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.

Just Checking In

It started with a friend who was a parent at the school where I got sick. She checked in with me from the very beginning of my disease to now and has helped me through the entire process. Recently, through the horrible times during the Christmas holiday while mom and I were both in separate hospitals, she was there. She was where I went when I needed a moment to step back from all the hourly needs, stresses and uncertainty with mom through hospitalizations, rehab centers and assisted living environments for a quiet lunch and always interesting conversation. My oasis.

She is worried about me and has offered to do everything from helping my mom to delivering anything I need. I am feeling so blessed to have her in my life. Always positive comments. Always totally understands.

During the past two weeks, I have been reduced to tears several times because of either a phone call or email or text. People have been contacting me to offer everything from delivering take-out dinner to just connecting to see if I am still well. Each knocked my feet out from under me. Each was so unexpected and so endearing.

All the wonderful neighbors at our end of the cul-de-sac has offered everything I could ever need. If I need help, I will turn to them. Also, Rick or Natalie either calls or emails every couple of day.

A dear friend since our boys were in kindergarten together phoned to tell me that her son wanted me to know if I needed anything over the hill, he would pick it up and deliver it on his way home from his teaching job.

Barbara checks in often. She and John are well and being careful.

The women who work in my glaucoma doctor's office said they had been thinking about me for a couple of weeks and finally decided to phone to see if I was okay. They really got to me.

A very wonderful woman from a local business phoned as she had been worried about me.

Janet from rehab class text to check in. Her family is well and safe but was worried about me.

The latest one was from my friend in North Carolina. Her daughter, one of my former students who now lives in Dublin, Ireland, phoned her mom and told her to let me know that she was thinking about me and hoped that I was well.

All this outpouring of love and attention is so lovely but I feel a bit unworthy of all the attention. We are following the rules. We are staying home, except for a weekly visit with my mom. Masked, in her room only, I feel fairly safe. Lots of gel in the car and washing hands after I get home makes me feel better. I brought lots of goodies to her today from chocolate to magazines to keep her busy and happy for another week. I know she is lonely.

Thank you if you are someone who is checking in with a friend or relative who is at risk. Thank you for taking care of yourself and them by staying home. We'll get through this but I think we will appreciate the little in life again. Toilet paper, gel, paper towels...

Shelter-In-Place

We are ground zero for fighting this Coronavirus. The five Bay Area counties are under a "shelter-in-place" order. Everyone, not just the elderly, is expected to stay inside their homes except for food shopping or other true necessities. I was told to expect to be pulled over by the police and asked why I was driving. People will be charged with misdemeanors if they are found to be disobeying this order.

This morning, the plan was to pick mom and her aide up at the assisted living place and drive them for a day of cleaning and organizing in her apartment. There were no cars on the road. Oddly, there were many people taking walks but they all were the required six-feet apart from each other.

Mom knew nothing of these new orders. It was my job to break it to her that her hair appointment tomorrow was probably cancelled for a couple of weeks. Mom is all about her hair and she thought it WAS an essential service! She then laughed!

Thankfully, I did not get stopped but I did take a road less traveled between the two houses. Michael will drive them back this afternoon before coming home to me.

After I dropped them off, I went by her beauty salon and, yes, they were closed and will continue to be closed for the next two weeks.

Michael and I will be together in this house until next Monday when I visit mom. It will be nice to spend so much time together. I may even give him a cooking lesson or two!

We are living in such unusual times.

Stay well.

Bulls-eye!

The Coronavirus. It's been an education and I have made some decisions.

As a person who is immunosuppressed, has a serious lung disease and waiting for transplants, I feel the bulls-eye is on my back. The odds are great that if I get this virus, I will not survive it.

It just doesn't seem wise to go to pulmonary rehab with the machines being used by patients everyday of the week. A lot of people. Not a lot of cleaning. Even being in the hospital setting twice a week feels like a dangerous situation at the moment.

My last several bouts of pneumonia were caused by sharing a cold with my mom, which developed into a hospital stay. She is in a small assisted living environment but there are nurses and physical therapists and occupational therapists coming and going for all the residents. These are people who spend they day seeing older people in their homes or facilities.

With no appointments available, Mom wants me to sit with her for hours at the DMV for her driver's license renewal now instead of waiting until August. I don't think she will pass due to her eyesight but she would then need an ID. A room of chairs in close quarters with lots of people is not where I should be. Not now. Michael made it clear that I shouldn't do it but neither should he. He reminded me that he also has to follow all the rules as he doesn't want to bring the virus home to me. We will probably phone my sister to ask her to drive in to handle it.

Michael reminded me that I shouldn't even be in a restaurant or store with mom. How to break this to her? I am driving to her hair appointment tomorrow, he is going to pick her up afterward and take her to lunch. They will have the conversation. He is good at this stuff, clear but not negative. Always with a smile.

Below is my current list of precautions plus I will be wearing a mask every time I leave the house.

Be careful, my friends. This virus is looking for us.

• Postponing Pulmonary Rehab
• Wearing a mask around my mom 
• Staying home as often as possible
• Staying away from children
• No restaurants
• Washing my hands often especially after I arrive home
• Carrying hand sanitizer in the cup holder in my car and using it EVERY TIME I get into the car
• Masking at doctor appointments
• Staying away from ALL groups of people or anywhere people gather 

Just a Bit of Blood, Please

In the package from my transplant hospital was another box, instruction sheet, a letter to me and a very large FedEx envelope.

What the heck?

The letter included instructions to take everything to my local hospital for a blood draw and drop it off at a FedEx store to be received before March 14th or I would be off the transplant list for a month.

