Living Well with a Bad Diagnosis - Lung Disease

Monday, September 30, 2013

Recovering AND Recipes for the Week

Sombrero Chicken
Michael is hardly coughing and I only coughed twice so there is evidence that we are better. Almost well. I did test my stamina in the gardens yesterday and was able to work just over two hours. It was easy work of cutting the grass and trimming a few things but, I did it and it felt fantastic to move my body. This morning, I am going to continue to test my body and stamina on a treadmill at the other rehab. I may add a bike and some weights but it will definitely be a simpler, less intensive workout.

William is also better yesterday than on Saturday. Better but far from well.

We also need groceries. It has been so long since I have blogged the dinner menus and recipes for the week. These recipes are for people who are on prednisone therapy who do not process sugars properly. We can't process fruit or yogurt or milk or grains or starchy vegetables or any carbs so we gain weight.

Spicy Island Beef Kebobs - I will not use the plantains. Also, I will use only one pound of meat for 4 servings.
http://www.lowfatlifestyle.com/entrees/entreerecipes/spicyislandbeefkebabs.html#.UkmKIyjFX6c

Sombrero Chicken - Corn tortilla chips will be served with this to Michael. I will also use just a total of one pound of chicken breasts for 4 servings.
http://allrecipes.com/Recipe/Sombrero-Chicken/Detail.aspx?evt19=1

Shrimp Etouffer - Michael will enjoy this over rice.
http://www.lowfatlifestyle.com/entrees/entreerecipes/shrimpetouffee.htm#.UkmK-yjFX6d

I usually have an additional vegetable or cabbage with my meals.

Sunday, September 29, 2013

Bourbon and Meat and Worry

We went out into the public for fun last evening. Traffic was a mess due to the pumpkin farms along the pass. The season has begun. Once we got by them, we flew over the hill. The destination? A very fine liquor store. My mom gives a $100.00 gift card to each family member on their birthday. Michael had not spent his yet and we were on a hunt to buy bourbon. It was a beautiful, warm, early evening trip and we talked and laughed and notice how good it felt just to be dressed and out of the house.

He spent time looking and finally found a new-to-this-market bourbon he had never seen before. A12-year old bourbon (apparently, that is a good sign). An $89.95 bourbon. Alchemist Straight Kentucky Bourbon. Distilled in 1999 in Kentucky but bottled in Glasgow, Scotland in 2011. He was one happy boy. After we got home, he was not feeling well enough to even taste it. Oh well, something to look forward to.

We decided to swing by Max's Opera Cafe for a bite of dinner. I wanted a bowl of their Russian Cabbage Soup. After yet another bloody nose, William suggested that Michael needed some red meat. With that in mind, he ordered their special Prime Rib. All 24-ounces of it. Now, our normal portion of protein is 3-4 ounces so when it arrived to the table, it looked HUGE yet he ate every last bite.

I took a photo to show William that he took his advice. We messaged back and forth. William is sick! Flu-sick. As a mom, it is a horrible feeling to be 800-miles away and not being physically there to take care of him. He probably would not allow me to faun all over him anyway, which is probably why he is an independent adult. So instead, I worry. It occurred to me in the middle of last night that we don't know where he lives.

Towards the end of a tour last summer, the house he was renting was being sold and he had to leave. Mid-tour. It was messy, friends tried to find him a place but in the end, he rented a room in a condo owned by a monitor engineer until the end of the tour. Unexpectedly, he began a new tour. No time to find a new place. He is now booked to November, possible work in December and world tour begins in January. But, I think he has decided to buy a place of his own. Finally. A house would be impossible as he is gone for long blocks of time so he is considering condos. A big, modern, fancy condo for our son? Ah, no. He has his eye on a building he pointed out to me a year ago when we were there. It is a small converted apartment building but its elegance had been lovingly maintained.

Today, I will message again then phone if he is up for a quick chat where I will faun all over him. I will get an address where he is currently ensconced. And I will continue to worry.

Saturday, September 28, 2013

Latest Illness - Lesson Learned

Yesterday's blog reminded me of my first couple of years of adjusting my life to living with a chronic illness. I remember the months of just panic and trying to get information. Having information somehow felt like I was gaining control over my life and the disease. The ILD Support Group fed right into my Type A personality of gathering all the data to gain an understanding about what my future may hold.

This last month of being in the hospital and illness reminded me that there is no control. It is an illusion. There is no control but there is maybe good in having an understanding of the process. While I was in the hospital bed with a series of two hour IVs in my arm, it gave me time to think, to realized that I was scared because I knew what could lay ahead. If the pneumonia did damage or I lost too much lung capacity or if I suddenly spiraled downward, I was well educated about the next step, which would be transplants. I so worried that I was headed there while watching the antibiotics drip into my arm.

It reminded me that the need for transplants could and probably would happen quickly, not a long downhill slide. It reminded me that I have to stay in shape, to keep working out, to keep watching what I eat and to stay under 30 BMI. I also learned that it is important not to be too near the minimum of 25 BMI. While in the hospital and after I got home, I lost a lot of weight in a short amount of time. With pneumonia, I just couldn't eat. Dr. K. had warned me that if I stayed too close to the 25 BMI as my norm, I would probably get sick before the need for transplants and could lose enough weight to take me out of the qualifying weight minimums. I laughed at the time thinking I could eat a pizza and gain enough weight in one meal! But being in the hospital, looking at the food trays, I was unable to eat. If there was a prolonged wait for lungs, I would not be able to hold my weight. It was a huge lesson for me.

Friday, September 27, 2013

Difficult Lessons Ahead

For the first time in weeks, I felt like a happy, healthy adult yesterday. Real clothing, contacts in eyes, and even lipstick. I ran my errands but had a bit of extra time so I went to DSW where I found a cute pair of black low heals with satin ribbons and a new coin purse. Such good prices on both items! As I was leaving, I ran into a neighbor we have known since moving here in 1982. Gayle had two children and after her daughter was sixteen, she was diagnosed with cystic fibrosis. She was super skinny, loved driving fast cars and was a hoot. It was a shock to the family that she was so ill. About 15 years ago, she underwent lung transplants and tragically, died on the operating table.

