 is not allowing the nerves to feed the muscles. My left hip is the problem as my right leg is very weak. I can and will put in the work but I can't control the length of time it will take to get up from the hospital bed and walk correctly post-transplant.

Two therapists are involved in my care, so far. After meeting with both, we have a plan. I will work with them for another two weeks then we will assess whether I will be able to walk without a limp, cane or walker by the August 20 appointment. If it appears that I am not ready to take the tests, I will reschedule them for six weeks later. During the time before the tests, I will meet with the physical therapists for two weeks then stay home and work for two weeks then back to them to make another assessment to the next level. A two-week cycle. This plan will also allow us to work more strategically within the Medicare limits of twenty PT treatments per year. 

Michael and I are well and keeping busy. William is enjoying his time at home, a rare event. He expects no concerts to resume until 2022. My mom is home from assisted living and doing way too much! 

I hope you, dear Reader, are safe and being careful out in the world. Crazy times.

Off the Transplant List Again

I'm off the lung transplant list again. So much has happened since my last update so I will just share the highlights:

I was feeling, breathing and moving great until I picked up something too heavy and hurt my back. Fifteen years of prednisone has done some damage to my bones. X-ray revealed a collapsed L4 and a whole lot of other damage. I was in severe pain. It was also discovered that I have been working out in rehab and living with another fracture in my back for over a year. That explains all the stiffness and limp I thought was a hip issue. So, there were three places where the discs pushed into my spinal cord, which caused the pain. Oddly, I never had back pain. The severe pain was sciatica down my right leg. Even with all the meds and patches, the pain would bring me to tears and I am not one who cries often.

My primary sent me to a local doctor who is outrageously wonderful and also a musician!! Love when that happens. Besides playing violin and guitar, he asked me about the ukulele last week. Did I think he could learn to play it? My response, "Ten minutes!" He bought it last weekend, followed YouTube videos and was entertaining his young children within minutes.

He does everything from surgery to X-rays to testing nerves. I see him twice a week for acupuncture with little electric charges attached to the needles. Last week, I mentioned that I was beginning to feel the sciatica rearing its ugly head. No problem. He placed two pins in my leg and I have not had any pain since then.

He also is trained in the process of taking my blood, spinning it in a centrifuge, then collecting the platelets to be shot into the problems in my back. That is down the road.

But first, a month of rehab, which will begin in about two weeks.

He offered 5 mg Hydrocodone, which got me through the worst of the pain along with back patches. I have been off the drug for over two weeks and began driving again yesterday. I am still using a walker but have begun walking in some stores or short walks out in the world. Hopefully, the walker will be in my rear view mirror in a couple of weeks.

Michael. Sweet Michael. He would not let me lift a finger. My job was to heal. He learned to make the bed, load and turn on the dishwasher, cook meals, clean the kitchen while he continues to do the laundry and all the gardening. He never makes me feel as if I am a burden. He did mention the other day that when I am better, he really doesn't want to make the bed or run the dishwasher. I promised to return to those jobs as soon as possible!

Mom:  She gave her 30-day notice at the assisted living place on June 1 and is moving home. Lots of drama and lots of concern.

TESTED

It has been interesting.

I had a swollen left foot over a week ago and was directed to the local hospital for a blot clot scan. So many people have been sitting at home during this Coronavirus fun that blood clots are a real problem. Nope. Wasn't a clot. Next, I met with an infamous foot doctor in town who not only worked on my foot, he repeatedly answered the office phone and treated other patients all at the same time. But, he was crazy like a fox. At the end of the visit (he walked me out to my car), he told me there was nothing wrong with my foot then asked when I had bought my compression hose. When I replied 2005, he told me to buy a new pair and my foot will be fine.

I did and it is.

For a few days, life was good as I continued to do the Boot Camp from a pulmonary rehab place in New York City and was feeling pretty good.

Last Wednesday, I had a headache that stretched from ear to ear. I NEVER have headaches. Headaches...symptom of the Coronavirus. Wednesday night, I was awakened with a severe headache plus a nice run of diarrhea. Diarrhea...symptom of the Coronavirus. Fatigued? Yes. Fever? No.

I phoned my primary doctor Thursday morning, who met with me for a video appointment. She said that with my pulmonary issues, it would be best to be tested just to be safe. We met in the parking lot behind the clinic, she came out in full protection garb then took my vitals before swabbing my nose and throat.

Then, we waited.

Thursday afternoon, the results were negative for other flus. Great.

We continued to wait.

Friday afternoon, I finally got the results for the Coronavirus. Not detected.

Sharing the news with my transplant coordinator, she wants me to phone her again on Monday to let her know how I am feeling.

It is going to be a long haul before I will be able to relax out in the world. It is so dangerous for those of us with severe lung diseases. I also know this will probably not be the only time I will be tested.