Living Well with a Bad Diagnosis - Lung Disease

Tuesday, June 30, 2015

Tumor Begone!

We spoke with Doug last night. The surgery to remove his brain tumor is scheduled today at noon in LA. He has been on a large dose of a super steroid, which also has totally cured his psoriasis, and his first question to me was, "How have you lived on this stuff for ten years?"

All his pains are gone. He has boundless energy. He feels like "king of the world." I warned him not to start ironing their sheets as it feels so good that after he is off the drug, he will still want his sheets ironed.

He was talking very fast.

I learned that the tumor has been in his brain a long time and is just now causing vertigo. It is behind the left ear in the brain. Oddly enough, the vertigo goes away when he is in the pool and when he drinks beer. Hopefully, it will be gone for good after the surgery.

We both commiserated about being in ICU. He had been there for 24-hours during the diagnosis process and we joked about having to get out of there in order to get some rest. He will again be spending some time in there today and tomorrow.

So, the whole family is on hold today and all of our attention is on a tiny little tumor. May it come out with no damage to the surrounding area.

Monday, June 29, 2015

Food for the Week

It was the perfect weekend. I hardly left the house. Quiet. Restful. We even had a nice surprise visit from British Don mid-Sunday afternoon. We also wandered out in the car for lunch yesterday but that was it. Today, the plan is to workout at the other rehab, a visit to the butcher's, mom's and Trader Joe's. It should be a rather quiet, lazy summer day.

We also received the new water restrictions due to the ongoing drought. The list includes no watering between 8:00AM-6:00PM, watering allowed for a maximum of 15 minutes on specific days according to addresses, no fountains, no cleaning driveways or walkways. You get the idea. Because of my drought-resistance lawn, I only need 10 minutes a week. It has survived two other droughts.

Simple foods for the week. Tonight features a fantastic fish and shiitake mushrooms. These recipes are for those of us who are on immunosuppressant therapy. We just don't process food properly. The focus is protein and non-starchy veggies.

Breakfast/Lunch:
Cauliflower Bake: HERE
Deviled Eggs with Shallots and Pancetta
Arugula, Onion, Goat Cheese Pizza: HERE

Dinner:
Pan Seared Fish with Shiitake Mushrooms: HERE
Shrimp Salad: HERE
Houston Chicken: HERE
Philly Cheesesteak in a Bowl: HERE

Happy Monday!

Sunday, June 28, 2015

Transplants

On Tuesday, waiting for my pulmonary rehab class to begin, I spoke with Ron for the first time since his lung transplants. He had been working out in our class while waiting for the call. Though he is over 60-years old, he received two lungs. It is a tougher surgery than a single lung transplant but usually a better result. I learned from him that my university hospital is now trying to primarily perform double lung transplants to those strong enough for the surgery, regardless of their age. He is a slight, shorter man and clearly in good shape, having been working out in pulmonary rehab for years.

We were able to have a quick chat. He only waited two months for the lungs, spent only 10 days in the hospital and was just 3-weeks post-op. AMAZING! He looked fantastic, pink and happy. He said his was a textbook case as he had not one problem during the entire process.

He gave me such hope and confidence as I face the possibility of transplants. I have seen such bad outcomes just before and after transplants that I was beginning to believe no one made it past the first year. He will and I will be cheering him on.

Saturday, June 27, 2015

Why We Cough

This article is from the blog of Dr. Jeff Swigris of National Jewish Hospital in Denver. It explains the many causes of our cough, the pulmonary fibrosis cough. Mine is usually from not having enough prednisone or if my O2 is too low. It is a fascinating article. Please take the time to read it:

