Monday, April 30, 2018

The Countdown Begins

Having sleeping problems? I found the solution this weekend. The secret is to totally wear yourself out by being busy with non-stop physical work. Nine hours after falling into bed, I slept nine hours through the night without waking up. Everything from my list is now done except for an extra cleaning of the two guest rooms. That will happen tomorrow.

I have also noticed that my breathing is excellent! No supplemental oxygen needed while I am doing all the work! No coughing!

Today, I am dragging out the power suit to wear to mom's eye doctor appointment. It is going to take all my training managing the high level instrumental teachers to make sure that mom is heard but the relationship with her doctor stays on track. Dicey, to say the least. We will have a quick lunch afterwords before my road trip hair cut/color appointment in town.

By this time, I was expecting to feel a lot of stress as we are preparing for the road trip beginning at 5 AM Saturday morning. Three weeks and over 7,000 miles. Somehow, it feels like I have it under control but I still worry that I am missing something. Details!

Sunday, April 29, 2018

Can Do

I girded myself to do some serious weeding in the front gardens yesterday morning. Three hours later, an entire stretch of flowers near the little wall along the front were removed and cleaned-up and a huge area at the far corner was cleared. Every inch of it had been covered with weeds, grasses and some weird plant/weed that smelled like an onion, which also had onion-type roots. Smelly and totally out of control. My left hand began to cramp but it was worth it all when I realized I filled the huge garden recycling container to the brim.

After a quick lunch, I watered the pots and washed all the windows while washing our sheets. (I just looked out the windows and it is raining! I don't think it will be enough to ruin my clean windows!) It was a full day and the longest I have worked in the gardens in many, many months. I went to bed early and slept well.

More to be done today including the laundry, some ironing and cleaning of the guest rooms.

Michael is currently sitting at the entrance to our complex watching all the fancy automobiles go by. They are on their way north for a day of family fun. He can see most of them then take off to do his errands.

I am feeling great and filled with energy. The more I do, the more I can do. I hope it lasts!

Friday, April 27, 2018

Video Appointments




Every once in a while, a new technology, 
an old problem, and a big idea turn into an innovation. 
Dean Kamen




With a deep breath and a sigh, I hugged Jeannie goodbye as I left my final rehab class yesterday. It felt odd to drive home alone but Michael was waiting for me. After changing out of my gym clothes, we drove into the city for the PFAC meeting at my university hospital.

It was another good one with lots of questions from our three guests from the administration and, heaven knows, we had lots of opinions. All I can say is that hospitals are struggling to find ways to digitize some of the patient's experiences. For example: follow up questions instead of appointments or video appointments or emails and even text messages. What is appropriate? What is not appropriate? It was an interesting discussion.

Later in June, I will have my first video appointment with my liver doctor. It is just a check-in but it will save a trip into the city, no parking fees and should just take minutes. At the meeting last night, we realized that I would be the first one in the group to experience this new technology. They are looking forward to hearing about all the details in our next meeting.

During the meeting, my mind went to the geriatric patients who find it difficult to leave their homes for doctor appointments where the caretakers are often questioned more than the patients. A video appointment really makes sense. I also thought that the millenniums would probably love the idea of staying at home or work and seeing a doctor via video.

Technology! The world is changing!

Thursday, April 26, 2018

Change of Plans

Best laid plans...my hair appointment was cancelled today as she had to fight a ticket in court. Adjust and keep moving forward. Hopefully, she will fit me in soon as time's running out. Other stress also includes a last minute problem with one of Michael's dearest friend's truck. He needs him to fix something for him before we leave. What we don't want is to be frantic and worn out and tired going into a long road trip.

Just when I thought I had our prep time organized and under control.

Final rehab class is today followed by our PFAC meeting at my university hospital. With so few people on the board, we really don't want to miss a meeting. I think I can take a deep breath when I climb into bed tonight. The focus from now on will be the trip prep and my mom, her doctor appointments and just spending time with her. She is really going to miss our time together but I will phone her every other day and send photos.

While at class on Tuesday, Janet was given a Aerobika device from the head of the program. She struggles so much with mucus every morning and wheezing all night long. I am so excited to learn if she feels a difference yet, though it has only been two days. She was so thrilled to get it.

Wednesday, April 25, 2018

Talk Amongst Yourselves

George and Sherman. They were each other's
best friend. They died within months of each other.
Before the rehab class yesterday, there were five of us sitting in chairs facing each other in the lobby of the hospital. Barry arrived to complete the circle and it was then that I began to notice something.

Usually, I am the person who keeps the conversation going and I try to bring each person into the discussion. Yesterday, I noticed that they were are all sharing. Each person added to the conversation without any help or prodding from me. It was from that point on that I kept my mouth shut. It was marvelous. Even the shyest of the group shared her opinions and even made a joke that made everyone laugh.