Gayle and I talked about her daughter yesterday. Currently, there are weight minimums because of the number of deaths, specifically with cystic fibrosis patients as they are always struggling to keep any weight on them. If her daughter was going into transplants today, there is no way they would operate on her until she hit the 25 BMI minimum. It is sad that it took so many deaths to realize that the survival rates were tied to BMI rates.

Driving back to the coast, I met Natalie for a non-stop talk-fest while having our toe nails done. It is great living in a small town. Fong, the owner of the shop, didn't know that Natalie and I knew each other but also tied her to Winnie, who was just in as part of a toe painting party with three other girls. He told Natalie, "Your daughter was here! She talked non-stop! She is leader!" Yup. That's Winnie!

We talked a lot about her job as a music teacher and the kids and Ethan's job and her house hunting adventures. We also talked about her dad. He had been diagnosed with prostate cancer and last week's biopsy reveled that it was Stage 3 and in some surrounding lymph nodes. Treatments begin soon.

After Michael got home last night, he played a voicemail message for me from his phone. It was Mark. We were supposed to go to their house for dinner the day I went into the hospital almost three weeks ago. He and his wife Marianne went through high school together, have two daughters and have been married forever. He was a mess. Marianne was diagnosed with ovarian cancer yesterday. Horrible news. I felt almost sick. My heart just broke for her. Their lives will be in the crisis stage for a time. It will be awhile until they will be able to even begin to plan and learn how to live well with a bad diagnosis. Until then, I will offer any support that would be helpful.

Thursday, September 26, 2013

Cleaning Angels

The housekeepers are due in an hour. There is no way I could clean this house again as the floors alone would do me in! When I was working full time, I tried to clean the house and do the yard work on Saturdays. Oh, and food shop for the week. It was not working. As we could only afford one, Michael asked which I liked better: house cleaning or yard work. At the time, it occurred to me that yard work is rather slow for several months of the year where house cleaning is constant. I answered, yard work.

I remember that William was in 8th grade when we hired our first one. After a few years, she had developed a meth habit along with a boyfriend who was being released from San Quentin. Michael fired her. We waited a few months before hiring Barbaro who was born and raised in Sweden, I learned much later that she lived in a RV and a storage unit, she had huge hands and Michael was a bit afraid of her. When she would tell him he needed to clean the garage, he cleaned the garage! I loved her. When I was diagnosed, she was heartbroken. She would bring me gifts that I knew she couldn't afford. Not long afterwards, I noticed she had a cough that was persistent. Finally, I asked if the local doctor she was seeing had ever given her a chest x-ray? No. She had been seeing him for a year and he kept giving her inhalers and cough syrup. When she demanded an x-ray, she had 4th stage lung cancer. She was able to sue that doctor, was treated at the county hospital by very kind and excellent doctors and spent her final days in a nice hotel room paid for with the $125,000 she got from the lawsuit. I still miss her. We were friends. She taught me so much.

I was ill and really not doing well when she died but I just couldn't hire someone while she was still alive. Before her death, Ron next door had hired a woman who had a business in town. We hired her after Barbaro died. She had a small group of 30-40 year old women who were assigned to a house so we had the same cleaners week after week. She was and is always professional and the women are always kind and very honest. I so appreciate them. They are my angels.

While they are here today, I am going over the pass to pay some bills but not to visit my mom. She has the horrible cold that Michael has been fighting. We are not going to see each other until later next week, if she is better. Later, I am meeting Natalie to have our toe nails done and a got chat. This is going to be a big day for me.

Wednesday, September 25, 2013

Both Feeling Better!

We both have turned a major corner and are really recovering. Michael slept all night without medication. Not a cough out of him! I slept the best in weeks and feel so much better this morning.

Hernia update: All is well. I feel no pain...except when I sneezed yesterday! I will let Dr. K. know that during the next visit but probably won't begin the surgery process until it becomes a bigger pain.

Yesterday, it was glorious outside with a warm breeze so I opened all the windows to clean the cobwebs out of the house. I had lunch in the oven - Stuffed Portobello Mushrooms - was into my third load of wash and was preparing to iron all of Michael's shirts.

Then, the phone rang.

Michael and William both have a syndrome where they get heavy nose bleeds. It seems to run in cycles. Many months/years will pass with no problem then suddenly, they are daily. With the latest illness, Michael had a heavy bleed on Monday night.

He phoned to tell me he had another very heavy bleed and asked if I could drive over the pass to bring him a clean shirt.

Off went the oven, the washer and dryer were stopped, all the windows were closed, I put on real clothing and ran my fingers through my hair and was out the door within minutes. He phoned again about halfway into my trip to say that he decided to come home with me.

I think he was weak from two long, heavy bleeds.

We stopped at a local deli to buy lunch and spent the rest of the day together. He napped while I continued on my quest to finish the laundry and all the ironing.

So the plan is to put a dark colored t-shirt in his car in case he bleeds on today's shirt, I reminded him to place a bag of ice on his neck if it starts to bleed but hopefully, it will all calm down. Heat seems to play somewhat of a role and the weather is supposed to be cooler today.

The sweet thing he told me was that he was so touched that everyone at work worried about him. He said it felt like he was in a roomful of mothers. I told him to thank them for me. They took good care of him.

Tuesday, September 24, 2013

First Day Back into the World

So, I made the trip into the city yesterday morning, parked and was wasting about 10-minutes in the lobby as I was too early to head up to the lab for the ultrasound. Suddenly I heard, "Hello!" There stood Little Carol from my rehab class. There were two Carols: Little Carol and Dog Carol. The last time we saw each other was over a year ago when we met in the same lobby on the day she was going to be listed on the national transplant list.

Carol had been ill all of her life. We are about the same age and each of us has a son also around the same age. We are both blessed with husbands who adore us. Due to lifelong issues with her lungs (she has an immune disorder) she was also petite. Small. So very young looking. Little Carol.

