Living Well with a Bad Diagnosis - Lung Disease

Wednesday, August 31, 2016

Into the City

It's 5:30AM. I stumbled out to the family room towards the smell of great coffee. Coffee. Yes, please. And so the day begins. My appointment with the nutritionist is this morning and it is at the campus deep into the city. Lots of traffic and stress to get there. But, before the appointment, I need to sit is a crowded room in a building across the street and wait for my number to be called for a blood test for the Liver Clinic's doctor. Sometimes, it is a long wait so I need to drive up even earlier as it becomes more crowded throughout the day. Also, I get a break on my parking so I will cross the street to the hospital lobby to get a little card for a disability discount. Lot's to do before my 10:00 appointment with Mr. B.

After my appointment, I am free for the day. I made a long list of things to do before my brother and Michael's sister's arrival beginning September 11. I am going to do a major trimming to the yard so I won't have to do it again before they come. After that, I am going to file a pile of paperwork. A good plan for the day.

Yesterday's rehab class was a joy. It was fun to see everyone and chat my way through it. I feel more centered this morning and nothing is sore!

Tuesday, August 30, 2016

Lots of Houseguests!

My newly retired brother Chip and his lovely Betty are planning to come for a visit from New Mexico. Marvelous! Only one small problem, they wanted to come the same day when Anna and Doug (Michael's sister and her husband) have planned to visit. Betty and I talked. Chip talked to mom on the weekend and was feeling we didn't want to see them!!! Oh no!! So, I quickly phoned them yesterday after I got home and we had a great chat! We confirmed their plans and they will be arriving to our house on Sunday, September 11. We will have mom here so she can visit with them, they will spend the night in their mobile home in our driveway and take off Monday morning, just before Anna and Doug will be arriving!

This morning, I am going to put together menus for breakfast, lunch and dinner with Chip/Betty/mom then three days of breakfasts and snacks for Anna/Doug. A challenge! We will be going out to lunch everyday as our main meal.

I am planning to work my brains out in rehab class today. The nutritionist appointment with Mr. B. is tomorrow and I am feeling a bit heavy. I am not confident. I know I am heavier since I saw him two months ago, but he wanted me to put on some weight. I am a bit nervous about it but...it is what it is.

Monday, August 29, 2016

Feeling Great

After we watched the F1 race from Spa, Belgium around 8:30AM yesterday, the sun was warming the house, the couch felt cozy and I drifted off to sleep while Michael was out washing and waxing my car. I slept for almost an hour and a half. It was amazing how much better I felt, less exhausted and finally felt like I recovered from last week. We ran some errands in town, went to a light lunch and watched the Giants game. It was great to just slow down and take a deep breath to just enjoy the day together.

In preparation for Anna and Doug visit, we replaced three LED lights imbedded into the pavers of our driveway. They had blown out. A year ago, we replaced six of them and two more old ones are beginning to fail but are still working. Maybe we can get a few more months from them. They light the driveway and the side of the house.

We also talked about the foods we would have on hand for their visit. Doug is a picky eater and both are not very adventurous eaters. The food list will begin today.

Mom and I are carefree today. No doctor appointments but we do have to swing by my glaucoma doctor to pick up a sample of my eye drops. I blew the reordering, thought I had another bottle but no, I am out of drops and that is not good.

I am still waiting for the report from the lab regarding my Pap smear.

There is a rehearsal of the Irish Fiddling group this evening. It will be a fun way to end the day.

Saturday, August 27, 2016

Done

Done. Exhausted. The Irish Fiddling gig went okay last night expect that: a. the store's music was on the entire time we performed as the unit was locked up in a room and the person forgot to leave the key. b. the guitarist was on fire and was wild all night. c. a well-known musician of this genre "dropped by" to hear our entire two-hour set. d. we didn't play as cleanly as usual with fuzzy endings because the guitarist was on fire. Oh well, it was fun.

Today? The guest room will be cleaned, the sheets washed and ironed and the guest bath will be extra cleaned. Oh, the rug in our bathroom will be cleaned with Resolve. It needs it.

That's it. The rest of the day will be a bit of yard work, watering and a long, nice nap.

Friday, August 26, 2016

Lots of Bumping

My university hospital is huge, covering three campuses throughout the city. It always surprises me when I bump into people I know among the people waiting for the elevator or walking from the hospital to the clinics or in a restaurant waiting for lunch. That is exactly what happened yesterday. After hugging the valet parking guy, who I have known for years, I headed into the clinics building to drop off the results of the non-invasive tests to the Lung Transplant Clinic. Done. Back at the elevator, I ran into Else and her husband from my rehab class who is in the final stages before being listed for a transplant. We began to talk. The elevator opened and out popped Dr. K.! What are the odds?

She smiled (!) and asked if I could help her. Oh my. She had a Cystic Fibrosis patient who was really suffering with GERD but was nervous to have the surgery, Nissen Fundoplication. She asked if I could speak with her. I believe that having this surgery to stop any fluid or vapors from flowing into my lungs has attributed to my ability to stave off lung transplants. It was the smartest thing I have done as the medications were not working. I was touched that she asked for my advice and help as I gave my approval to share my contact information.

Out of the clinic building, I walked a block to the building with the Starbucks in the lobby and the Liver Clinic on the 3rd floor. I was early and the only one there. It was my once a year visit, as my liver seems very happy. The front desk and the nurse greeted me like a warrior returning from the war. Lots of laughs and hugs and stories. The doctor arrived followed quickly by photos of his children and talk about my downturn and visit to the lung transplant clinic. He asked for blood tests - next Wednesday - and a sonogram to make sure all is well. In six months, we will chat by phone to see how I am doing then he may or may not order some more tests. "See you in a year." Thank you  very much.