I think the class is the mellowest it has ever been. It is just a group of really kind people. Everyone talks with everyone. Losing Sherman has been painful and I so deeply miss him but, for the first time since his death, I am once again enjoying going to the class.

My last day is tomorrow. Next week, I will be focused on the trip.

Today, my list is long but it begins with breakfast out (I will have a third of an omelet from Michael's plate) before his dentist appointment followed by his hair appointment while I head over the pass. I need a sweater for my new dress, a box of See's Candy for Anna and the final grocery run at Trader Joe's. This afternoon, I will continue to work off the to-do list around the house.

Ten days before the trip.

Tuesday, April 24, 2018

Kindness

You can accomplish by kindness what you cannot by force.
Publilius Syrus

There are only two more days of the rehab class before our trip. Today will be the usual run over the pass while Thursday will be a bit different. Barry will drive Jeannie home so I can leave to meet Michael for a PFAC meeting at my university hospital in the city. It is going to be a good one as we have a major person wanting to present to us and to ask our opinions. Yup, a room filled with Type A people and someone asks for our opinions? Others have been overwhelmed by our responses. It should be an interesting night.

The experiences of being seen in 15 clinics on three different campus has been invaluable in these meetings. I have learned to observe what makes a well-run clinic and how to work the system. Every hospital has a process that we sometimes need to work around.

I think the best advice I could give anyone going to a new clinic or seeing a new doctor in his/her office is to be kind. Arrive on time or even a bit early. Be clean. The front desk people can either help or hinder you. If you storm in and demand to see the doctor within a few minutes (I've seen this more than once), no one will go out of their way to handle any problems for you in the future. Sad fact, but true. When I am taken back to a room for my vitals to be taken, I always ask that person if they live close by. This is a great conversation starter then often it continues about our children. A connection is made. They will remember you in a positive way as you get them talking about themselves and show interest.

The plus side of all this? I am remembered and greeted by name when I arrive for an appointment, I often leave the clinic before my appointment time as they have taken me early because someone else was late, the front desk will make appointments for me for tests instead of having me do it, a time for a next appointment will suddenly open up exactly for the time and date I wanted and, best of all, one doctor told me that his staff loved me. Longtime relationships also develop and going to the doctor sometimes feels like a visit with good friends.

Kindness opens doors and works magic.

Monday, April 23, 2018

Noticed a Change

Something pretty wonderful happened yesterday. I did my morning routine of thyroid pill, eye drops and Aerobika. Standard. I did many things like created an amazing Sunday morning breakfast before doing a bit more work on my list of things to do before we take off on our trip. Normally, I take my inhalers and nose spray before leaving the house or if I am doing chores/gardening around the house.

After lunch, the gardens called to me, I trimmed a few things, fertilized over a dozen rhododendron and camellia plants and watered everything. It was then that I asked if we could check the electric sprinklers to see if all was well. That turned into a major chore, which involved walking at least two dozen times between the back yard and  the programing box in the garage while Michael fixed so many problems. He is a genius!

I spent the afternoon trimming, weeding, a lot of standing in the sun, working on the sprinklers, watering the entire yard by hand and generally not resting or sitting or stopping.

It only occurred to me later that I had never used my inhaler yesterday and that I did physical work in the garden without oxygen all without coughing! I swear it due to the new Aerobika device. I have noticed that I am not getting the amounts of clear mucus up as when I first began to use it. My guess is that I have cleared it out and only am dealing with smaller amounts each day. It is allowing circulating in the lower part of my lungs to keep infections at bay and less coughing. Amazing.

Sunday, April 22, 2018

Just Do It

Two weeks ago, I was concerned that my energy level was not high enough to either get ready for the three-week road trip or for the actual trip itself. Was I going to have to sleep my way through it all? Will I get sick because of exhaustion? Will all the preparations for the trip get done?

Amazingly, it happened again. It seems that what I had forgotten was the more I do, the more I can do. It should be my motto. Slowly, I began to tick things off of my list. Most of those things included having to buy something over the pass or organize something in the house. The past few days, I have really nailed a lot off that list.

I was like the energizer bunny yesterday. After two hours working in the gardens, I washed five loads of clothing then spent another two hours ironing. They are now hanging in William's closet and ready to be packed. It was a lot of work but we are ready to pack them up.

Then, I hopped up and roasted some cauliflower to have with dinner as I still had leftover energy.

Though I must admit that I passed out early last night, I felt great. Filled with energy. This morning? We are staying home all day to do more work in the gardens including watering the pots and fertilizing the Rhododendrons and Camellias. I am ready to get going.

Friday, April 20, 2018

Medications


Medications. I take a lot of them. This list is always with me along with my list of illnesses/surgeries and family medical history. It has saved me several times while visiting ERs or doctors out of town.

Before rehab, we sometimes talk about what drugs we take, how much of each drug and how long we have been taking them. I think I always win for longevity. The list is below and it also includes over the counter drugs. Two drugs are directly related to treating my lung disease - Azathioprine and Prednisone. Many others are related to the side effects of those drugs.