There before me was Carol but maybe 70+ pounds heavier. She was pulling at her clothing and clearly was uncomfortable about the additional weight. I said, "Ah, prenisone!" She moaned. I told her what I had learned about processing prednisone and what foods to avoid and she said, "I have been eating yogurt for breakfast every morning!" She thanked me. Now she feels she can do something about getting rid of the additional weight.

She was transplanted just over a year ago and so surprised that it was not as awful as she had anticipated. Her health had fail so far that she was in the hospital and was considering a trachea. She said she was within days of being too ill for the transplant. After five days in the hospital, she received her lungs.

Her donor was a 19-year old from a city about 200 miles away, very unusual. Since she was so small, the donor must have also been tiny. He was washing his car when he was shot in the head. They kept him on life support to keep the organs viable and his family donated everything possible including skin. What strength! There are many people alive today because of this young man and the kindness of his family.

Towards the end of our conversation, I felt a tap on my back. There stood Dr. K.! Carol disappeared (she was there for her weekly blood test) and Dr. K. asked how I was feeling. I told her that I had made a turn for the better and was headed upstairs for the ultrasound for the hernia. We said our goodbyes, I went to the lab and waited. They were running about 30-minutes late at 9AM! Finally, the ultrasound. The technician searched. And searched. She called in her boss who searched. And search. No hernia was found but they said I had a nice healthy right ovary! Since I am no longer coughing so hard, I could not replicate the pain. They also said it just may not be "out in bloom," their words.

I left, headed to mom's after a stop at the butcher's, we chatted then had lunch together at Nordstroms. I had been worried about my car. A light came on during the drive to the city that indicated that the sensor for the oil was not working and to contact the dealership. I phoned Michael. He said he would check the oil when he got home. I noticed that when I sat in traffic, the outside temperature would rise. Not a good sign.

After lunch and a stop for groceries, I had everything packed up in insulated bags in the trunk and I headed home to the cooler weather. It was in the 80s yesterday and I was headed towards the coast expecting low 70s. I was concerned about the car and, as long as I was moving, the temperature gauge was stable. Then it happened. The road through the pass, a normal 10-minute drive - was suddenly developing into a problem. I turned a corner and the traffic was stopped. I turned off the car. We all sat. Windows down. Sun streaming in. I began to sweat. We sat for an hour. No news alerts on my cell phone. I finally pulled up 511.org and found out there was an accident with major injuries, a head on, and the road was closed. We would move a bit then stop. Finally, I noticed cars coming in our direction, then we would move. Ah! One way traffic. After just over 90 minutes for less than a 10-minute drive, I arrived home totally exhausted, sweating and still had to unload all the groceries. It was a tough way to end the day.

i noticed the answering machine had a message. It was Dr. K. Since they could not find the hernia, today's appointment with the surgeon was cancelled. She said that it may resolve on its own but if I continued to have pain, an ultrasound could be scheduled.

I AM NOT HAVING HERNIA SURGERY!!!! That is the big news. No major surgery. We can go back to our lives.

And the oil? When Michael got home, he had to put two quarts in. Two quarts! The little light went off.  I just hope I did not do damage to the motor.

What a day. What a way to jump back into the world and our lives. I slept well last night!

Monday, September 23, 2013

Back Into Life

I am up and dress and ready to go, except that it is 6AM. I am leaving in an hour for the long drive to the university hospital in the city during rush hour! Should be fun. It usually takes an hour to get there, park and to get settled but this time of the morning, it could take up to two hours.

No coffee, no breakfast, no medications.

The ultrasound is scheduled to have a peek at my hernia, caused by years of immunosuppressant drugs and pneumonia coughing fits. Afterwards, I am going to the butcher's then to mom's for some lunch. It is going to be the first day I am out into the world in over a week.

I am feeling so much better this morning. I only took one pill for my coughing yesterday instead of three but I did not sleep well last night. After cutting the grass, I thought I would fall into bed in exhaustion. Nope. Tossed and turned. Maybe I am anxious about getting to the appointment this morning.

Tomorrow? Same time. Same drive. I have an appointment with the surgeon.

Sunday, September 22, 2013

Bored and Boring

It was a down, wet day yesterday. I didn't cut the grass. I didn't do much except take a nice, long nap late in the afternoon. I do feel a bit better but the cough, well the cough is still there. When the medications come close to wearing off, it begins again.

Michael took his codeine cough syrup before bedtime last night and slept like the dead. He still sounds horrible but feels better for having slept. My goal of keeping him home today is not working. He wants to check-in somewhere then buy a new pair of shoes for work but I think he just wants to move his body. It is so unusual for him to stay in. He doesn't do it well.

We are watching the Formula 1 from Singapore this morning. It is always a nighttime race because of the heat of the day. Big news for next season: The Iceman, Kimi Raikkonen is leaving Lotus to go back to driving for Ferrari. We love him. His interviews are hilarious.

I think I might try to cut the grass this morning. Yes, I will wear my oxygen and a mask and a hat and long sleeves.

William is back home for two weeks before a solid non-stop month-long concert schedule. He loves those. He says he gets into a groove. There is a definite rhythm to touring. He has foodie friends with him on this tour so he is eating well. They take off together to find great little dives someone told someone about. Yes, they do eat in some of the finest restaurants in the world but his favorite is that little place with the Grandma cooking in the kitchen. During this break, he will make his healthful foods, enjoy his daily twenty-mile bike rides, attend a wedding of the lead singer of a group in which he performed and just relax. He mentioned that he might come for a visit in November, after the tour.

Saturday, September 21, 2013

Downtime for Both of Us

Michael is not getting better. He is coughing, has a horrible sounding voice, is tired and just not well. We are on hold on the phone waiting for the advice nurse right now and will probably have to make the long drive to his hospital's emergency room.

I slept well last night and awoke around 3AM with a cough that persisted on and off until 7 this morning. But I slept and feel rested and stronger this morning. It is expected to rain today but there is a beautiful morning sun shining through the clouds.

The advice nurse just told us it is just a cold and a virus but is writing a prescription for something to help him sleep at night. No emergency room visit. Now I am having a problem with him not STAYING HOME! He thinks he is going over the hill to do some things. I am begging him to stop and to let his body heal. Men!