Back to the clinic building to pay for the valet parking (same as in the garage) where I ran into two women from Dr. K.'s office. We chatted a bit, hugged goodbye when my car arrived.

I was home having lunch by noon.

Thursday, August 25, 2016

Dear Friends

I sat with mom's friends and looked around the table at the four women who were all born in 1928. We met to celebrate mom's birthday and her friend Grace was the hostess who pre-ordered a special luncheon. Doris arrived through the door first. Tall and healthy but living alone and unable to drive. Jane, a former movie star, arrived with a white cane to help her into the restaurant. She had been struggling but had clearly lost a lot of sight since our visit a year ago. Grace was unable to function without her walker, her driver's license was taken away by her daughter and she looked frail. As she arrived, she started yelling at everyone, including the owner of the resutarnt.

Doris had warned us that she was "up and down." While Grace was carrying on, I turned to Doris and asked if this was a sign of dementia. Doris just nodded. Apparently, they put up with a lot of abuse as they understand that she is ill. They are good friends.

Mom looked about ten years younger than the others around that table. She does have health issues but she moves well and is still so mentally fit. It was good for her to spend some time with these wonderful friends who really helped her piece together a life after my dad died.

The drive was rough. A normally 90-minute drive took almost over 2.5 hours due to accidents and road work on our way out to visit dad's crypt before the lunch. It was nuts. The ride home was uneventful but I was really tired.

Today, I will be visiting the Liver Clinic. I love this clinic and all the people who work there. It is like seeing old, dear friends! I so hope the drive to and from the city is easy and not a repeat of yesterday!

Wednesday, August 24, 2016

Replens

I was not feeling great as I drove over the pass to the rehab class and decided that maybe it wasn't the smartest thing to do. The bleeding had not completely stopped. I went in for a chat with Sherman, told the RNs why I thought I should not stay, they agreed so I went grocery shopping. It was quick so I was home nice and early.

Instead of a fancy dinner, I made our crustless breakfast quiche then I napped for a few minutes before Michael came home. The rehearsal of the Irish Fiddlers went well and we are ready for Friday evening's gig.

This morning, I feel so much better. The OTC moisturizer is fantastic. I have no pain, no bleeding and no problem with my UT. Replens. A miracle. It must be reapplied every three days.

Within the hour, mom and I are heading to visit my dad then have a birthday lunch with mom's girlfriends in the Valley, where she used to live. At 88-years old, she is the youngest of all her friends! It is a 200 mile round-trip drive and is exhausting. I slept really well last night so I hope I make it through the day safely and not too wiped out.

Tuesday, August 23, 2016

Worries

The PAP smear didn't go well and the doctor wrote a referral to one of my university clinics. She believes that due to medications, I was so dry that just probing the tissue caused bleeding. It explained all the UTIs as well. She offered samples of OTC products that should help and I feel so much better this morning.

I didn't sleep well last night, have a full day planned and feeling overwhelmed. After the rehab class, I need to do the grocery shopping over the pass, rush home, make dinner then I have an Irish Fiddling rehearsal for two hours beginning at 6PM. But, what worries me is that I am driving two hundred miles tomorrow so mom can enjoy a birthday lunch with her girlfriends. It always wears me out.

The bigger worry is that I will get so worn down that I will get sick. Kids are back to school sharing new germs and the Fall season of colds begins. I am frantically washing my hands and being careful not to touch my eyes or nose.

So, I need to get through the week to the weekend. It is going to be a challenge.

Monday, August 22, 2016

Final Pre-Test

We have fires to the north of us and fires to the south of us. The air is heavy and the sun has that funny muted color as it works it way through smoke. Every once in a while, I can smell it. I found myself needing oxygen while I ironed the sheets and making the bed. It was a struggle to take a shower. Just sitting outside with the neighbors, I kept it on for support.

My to-do list is still undone. I just didn't feel good enough to conquer it all. Michael did fertilize the lawns so that is done. The guest room needs attention so I am going to attack it a bit each day - sheets, closet, dusting.

I was sent a list of needed pre-tests for lung transplants and today will be the final test. The dreaded PAP smear at 2:30. Once I get the results of the test, I can drop the entire packet off at the clinic to get the next list of tests. I think they also want me to meet with their financial person, psychologist and nutritionist.

Today, mom and I are doing a Target run and a quick lunch so I can take a shower before the doctor appointment. It will be good to finally get it done.

Sunday, August 21, 2016

Crawling Back

I crawled into the house covered in pieces of yard waste attached to my work pants and fell into my chair. I was done after five long hours working in the gardens. It ended up being a lot more work than expected. After a wild week, it was the final blow. I was exhausted.

It was so bad that I asked if Michael could bring some dinner home. It would be too much to even try to cook. We were both amazed that I stayed awake until 7:30 but I passed out once my head hit the pillow. I woke up this morning at 6AM feeling rested and ready for the day.

Today's goals are to wash and iron the guest room sheets and as well as ours. I want to straighten the closets in both. Also, I need a shower. Michael is going to fertilize the lawns this morning in anticipation of company in three weeks. Should be nice and green by then.

I expect to read, watch some movies and rest today. Next week is jammed packed and I need to be rested and recovered. I so don't want to get sick.

