TESTING, TESTING, TESTING

After meeting with the lung transplant team, we decided to move ahead with the testing necessary to be listed for transplants. My numbers recovered a bit from the downturn in April but everyone agreed that one good pneumonia this winter would probably push me into the transplant range.

I will be ready.

August 8 - Urologist
A very smart doctor met with me to investigate my endless UTI problems (turned out to be untreatable as the symptom-free ones are typical in older women), which precluded me from saving 24 hours of urine for the Lung Transplant Clinic's testing on August 9. I called the coordinator and we figured it all out.

August 9 - Testing for Lung Transplants and a Heart Catheterization 
It began by leaving the house at 5:45 to make my way into the city for blood tests and to turn in my stool sample kit. Early. No coffee or food as I was a having a test later in the morning, which needed to be completed on an empty stomach.
   
     8:00 - Quantitative Lung Ventilation Perfusion Scan
Ha! Say that 10 times! A lovely technician gave me a shot of radiation from a lead syringe then photos were taken for five minutes as it moved through my lungs.

     9:00 - New Patient Consultation
I was greeted like an old friend to the Heart and Vascular Center as they use much of the same staff as the Lung Transplant Clinic. After an EKG, a doctor whom I had seen hanging around the hospital came very gently into the room. He apologized as he had wrenched his back. I made a joke and we laughed. A very nice cardiologist. He was answering questions and preparing me for the Cardio Cath, which was to take place the following week. He said it appeared that my heart was good as all the functions were normal. Good news. We had another laugh when he said he hoped never to see me again!

10:30 - Abdominal Ultrasound
The technician and I really enjoyed the experience, had a great conversation mostly about kids and where she grew up in a large family. She was also excellent and I was finished within 25-minutes. I read the results a few days later.

COFFEE
Delicious. Now I had to wait for the 1:00 appointment. I hung out, chatted with people, watch as the world walked by then headed to lunch.

1:00 - Carotid Artery Ultrasound
I showed up early and she was available. Love that. It was a well-seasoned technician. I have been well trained to never ask about the results of any tests from the techs. After she was done, I said, "It sounded good but what do I know?" She replied, "You have no problem. It's clear." That felt great and it was confirmed a few days later.

I crawled home where Michael and British Don were waiting for me. We had an early dinner and I fell into bed at 7:00. Done.

August 11 - 24-Hour Urine Collection
That was fun. AND it had to be refrigerated.

August 12 - Drive Back to the City
It was another early morning drive to the lab to give them my sample and to have my creatine level tested.

August 13 - Left and Right Heart Catheterization
Nervous. Again with no food or coffee, we had to check into the hospital at a very early 7AM then we were directed up a few floors to the pre-op for the procedure. Wonderful people there. Great nurses, Residents, Doctors. I had exceptional care and these people were running a well-oiled machine. The nurse opened a line into my wrist and elbow for the equipment to go up and into my arteries and heart. I had been recently diagnosed with the beginning stage of pulmonary hypertension just a month earlier and this test would reveal the exact level of the disease. I had felt very blessed not to have this sooner, though I have been checked for it every two years.

We had a problem finding the right vein in the elbow and she felt it was not going to be good enough. She was right. She prepared me for the entire procedure to be accessed at my groin, something rarely done these days. Shaving! When they were ready, I walked into this amazing room with a table under a machine surrounded by monitors. "So this is where the magic happens," I said. All six people in the room laughed!

The surgeon arrived and we chatted a bit. Everyone seemed relaxed and happy, just the way I wanted it. It began. The two surgeons began and ran into a problem not only with the elbow but also with the wrist. Apparently, I have very small veins and arteries. I could hear them considering the groin and said, "Plan B, Gentlemen?" They said they had tried as it was a much easier recovery but they just couldn't get it done so into the groin we went. I was beginning to feel things so they gave me 5 mg of fentanyl. HAPPY. They were so impressed that I didn't need the other two pain drugs.

Finally, done and the surgeon said, "No pulmonary hypertension and no blockages!"

Music to my ears. We can move forward with the transplant process.

Everyone left except two people. They removed the tools from my groin and all of the sudden I hear her scream: HEMATOMA!!! People came running. She asked one to bring her a stool so she could get her full weight on my groin. She was trying to press it to break it up and spread it around. Finally, a guy took her place as she had worked really hard for some time. It appeared as a big bruise. It currently is from the left pubic bone to the right hip. It is massive but no pain as they broke it up. The down side is that I had to stay in the hospital for 5 hours at a 30 degree angle to insure the bleeding stopped.