Yesterday, I received an email from Dr. K. reporting that the surgeon for my hernia requested an ultrasound before our appointment. With the magic of one of the women in her office, I got an emergency appointment on Monday at 9AM. I am seeing the surgeon on Tuesday at 9:30AM.

Monday after the ultrasound, I am planning to spend some time with mom. She is so lonely without me! We'll have a nice lunch and do some food shopping. Not too much.

But for the weekend? Downtime for both of us. Lots of rest. Lots of TV. Lots of naps. I live an exciting life!

Friday, September 20, 2013

Glorious Sleep

I need to write it: "I love Dr. K.!" When she asks, things happen. When working with a huge system like my university hospital, things can fall through cracks, it usually takes time for a new patient appointment so one must work on patience. Not with Dr. K.'s name attached to a referral! The day after it was sent to a specific surgeon to address my new hernia, I received a phone call to schedule the pre-op appointment for NEXT TUESDAY! Wow. That was quick! They also emailed paperwork to complete and bring to the appointment. Within minutes, I was able to fill in all the blanks on all the forms and everything is ready to go. Love that.

The medication to help control my coughing so I am able to sleep has kicked in as well. For the first time in weeks, I stayed in bed all night. No recliner! After six hours of sleep, I was awake for about two hours before drifting back to sleep for another three hours. That is the most sleep I have had in such a long time. I did awaken with pain on my left side about two ribs down - I think I pulled a muscle while coughing last night. Hopefully, it will go away later today.

My secret plan: I am going to try to cut the grass today. The rains are due tonight and the grass has not been cut in two weeks. I am itching to get out there. I will wear my oxygen and a mask and only cut the grass. No trimming. No weeding. Nothing but the grass. Michael is not going to be happy!

Thursday, September 19, 2013

Hitting Bottom

I hit bottom last evening on the way home from seeing Dr. K., my lung doctor. Overwhelmed with the latest health issues and sitting in massive traffic jams, I felt the tears beginning. Finally breaking through traffic, I had to pick up new prescriptions at CVS where I waited 45-minutes for the order to be filled. This was after they had received it two hours earlier. I was done. I was almost sleeping on my feet while I waited. Finally, I got home at 7PM. I was totally spent.

The news: I have a full blown cold, severe bronchitis and she confirmed that I have a hernia from coughing so hard with the pneumonia. She sent a referral to a surgeon to repair the hernia as soon as possible. Great. Another surgery. She prescribed Tessalon Perle three times a day to try to control my continuing cough and Doxycycline to help the bronchitis.

I didn't sleep well again last night. I don't know why, the cough was a bit under control with the help of the new drug and I was tired. Maybe overly tired.

Again, I see a long recovery ahead. I realize when I hit bottom it is because I am so very sick of being sick. I want my life back and it appears that is going to take a lot more time. This is a lesson in patience.

Wednesday, September 18, 2013

Webinar Saturday - The Coalition for Pulmonary Fibrosis

I haven't written lately about the fantastic organization, The Coalition for Pulmonary Fibrosis. I met the founders many years ago and their director was at a dinner before my speech last year at the American Thoracic International Conference. They read this blog. What I love about them is that they directly fund specific research. Important and directed research. They are making a difference.

They are offering a Webinar this Saturday and the information on how to join them online is below. It will be worthwhile.


This is an invitation to a free Pulmonary Fibrosis webinar being held on Saturday, September 21!  Also, if you're in the area near Johns Hopkins' Bayview campus in Baltimore, MD, you can join the pulmonary fibrosis patient event live!  Details on both are below for you.
TO JOIN THE LIVE EVENT
To reserve your seat now ONLY for the free IN-PERSON MEETING ON Idiopathic Pulmonary Fibrosis (IPF) at the seminar at Johns Hopkins on Saturday, Sept. 21Reserve now by emailing Teresa Barnes at tbarnes@coalitionforpf.org TODAY! (DETAILS FURTHER DOWN IN THIS EMAIL)
TO JOIN THE WEBINAR
As part of National Pulmonary Fibrosis Awareness Month, the American Thoracic Society, the Coalition for Pulmonary Fibrosis and the Johns Hopkins University School of Medicine presents a free webinar on  pulmonary fibrosis. The webinar is being held on Saturday, September 21, 2013 at 10:15 am ET and will be hosted by Sonye Danoff, MD of Johns Hopkins University School of Medicine.

Title:
One of These Things Isn't Like the Others: Distinguishing IPF From Other Forms of ILD
Date:
Saturday, September 21, 2013
Time:
10:15 AM - 11:15 AM EDT
 IF YOU ARE JOINING THE WEBINAR, FOLLOW THE INSTRUCTIONS BELOW (PLEASE DON'T EMAIL TERESA BARNES
TO JOIN THE WEBINAR)
After registering you will receive a confirmation email containing information about joining the Webinar.

System Requirements
PC-based attendees
Required: Windows® 8, 7, Vista, XP or 2003 Server
 
Mac®-based attendees
Required: Mac OS® X 10.6 or newer
 
Mobile attendees
Required: iPhone®, iPad®, Android™ phone or Android tablet

Space is limited.
Reserve your Webinar seat now at:
https://www1.gotomeeting.com/register/443416896

TO JOIN US FOR AN IN-PERSON EVENT AT JOHNS HOPKINS BAYVIEW CAMPUS
The Coalition for Pulmonary Fibrosis is proud to invite you to a free pulmonary fibrosis seminar at Johns Hopkins Bayview Campus in Baltimore, MD on Saturday, September 21st.  This IPF Event is being co-hosted by the CPF, the American Thoracic Society and the Johns Hopkins University School of Medicine.    
Please see the agenda and list of speakers further down in this email.
patients at PF event at Harvard spring 2008
WHERE:  Johns Hopkins Asthma and Allergy Center Auditorium 5501 Hopkins Bayview Circle, Baltimore, MD 21224
WHEN: Sat, September 21st from 9:00 am to 2:00 pm.
WHO: Open and free to all IPF patients, family members and the general public.Complimentary lunch will be provided. An oxygen refill station will be onsite for those attendees with portable oxygen concentrators. Parking is available in the Mid-Campus Lot directly across the street from the auditorium. 
RSVP:
Please RSVP by EMAIL: to Teresa Barnes: tbarnes@coalitionforpf.org 