Saturday, August 20, 2016

Minor Stroke

The work begins today in anticipation of Anna and Doug's visit in September. I am still tired and going to take it easy today but I will still cut the grass so Michael can fertilize it tomorrow. The guest room's closet will be cleaned and the room will be made ready for guests. If I do it well enough, it will just need a quick dusting and vacuuming on the day of their arrival. I'll also pull the kitchen cabinets together and dust the floor of our closets, just because it is REALLY needed. After paying some bills, I hope there is a nap in my future.

Anna is Michel's older sister. The touchstone of his family. Doug had the surgery for a brain tumor after his visit with us last year. Let's not do that again! They live east of LA in a desert area but they love the ocean. They never want to leave the coastside. We have a few things planned but will offer options and let them choose their own adventure! Their son, William just moved to the Tacoma, WA area to begin a new life with his Maddy. They have not met our William yet but hope that happens soon!

Mom scared me yesterday when she told me she thought she experienced a TIA. A mini-stroke. I asked if she called 911. "No, after a few minutes, it passed." Yikes! I told her that it would have been a wise to call ASAP just to make sure because she could have been at the beginning of a major stroke with symptoms growing more pronounced that she might not have been able to get to the phone after few minutes. She has a device check for her pacemaker on Monday morning so it may indicate an incident. I will also make sure we report it to the eye doctor.

Friday, August 19, 2016

Crawling to the Weekend

Happy Friday! It has been a long week! I dragged my way through yesterday and even went to the rehab class with hopes that it would give me some energy. I was exhausted from William's visit and wasn't fully recovered from the long rehearsal Thursday night. We got to the stage in the center of town right on time last night but it took more time than expected to set up the sound system. We began 10-minutes late for a 60-minute gig, which is never good.

We played well. The audience was happy and there were many people milling about. It was a lot of fun.

They were heading off to play with another group around a fire pit a block away but we headed home and I was in bed within minutes.

After I drive over to mom's this morning, we are driving back to the coastside for a meeting with her financial guys but, before the meeting, I want to show her the results all the work we have been doing in the garden. She was an amazing gardener and is about the only person I personally know who will really appreciate all the work we have done.

I so hope to have a quiet weekend to recover and get stronger for a brutal week ahead.

Thursday, August 18, 2016

Birthday Photos


Mom was so touched that we reserved her favorite table, a red balloon was delivered to the table and an amazing hot fudge brownie with fudge sauce with vanilla ice cream topped with whipped cream arrived as a surprise. She loved it. She loved the entire afternoon. We opened presents and chatted before lunch, she had a John Collins cocktail for the first time in years and we chatted for an hour after lunch.

It was a lovely day but within a couple of hours at home, I had a rehearsal with the Irish Fiddling group in preparation for our gig this evening. After a long day, I fell into bed and passed out!

Today is the rehab class then we have to be on the outside main stage by 5:00 to set up for a 6-7PM performance. It is going to be cool, lots of sweaters and jackets on all of us and Leslie brought us fingerless gloves from Ireland so we could still play in the cold but keep our hands warm! Brilliant! I will make sure to bring them along tonight.




Wednesday, August 17, 2016

Eighty-Eight Years Ago

Eighty-eight years ago today, a mother of two decided to have her third baby at home instead of in the hospital. It was in Rockford, IL in August in the heat and humidity. The hospital did not have air conditioning but her home had a master bedroom on the entire second floor with lots of windows and cross ventilation. Labor was going fine then slowed. It was lunchtime and the doctor decided to take some time for lunch.

Her husband was worried and stayed with her. He was raised on the largest cattle ranch in the state of South Dakota. He had helped birth a lot of calves and other ranch animals.

Suddenly, the baby was coming but the doctor had not returned from lunch. Her husband helped her through the labor and delivered a girl, which her mother would claim for years that she arrived smiling.

There was a lifelong connection between this little girl and her father. She adored him. He included her in his life and taught her so many things. She remembers the thrill of walking with him along Michigan Avenue in Chicago, in his jodhpurs, being greeted by almost everyone passing by. He was the head of the largest ad agency and these walks helped his creativity. They would talk about everything while they walked, she learned so much about nature and art. He taught her to play golf and she was his caddy from about 4-years old. She would complain about her knocked knees. He would reply that "those knees are going to carry you a long way." He always turned a negative into a positive in a very quiet manner.

Years later, when she was married with three children of her own, her father was visiting and quietly told her husband that he was proud of him and the home he made for his daughter. That meant so much to her husband as he never really thought he was good enough to marry her. She could have done so much better.

For her entire life, she knew that she was deeply loved by this special father. Knowing this love, she was able to have it with her husband and model it to her children.

My mom's 88th birthday is today and I am one grateful daughter for everyday we share together. I love hearing these stories and memories of her childhood. I am blessed to have her as a mom for so many reasons. Michael and I are meeting her later this morning to open presents before we have lunch at a nice place with fabulous views where she may even have a cocktail!

Happy Birthday, Mom.

Tuesday, August 16, 2016

Birthday Presents

I had a very careful food day yesterday and I feel so much better this morning. Breakfast - Cauliflower and Chicken casserole. Lunch - split a Nordstrom Chinese Chicken Salad with mom. Dinner - Ground Beef Quesadillas with low fat cheese. Dessert - Sugar-free Popsicle. Lots of water also helped. I still feel I have an extra couple of pounds I need to get rid of but with careful diet and exercise, it should be gone in a few days. I love the feeling of being lean and strong.

Today, I am going back to the rehab class to sweat and workout. At this point, if I don't exercise everyday, I begin to notice soreness in my body and my stamina slowly depletes. Exercise. The answer to so much.