What?

Apparently, while on the transplant list, a similar package will arrive every month and the exercise is to be repeated. If a set of lungs are a possible fit for me, they will use this blood for some testing.

Makes sense.

The process was interesting. The person drawing my blood really had to read the detailed instructions again and again to make sure she did everything as demanded. She opened the smaller cardboard box, which had a large screw-top vial in it settled into a cardboard mold. No movement allowed.

After reading everything and drawing the one vial of blood, she wrote the date and time on the enclosed label then stuck it onto the vial and re-wrapped a piece of bubble wrap around it. Then, she opened the large vial, removed more wrappers plus one that enclosed the blood vial in a small envelope then wrapped the excess around it. This was slipped into the large vial which was returned to the cardboard mold, the box was closed and slipped into the large FedEx bag.

It took a lot of time as we both wanted to do everything that was requested. Now I know both the tiny details and the process so I can help next month's draw.

A Side Note

Just a comment: I received a lovely message from a reader who expressed how she wished she could find a doctor like my Dr. K. It is not the first time people have brought this to my attention. A woman I met on this blog who had a husband with HP said the same thing to me. In the end, they never found one but she offered insight that I had missed.

Dr. K.'s not a specialist in Interstitial Lung Diseases like mine but a highly respected one for the Cystic Fibrosis community. Her focus with that group of patients was to avoid infections. She was very clear with me that I was to avoid crowds of people so no movies, no airplanes, no trains, no cruise ships, no orchestra concerts, no opera, no plays, no church, no anywhere where people gather. I remember sitting in one of the support groups and everyone was sharing where they were flying for summer vacations. Everyone was flying. Everyone except me.

In the ILD Support Group, the one other person with HP used to fly to Hawaii a couple of times a year. He did not understand why Dr. K. would not allow me to fly. After one of his flights to Hawaii, his lungs collapsed and he eventually received new lungs. We met just two months post-transplant and he said that he so wished he had listened to my Dr. K. instead of his doctors. Sadly, he died before his first anniversary of the transplants.

Dr. K. also was ahead of every curve. Acid reflux? No, I said. Yes, she said. Tested. Yup! Big time! At every turn she has been right. She has also been very proactive with my care.

The insight that I had missed was that Dr. K. was an expert treating patients with CF and not ILDs. She constantly watches my immune system, treats infections quickly and tests. Lots of tests. It's sad, all my friends who had an ILD or Obstructive lung diseases in my rehab class are all dead and here I am, alive and well enough for transplants sixteen-years after she took over my case.

I believe I would be long dead without the trifecta of Dr. K. leading my care, excellent medications and pulmonary rehab.

Keep searching for your Dr. K.

FINALLY!

My transplant coordinator phoned yesterday afternoon to tell me I was back on the list. She had placed me on a "pause" due to the WC Medicare Set-Aside money still available. A lot of money. The financial head of the transplant clinic arranged with the hospital to accept a check for the full amount at the time of my admission for the transplants. Michael will then contact Medicare to let them know the account is closed. No more money. Yesterday, I moved all of the money from a money market account into the checking account so it is ready.

The list of things to do keeps growing: list of medications and dosages, front closing sports bras, reminder of all the things to throw into my luggage at the last minute like phone cords...you get the idea.

Yesterday's medical test was an echocardiogram and lots of fun with the new graduate student and the well-seasoned tech. All looked great. Next Tuesday, I am having blood tests to my immune system. Apparently, some post-transplant people have problems so they want to be proactive. What they didn't research in my files is that Dr. K. has already check this out for me. Of course. She is brilliant and always ahead of everyone. My immune system was amazingly healthy for being compromised since 2005 and didn't need any help.

I did need to remind Michael to not put his phone on mute or not answer a phone call or leave his phone in his car or...though we really don't expect it to happen so quickly but one never knows.

Listed then Paused

It has been a wild ride. We met with the surgeon last Thursday who glances through my file, said I was extremely fit, had a great heart and signed off as ready for transplants. Easy.

Then, my Transplant Coordinator came into the room. She wanted one more blood test to check my antibodies, which would take a couple of days to process. Again. I have none. Zero. Zip. That is the good news.

So we waited through the weekend and on Tuesday, she phoned with more questions. After plugging all the information about tests and activities of daily living and everything else into the special program, it spit out my listing number.

Loosely:
A number 80-90 is probably someone on a ventilator in a hospital.
A number 60-70 is probably someone in the hospital waiting for transplants.
A number 40-50 is probably someone pretty sick waiting at home.

My number was 35.5. Very low. I won't be transplanted soon! As I deplete, activities of daily living change, numbers get worse, this number will get higher. Michael thinks I will get the call for transplants in June. My guess is September. It could be next year!

Today, the financial person phoned. I still have money in my Medicare Set-Aside and Medicare won't pick up the check for new lungs while this is still available.

I am on hold again. Off the transplant list until we can figure this out.

After I drove home from my doctor appointment, I phoned Medicare. They explained that the WC claim is closed and the Medicare Set-Aside is in my name. It is my money. It is a lot of money. Medicare never rejected anything that was to be paid by this account so it was seldom used. The Medicare woman was fantastic. She told me to write a check for the whole amount to my university hospital and hand it to the financial person in the transplant clinic. Then, FAX Medicare to show that there is no more in that account and they will take over paying for the transplants.

I immediately phoned the financial woman but she hasn't returned my call. I plan to meet her Wednesday after I have an echo cardiogram in the transplant clinic and hand over the very large check.

It just can't be this easy. I am worried something will go wrong and it won't be accepted. Then what? So for now, I am not listed.

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.