Cough in Pulmonary Fibrosis

Hi gang! I hope everyone is settling nicely into 2014. In this blog, I’m going to discuss cough—what it is, why it occurs in patients with PF and what we might be able to do about cough in those PF patients plagued by this annoying symptom.
What is cough?
Let’s start with a description of cough. (Full disclosure: I went back and read a chapter in one of our general pulmonary texts just to remind myself of all the stuff I’ve forgotten about cough since first learning about it…and to make sure what I was about to type had some validity to it.)
We, in the PF world, know cough as a potentially endlessly frustrating, forceful exhalation of air from the lungs, most often (but not always) with little or no mucus, accompanied by a sound that can be equal parts annoying (to the cougher and those around him) and embarrassing, and instigated by any number of feelings/triggers. Others know cough as a normal, primitive defense mechanism of the human body that attempts to protect the windpipe by expelling ANYTHING (except air) that gets close to its opening (the larynx…a.k.a. voice box).
Cough1
Here’s another look at the larynx, including a view from above (on the RIGHT). Remember that little guy with the blue visual field that I used in one of my previous blogs when discussing how we view CAT scans? Well, he’s back.
Imagine you’re sitting above the voice box (just like that little guy down there), looking down on the structures of the voice box; what you would see is shown in the circular image on the right.
The whitish things that make an UPSIDE DOWN “v” inside the circle are the vocal cords. They sit like a little door (more like a double sliding glass door) at the top of the windpipe (trachea). The opening between the vocal cords is called the glottis. If you go through the glottis, you’re inside the windpipe (trachea). When we breathe (IN or OUT), the vocal cords are open to allow air to pass. Our voices come from air flowing up out of the lungs, through the windpipe, and between the vocal cords (i.e., through the open glottis). The pitch and tone of our voice depends on, and varies with, the length and tension of the vocal cords, which alters the size and shape of the glottis.
Cough2
All of this is important to understanding cough. Here’s what happens in a normal cough; there are four events:
1) deep inspiration (glottis is open to allow air in the lungs). This deep
inspiration serves 3 purposes:
a) it dilates the airways
b) it stretches the muscles used in exhalation
c) it fills the lungs with air
2) glottis closes (that is, the vocal cords come together to close the
opening to the windpipe) and expiration begins (against the closed
vocal cords). This causes pressure to build inside the chest.
3) the glottis is exploded open and air is expelled as the inflated lungs
and stretched expiratory muscles RECOIL from their
stretched/expanded status.
4) a recovery phase marked by another deep inspiration.
It seems like I say “this is really complex” whenever I’m talking about things related to the human body…and I’m going to have to say it again: cough is a really complex thing. There are receptors for cough all over the place, including in and around the larynx (voice box), the windpipe and other large airways and even the EARDRUM and EAR CANAL (have you ever triggered a cough when cleaning your ear canal with a Q-tip?…don’t do it now…you should never put anything smaller than your elbow in your ear canal). Anyway, these various receptors can trigger cough when exposed to any number of mechanical or chemical stimuli (i.e., when they are touched by anything or when certain chemicals come in contact with them).
When triggered, the receptors start complex circuits in motion that involve various nerve pathways and body chemicals that ultimately result in cough. This is not well understood (there I go again), but in disease states, the cough receptors are OVER-sensitive, so things that might not normally cause cough, suddenly do.
Why do patients with PF cough?
Do you know the #1 reason why patients with PF cough? Like the rest of us, the #1 reason why patients with PF cough is postnasal drip. How so? Mucus from the nasal passages and/or sinuses drips down onto the soft palate then down the back of the throat toward the voice box. Remember, the body wants to protect the windpipe by expelling anything other than air that gets close…so, when the mucus gets down there close to the voice box (or on it in many cases), a cough is triggered. See the green mucus I’ve added to the image?
Cough3
Another reason why patients with PF might cough is GERD or the reflux of gas/acid/other liquid (alkaline)/food into the esophagus from the stomach. Because of a feedback loop (from esophagus to airways), all that is needed to trigger a cough is stuff coming up out of the stomach and hitting the lower esophagus…that’s it. Most people don’t even know this is going on…it can be entirely asymptomatic (except for the cough). Here’s how it is believed to work…
Cough4
…the stuff in the stomach (red) is supposed to stay down in the stomach, but it sloshes up into the esophagus. The esophagus is not made to withstand being bathed in that stuff, and it knows it, so it sounds the alarm (lightning bolt). The alarm is picked up by the (no one is sure but maybe the) brain or spinal cord, which then sends a message to the windpipe and airway to MAKE A COUGH. This seems like an odd reflex, since the cough doesn’t clear the stuff out of the esophagus…it likely has to do with the fact that in human embryonic development, the lungs come from the same tissue that gives rise to the esophagus, stomach and first part of the small intestine…so the nerve pathways are likely the same for both.
Whatever the case, the cough can occur when the stuff comes only a little way out of the stomach. But, in some people, the stuff does come all the way up to the top of the esophagus and even out of the esophagus and over into the voice box…that will trigger a cough, big time…and people will often get a really bitter, sour, burning taste along with it…but again, some people can be asymptomatic (except cough) even when that happens. Here’s a picture of this…
Cough5
We know GERD is very common in patients with PF. In fact, there are some pretty compelling data to suggest silent aspiration (reflux all the way up the esophagus and then down the windpipe into the lungs) actually causes PF…but the jury is still way out on that theory.
So people with PF can cough because of postnasal drip, GERD and a host of other things…of course, the cough might also arise from PF itself. Like everything else here, this is pretty poorly understood. What is known is that patients with PF have increased sensitivity to cough-inducing substances. That is, when a cough-inducing substance (e.g., capsaicin – the stuff that makes hot peppers hot) is inhaled, it takes less of it to induce a cough in a person with PF than in a person without PF. This is true for other substances often used in cough research (things like substance P and bradykinin).
Do you remember when we talked about traction bronchiectasis? That is, the airways getting tugged open as the lung around the airway retracts with scar? This is a very common finding in patients with PF; in fact, it’s one of the hallmarks of fibrosis on HRCT. Here’s a picture of it…
Cough6
It turns out that this distortion of the airways increases their cough sensitivity…makes them more likely to trigger a cough than a normal airway exposed to the same thing. So, as I mentioned above, airways in PF are overly sensitive to begin with; those airways with traction bronchiectasis are ULTRA-sensitive.
Also, (this is incredibly interesting), researchers have discovered that chest wall vibration can induce cough in some patients with PF. So, talking for any length of time (do you cough after talking on the phone for a while?) or as crazy as it seems, the cough itself—things that can cause vibrations in the chest—can bring on (or beget) cough.
What I hear from PF patients in clinic
What I hear from my PF patients is that many cough when they breathe hard and/or fast, like when they’re hurrying to do something. They tell me they cough when they talk for extended periods (e.g., on the phone is a common one). One that I’ve really come to appreciate is that many patients will tell me they cough whenever their oxygen saturation is low.
What can be done?
So, if you have PF and you cough, what can be done? Well, the first order of business is to rule out causes of cough other than PF itself. I mentioned two up there…there are others, so make sure you and your practitioner have worked through the possibilities before attributing your cough entirely to PF.
If you’ve arrived at the conclusion that your cough is from PF, there are some things to try. There are data to suggest prednisone improves cough in patients with PF. Please don’t take this as a blanket endorsement for chronic prednisone use in patients with IPF (or PF from any cause for that matter); whether to even try prednisone to specifically target cough from PF is a decision you and your practitioner should make together.
Believe it or not, I have had some patients sing the praises of the following things for decreasing the frequency and/or severity of their cough: benzonatate, N-acetyl cysteine (NAC), horehound cough drops, and Fisherman’s Friend cough drops. I’ve used all of these to treat cough in my PF patients: narcotics, nebulized lidocaine, amitriptyline, gabapentin, and baclofen. I’ve had some success with hypnosis in a couple patients. Which, if any is “right” for you is a decision you need to make you’re your practitioner.
You’ve probably read, there are emerging and potentially promising data on thalidomide’s ability to decrease cough frequency and severity, and to improve cough-related quality of life, in patients with PF. If you haven’t, you can find the article HERE. Thalidomide has some side effects, but it seems like people with terrible PF-related cough are willing to put up with them to get some relief. The good news is that there are newer, apparently less-toxic derivatives (i.e., cousins) of thalidomide out there…and more on the way. We’ll have to test those to see what they can do for our patients.
Now, you should know that, in any person, cough can be caused by more than one thing…in fact, many of my PF patients talk about their “PF cough” and their “other cough.” Treating cough, regardless of cause, can be a real challenge. I like to set the stage up front: I tell my patients this is going to be a process of trial and error; there may be—but probably won’t be—a “magic bullet” that magically takes the cough away. Often, there is some benefit from one intervention, but then another thing needs to be added/tried. Try not to get frustrated, and don’t give up hope. As you can see from the paragraphs above, there are a bunch of things to try. Work with your practitioner, and let him/her know what is working (or not) and how.