This morning before the class, I need to find the perfect birthday card for mom and a Starbucks gift card. I already bought a McDonald's one and a CD of Classical Piano pieces featuring her favorite, Warsaw Concerto. When Michael severed his tendon on his hand in 2002, he was on disability, mom was in for a visit and they were spending the day together while I was working. Earlier, I had insisted Michael take a sip of a Chai Tea because it tasted like Christmas. Mom had never learned to enjoy coffee or tea or any hot drink. On this day, he insisted she take a sip and she loved it. She is now addicted to it but is appalled at the price so each of us give her gift cards throughout the year so she never has to pay for one. It is a treat. With dolce cinnamon sprinkles.

Monday, August 15, 2016

Managing

I was in bed by 7PM last night. Totally exhausted. William left for home in the morning, we went food shopping, I made breakfast for the next few days and a simple dinner. We just wanted a bit of our simple food after all the fancy big dinners out. My plan is to drink a lot of water this week, exercise and I hope to feel much better by the end of the week.

Mom and I are spending the day together with no appointments or plans. I do have to make reservations for her birthday lunch on Wednesday and swing by Safeway this morning. Maybe, I can stay awake until 8PM tonight!

I am a bit nervous about getting sick. We were out and about every evening while William was here and I am just not used to expending that much energy after a full day. Later in the week, the Irish Fiddling group has a gig playing on the stage in the park in the center of town. At night. In the fog and cold. The rehearsal is the night before so I am worried about being worn out from William's visit combined with the gig might do me in. The goal is to eat well, exercise, to take it easy during the day and to sleep as much as possible at night. We'll see if I can manage it all.

Sunday, August 14, 2016

Waving Goodbye

We went to a party at another fancy restaurant last night to celebrate Jill's birthday. I even wore a dress! Earlier in the evening, Michael and William brought home a beautiful dry-aged rib eye steak and three house-made sausages from the butcher and the ingredients to make mozzarella, tomato, basil salad to split for dinner. Their heads were together over the BBQ trying to agree about the steak's doneness. It was cute to watch.

Later in the evening, a total of nine of us met to celebrate Jill's birthday at a pretty lounge and had cocktails and appetizers. We had eaten so we didn't want any more food! The three of us just talked and enjoyed being there. We had so much fun that we stayed an additional almost hour talking in the parking lot! Jill's friend, Moriah, was there with her husband. Their 18-year old son has Charge Syndrome and we have known them since he was born. She and Jill went to high school together and have remained good friends. I love this woman for a million and one reasons but mostly because she is an amazing mom. I don't see her very often so we were able to have a good chat. The rest of the group took off in search of a good hamburger while we went home to bed at 10PM.

William is leaving this morning. It has been wonderful to have him home. There are leftover sausages for breakfast and I'll also make some eggs for good traveling food. I never worry about him unless he is leaving us and I want to make sure he makes it home. I'll be thinking of him all day today and tomorrow.

After he leaves, I need to run into town to food shop. The cupboards are bare.

Saturday, August 13, 2016

Party Tonight

Mom and I met the boys for lunch yesterday, a final chance for William and mom to chat before he leaves. As a surprise bonus, we were invited to Jill and Wayne's house last evening so Evan, who is leaving for college in a month, could talk with William. He is going to college just north of William and they talked together for a couple of hours. The college is in an area he knows well and was able to share a lot of information with Evan. While we were there, the college contacted him via email and gave him the names and phone numbers of his two new roommates. Instagram instantly produced photos and information on one of the boys. He looked like a nice kid.

Jill and her sister, who just dropped by with her husband, had just returned from a week in New York City with stories to tell. The hours flew by and we didn't get home until 10PM.

It has been such a great several days with William but, I am sick of all the food! Yesterday, I barely ate anything. Tonight, we are meeting Jill and Wayne at a local fancy restaurant for appetizers in the lounge to celebrate her birthday. In the meantime, I am staying home, taking a nap and laying low.

Friday, August 12, 2016

Bumping into People

I am exhausted. Too much fun. Last night, we arrived to the car show and there were about twice as many people there as last week. We sat inside and watched some really cool cars arrive, people mingling around the cars and some familiar faces. Michael spotted his brother's first wife's boyfriend from across the room, went over to say hello and I was once again amazed that he even recognized him after 40-years.

British Don arrived right on time to share a crab sandwich, calamari and sliders. The band started to play and they were a bit too loud. Hate that. Hard to have a conversation and, after all, isn't that the point of going out together?

When William was four-years old in a nursery school, he made a friend and I became friends with the mom. We have bumped into each other through the years and we bumped again last night in the women's bathroom! I told her William was at a table and she went over for a nice chat. Her husband was talking to him by the time I got back. Nice.

Then, we were getting ready to head home, walked back outside and two guys pulled up on bicycles. I wandered over while Michael was talking with him and it turned out to be someone I had not seen in over 20-years. We met Jim when he was in high school in 1971 and, in 1990, his mother was the person who recommended me to the school where I got sick. She was amazing and I learned so much from her while working at the school. Jim told me that she passed away two-years ago but I was not surprised that she died her way. She made everyone else comfortable, had a bit of a party and died less than 30-days after discovering a rare cancer growing on the outside of her stomach.

Jim has been married for many years, has a 27-year old daughter and installs the most amazing hardwood floors. He also works with anything wood. Very creative, very tender, nice man. I loved watching he and William talk. He knew about William but had never met him so he had lots of questions. Lots and lots of questions and they both shared lots of laughter.

We finally pulled ourselves away and got home at 9PM.

The boys will be finishing William's car today. I will be driving mom to her dentist appointment then I have a hair appointment in the afternoon. These few days have flown by.