The sweetest thing happened as I was being wheeled back to the recovery room. The nurses told me I was the nicest patient they have ever had. My nurse asked what I had done before I got sick plus I mentioned I was a classical musician. I was very touched. As Michael and I were walking out of the upstairs recovery area five hours later, we were hugged by that recovery nurse and another nurse from the operating room, who we ran into on our way to the elevator. Makes you feel good. Makes you feel like you have made a connection, human-to-human.

August 14 - Annual Dermatology Inspection
It was time for the full body inspection. Let the burning begin! She burned off several things bothering me but she also spotted a basil cell bump on my shoulder. She removed it, it was very deep and will take about 6-months to heal, if they don't need to take more off after the biopsy report. I'll find out in just over a week.

MOM
What I have not mentioned is that on August 7, my mom got off balance and fell into a pole. She didn't tell me until August 12. I wanted her to get X-rays but she said she was fine. Well, she was not fine and drove herself the next day. Several ribs fractures on her right side. She was in severe pain, I phoned her primary doctor for pain meds and she was in rough shape.

She phoned us while at the dermatologist wanting us to pick up the pain meds. So, at rush hour, we drove from the city south to her town and delivered her medication. The usual 25-minute drive home was almost an hour, I was exhausted from the Cardio CATH the day before. We had made a deal for me to see her Thursday to take her food shopping. I was not supposed to lift anything over 5 pounds and she had broken ribs. A good pair.

Shopping was fine but when I dropped her off at the elevator to get the large hand cart to haul the groceries to her apartment, I kept waiting and waiting for he to return. Something was wrong. One of the managers came to the car to say hello, I told him about mom fracturing her ribs and at that moment, she arrived. Something was very wrong. She was covered in blood with a massive stream coming from a large gash above her right eye. She had fallen on her face! At that moment, Michael phoned. I must have been in shock as he said, "I'll be right there." The manager watched our groceries as I walked her up to her apartment. We cleaned her up but she was bleeding a lot. Michael arrived and took control. Back to Immediate Care! He picked up some lunch for us (it was now 1:00 and we were starving) and met us there. He is always so good with her.

After many stitches, she was shaken when we finally got her home around 5PM. I later learned that her knee was bothering her and a finger was swollen. We are going back on Sunday at 11:00 to have the gash checked to insure there is no infection then again on Tuesday to have the stitches removed.

My fear is that she is not breathing well and I worry about pneumonia. Her big 91st birthday party is today, my sister and her entire family are coming down for lunch and mom is embarrassed by her black eye. We will have a rather quiet lunch and wonderful cupcakes.

It has been one heck of a month. I hope the worst is over.

Preparing for the Fall into Transplants

Hello, dear Readers. I have so much to share with you. As last we met, I had the dramatic downturn from my lungs fighting the horrible forest fire smoke that drifted to our Coastside for weeks last winter. My pulmonary function tests were horrible. I dropped my FVC from 47% to 41% and was put on supplemental oxygen 24/7. It was ugly. The doctors in the Lung Transplant Clinic told me my quality of life was too good for transplants. Okay. Fine.

Three months have passed.

Wednesday, Michael and I hit the road early and began the day with an Echocardiogram for the Transplant Clinic. From there, we scurried across the street to the Pulmonary Function Lab. Capacity and DLCO tests. But, wait. Without warning me, they also had ordered a 6-minute walk test to see how much real estate I could cover in six minutes. The problem? I was wearing lovely wedge sandals. After nabbing some hospital socks with the little grips on the bottom, I was ready for the test.

Two year ago, I covered 1,500 feet in 6 minutes. Last week, it was 1,285 feet. I wonder if I could have done better with shoes on my feet? I was also thrilled to see my FVC return to almost the pre-smoke level and was now 46% of expected. The DLCO was also improved.

We enjoyed a great lunch before meeting with Dr. K. She was unaware I was having PFTs and an Echocardiogram that morning. She found the report of the Echo and it was normal. Great. They were worried that I might have done damage with all the smoke. She was thrilled that my numbers were returning.

In the meantime, I have been struggling with a UTI, my primary was afraid to give me antibiotics, gave me light ones and had to give me another set of a stronger drug. We found it in my lab tests for surgery this coming Wednesday to implant a drain in my eyes to relieve high pressures and cataract surgery on my right eye. I will be out of commission for a few days and unable to go to rehab for a bit longer.

Dr. K. was worried about how this was all handled and wants to be notified of any tests from different hospitals. She also asked that I would make an appointment with a gynecologist/urologist doctor I had seen a couple of years ago just to be sure nothing is going on like a problem with my pelvis floor.