Friday, June 26, 2015

Tough Traffic, Great Dinner

We had a great time at dinner with British Don last night but I have to mention the traffic. It was crazy. It took forever to get from the house over the pass because of the tourists who were driving home after a day at the beach. Then, rush hour traffic. We crawled. I took a sneaky back way and finally made my way to Michael's work. But, I noticed that the traffic on the northbound freeway had stopped. Needed Plan B.

We had to take another group of side roads to drive up to a different freeway then, when that freeway stopped, we drove back down to the first freeway. It was not horrible but slow. Finally, we made it to Don's loft mentally exhausted yet so very grateful to not have to do that commute on a daily basis.

We wove through the city to eat at a cool German restaurant in the Mission District, shared a plate of various sausages and sauerkraut and talked. We were there a couple of hours. It was good to get brought up to speed since we had not seen him in several weeks.

Afterwards, the top went down on the car, we drove through the city, dropped Don off then headed down the coast just at sunset. Lots of color. It was so beautiful. The ocean was a deep blue and calm. Still in the 60s. So very relaxing.

Today, mom and I are meeting Barbara and her daycare kids at a Japanese Tea Garden I used to often take William when he was little. It is part of a larger park, which has a great playground and even a small train. After lunch in the park, we are going to the PEZ Museum. Really. I used to know the owner years ago, as a bass player in the orchestra used to work for him when it was a computer company. The museum began to make more money than the computer store! It is now rather famous. We are so looking forward to seeing Barbara and hanging out with the kids.

Thursday, June 25, 2015

Fun Tonight

Five hours of hand trimming, cutting the lawn, raking, hauling a ladder, using the electric trimmer, blowing it all into a nice pile and hauling it all away. Hot and sweaty. It felt great yesterday. No stiffness this morning. I slept so well and forced myself out of bed this morning.

After rehab class today, I am coming home to change clothes and wait a couple of hours before going back over the pass to nab Michael from work. We are going to have dinner in the city with British Don. We haven't seen him since he vacationed in Hawaii then another vacation in Miami Beach. Can't wait to hear all the details. It is the warmest day of the week so it will be a beautiful night to wander the city.

Anna told us that Doug should be in the hospital four days and two to three weeks to recover from brain surgery next Tuesday. I will bet there will be a bit of rehab as well. The pre-op was Tuesdays and they felt much better after being walked through the process and all of their questions were answered. Still scary.

Wednesday, June 24, 2015

Yoga/Pilate's

I lasted 2.20 minutes on the elliptical in the rehab class yesterday. Dripping sweat and quivering legs but no pain, not even this morning. That is the good news. I still feel I need more of a workout and deeply miss my fast walks on the treadmill.

Yoga. The classes keep changing and my schedule only allows for a Wednesday class. Power yoga to Gentle yoga. I didn't do well in the transition. There was something else that really bothered me: the smell. Incense was always burning and the smell would turn my stomach. Some days I would have to leave and force myself not to get sick. The thought of going back to a new class was exciting until I remembered the smell. I don't know if I want to deal with it.

Pilate's. My string bass partner in the orchestra takes private lessons from the local franchise. She has ligament issues and uses it as physical therapy twice a week. It has made a huge difference to her health. I am thinking about wandering in during the day, asking a few questions, letting them know I will be bringing oxygen and gage their reaction.

But this Wednesday, I am going to work in the gardens most of the day. Lots of hand trimming is needed. I love to listen to the radio or music and just focus my creative juices on all the hand work. I love to walk and look at each section afterwards. Such satisfaction for a job well done. I will also sleep well tonight!

Tuesday, June 23, 2015

Pulmonary Rehab

Since 2005, I have been working out in pulmonary rehab at least five days a week. I have changed things up a bit since then by adding two more days a week and throwing in some yoga, walks along the ocean and lots of yard work. I felt fit and healthy before the flu hit in January. I feel I am struggling to get back to fitness.

With the hip injury, I just am not getting a full workout. It scares me. I know that working out hard everyday has helped to keep the lung transplants at bay. Having to back off exercise leaves me vulnerable. I don't like it.

In two weeks, I begin to rehab the hip with the hopes that I can continue a walk along the ocean and pain-free enough to add lots of minutes to the elliptical. I bumped into Mac, my chosen PT, and he was so happy to be working with me in two weeks. He is tough. He will push. He will teach me what I can do and really what I should never do again.

So, this is a shift. Adjust and keep moving forward.

Coincidentally, I will be part of a focus group next week to talk about specifics of a good pulmonary rehab program. My university hospital is going to launch one for ILD patients. It's about time!

Please, please, please ask your doctor about pulmonary rehab. You will feel so much better within just a couple of weeks. More stamina. I used to walk out of there standing straighter, breathing better and exhausted. It felt fantastic.

Monday, June 22, 2015

Opposite Day

We named yesterday "Opposite Father's Day." It began when Michael made eggs for our breakfast. Wait, shouldn't I have made breakfast for him? After watching the Formula 1 race (the most boring of the season), Michael CUT THE GRASS while I was taking a shower. He never cuts the grass but it was really long and I had planned to cut it myself later in the day. What a surprise. Wait, shouldn't I have cut the grass on this special day?

Then we hopped in the car, put the top down and drove down the coast to our favorite dive before the tourists invaded. We ran into the man who owns the restaurant right on the ocean north of us. We sat and chatted while Michael had a Ramos Fizz. Later, he BBQed a small steak and two colossal shrimp in their shells for our dinner then made a nice decaf Nespresso for me. Wait...

I told him that I really loved Father's Day and we should celebrate it more often!!!