Thursday, August 11, 2016

Loving It!

We are hustling this morning. The boys are leaving by 8AM and I need to be gone by 9AM for the housekeepers. Yesterday, Michael decided to fix the huge dent in William's car along with little ones along the side. His landlord was moving wood with a crowbar, it slipped and flew into the side of the car near the gas tank. They are buying the supplies to paint it this morning and will put it together tomorrow.

But tonight, we are going to another car show at the restaurant long the ocean. William loves the funky, old-fashioned decor and the divine food. British Don is going to meet us there so it is going to be one fun evening.

Last night, we went to an excellent Prime rib/steak place over the pass and had a really lovely evening just chatting and enjoying food we don't usually eat: Prime rib, creamed spinach, salad, garlic potatoes, Yorkshire pudding. Now you understand why I am going to take a long walk along the ocean this morning!

I love having William here. It is so nice to have a conversation without a phone or a computer between us. Live conversation. He looks good and happy and healthy. I am enjoying every moment.

Wednesday, August 10, 2016

He is Home

William arrived around 4PM, we chatted a bit then drove down the coast for a fish dinner at the famous dive near the goat farm. We had a smelt appetizer for the first time ever. Rather weird to have the little fish looking at you. It was so good to see our son in person. He looked healthy and happy. This morning, he and Michael are taking my mom to a quick doctor's appointment while I am getting my hair done. We will meet up later for a steak dinner tonight, as we have some gift certificates.

Yesterday's physical was primarily mental. Really. I sat in a chair and we faced each other the entire time, except for a moment when I had to walk down the hallway and back. I just needed a simple PAP smear for my pre-testing for lung transplants. But, because of Medicare rules, I had to have two separate appointments.

She asked me a lot of questions regarding my emotional health before reviewing my list of physicians and specialists. After she filled out some paperwork, we began the second part of the test. I had to complete a test I had done before during my brain study then I had to draw an object. There were pictures of a camel, lion and elephant, which I had to name. The hardest was a list of five things that I had to remember and repeat back to her at the end of the entire test. Boom. Did it. It was a geriatric test, which for some reason, I had to take. Thankfully, I passed it with flying colors.

Next week, I get to have the fun PAP smear. Yuck. But, I have gathered all the other information and am ready to turn it into the Lung Transplant Clinic.

Tuesday, August 9, 2016

Physical Appointment #1

Gold Medal Day today! William has been mentioning that he would be driving down from Seattle for a visit in August. Sunday, Michael left a message on his phone to give us a call. About an hour later, we got a text that he was on his way and would arrive TODAY. Apparently, he wanted to spend a day with friends on his way down so we expect him sometime this afternoon.

Very early this morning, I am having the first of two appointments for a physical with the local doctor. All I needed was a PAP smear for the lung transplant paperwork but noooooo, it had to be a FULL PHYSICAL. Now, I go to lots specialists. All my issues are being monitored. I have tons of blood tests. Medicare would not pay just for a quick PAP smear. Today is a face to face. Next week is the actual PAP smear.

After seeing the doctor, I am rushing home to make some Scotch Eggs and a loaf of Lemon Tea Bread as special treats for William. Michael has a boys-night-out at a great restaurant this evening so William will be going along with him. A special guest!

We have no idea how long he will be with us. We will enjoy every moment!

Monday, August 8, 2016

Pulmonary Fibrosis? READ THIS!!

A friend alerted me to this blog written by Dr. David Lederer at Columbia University. It is so very well written on how he differentiates between the ILDs. I learned a few things! Please take a few minutes to read it.

What could have caused my Pulmonary Fibrosis?

I have noticed that many people living with PF are frustrated by the scientific and medical community's lack of understanding about the causes of PF. I thought I would take a moment to let you know what we DO and DON'T know about the causes of PF. I will also help you try to figure out the cause of your PF (if a cause is known for your kind of PF).

Idiopathic forms of PF

First, let's address the frustrating "idiopathic" types of PF. We use the term "idiopathic" to describe disease without a known cause. As many of you know, "idiopathic pulmonary fibrosis" (also known as IPF) is only one of the many types of PF for which we don't know the cause. Doctors group these diseases of unknown cause into a category called "idiopathic interstitial pneumonias." There are many of them. I am not going to go into detail about each one. But, I will tell you two pieces of (hopefully) useful information. 

(1) Many of these conditions are named after the appearance of your lung tissue under the microscope. Importantly, many of these lung biopsy appearances (which we call "patterns") can be seen in other types of PF of known cause (see later on about the "interstitial lung diseases of known cause or association.") So, just because your biopsy shows "NSIP" doesn't necessarily mean that you have idiopathic NSIP. You might have an "interstitial disease of known cause or association" with an NSIP pattern on your biopsy. Read on and then talk to your doctor for more information.

(2) All of the "idiopathic interstitial pneumonias" require a surgical biopsy of the lung to diagnose, with two exceptions: idiopathic pulmonary fibrosis and unclassifiable idiopathic interstitial pneumonia can in some cases be diagnosed without a biopsy.

Here is a list of the idiopathic interstitial pneumonias (and their abbreviations):  

Major types:
  • Idiopathic Pulmonary Fibrosis (IPF)
  • Idiopathic Non-specific Interstitial Pneumonia (idiopathic NSIP)
  • Respiratory Bronchiolitis-interstitial lung disease (RB-ILD)
  • Desquamative Interstitial Pneumonia (DIP)
  • Cryptogenic Organizing Pneumonia (COP)
  • Acute Interstitial Pneumonia (AIP)

Rare types:
  • Idiopathic Pleuroparenchymal Fibroelastosis (IPPFE)
  • Idiopathic Lymphoid Interstitial Pneumonia (Idiopathic LIP)

Unclassifiable Idiopathic Interstitial Pneumonia (Unclassifiable IIP)


There are other types of PF of unknown cause too. For example, pulmonary sarcoidosis and a number of more rare types of lung disease would also be called "idiopathic", even if they are not included in the "idiopathic interstitial pneumonia" category.