Sincerely,
The Coalition for Pulmonary Fibrosis

PROGRAM:
• 9:00-10:00 am - Registration and light breakfast
• 10:00-10:15 am - Welcome from the ATS Mr. Courtney White
- Welcome from the CPF Ms. Teresa Barnes
Sonye Danoff, MD, PhD,Co-Director, Johns Hopkins ILD/IPF Program Associate Professor of Medicine, Johns Hopkins University School of Medicine
Co-Director, Johns Hopkins ILD/IPF Program Associate Professor of Medicine, Johns Hopkins University School of Medicine
- Welcome from Johns Hopkins ILD Program
Sonye Danoff, MD
• 10:15-10:40 am - “One of these things isn’t like the other: Distinguishing IPF from other forms of Interstitial Lung Disease”
• 10:40-11:15am - “Making sense of all the tests: Chest CT scans, Pulmonary Function tests and More”
• 11:15-11:40 am - “Little things make a difference: Oxygen, Exercise, Travel in IPF”
• 11:40 am -12:05 pm - “Treating IPF: Update on Clinical Trials in IPF”
• 12:05-12:15 pm - Questions for morning speakers
• 12:15-1:00 pm - Lunch with speakers
• 1:00-1:30 pm - “Other Options: Lung Transplantation in ILD
1:30-2:00 p.m. IPF discussion
Speakers:
Sonye Danoff, MD, PhD, Co-Director, Johns Hopkins ILD/IPF Program Associate Professor of Medicine, Johns Hopkins University School of Medicine
Maureen Horton, MDCo-Director, Johns Hopkins ILD/IPF Program Associate Professor of Medicine, Johns Hopkins University School of Medicine 
Leann Silhan, MD, MPH, Johns Hopkins ILD/IPF Program Instructor, Johns Hopkins University School of Medicine
Elizabeth Schonhoft, RN, Nurse Coordinator, Johns Hopkins ILD/IPF Program, Johns Hopkins University School of Medicine
Mary Armanios, MD. Associate Professor of Oncology, Johns Hopkins University School of Medicine

Tuesday, September 17, 2013

Hello Hernia!

It was a rough night. I coughed on and off until 2:30AM when I finally got up and went into the family room. The recliner allowed me to sit straight up and the coughing stopped. Michael, on the other hand, coughed throughout the night. He is staying home again today. Naps all around!

After I got the last shot into my lower stomach to prevent blood clots while in the hospital, it has continued to be sore. I thought that maybe they hit a muscle instead of fat. It hurt every time I coughed and felt like something was ripping. Now I have to support that area while coughing or it REALLY hurts and I don't think it was the shot. Yes, I think I have a hernia from coughing too hard. Another thing to talk to Dr. K. about when I see her on Wednesday.

The goal this morning is to gather enough strength to shower, dress then go into town for a hair cut after lunch. And make dinner. With both of us ill, it comes down to the basics in life: food, showers and sleep. (And getting my roots done!) Nothing else matters. We both are not in the mood to talk with anyone on the phone. Just don't have the energy.

Monday, September 16, 2013

Baby Steps

It was a quiet day. Michael slept most of the day while I watered the gardens, took out the garbage for pickup this morning, made lunch and dinner, set up separate bedrooms for the night and finally falling into bed. He broke his fever during the night but I want to check it again this afternoon for full confirmation.

He feels better.

I am still coughing so much at night that I had to move to the den chair but hardly at all during the day. We need a few things at the market and I have to swing by the bank, but that is all that is on the list of things to do for today.

The good news is that my mom is still well. I did not share it with her!

My sister's husband retires at the end of the week. They are going to celebrate with a party of all the people from his work. Next steps. It will be fun to watch as he navigates his new path.

Sunday, September 15, 2013

Now a Caretaker

Fever. Cough. Not me, Michael. I actually am feeling better. The coughing is an occasion now instead of the standard. But Michael? The coughing is increasing and a 99 degree low-grade fever had appeared this morning. Now, I will try to talk him into calling the advice line at Kaiser to let them know that he has had an exposure and appears to have contracted pneumonia. Maybe we can start the antibiotics.

It will probably take a couple more days of encouragement before he makes the call. Stubborn.

I slept in the chair until just after midnight when I realized my butt was sore. Really sore. Sore of sitting. Sore of sitting up in order to sleep. Painfully sore. I headed back to bed where I slept like a baby until late this morning.

So my job switches today from being ill to being the caretaker.

Saturday, September 14, 2013

Michael Sick?

And now for the bad news: Michael is coughing. He never coughs. He never gets sick. I am afraid I have shared this with him. We did go food shopping after dinner last night so we have enough food in the house for a week. I can't imagine us both being out of commission.

I did take mom to her post op eye appointment yesterday, marinated some chicken and made a dinner of Sesame Chicken with veggies. I think the combination of the two things was a bit too much right now. I ended up in the family room again last night as the coughing began around midnight. The plan for today is to not leave the house. I will work a couple of loads of wash into the mix but really, nothing else.

When I see Dr. K. next Wednesday, I don't know if she is going to want a quick lung capacity and DLCO pulmonary function tests, which can be done right there in the clinic. If so, it will be interesting to see those numbers. I know, by remembering the feeling of having a DLCO at 7.7, that my numbers were horrible until a couple of days ago. I would guess that they had dropped into the 8 or 9 range. That feeling is gone. Thankfully.

The photos of the massive floods in Boulder, CO have been shocking. We love Boulder. We can't imagine the devastation to that sweet city. With that same storm, my brother in central New Mexico is dealing with the threat of flooding this morning. It has been raining hard for the last four hours. I so hope they escape this unscathed.