Our son phoned from the tour, which was in Germany on their way to Croatia. They had a nice chat. Father and son. Michael asked him to arrange VIP tickets to an upcoming concert in Southern California for his favorite cousin and her son, who is interested in becoming a sound engineer. They have never met William. He will have her son hang out with him before the concert then he can stand near him during the concert to see how he mixes the sound. It is the first time we have ever asked this of William. I messaged his cousin on Facebook to let them know it had been arranged and gave them William's cell number to text that day and when they arrive to the venue. The response was overwhelming. They were shocked and their son was elated.

I hope everyone enjoyed their fathers or the sweet memories of their fathers with special attention on their special day.

Sunday, June 21, 2015

Happy Father's Day

Happy Father's Day. A day to honor our fathers. I especially want to wish a good Father's Day to those whose father's have passed away. Hold those memories close to your heart and make sure your children hear stories about them today.

In our life right now, one father is facing brain surgery in nine days and another dear father just died. This will be a raw, probably difficult holiday for both families. Bittersweet. Next year, it will be a bit easier to be grateful. Our hope is for Doug's full recovery from surgery and peace for the children and wife of Jay.

William is in Europe but will phone his dad today. They have such a close relationship that it makes me smile. After doing a quick mow and blow of the yard after watching the Formula 1 race this morning, we are going out to lunch. Dinner will be in the garden.

It will be a day that we will talk about my amazing dad, talk about being a dad and being very grateful for all the fathers in our lives.

Saturday, June 20, 2015

Sweet Kids

Oliver phoned to thank me for his birthday presents. He especially liked the glasses that have little mirrors on the inside so he can see what is going on behind him. When he opened the motor driven marble tall maze-type thing, he told Natalie, "I have always wanted one of these!" Another successful choice of presents for my favorite 5-year old.

His sister Winnie has found her tribe. As a kid who always needed attention, being asked to join the gymnastic team and being both the youngest and smallest gives her a lot of attention from the other girls. Natalie said the girls are all cut from the same cloth. On the balance beam last week, Winnie took her first hard fall trying to do a hand stand. Apparently, there is a choice of the balance beam height. Winnie always chooses the highest. Always.

Natalie is worried that now she does not seem to want to continue with her violin lessons. She has two years under her belt and has learned a lot of theory. When Natalie and I worked together, we would often put the young kids together with an instrument that we thought would fit their personality-type. I laughed when I told Natalie that she should offer Winnie a change of instrument. My quote? "She is so a trumpet." Natalie replied, "You're right!"

Love those kids!

I need to report that after working out each day last week, I have no pain. It helped to reduce my time and speed on the treadmill and I added two minutes on the elliptical. I was so worried that I was not going to be able to get in a good workout without the treadmill.

Still looking forward to seeing Barbara today. Glasses and lunch. It will be good to see her.

Friday, June 19, 2015

Nice Weekend Ahead

Doug was sent home from the hospital yesterday after a ton of tests, which didn't find another tumor anywhere in his body. That is a good sign. They plan to remove the brain tumor on June 30. No one seems to be in a huge hurry, which is also a good sign. Surgery on the brain is never a walk in the park so there is still a lot of anxiety about having to face it. He is in good hands.

Rehab class went well but Sherman was also very anxious about having his first treatment for macular degeneration: a shot in his eye. Mom has been having these treatments for over four years and it has saved her eye site. I walked Sherman through the process and told him the secret of taking two aspirin afterwards so I hope he feels a bit more prepared going into it today.

Michael has chosen his Father's Day dinner: We will split a small steak, each with have a grilled colossal shrimp, cole slaw and he is going to have a piece of Tiramisu from his favorite bakery. Weather should be beautiful and we plan to stay in the garden all day. He also is expecting to hear from William, who will be in Germany on Sunday on their way to yet another festival in his new favorite country Croatia. It will be good to hear his voice.

I am looking forward to a change of pace this weekend. Instead of working in the yards on Saturday, I am meeting our friend Barbara (without her wonderful day care kids) to pick out some new glasses then lunch together. Like an adult. No chores. I am so looking forward to it!

Thursday, June 18, 2015

Good then REALLY Bad News

Back to rehab class this morning. The experiment on the elliptical on Tuesday was a success. Theirs was power driven so it was a bit easier. I went two minutes, my saturation level remained at 96% and my heart got a bit of a workout. Today, I will do two minutes again then add an additional two minutes next week. There was no pain in my hip or my knees afterwards or the next morning. That is good news. I did do a warm up at 2.5 MPH for 11 minutes on the treadmill, which felt great.

I also set up several weeks of PT for my hip. We so adored mom's therapist that I requested him, ran into him after my class and we are both so happy to have him working with me. Should be fun and a lot of work. He was tough.

Now for the very bad news: Anna and Doug. Michael's older sister and her newly-retired public defender husband who just came for a visit. He was having problems with vertigo while he was here and was also falling out of bed. Apparently, after they got home, he was sleeping all day and was repeating everything he said five times. Clearly something was wrong.

He finally made an appointment with his doctor yesterday for the same time that Anna was taking her neighbor to her chemo appointment. He wanted to go alone. The doctor quickly found liquid behind his eardrum, which was causing the problems but...let's get a CT Scan just to be sure.

Bottom line: They found a 3-5 mm tumor in the lower left side of his brain. He was admitted into ICU, they are doing an MRI of his head and a CT scan of his stomach and heart, and will run his blood work today. There is talk that they might send him home for the weekend but the surgery will be Monday or Tuesday.

It hit Michael really hard. No one slept very well last night. We are so praying that it is able to be removed, benign and Doug continues on with his retirement.

Wednesday, June 17, 2015

Wisdom from the Front Lines

With this blog, I try to offer as much information about the reality of living with a lung disease. All the ups and all the downs. The trick is to appreciate the ups but not panic during the downs. What I can't give to you, dear reader, is my personal experience when lungs crash. Thankfully, I have been able to avoid that scenario, so far.