Interstitial Lung Disease of Known Cause of Association
There are a handful of types of PF for which we do know the cause – or at least we understand what might have triggered the disease. We call these diseases "interstitial lung diseases of known cause or association" (I know, ridiculously long).  Here are five major categories of "interstitial lung diseases of known cause or association"
  • Medication-induced
  • Radiation therapy-induced
  • Autoimmune disease (also called Connective Tissue Disease-ILD)
  • Hypersensitivity pneumonitis (Environmental causes)
  • Pneumoconioses (Occupational causes)

If you have been diagnosed with PF (or ILD), you and your doctor can work together to see if you have one of these "interstitial lung diseases of known cause or association." It's not too difficult, and you can start the process by asking yourself a few questions. I'll share with you the questions I ask my patients to sort out possible causes of their PF:

Medication-induced

"Have you ever taken a medication to slow a fast heartbeat? Have you ever had atrial fibrillation ("A Fib") or had your heart shocked to stop an abnormal heart rhythm? Have you ever taken a medication called Amiodarone or Cordarone?"
            Amiodarone (Cordarone) can cause ILD.

"Have you ever had urinary or prostate infections? Have you ever taken an antibiotic called nitrofurantoin, Macrobid, or Macrodantin?"
            Nitrofurantoin can cause ILD.

"Have you ever taken methotrexate or received chemotherapy?"
            Methotrexate and chemotherapy can cause ILD.

"Are there other medications you've taken for long periods of time in the past?"
            Lung disease due to medications that you either take currently or have taken in the past can be looked up at www.pneumotox.com. Be warned: Many of the cases of lung disease on Pneumotox.com are NOT caused by medications – but when people develop a lung disease after taking a medication, doctors scratch their heads and wonder if the drug could have been responsible for the lung disease – but they can't really prove the link. Be sure to discuss your medications with your health care provider before you make any changes to your medical regimen – seriously, you could be harmed by stopping your medications. 

Radiation-therapy

This one is usually pretty obvious. Any history of radiation treatment to the chest for breast cancer, lymphoma, or another type of cancer can cause PF.

Autoimmune disease

There are a variety of autoimmune diseases that can cause "Connective Tissue Disease-associated Interstitial Lung Disease" (also known as CTD-ILD). "Auto" means "self" – so autoimmune diseases are conditions in which your immune system attacks tissues and organs in your body. This can lead to inflammation, injury, and scarring in different organs. The lungs are often involved. 

In my experience, the most common autoimmune diseases that cause PF are:
  • Rheumatoid Arthritis (this is different and less common that Osteoarthritis)
  • Scleroderma (now called Systemic Sclerosis)
  • Polymyositis
  • Dermatomyositis
  • Anti-synthetase syndrome
  • Sj√∂gren's Syndrome.

Occasionally other types of autoimmune disease (such as Systemic Lupus Erythematosis, or "lupus") can cause PF. Certain types of blood vessel inflammation diseases (called "vasculitis") can also cause PF. Some people even develop an "idiopathic interstitial pneumonia" due to "autoimmunity" but without developing one of these specific autoimmune diseases. We now use the term "interstitial pneumonia with autoimmune features" (or "IPAF") to describe this condition. Many of these folks have "NSIP" on their biopsy (see above section on "idiopathic interstitial pneumonias") and can also (correctly) be diagnosed with idiopathic NSIP. 

In addition to asking my patients if they have ever had one of the autoimmune diseases listed above, I ask my patients the following questions to sort out if they might have an autoimmune disease:

"Do you have pain, swelling, or stiffness in any of your joints?" 
"Are your hands stiff when you wake up in the morning? How long does it last?" (an hour suggests autoimmune disease)
"Have you noticed any thickening or tightening on your fingers, hands, or neck?"
"Have you noticed any rash on your face, chest, or arms? Does it occur in areas exposed to the sun?"
"Do you suffer from heartburn? Do you occasionally have food come all the way up to your throat?
"Do you suffer from dryness of the eyes?"
"Do you suffer from dryness of the mouth?"
"Do your fingers sometimes turn white or red? Does cold weather make this worse?"
"Do you suffer from pain in your muscles in your arms or legs? How about weakness?"

Now, many of us have had one or more of these symptoms – so don't start to worry that you have an autoimmune disease because you've had some joint pains or a rash. But definitely talk to your health care provider about any symptoms you are experiencing --- your doctors can help you determine if you have an autoimmune disease. 

Hypersensitivity Pneumonitis

If you break down the term Hypersensitivity Pneumonitis, you can see that it means your lungs are "too sensitive" to something. Usually the "somethings" are proteins from a living thing that you are breathing in – the most common culprits are proteins from mold spores, bacteria, and animals (particularly birds living indoors). Breathing these proteins triggers inflammation in the tiniest little airways in your lungs, followed by inflammation in the walls of the air sacs, and in some cases this leads to scarring. 