Friday, September 13, 2013

Needing Time to Recover

Oh, this is going to take time. I see very slow progress everyday but at least it is progress! The coughing is lessening a bit everyday though I still go through bouts of coughing so hard, I am left shaking. There is no way I could do some food shopping right now as the energy it takes to shuttle them into the house then to put it all away is beyond me now. Maybe next week. Hopefully, next week.

While in the hospital, I was given a shot everyday to lessen the chance of blood clots into the fat on my lower stomach area. It hurt. It hurt going it. It hurt afterwards. The last shot bled for a bit and even now when I cough, that one still hurts a lot. There are little black bulls eyes where I was injected. Three little black areas. It is amazing how much it still hurts!

I am showering before driving over the pass to take mom to her post op eye appointment this afternoon. It is on a campus far from her home and difficult for her to access as she would have to get on a freeway. That is not good for anyone!

It is odd what I have had to change due to this bout of pneumonia: I had an appointment on Wednesday with the dermatologist to check some bumps on my legs. There is no way I could drive the hour of heavy traffic, endure the stress of finding close parking and the long hilly trail to the building for this appointment. Cancelled. Looking into next week, I had scheduled a dental appointment for teeth cleaning. There is no way I could lay flat without coughing for 45-minutes. Cancelled.

What I didn't change is a hair appointment. The roots need some attention.

It is hard to look out into my beloved gardens to see them in need of attention. My fingers itch to trim errant growth, pull some weeds and cut the grass. Not going to happen soon.

At dinner last night, I reminded Michael that this is short term. I will be back. It will take some time but I didn't want him to worry that this is permanent. I feel very needy as there is not a lot I can do on my own right now. Not a comfortable position to be in for me.

It is all going to take some time.

Thursday, September 12, 2013

Refocusing on the Positive

After I was diagnosed, going through two lawsuits, being followed by private investigators, leaving my job, adjusting to a whole new life of being diagnosed with a fatal disease, we often tried to focus on our son as he was the only positive in our life. He had begun his life touring with a major group, got his first Gold Record which he gave to us, had his first Grammy nomination, travelled places in the world he had never expected to see, ate at famous restaurants, found himself at a Rolling Stone party at the Chateau Marmont (where he phoned from a corner near a plant) and basically created his career.

Through the years, as the number of Gold Records grew with a Platinum one also thrown in, we got to know the members of the group and we had been to a ton of his concerts in a few states, it became normal for us to hear about him staying at a very famous person's apartment in New York for the summer or a major singer's place in Paris for a few days or eating at several Iron Chef's restaurants. At the end of a tour, I would not ask about the concerts but about the best food he had eaten on the trip. The early excitement of it all became...just a job.

The past few days with the scare of my major pneumonia, we sort of returned to those exciting early times. It has been very difficult mentally. Am I suddenly going to need lung transplants? Will I ever recover from this? We found ourselves trying to refocus on something positive and recently we realized that we are following William's current tour more than usual. He is on the road as head of live sound with a new group for him but they have been around for a decade and just released a new album. Album? Do they still call it that? For their first concert of the two-month tour, they played a major, historic venue in LA this week. I contacted him to ask how it went. William is very critical and he never seems totally happy in his reviews. He usually says it went okay or it was awful or worse. I was surprised when he replied, "It went really well. The kids went crazy." It must have sounded fantastic for him to give it such high marks. Having a good first concert takes the pressure off of his shoulders.

I did nothing yesterday, except to talk on the phone for a couple of hours with my friend in North Carolina and to get the house ready for the housekeepers this morning. While they are here, I am going over the pass to spend the two hours with mom. I expect to be exhausted when I get home. My stamina has been greatly reduced. The good news? Michael is bringing dinner home tonight. Perfect!

Wednesday, September 11, 2013

Better, Thankfully

I was a bit worried when I went to bed last night. There had been no improvement of my breathing or coughing since leaving the hospital on Monday evening. Was this the new normal? Was I going to have to deal with coughing constantly? Instead of sleeping in the recliner, I went to bed and, shockingly, I slept. Around 12:30, I woke up and started coughing so I moved into the family room and the recliner.

The coughing was not as harsh or deep as it had been. I also immediately fell back to sleep and was awaken by Michael making coffee at 5:45. Last night was the most sleep I have had since last Thursday.

This morning, I am breathing better and coughing less. There is a significant change. I am getting better.

Utter relief.

Today's plan is to do nothing but rest and sleep. The housekeepers are due tomorrow morning so I am planning to drive over the pass to spend those two hours with mom. It will take a lot of energy to get out into the world again and the worry is doing too much and backsliding.

Tuesday, September 10, 2013

Home with Stories to Tell

I have so much to share but not a lot of energy. After two days of 14-16 IV bags (I lost count) of a variety of antibiotics fed into my veins, I am home. When they agreed on a specific antibiotic, which can be taken by mouth, I was able to be released from the hospital Monday afternoon.

I am home. It is going to take time to recover.

The internal medicine team, who were in charge of my life in the hospital, believed I had pneumonia separate from my ILD. Dr. K. came by yesterday morning and said she believed that it was an exacerbation of my disease. I believe her. She is never wrong! We are meeting a week from Wednesday so she can listen to my lungs and we can talk about what this all means going forward.

It was scary. I could not stop coughing. I could not sleep because of it.

I know most sick people are not in good moods and probably scared so I tried to maintain my humor and remembered to be kind to all the staff in the hospital. One of the ER nurses loved our humor and I made him laugh a lot while we waited for tests to come back and for the docs to make their decisions. He liked us so much that he worked the phones and got me a private room. Earlier I had asked for a manicure and a massage and a fine steak dinner when I went up to a room. When he came back to us to say he scored the room, I asked, "But, what about the view?" He laughed and said, "It is there along with the manicure, massage and dinner. Oh, and cocktails." Actually, it was a beautiful room with views of the tree covered hills. It made a huge difference to my comfort. I can never thank him enough.