I asked her about the transplant listing process. I was worried that one good pneumonia this winter could send me into transplants and I was aware that the window to become listed is small - need to be sick but not too sick. She told me that I could be listed in 1/2 of a day, if needed in an emergency. I felt so much better after hearing that.

Soooo, on Thursday morning we drove back into the city for an early appointment with the Lung Transplant doctor to review the previous day's tests. Drama was happening in the clinic and our 8:45 appointment turned into a meeting with him around 10:30. We kept ourselves busy with a drawing competition, which I lost miserably. I am a musician and clearly not an artist! Michael was amazing. The doctor laughed when we showed him how we kept busy while waiting for him.

He agreed that I might need to be listed due to a quick downturn and that I have everything in place incase that happened expect for...Cardio Catheterization. Yes, a little prob into the heart valves. I told him that I would rather do it now instead of in an emergency situation incase I have a fixable problem, we have the time. He liked my thinking. It is the final, big, invasive test that all pre-lung transplant people have to faee. It is being scheduled.

Later that afternoon, I spent over an hour on the phone with the anesthesiologist nurse for my eye surgery. Lots of instructions. Lots of eye drops. Lots of changes to medications until the surgery is over.

I was feeling overwhelmed with medical stuff. Thankfully, I am organized and was able to make a list to prepare myself for the surgery.

That's it. Think of me on Wednesday. I just want to be able to see clearly again.

WHAT?!?! NO TRANSPLANTS?!?!?

Well, hello! I have more news. Last week, Michael and I went to our meeting with Dr. S. at the Lung Transplant Clinic. He recognized me and we had a lot of fun with him. He was the father of a toddler and a 7-month old so not much sleep was happening at his house right now. From a teacher's viewpoint, I told him lots of good stuff coming up and we had a good laugh.

He asked if I would agree to lung transplants if approved today?

Yes.

He took a deep breath before asking about my quality of life. What I could and couldn't do. Example: I edged the shrubs along our driveway and parking slab, which would normally take me 20-minutes but it had taken 90-minutes. He laughed. "But, you still are able to do the work?" Me, "Of course!" He shook his head. After a few more question, he said that:

THE GOAL OF LUNG TRANSPLANTS IS TO GIVE A PERSON A BETTER QUALITY OF LIFE.

He said that if I had the transplants now, I would not have as good quality of life. Though my numbers are bad enough to qualify, all of my exercise, including pulmonary rehab six-days a week since 2005, has given me the muscles to support my lungs and I am TOO HEALTHY to qualify for lungs.

He also said that a person my age usually has issues following the transplants. Strokes. Still needing supplemental oxygen. Bedridden. The average life post-transplants is only 3.5 years. (I immediately wanted to ask questions about how healthy these people were going into the transplants or how many years they worked out in pulmonary rehab but I sat and listened.)

We then shared with him our secret goal - Dr. K., Michael and me - is to age out of the program at 70-years old. That, my friends, is only 4 short years away. If I can stay healthy enough, age out and stay alive for a few more years, I will have the same life expectancy as if I had the transplants.

He said that was a good plan as he noticed that every time I had a downturn, I improved. I shared that my secret weapon was exercise and that whenever I was feeling bad, I would kick up my level of working out. He shook his head. Wow.

So, he said we will put a hold on all testing and other plans, have another set of pulmonary function tests in three months then see where we are. I smiled at him. Three months. Let's see what I can do in three months.

I walked along the beach for twenty-minutes two days last week and will kick it up to thirty minutes this week. Eventually, I will work up to fifty-minutes two days a week on top of my two day of pulmonary rehab. I still do a bit of yard work on the weekends so I may add some chores to my routine.

It was remarkable how much better I felt after just the first walk. Somehow I felt I could breathe easier, fuller, walk straighter, stand taller and just had more energy overall.

I've got three months to see if I can improve my pulmonary function test numbers.

NEW LUNGS A'COMIN'

Well, hello Dear Readers! So much has happened since meeting with Dr. K. in January. On March 20, I finally had the Pulmonary Function Tests to determine the damage. I was feeling pretty good. After the tests, I always ask for a copy of the results.

I know my numbers. I follow my numbers. Taking one look at them, I knew they were very, very bad. Horrible.

DLCO Diffusing with hemoglobin - 10.52 or 44% of predicted
Forced Vital Capacity 1.25 or 41% of predicted

Others:
Alveolar Volume - 1.91 or 39% of predicted
Forced Expiratory Vol 0.84 or 36% of predicted
Forced Expiratory Flow 25-75% was 0.46 or 22% of predicted
Forced Expiratory Flow 50% was 0.61 or 18% or predicted
Forced Expiratory Flow 75% was 0.26 or 22% of predicted

Pretty darn low.