Hypersensitivity Pneumonitis is a long medical term – let's call it "HP" for short. In my practice, I see a LOT of HP – about 25% of my patients who have any kind of PF have HP (another 25% have autoimmune diseases, and 25% have idiopathic pulmonary fibrosis). There are 3 critical tests that help doctors figure out if you have HP as the cause of your PF:
  • Asking the right questions to identify a possible exposure to proteins you are breathing in (see below)
  • Listening carefully to the lungs for a special kind of lung sounds (called an "inspiratory squeak") – Squeaks sounds just like you'd expect. Squeaky. Ask your doctor.
  • Getting the right kind of CAT scan – in addition to the usual CAT scan performed when you take a deep breath and hold it, a 2nd CAT scan performed after you breath out is also important. With this kind of CAT scan, your doctor can look for "gas trapping," or pockets of air that get trapped in different parts of your lungs when you breathe out.

Here are the questions I ask my patients to figure out if they have HP:

"Do you have a forced air heating system in your home? In a prior home? In a second or vacation home? In your workplace? If so, how long have you been exposed to it? Does it have a humidification system? Has it ever been contaminated with mold?"
"Have you ever had any water in your basement or another part of your home? Have you ever had water damage in your home?"
"Are you aware of any mold in your home (outside of your shower)?"
"Do you use a hot tub on a regular basis?"
"Do you use a humidifier in your home?"
"Do you have any birds that live in your home currently or in the past? Do you spend time in someone else's home where birds live? Do you take care of birds in cages or coops currently or in the past?"
"Have you been exposed to renovation or construction?"
"Have you been exposed to farming or an agricultural setting?"
"What hobbies do you have?"

Remember – just because you might have been exposed to one of the above does not mean it was the cause of your PF. Lots of us have had water in our basements at some point. But be sure to bring this up with your doctor.

Pneumoconioses (Occupational causes)

Pneumoconioses are types of PF that result from exposures in the workplace. Here are just a few examples:
  • Asbestosis (due to asbestos exposure)
  • Coal Worker's Pneumoconiosis
  • Silicosis
  • Berylliosis
  • Hard Metal Lung Disease
  • (there are many others)

I usually ask my patients about their current job and all prior jobs. I also ask whether you ever worked in the military (particularly with exposure to Navy shipyards or dusts, fumes, gases, vapors, or chemicals).

I also ask if you've ever had a job where you were exposed to dusts, fumes, vapors, or gases that you might have breathed in. I also ask about the following exposures:
  • Asbestos
  • Mining
  • Excavating
  • Coal Work
  • Foundry Work
  • Sand Blasting
  • Stonework
  • Ceramics
  • Abrasives
  • Heavy metals
  • Factory work

Please talk to your doctor if you've had a job where you might have been exposed to one or more of these things.

If you do have an "interstitial lung disease of known cause or association," it is important to figure this out. We can sometimes treat you based on the factors that are triggering your disease:
  • Remove exposure to harmful medications
  • Treat autoimmune diseases (usually with a Rheumatologist)
  • Remove exposure to mold, bacteria, birds, etc.
  • Remove exposure to occupational triggers

If you have PF of unknown cause, please talk to your doctor to figure out if you might have an "interstitial lung disease of known cause or association."

You can always get more information about PF and where to get medical care from the Pulmonary Fibrosis Foundation:

About Me

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New York, NY, United States
I am a pulmonologist in New York City specializing in the care of patients with pulmonary fibrosis and those who have undergone lung transplantation. I created this blog to help increase awareness about the diagnosis and management of pulmonary fibrosis among people affected by pulmonary fibrosis. My posts represent my personal views and not those of Columbia University or the Pulmonary Fibrosis Foundation.

Sunday, August 7, 2016

Prepping the Gardens

It has been a couple of days working in the gardens. My Zen place. The place where it is quiet and I focus of hand trimming a plant or cutting the neighbor's vine as it tries to creep over onto this side of the back fence. While working in the front yard, the neighbors always stop by for a chat. Always a pleasure.

The thing I most worry about giving up while I continue the march towards transplants is working in the gardens. Because of that, we are trying to remove all the high maintenance plants and replace them with small, easy to maintain, no-trimming-needed plants so I can work as long as possible.

In the meantime, I am also planting some annuals in preparation for mulch and fertilizing the lawns after everything is planted. I filled the recycle bin yesterday. Today, we are grateful for recycle bin #2 as it should be filled to the brim and both will be ready for pick up in the morning. Michael is going to rip out some Heavenly Bamboo along the dining room windows to be replace by geraniums and a jade plant. They were getting too big, too woody and too ugly. Time to go.

This all should not take much time this morning so I will be enjoying a well deserved shower afterwards then we are planning to go out to lunch. Maybe we will just stop at the organic market for some fresh grilled teriyaki chicken or maybe to a real restaurant. A reward for work well done.

Friday, August 5, 2016

Dancing

At the Relay for Life last Saturday, I spoke with Peggy, the wife of the owner of the restaurant right on the ocean north of us. We agreed to meet again Thursday evening for a car show in their parking lot. Another chance for a chat! Chuck, her husband phoned to let me know it was a bad day of her chemo cycle and she was not well. Too bad. We drove up early and followed at least six cars making their way to the event.

The lot was filling up with very cool cars from 1933 to almost the 1970s. It was fun to watch everyone taking photos and a long look at each car. There was even a Cobra there. It was a bit foggy and cool so we sat inside and watched through the huge windows. Mark, from Michael's former work, and his little daughter drove up in his very cool old truck. The restaurant had a bar but where we were sitting, it had lots of small tables and banquet sitting with a large dance floor between them.