Sadly, a long-time reader of this blog has just lost her husband to an interstitial lung disease. She had shared with me so much about their experiences through the years but especially his final weeks. She asked if I would share important information with you. It is about the whole lung transplant process. I tried to re-write it but she wrote it so eloquently that, after changing identifying information with capital letters, I just pasted it from her latest email. Please read it:

Add to your blog posting about transplants. WE had his first encounter with the FIRST HOSPITAL transplant clinic on April 8. His hands and fingernails were showing clear signs of clubbing. He was on 5 liters of O2. His FIRST HOSPITAL ILD pulmonologist was calling regularly, trying to get the eval going. The transplant pulmonologist turned HIM away. She said she didn't think the eval had to be done on an urgent basis. That he seemed stable. I protested at the time, told her we had no Plan B if he crashed. She was unmoved. The clinic set the next appointment for June. HE was admitted to the hospital with either aspiration pneumonia or exacerbation or both on April 25.

I spoke to one of the transplant pulmonologists the day before HE died. SECOND HOSPITAL had directed me to move HIM to a transplant center. FIRST HOSPITAL pretty much refused. HE was on a lot of IV steroid at the time. That precluded him from surgery.

The update for your blog: FIRST HOSPITAL protocol demands that patients are on 20 mg of Prednisone or less for eval AND transplant. If you crash, any ILD pulmonologist's first reaction will be to reach for Prednisone. A lot of Prednisone. In doing so, transplant retreats as an option, at least here in CITY. It's not enough to get evaluated before you're sick. You must understand how the transplant center interacts with emergency treatment protocol.

It is that last sentence that I think it is so important for us. That is wisdom learned only by experience. She is going through the grieving of her husband yet feels so compelled to make sure this information is shared with us. An amazing woman. 

Tuesday, June 16, 2015

Don't Stop

At the other rehab yesterday, I had two conversations with people I have spoken with before but this time, they asked questions about my oxygen. That opened a whole conversation from how I got the disease to lung transplants. Through the years, I have gotten good at telling the story simply and quickly. If they want more information, they will ask specific questions. And they did.

Both parties are in the cardiac rehab class, so they have health issues. They have lived through the scare of an incident. Both are fighters.

As we were talking, one said that sometimes she realizes that she can't do things she was able to do just a couple of years ago. I offered how I have learned to adjust to those changes but to keep moving. Never stop doing anything. Change the approach. Adjust but keep moving forward is my mantra.

And with that in mind, I tried the elliptical. Yikes! Without using the arms, I was short of breath and felt the pressure in my knees within minutes. At the rehab class today, I will asked to do a minute this week and work up to two minutes next week. We'll see if I am able to build up my stamina or if it is just too much for my lungs and knees. I also will admit that I spent a bit of time on my beloved treadmill and did not have any pain.

Yesterday, Dr. K. sent an email to be printed and sent to excuse me from jury duty. What a doctor. I will attach her business card to the email, make a copy for my files and send it in today. I bet Michael that he will be receiving his jury duty notice within the month.

Monday, June 15, 2015

It's a Monday

Michael is going back to work this morning for the first time in two weeks. It has been lovely sleeping in until 6:30! I am going to miss him but I can tell he is itching to hang out with his young friends at work. So good for his soul. We went to Macy's yesterday to buy new work clothing: four different styles of Levi's and four new shirts at great prices.

We slept under new sheets last night. Amazing what a difference a good set of sheets make. It was from the Hotel Collection, 800 count Egyptian cotton, extra deep packets also from Macy's ridiculously cheap.

I will be at the other rehab by 7:30 this morning to try out the elliptical, lift some weights and ride the recumbent bike. No treadmill for a bit. Before the rehab class tomorrow, I will make appointments to rehab my hip. I so want to return to the treadmill.

We didn't make it to the butcher yesterday so I need to swing by there after working out and before I see mom. She has a long appointment this morning, we will eat lunch late and I will need to buy groceries at Trader Joe's before coming home. It is going to be a long day.

My ear is improving everyday. It still rings a bit but is probably 75% of normal. The decongestants really helped dry up the liquid behind my ear drum. And chewing gum helped, too!

Sunday, June 14, 2015

Sunday Together

Jury duty. For the first time in years, the paperwork came in the mail requesting my presence. Dr. K. had written a letter to request my permanent removal from the rolls of jury duty in 2008. Can you imagine me in a room of hundreds of people waiting to see if we have to go into a smaller room before a judge, sit together all day then sit on a jury all day? The germs alone would kill me. Also, sitting that long for weeks and weeks would make me have to start my rehab from the very bottom. It would also be exhausting and I know I would end up sick.

I sent a quick email to Dr. K. on Saturday and she wrote back! First, an automatic reply came that she was not in until Monday, yet she still answered my email. One remarkable woman. Hopefully, I will get a note from her to send into the courts.

After doing the yard work yesterday, I tried to just stop and rest. I am still not feeling great. Today, I am putting new sheets on the bed (they were left on our doorstep yesterday), running to Safeway, taking a shower then meeting Michael over the pass to buy some new jeans for him, swinging by the butcher then a quick run to Trader Joe's. It will be nice to be out into the world with him.

Saturday, June 13, 2015

Missing Pulmonary Rehab

It was my first day out into the world after the company left. Mom and I did a bit of shopping, I bought several summer t-shirts and we had a very light lunch at Applebee's yesterday. We talked non-stop. I am still not 100% but my ear is better each day and I was not so exhausted. 

Recovering. Starting all over again. I wish I had a nickel... 

Every time I have a downturn with my health where I can't go to pulmonary rehab for a bit, I have to return to start slowly to build back my stamina. It is always daunting but I am surprised that it comes back rather quickly, though never 100%. I look back to when I felt very fit and healthy about a year ago October for our friend's son's wedding. I felt fantastic. I was walking long distances and working out eight times a week. As I look forward to the rebuilding, this time it is going to be different. The hip issue is going to play a role. No more treadmill. No more long walks along the ocean. But, that doesn't mean that I can't do shorter walks or that I can try the elliptical at rehab or add time on the recumbent bike. This time it is going to be different. 

It will begin on Monday. I will also make the appointments for the rehab on my hip as well as return to pulmonary rehab. The goal will be to sweat everyday.