It was also interesting that he found the room on the floor for liver, pancreas, and kidney transplants. I was the only non-transplant person there. These were very high level nurses and I had such excellent care. As one said, "We don't see a lot of your type around these parts." It was a blessing to be there. I had deep conversations with respiratory therapists at 2AM, hugged nurses who were leaving their shifts and had a deep discussion with a young male assistant who had an autistic son. He opened up and was able to talk about it. Later, he would come in just to make sure I was comfortable and would want to do anything for me. He was teary when he hugged me goodbye yesterday.

What I learned was to ask questions of all the people who came through my door: Do you live in the city? Do you have children? How old? Just with those simple questions, each person opened lives to me, their struggles, their fears. It was really remarkable. Each told me I was their favorite patient. I didn't demand anything. I thanked each person every time they were leaving the room. I really appreciated their hard work and dedication.

One of the student doctors working my case said, "You are amazing. You are so in charge of your care and do everything you need to do. We never see this." And isn't that sad? They were amazed that I knew so many of my past PFT and blood test numbers. There were more amazed that I knew and understood all my medications. What also helped so much was that I brought along a list of my current medication and the reason for taking each one and a list of all my past illnesses and hospitalizations. The only other thing I wish I had brought with me was my family health history going back five generations. Next time.

As patients, we are in charge of past knowledge of our care. We need to do our part by taking care of ourselves, eating well, sleeping well and exercising everyday. That is our job. The doctors will put more of their time and energy into our case if we do our part.

It is good to be home.

Sunday, September 8, 2013

In the Hospital

Well hello. Guess where I am! I have a lovely private room at my hospital in the city. The cough was so horrible on Friday night that I never slept and knew something was wrong. I contacted a friend in Ohio who I met through this blog and she encouraged me to phone the on call doctor at my lung clinic. 

After hearing my story and cough, the doctor told me to check into the emergency department ASAP. After a ton of tests and X-ray, it appears that I have either a bacterial infection or virus in the upper right lobe. Lots of wheezing. They said that I needed to stay for a few days for I Vs of a broad spectrum of antibiotics. So far, with other treatments, the coughing has greatly subsided and I hope to sleep more tonight.

A dear Capuchin brother we have known since the early 70 s came by to give us communion and the blessing for the sick. It was so beautiful. The prayer included giving me courage when I lose hope and I love that he said a blessing for the doctors and nurses. I got teary.

In reality, I don't expect to escape until later in the week but I am in good hands.

Saturday, September 7, 2013

Horrible Night

I felt fantastic yesterday. Almost normal. After a good Starbucks run, my cough subsided and I felt...good. Mom had her very minor eye surgery, which was fast, we went to lunch and ate outside while watching the world go by. It was so nice. I drove mom home, hit Trader Joe's, drove over the pass to find that it was about 80 degrees here by the ocean. So rare. Too hot!

While doing four loads of wash, I made dinner featuring medallions of pork tenderloin wrapped in a piece of cooked bacon and a salad. With that done and in the refrigerator, I began the chocolate cake for today. While it cooled, I made a ganache then pour it over the cake and cooled it for two hours. Later in the evening, the pralines were hot and ready to be poured over the ganache. It is ready for our party over the pass tonight where it is going to be in the mid-90s. I am going to bring my supplemental oxygen as I just don't breathe well in the heat.

Around 7:30 last night, Michael took off with our neighbor Ron for a fantastic concert featuring Wayne Hancock. He had read about a very famous young guitarist and recognized him on the stage last night. Said he was outrageous. He didn't get home until around 1AM.

In the meantime, I could not sleep. Every time I started to relax into sleep, horrible noises escaped from my chest and I continued to cough all night. I slept very little and ended up on my recliner in the family room. I am stiff, sore, tired and still coughing this morning. I feel horrible. I am hoping once I am up and moving that I will feel better, able to sleep a few hours this afternoon and still make the small dinner party tonight. Oh, I also need to iron Michael's shirts and my outfit for tonight after going to the bank this morning....

Friday, September 6, 2013

Lovely Cough

I drifted in and out of sleep all day yesterday. No fever present but the cough has grown to be productive. The antibiotics have begun. Today, I need to be with mom for some minor surgery at the eye clinic, lunch then food shopping as we have no food in the house. After dinner tonight, Michael is going to a concert with our neighbor Ron to see Wayne Hancock. A late night. I never sleep well until he is next to me.

My 88-1/2 year old rehab class friend, Sherman is also having some surgery today to repair a tendon in his right hand. I phoned him yesterday and he was a bit nervous about it all. I promised to phone later today to check-in with him. Any surgery at 88-1/2 is a concern!

The other concern is the weather. It is hot. It is humid. It is totally unusual. As with most people with lung disease, I have a difficult time in the heat. With this cough, it will be even more difficult to breath, function and not totally sweat. The hottest day is expected to be Saturday when we have to drive over the pass where it will be even hotter. We have been invited to Mark and Maryanne's house for dinner and I will be bringing my chocolate cake covered with pralines for dessert. Somehow I need to make that....At the party will be a mutual friend, Nancy, whom we have not seen in many years. She went to high school with Mark and Maryanne and they have kept their relationship going through the years. Nancy was married to Jeff. They both worked at a body shop they owned, had two children and Michael worked for them for years. Sadly, they divorced. The family fell apart. The children struggled. They struggled individually. Michael rarely hears from Jeff and we have only seen Nancy once since their divorce. It will be great to visit with her, hear about her children and we just hope she is doing well.

And I hope to be feeling better by then!

Thursday, September 5, 2013

Cold Headed South

Well, I thought I was getting away unscathed. Hah! The cold decided to visit my lungs yesterday. I ended up not going to yoga but rather, to bed. After sleeping well over an hour, I hit Safeway for a few things then back home for another two hour nap. No appetite was a sign it was all going bad.

I did go to the orchestra rehearsal last night and came home clearly sicker. I coughed all night.

This morning, I hauled out some Cephalexin that Dr. K. prescribed for me over a year ago (it has not expired) and will take it with food at breakfast. I also will send her an email so she will know things are amiss, especially if I don't get better after this drug run.

The plan today is to stay in, rest and do nothing. So hard for me to do.