Mark's daughter was enjoying ice cream when the band began playing 1950s music and she started moving with the music. She said, "Just a bit more ice cream then I can dance!" She is going into first grade. She and dad got on the dance floor and that girl had the moves! She had taken ballet lessons for years and a few hip hop classes. It showed. Dad was tired so a lady next to us noticed and asked if she could dance with her. Well, they became best friends and every woman fell in love with her. They all danced together many times and I don't think she wanted to leave.

What was even better, there were other kids there and they wanted to dance, too. It was a nice family place with a fun band playing great music with a parking lot filled with nostalgia and they served ice cream to a little girl who will never forget this evening out with her dad.

Thursday, August 4, 2016

Waiting

I overdid it yesterday. Really. Later in the afternoon, I actually kicked off my shoes and laid down on my bed for over an hour. Breathing was rough and my body was just tired. We bought our new washer and dryer in the morning then had to rush home to take everything out of the garage, remove the old ones, remove part of a wall Michael has been wanting to remove for years, then he used his compressor to totally blow clean the entire garage and finally, he cleaned the dryer vent. Four hours later, he was done. Why the rush? The new appliances are being delivered today between 8AM-noon.

While he was working away, I was planting the back corner garden. The planting part was easy, it was the hand trimming and removing bushels of garden waste that did me in. My breathing was rough when I began but it really knocked me out. After watering everything in, I took the nap before making dinner and I even slept like a baby last night.

While waiting for the delivery this morning, I am going to plant the small garden in the front. Anna and Doug are coming for a visit in seven weeks so I hope all my little plants are happy and healthy by then. We will be fertilizing the lawns in two weeks and Michael is going to order some mulch. I stay clear of any mulch as it is not good for my lungs.

Wednesday, August 3, 2016

Buying

Shopping for appliances! Finally, a new washer and dryer is in our near future! After the deal is done, we need to swing by the nursery to buy some flowers for the garden and I want to do some trimming and planting all in anticipation of company. Yes, it was confirmed as of last night that Anna and Doug are coming for a visit September 12-15. Let the cleaning begin!

I am still having pain issues. It hit again yesterday mid-morning but I made it through rehab class without a problem.

Looking forward to spending the day shopping, buying then lunching together. I can't wait to get into the gardens to do some hand trimming then watering my new and transplanted plants.

Tuesday, August 2, 2016

My Own MacGyver

Michael considered himself "MacGyver" yesterday because he concocted a clothes line in our garage to hang all the wet laundry. One proud guy! While waiting for mom's shot in her eye, she reminded me that Sears had great appliances and we might want to look for the new washer and dryer there. Our local Sears had closed and is currently being demolished but I forgot there was another one to the north. I phoned Michael and we agreed to check it out on Wednesday.

After we got home in the afternoon, Lisa across the street gave me a lovely plant as a thank you for feeding their kitty while they were gone and we got talking. Her husband, Mike is the maintenance guy with several accounts, mostly apartment buildings, which keep him hopping. About an hour later, he knocked on the door. First, he offered to fix the dryer. The appliances are OLD and worn out. We knew this was coming and it is time to buy new ones. Then, he directed us to an appliance store he deals with, told us who to contact on the sales force and to mention his name. Within minutes, he said he would phone the guy to let him know we would be there Wednesday. Mike then offered to bring the appliances home if we had to wait a week for delivery and then offered to hook them up for us. Now, get this: he offered to remove the old ones and TAKE THEM AWAY!

Are these the best neighbors or what?!?

They are also getting ready to paint their house. Together. They have been power washing and patching to paint on Wednesday. From our front door, we look directly at their house across the cul-de-sac. The old 1980s gray is going to magically be updated with new colors of mid-century modern sage with dark gray trim.

UTI Update: As I was leaving the house yesterday, I was hit with burning, urgency and chills of a UTI. Pain. I had to get mom to her doctor's appointment so I had to pull it together. It was awful. When I got to her house, nothing. No burning, chills or urgency. Throughout the entire day? Nothing. Now, this can't be a UTI. Symptoms don't come and go so quickly. I contacted both doctors and my endocrinologist said unless there was blood in my last test, he was not going to refer me out. I am to take another test in two weeks. In the meantime, I am going to track these phantom, painful episodes. I mentioned the possibility of stones but he was not interested.

Frustrated.

Monday, August 1, 2016

Bee Gone

Last Thursday, I noticed a bunch of "flies" hanging around my bush in the front yard. When I went to investigate, I discovered this nest of bees in the bush. A nice bee hive. I mentioned it to Michael on Saturday and by Sunday we had the name of an organization whose members are beekeepers. After running our errands and replanting some plants in the yard, I made the phone calls.

My new best friend Ray arrived wearing shorts and a sleeveless t-shirt, marched right up to the swarm, carefully cut away some of the bush so that he could place the entire hive in a box then cut the branch. After a good shake, it dropped into the box. There were a few bees wandering about but he said they should be searching elsewhere in a few days.

He also shared that he was in the back of our neighborhood earlier in the week dealing with another hive. He thinks ours was part of that group.

Neighbors Mike and Ron watched from a distance and were as astounded by the ease of the removal as we were.

While all this excitement was happening, we ran the dishwasher and was beginning three loads of laundry. One load. Done. Second load...NASA, we have a problem. After a run in the dryer, it was still wet. And cold. We have known for a couple of years that we were running on borrowed time. The washer is also on its last leg so today, we are going shopping after I spend the day with mom.

We were looking online yesterday and were amazed that a lot of sites read, "can be delivered in two to three weeks." Really? Don't people usually buy appliances because they no longer work? So, we will be buying from somewhere that guarantees delivery, setting up and taking the old ones away this week. Wish us luck!