My university hospital has asked if I would sit on a focus group to put together a pulmonary rehab program. Their first one ever. There will be two meetings of 60-90 minutes and I will be paid a grand total of $100.00!! Wow!! In the meantime, I will be putting together a list of topics that I found helpful during my classes when I began rehab back in 2005. Should be interesting.

Friday, June 12, 2015

Evaluation for Transplants

Lung transplants. No one wants them. They are a treatment not a cure for our lung diseases. As one person described the process to me: You are sick. Your lungs have a sudden crash. From that point forward, there is a small window of time to get evaluated for transplants before you are too ill to be transplanted. I have friends who have died during the evaluation process. I have a friend who died a year post-transplant. It is tricky.

My friend's husband, who had my disease, was not interested in a transplant when it was first mentioned to him. By the time he needed them, he was too sick to begin the evaluation. His wife just asked that I pass along to you, dear reader, that she so wishes that they had gone through the evaluation process earlier in the disease, even though he would have been rejected for being too healthy. She said that if you wait too long it can be fatal. She really feels that they were not guided properly by the doctors. It is a regret. They fought a long hard battle. Her husband's memorial service is this Saturday.

When Dr. K. first mentioned transplants, she told me I would have to lose weight to get between 25-30 BMI before I would even be allowed an appointment in the transplant clinic. I immediately rejected the whole idea of a transplant. No, thank you.

She looked into my eyes and said, "Sitting on a couch and needing 10 liters of oxygen is not living. With a transplant, you may have another five good years or even more. Educate yourself. Follow the process. When you are ill enough to actually need a transplant, you will have everything in place to make the final decision whether you want them or not."

I heeded her advice. I have made the decision that if I crash before I am 70-years old, I will go for one lung. If I can just stay stable for another eight years then crash, I will just let go and die.

If you are struggling with this decision, please be evaluated. Get the information. Learn the process. It may add active years to your life. Talk with your doctor. Here is a lot of information regarding the transplant process: HERE

Thursday, June 11, 2015

What? Can't Hear You

It was a surprise that I had a fever when I went to the local doctor yesterday. Explained why I just have not been feeling well. She reviewed the history of my immediate care and ER visits and gave me the bad news. She did not want to treat my ear with another antibiotic. She was worried that it might just kick me into the syndrome caused by antibiotics killing all the good as well as the bad bacteria. She said I would really be in trouble if that happened. So, we are treating it conservatively. Lots of warm compresses. Daily Zyrtec-D to help dry it up from the inside. Time. It's going to take time.

It's driving me nuts.

My friend Barbara has tinnitus. That is a HORRIBLE disease that will totally ground her for months. This is nothing close to it but I now can understand her frustration dealing with hearing issues with no easy relief.

I wanted to hit the gardens today but I just don't feel well enough. And, thank you, the grass is too wet! It was marvelous to be out in a gentle rain all day yesterday, thanks to the remnants of a hurricane. Lovely. Warm. A bit of drought relief.

We are going to our third funeral in three weeks. The memorial service for our former neighbor is next Wednesday. When we rented a house then bought it in 1975, they were our neighbors. After moving into our current house in 1982, we still kept in touch. They were lovely and kind to the young couple next door, even with Michael working in our garage in the early morning hours. She had a long fight with cancer and I had just seen her a couple of weeks before she died. I haven't seen their two boys in years and will be shocked that we all are older people now!

Wednesday, June 10, 2015

Recovering from Company

Well, the clogged ear has now turned to pus again. I can feel the difference. My primary will be called this morning to see if I can get in to see her before or after my noon dentist appointment, but I will bet she is not available until tomorrow.

The other news is that it is actually raining here! It is the leftovers from a hurricane off Baja. We'll take leftovers!

I tried to take it easy yesterday, eat well and rest. The only goal was laundry and I did get the guest room sheets back on the bed and the room put back together. Michael was very careful with his diet and had no diarrhea yesterday so he will be careful again today. Thank goodness that it seems to be under control. I was getting worried.

Ron and Susan - our neighbors - left yesterday for a month in Italy. He dropped off some radishes and greens from his garden and told us to pick and eat anything we want. Did I mention he has a ton of raspberries in his backyard? I will bring mom down next week to see his amazing garden and pick some produce for her. Ron often gives me some goodies from the garden to give to her. She adores him because he is a gardener. Soul mates.

Tuesday, June 9, 2015

Sad News

After cooking a good breakfast of "Joe's Special," Anna and Doug left yesterday morning. They loved spending time with us and Anna clung to Michael sobbing as they said goodbye. It was a nice visit. The house was suddenly quiet. Michael had planned to run over the pass but he has been dealing with a bad case of diarrhea. What is so strange is that we had split lunch and we had eaten everything the same for several days. We can't figure out the cause. He was better yesterday then we ate a dinner that did not settle well. So, today it is the BRAT diet - bananas, rice, applesauce and toast. He will add some fresh turkey or chicken for protein but that is it. Hopefully, this will pass...

I dozed on and off yesterday and slept well last night. I am tired. My ear is still blocked. The goal today is to do the laundry, wash and iron the guest room sheets and just take it easy. I do need to phone mom this morning just to check in.

While life continues for us, my heart is just aching over the loss of a dear friend's husband, who had my disease. We have never met but she and I exchanged a lot of information that I hope helped them the last couple of years. His passing was a complete shock. I imagined him out of the hospital, into a rehab facility and eventually transplanted. Hypersensitivity Pneumonitis is a horrible, nasty, scary disease. I so hope that our children will be able to take a pill to slow down the disease. The new fibrotic drugs offer hope but sadly, a bit late for her husband and me.

My deepest sympathies to his wife and daughter.

Monday, June 8, 2015

Company Leaving

We left the house keys with Anna and Doug yesterday while we went to Jay's services. It truly was a celebration of his life in their home filled with his old college friends and all the relatives. It was exactly what I would wish for a service. I promised his children that I would phone Nancy often just so she can talk. It sometimes helps the grieving spouse to talk with a person who is not directly related. Easier to share without the worry of causing tears or anxiety with the children.

While we were gone, Anna and Doug drove into town for breakfast and shopped along Main Street. They made their way home, had a nice nap then went out for a beautiful walk on the coastal trail in the sunshine. I think they enjoyed they day without us!