Dr. K. and I agreed we had a good run but it was over. We had both hoped that I could have continued on and aged out of the transplant process. The numbers also indicated that I needed supplemental oxygen 24/7 now (a pain in the butt). The up side is that I must have really needed it as I feel so much better, have energy and no longer feel the tightness in my chest.

She wants me to be listed for lung transplants as soon as possible. The process begins March 18 after I do the test to prove I need oxygen 24/7 for Medicare. That will be fun! 

In order to be listed, they examine EVERY ORGAN to insure one has no hidden medical issues. As 90% of my doctors and tests are at the facility it will be easy to have these other doctors’ sign off for transplants. But, any other testing takes time. Once that is done and after a financial review and an interview with a social worker (money, insurance and a two helpers must be interviewed and in place), they determine a number then submit my data to the State who applies their number. 

Once I am listed, I will not be allowed to travel more than an hour from the hospital. If I don’t get worse by then, the first listed number will probably be high. Not an emergency. Everything will be in place for the next downturn when my number will zoom to the top of the list. But, I am learning that this might have changed. One had to be six-months to death for transplants but I am hearing that has evolved. Maybe I am low enough...this is one question I will have for the lung transplant doctor when I meet with him on the 18th.

The surgery is done late at night. No one but the surgery team is there. Afterward, I will be kept under for 24 hours to adjust the medications without the complications of food. 

Then, the fun begins. The average stay is eleven days but for the first month, we will have to drive into the city five days a week for blood tests and a doctor appointment to adjust the medication levels. I will be unable to drive for six weeks and will sit in the back seat. 

To maintain these new lungs are a lot of work. Only 50% of lung transplant patients are alive after five years. This is not a slam-dunk. It is not a cure but a treatment. But, I am grateful for all the recent changes to the procedure including: no more breaking ribs and no three months in the hospital. 

I will post an update after meeting with the Lung Transplant Clinic doctors on the 18th.

An Update

Hello Dear Readers,

It has been a rough 2019 so far. I fractured my finger in the car door early in the month. It was the finger next to the one I had surgery on to remove the lump. It healed beautifully.

We had weeks of smoke from the fires north of us last October and November, which burned down entire cities. The smoke drifted west to us on the coastside. It was miserable. I had been fighting lung problems with the constant smoke and, in late December, I felt that I had an infection. Dr. K. approved antibiotics and on day nine of a ten day run, I ended up in the hospital.

I was constantly coughing. I needed supplemental oxygen to take a shower, wash the dishes, make the bed, cook dinner and not do much else. It was scary. I thought I had pneumonia. Imagine my surprise when the X-Ray in the ER came back negative.

Let the fun begin! They pumped 40 mgs of prednisone into me along with THREE nebulizer treatments, one after the other. My hands shook for some time after that! My lungs had sounded horrible before the treatments and the doctors and nurses and respiratory therapists were all smiling after about an hour. My lungs sounded better and I was breathing so much easier. No wheezing!

But, they believed that I was having an exacerbation of the disease. A downturn. A step closer to transplants. Since Dr. K. was out of town, they kept me in the hospital overnight so I could have a CT Scan. Because of the treatments and drug, I was awake all night.

A week later, I met with Dr. K. She believed that the smoke did some damage then I got a virus on top of it. Michael had a nasty one on Christmas, he gave it to my mom and then, of course, to me. Dr. K. delayed the PFTs as she felt my lungs were trying to recover. Some days, I would need no supplemental oxygen and others, I had very low saturation rates. It made no sense. She said that we would wait until March for the PFTs and felt that it will be an honest reading.

How am I doing now? I have time within a day when I get very short of breath then it passes and I am fine for days. I am hoping the healing continues. I continue to go to rehab class.

We will see. I am still playing with the Irish Fiddling group, though I just played for the first time in three months. It felt great. William bought a house. It is larger than ours, has tremendous views, he has a laundry room (I have never had one!), and a built-in bar, though he doesn't drink. He found his Mid-Century modern house, built in 1960s and he was able to buy it from the original owners. A real find.

I told him he could take anything for his house. At Christmas, he walked through the house, asked for all of my grandfather's artwork, the famous portrait, photos of the ancestors on the wall in the guest room, The Harvard Classics, my teak rolled-top desk and other family items. We are heading up to see the new house and to deliver everything to him in a few weeks. He is currently on a long tour in Europe, where it is very cold.

Life is going forward. I'm going to continue to take a break for a bit longer. After the PFTs, I will report back to you about next steps.

Love to you all. Stay well. Exercise.