Wednesday, September 4, 2013

Birthday Recap

Michael had a nice birthday. He got lots "Happy Birthdays" at work, the cake was eaten, one guy gave him a bottle of wine and he was so touched by all the attention. William phoned just before we went to dinner. He is in Southern California for a week of rehearsals before a two-month tour working for a group that was huge about ten years ago. They are releasing a new album, thus the tour. Several of his friends are also working this tour so it should be fine.

We celebrated Michael's birthday with dinner at a place just down the road, overlooking the harbor and watched the sunset. He had their famous Lobster Roll with a bowl of clam chowder while I had just a bowl of gumbo. We are back in the diet saddle again beginning this morning. I would love to lose about six pounds and maybe more....focus is on diet and exercise. Everyday.

This morning is the descent into the yoga hell class. Afterwards, I will need to shower before the first rehearsal of the season with my little local orchestra this evening. That will eat up a lot of calories!

The light has changed, Fall is here and there was even a bit of morning sunshine this morning. It is still unusually muggy here but I am not complaining. It was nice to sit out in the garden without a jacket last night. We are still sleeping with the windows opened and just a sheet. So unusual.

Tuesday, September 3, 2013

Michael's Birthday

It's Michael's birthday. His requested German Chocolate Cake is ready and waiting for breakfast. I will run a slice by mom's this morning before going to the rehab class. We have no idea what we are doing for dinner tonight. It is going to be that kind of day.

How is he beginning his birthday? Dentist appointment at 8:00! Nice teeth for a new year!

When he was a little boy living in the projects in Long Beach, his Grandma Dills would make a pie, a whole pie just for him, for his birthday. He always requested Banana Cream Pie and the twin always had Chocolate Creme Pie. He says it was magic. He would look forward to it for weeks. A whole pie to eat just for himself! It would be gone in minutes!

Grandma Dills married Grandpa Dills when they were just kids in Illinois. They quickly had six children while he tended a bar and she cooked in the back kitchen. Years later after some drama, she left him and moved to California to live near her Victorian mother, who had retired there. Michael remembers her house filled with horsehair sofas and fine, breakable things. Grandpa Dills followed her after a bit, asked for forgiveness, became an electrical contractor and they fell into a good life in sunny California.

Michael's Victorian Great-grandmother is a whole other story. She actually worked for the mob in Illinois, half way between St. Louis and Chicago. She ran a house. Yes, that kind of a house. As this was during prohibition, they ran the liquor through the basement. She kept the money from the upstairs activities while they kept the money from the illegal liquor downstairs. She told Mary a story about being raided by the Feds. Her sons were in the basement shining the shoes of the men upstairs while the Feds searched the basement, she sat on the stairs telling them that she had nothing. After a thorough search, they left. It was then that she stood up and removed a tread on the stairs to reveal the liquor, which was stored in the stairs. He comes from interesting people!

Happy Birthday to the love of my life. May he have many, many more.

Monday, September 2, 2013

Celebrating Our 40th Anniversary Together

It was a fun day. We celebrated 40 years married being together, talking about our lives together, trying to speak with our son (he is phoning today...in a concert when we called him), lunch out and dinner in. We showered and dressed up and went into the world to hunt and gather our food for the day. A gorgeous rib eye steak on the bone and two humongous shrimp were placed on ice in the cooler first, cold Champagne quickly followed, then we hit Draegers, which is a very expensive market for the very wealthy. We bought the caviar, blinis, creme fraiche and mushrooms there, which were also put on ice. We were hungry for lunch.

We went to a new place. Very simple. Extremely good. I even brought the beet salad home for our dinner. It was amazing. I think they will end up marketing this place as a franchise. Here is the URL:
http://www.fare-pdq.com/   We tried driving home over the pass but the exit backed up the freeway for miles, so we headed south to our most favorite drive. We were totally shocked to find that it also was backed up onto the off ramp. We finally made the stop sign in town and only three cars were going our way. It turned out to be an easy trip to the ocean. Beautiful. Warm.

The fun began around 4:30. The BBQ was hauled out and lit. WHOOPS! Michael forgot to buy propane. We jumped into the car and sat in traffic and finally got to the hardware store in town only to discover they were OUT OF THE SMALL PROPANE TANKS! One lady suggested the larger one. It would fit. Sold!

Back to the house, we made the caviar appetizers and opened the champagne.

The hardwood briquettes were finally hot enough to cook the massive shrimp, which we peeled, cut up and dipped into butter. It tasted like lobster.

Then the steak was added to the grill. The master chef cooked it to perfection while I slowly cooked the mushrooms on the stove.

So our feast was the salad from lunch, mushrooms, the fantastic steak which we will eat again for dinner tonight. We listened to music in the living room and chatted some more.

It was a perfect anniversary together. I am so happy we changed our plans to celebrate in Las Vegas. It was hot and filled with people this holiday weekend. This was better. This was us.

Sunday, September 1, 2013

Forty Years Ago Today

Forty years ago today, the two of us paced a hallway on the side of the church. We were nervous but we just wanted the ceremony over so we could start our life together. The honeymoon was a horrible mess and hilarious - http://livingwellwithabaddiagnosis.blogspot.com/2010/11/famous-honeymoon-story.html

But, I love how we met and how we fell in love so quickly - http://livingwellwithabaddiagnosis.blogspot.com/2009/11/best-husband-in-world.html

Life happened. There were so many good times and just a couple of hard times. Our son arrived eight years later after we bought a house, traveled the world, had fancy cars and were ready for him. I stayed home for nine years before going to work at the school where I got sick. He always remembers our anniversary and phones from wherever he is in the world.

I always say that I must have had a difficult past life because this one has been so lovely - parents who adored each other, met and married the perfect person for me, had a fantastic son, never starved, a music centered life. Pretty nice.

We are having lunch together over the pass before shopping for the caviar, blinis, champagne, a good rib eye steak, sauteed mushrooms and toasted marshmallows over the BBQ fire for dessert. Sounds just about perfect.

But, what we are really celebrating today is that I am still alive, despite the doctors prognosis. We will hold our champagne glasses high and toast to another ten years to celebrate our 50th together.