We ordered pizza (a total treat for me!) and enjoyed it while watching the basketball game followed by the Formula 1 Race from Canada. And talked. And laughed. I also invited them to stay at our house during one of our long road trips. They are the easiest house guests ever but they are leaving this morning. It has been a nice visit.

My ear is now clogged again. I think I need another round of antibiotics. Getting tired of this...

Sunday, June 7, 2015

Ano Nuevo

It has been a whirlwind. We went to Ano Nuevo yesterday: HERE. The elephant seals were molting, the females had arrived and the young males were playing/fighting. It was perfect weather for the event: sunny but with fog just off the coast for a cool breeze. To see the elephant seals, there was a 3.4 mile walk up and down hills and over some sand dunes. It was a difficult hike for me, especially the second half.

Finally, we made it to the viewing area. There were approximately 300 elephant seals propelling their massive slug-like bodies up onto the warm sands, fighting and vocalizing in the water, chasing each other and just sunbathing in the sun. Fascinating.

I was worried about the hike back. The sand dunes would be a huge challenge and there were major hills I was going to have to climb. Michael noticed a wooden walkway that led away from the viewing area. He asked the docent if that was for the disabled. She replied yes, it connected to a road but they couldn't help me because we had not pre-ordered a staff member and transportation to come to pick me up.

Oh.

So, Michael is not one to let the rules prevent him from doing something that he feels is the right thing to do. He helped Anna and me over the little rope, pointed up towards the road and told us we would meet in the parking lot.

We took off. It was a graveled road with only one minor hill. I avoided the sun dunes. I avoided about four other huge uphills. We kept walking on the road wondering where it would lead us. Finally, there was a fork in the road. To our right was the last bathroom bulding and the docent's structure. We called the boys to tell them to meet us there. As we took that road, the docent began to walk towards us with a man using a cane. Anna got nervous. As we passed, we smiled and said our hellos. The docent never stopped to question where we had come from and what we were doing there.

We met the boys on the trail and the rest of the walk back, except for one long uphill, was uneventful. I was so very happy to see the car!

There was the fancy campground just a couple of miles up the road so we had a delightful late lunch while watching the final leg for the Triple Crown. About the campground HERE.

A bit after we got home, appetizers were served on the side patio on the table Jeff made for us. Crab mold, Brie and Fig Wrap, Bruschetta.

I fell into bed by 8:30.

Michael had a rough night. Something he ate caused massive diarrhea and something bit him on his neck. I ran out to Safeway this morning to buy some relief for him as it needs to be under control for Jay's funeral today. Since we split the lunch and ate everything the same yesterday, we can't figure out what he had eaten to cause the problem.

Later this morning, we will go to Jay's services and leave our company with the keys to the house, the remote controls for the big TV in the living room and instructions on how to connect up with the coastal trail. It should be sunny and warm here today.

Saturday, June 6, 2015

Landed

After three attempts, Anna and Doug finally arrived yesterday. I was ready. We had a nice chat before driving down the coast to the dive with the fantastic food and the goat farm. Doug was so intrigued by the operations of the goat farm and loved all the free samples. They even had habenero and goat cheese stuffed truffles.

Lunch was fantastic, Doug had the famous artichoke soup and loved it, Anna and Michael each had a crab sandwich and they had oysters. I had a steamed artichoke and a small hamburger without a bun. I didn't want to eat a lot.

Anna and I stayed at the house while the boys took a drive up the coast in the Porsche. Gave us a time to chat! Simple, small appetizers were served out on the side patio (and cocktails!) followed later by baked open-faced sandwiches with a side of cantaloupe, basil and sugared bacon. Oh, did I mention the chocolate cake frosted with ganache then covered in pralines? Doug told me it should be illegal.

They we out for a walk around the neighborhood while I cleaned up the kitchen. We all fell into bed around 9:30.

Today, we are going to Ano Nuevo, which is a state park down near the Santa Cruz county line where the huge, slug-like Elephant Seals hang out. It is a nice hike down to the water from the parking lot so we will get a little exercise in today. For lunch, we will stop at a camping place for the rich Silicon Valley people who want to get away. It is glamorous and did I mention very expensive to stay there? Well, they have a fantastic restaurant on the property, not too expensive but great and unique food. An experience. Tonight's dinner will be a couple appetizers.

Tomorrow is Jay's memorial service. We are leaving Anna and Doug here at the house so they can hike the trail to have lobster rolls for lunch. Anna is excited! When we get home, we are going to haul them to the city.

I am holding up well, for the first day. We'll see how I am tomorrow!

Friday, June 5, 2015

Grateful for the Disease

Someone recently told me I had a white light surrounding me. A protective and positive white light. When I was in first grade in a Catholic school in Illinois, a very young and very sweet nun told us all about Guardian Angels who watch over us. I remember thinking, "So that's what that is!"

Whether it is a Guardian Angels or intuition, I have listened to that inner voice all of my life. It has saved me many, many times. I trust it when I meet people. I trusted it when I interviewed and hired people. I knew I found the love of my life just writing Michael's last name (read about that story HERE) and just waited for him to figure it out.

One scary story was when I was dating a guy in the 60s. We had taken a ride in his VW bus - it was the 60s, after all - and were parked in a pullout on Devil's Slide. We had climbed the small hill to look over the cliffs to the crashing waves below when something told me to move NOW. Run. I looked around and saw two guys walking quickly towards us. "Let's go now," I said to my boyfriend and for once, he listened to me. He moved, I kept saying, "Hurry, hurry!"

I knew that if we did not get into the bus and go that these two guys were going to push us off the cliff to steal the bus. They were getting closer and closer. Finally, he started the bus and we drove off. I looked back to see them both stop, throw up their hands, turn around and walk back the other way.

When I got sick, instead of praying for a cure, I would ask for guidance. Prayed for help to understand my new unexpected path. Years later, I realize that having this disease has brought such positive changes to my life that I am grateful for it. I am fit. I am very happily married. I am being able to share our experiences to help others through this difficult experience. I am hoping that the white light stays to guide and protect me a few more years.

Thursday, June 4, 2015

Company Minus One Day

Our final day together. Company arrives tomorrow morning so, as tradition dictates, we are going out to dinner tonight. We love this time to take a deep breath, talk about the upcoming visitors and just be together for the last time in days.

This will come after a day that begins with me finally washing the windows, the housekeepers doing their magic, a beautiful praline-covered chocolate cake will be made and mom's eye doctor appointment is later this afternoon. I am feeling better, the ear is better but I am still coughing a bit. I completed a long list of things to do yesterday and even had time to get my eyebrows waxed. Ouch!

I love company who share that they want to go out to lunch and just have a few appetizers for dinner. My kind of people. We so hope the fog lifts so we can be out in the garden, especially in the evening.

Michael. What a guy. While being so sick lately, he really stepped up to the plate. Again. He was so thoughtful and just worried about me. Very tender. Very sweet.

Wednesday, June 3, 2015

Preparations Continue

Yards? Done! After five hours of work everything is sparkling. It was to a point towards the end that I had to force myself to continue. I am not totally recovered yet from the virus and I did push it a bit too much. I was toast. Yet, I still made dinner and cleaned the kitchen. By 7:30, I was in bed and slept 10 hours.

While doing yard work, I decided to remove a small Meyer's Lemon tree. I'm talking about a foot tall. It never really liked where it was planted and just needed to go. While pulling on it, I felt my back being pulled. Oh no. That's what I need! This morning, I feel just a small twinge. Thankfully it is not worse.

I heard from the doctor regarding my hip MRI and words like, "as we get older" kept creeping into the conversation. My bones are great but all the other things that fail as we age are doing their job: failing. It was suggested that I give up the treadmill and walks to swimming and bicycling. Great. I'm not allowed near a swimming pool because of dirty water molecules getting into my lungs and bicycling out into the world is impossible. I just don't have the lung strength. Asking if there was rehab I could do to build muscle around the issues, she said she would send the referral. I will be asking about the elliptical machine at rehab, which is so less jarring on the joints.

Today, I am going out into the world. I am hitting the bank, two grocery stores, Peet's to buy coffee grounds, See's Candy to buy a pound for Doug then home to make sugar-glazed walnuts, clean the stove hood, file all the paperwork and wash the windows. Just a few more things to do!!

When Anna and Doug finally arrive on Friday, I will be able to relax and enjoy their company.

Tuesday, June 2, 2015

Funeral

The funeral for a friend's wife was yesterday. The church was overflowing with people and I think the entire Top Brass from a large fire department filled the aisles and back of the church. Her son is a fireman. I sat next to a friend's wife who has been fight cancer for years. It appears to now be a losing battle. Her numbers just turned bad, she probably has had her limit of chemo and was suffering through this final round. It was so sad.

Because of mom, I left early to take her to the hard-to-get driver's license renewal appointment. It was jammed, people without appointments were looking at 2+ hours of waiting. It was a tough and unhappy crowd. Mom almost blew the eye exam but finally figured out what she was doing wrong, took the written test and passed with a 100% gold star. She danced out of there with relief.

Michael and I had a quiet night and received an invitation to Jay's memorial service in their home on Sunday. Yes, Anna and Doug will be here but we must go to be with the his family.

I am feeling better. No coughing this morning but my ear is still filled with fluid. So very annoying. Today, the gardens will be done. I am going to try to focus on the back gardens as we will be there more than the front. Tomorrow, I will gather the food and prepare the house for the housekeepers.

Monday, June 1, 2015

Neighbors

We moved into our house in 1982. William was a year old and we were in our late 20s. It was a nice house on a cul de sac near the ocean. We were the youngest people to ever buy into this up-scale neighborhood. The children of most of the original families who bought the houses when they were new were high school aged, so there were very few young children in the entire area. On our street, William was it.

While I was out trying to do yard work, the neighbor next to us was also doing her gardening. Nancy was a Master Gardener. She not only grew flowers but she also had huge vegetables gardens. We became friends. Her husband, Jay was the optometrist in the town north of us, her son was in college and her daughter was a junior in high school. He would drive home for lunch everyday. One afternoon after his lunch, she and I decided to remove an older, small tree in my front yard and take it to the dump. We worked hard. We did it and waited to see if either husband noticed it missing that evening. Nope.

Nancy was an excellent cook. No recipes needed. One day, she told me it was time to learn how to make a good pie. We spent the day making eight apple pies for our freezers and I really learned.

They owned a rental house in downtown Carmel, CA. It was in the days of Bing Crosby's Pebble Beach Classic. The Clambake. Very quietly, as this was never offered to any of their family members, they offered us the house for the weekend of the tournament while it was between renters. And, they babysat William all weekend.

William adored them both. Nancy had a separate vegetable garden in the back just for him. They planted and water and discussed how they looked everyday. No vegetables ever tasted better and he was so proud of his crops.

The bad new was around 1990, they retired and moved to be closer to Nancy's family. We still saw them a lot. We phoned. They visited. We would meet them in Carmel or Monterey. We were also invited to family events. We always went.

Now in their 80s, they have traveled to Hawaii several times a year, exercised everyday, still ate very simply and neither was on any medication. Did I mention that they have NEVER eaten fast food? Jay never could understand the concept.

When I got home from the hospital on Saturday, there was a Facebook message for their daughter's best friend. Jay had just died within the hour. Details were shared but I so just wanted to speak with Nancy. Finally today, their daughter let me know that Nancy wanted to speak with me.

She was still in shock. She also said that she had not shared many details with the relatives then told me everything. We talked about how it is sometimes easier to talk about it with someone one step removed. Nancy and her son had just arrived home from the Farmer's Market, he left, Jay was in his chair and didn't answer her question. She walked over to him. He was gone. Yes, the paramedics came and the wait for the coroner was horrible but she knew there was nothing they could do. We talked about how it was the perfect death for Jay. No long stays in a hospital. No stress of an illness on his family. We think it was an aneurysm. A quiet death.

There will be a gathering at their home soon, his ashes will be carried to Hawaii in July (they had already planned the trip) and will be scattered in the ocean. This was his request.

Jay was one of those people who you expected to live forever. We will deeply miss him.