Diseases:       Hypersensitivity Pneumonitis – Interstitial Lung Disease
                        Hashimoto’s – Autoimmune Thyroid Disease
                        Glaucoma – Eye Disease

Atorvastatin  - 20 mg. – 1x per day for high cholesterol due to prednisone

Azathioprine – 50 mg. – 75 mgs 2x per day –drug for lungs
                                                                                                               
Brimonidine Tartrate (Alphagan) – 1 drop 2x per day for eye pressure

Dorzolamide HCI-Timolol Maleate – 1 drop 2x per day for eye pressure

Ipratropium Bromide Nasal Solution – as needed for runny nose

Latanoprost (Sandoz)- 1 drop 1x per day for high pressure in eyes

Levoxyl - .15 mg. –1x per day– for treatment of Hashimoto disease 

Oxygen – 2 liters at night and exercise
                                
Prednisone – 15 mgs. – 1x per day – for lung disease

Proair – AER 90MCG – 2 puffs a day

Prolia – injection for bone loss – 1x per year

SMZ/TMP – 800/160 – 1x three days a week – for Azathioprine side effects

Spironolactone – 50 mgs. – 1x per day – as diuretic because of prednisone


OVER THE COUNTER

Calcium – 1500 mgs 2x per day                      
Cranberry – 12,600 mgs 1x per day
Omega-3 Fatty Acids Fish Oil – 500 mg 
Hair, Skin and Nails Formula (vitamin supplement) – 1x per day
Melatonin – 3 mgs – as needed 
Miralax – 1 capful every morning (used to combat UTIs)
Osteo Bi-Flex – 1 tablet per day
Replens - .24 oz. vaginal moisturizer (used to combat UTIs)
Vitamin D – 2,000 IU 1x per day
Vitamin C – 600 mgs 2x per day
Vitamin E – 400 IU 1x per day

Thursday, April 19, 2018

Eye Drops

Glaucoma. Prednisone caused. Scary. I am beginning to lose my vision in my right eye and am very careful about using my eye drops at the same time everyday.

In the morning, one drop in each eye of Dorzolamide-Timolol and Brimonidine Tartrate. At 2:30 PM,  one drop of Latanoprost in each eye. Great. Been doing this routine for years. But, there is now a problem.

The company who makes Dorzolamide-Timolol, which is the generic drug for Cosopt, is having problems and has not making the drug. No one can get it.

Mom also uses it and her doctor prescribed two other eye drops combined to have cover her while we wait for the drug to come back. Rumor has it that it should be soon.

The problem is I only have enough for a month from right now. We will be on the road trip when I run out. What to do? Yesterday, we dropped by my glaucoma doctor and they gave me a 30-day supply of free samples so I am covered. By the time we get home, I should be able to order it again. I hope.

Today is rehab day and there are only three more rehab classes before our trip. Barry has agreed to drive Jeannie while I am gone, if he is in town. She also has learned that her hospice people arranged volunteer drivers in case she needs them. Love hospice. It has made her life so much easier.

Wednesday, April 18, 2018

New Approach to Lung Cancer

Barry, a rather new guy in the rehab class, told me about this report he saw on CNBC over the weekend. He didn't have all the facts so I looked it up. It is about immuno-theraphy breakthrough for lung cancer. So interesting.

HERE

I like to catch the new people in the education/workout part of the pulmonary rehab's initial 8-week program. After Phase 1, people can choose to join us in maintenance where we pay $15.00/class. A bargain considering it is almost like a physical at the beginning and end of each class. If something is brewing, these RNs are the first to spot it. Often, I have asked them to listen to my lungs.

As they leave class, I have been chatting with two women from the Phase 1 class before our class begins. Chatted them up. One of the ladies stopped for a good talk and I think I was able to impress her enough for her to consider spending the money every month for the maintenance classes. What changed her mind was how sick I was, how well I am functioning and the promise of a longer/better quality of life. She had noticed that with each week of her classes, she was feeling better and better. She was not on supplemental oxygen yet so she will not be in our class. I joked with her that she needed to get really sick really fast so we could have her in our class! She seemed like such a nice person.

Michael and I are swing by my glaucoma doctor's office for some free eye drop samples for the trip, food shopping then he finally consented to a pedicure! We are having them done for the road trip.


Tuesday, April 17, 2018

Scotch Eggs


Leslie's husband, Joe had a major problem at his work, which made the news. We didn't see him a lot, he lost weight though he was already thin and did not sleep well for weeks. We finally had a chance to chat at last week's rehearsal where I told him the Scotch Eggs were almost in the rotation for Michael's breakfast. Pure protein. He had loved the two I had sent over almost two months ago and wanted more.

Yesterday afternoon, I ran two Scotch Eggs over to their house for Joe. That was the problem. I ran. By the time I got there, I was short of breath and coughing. Hate that.

It actually is a really good diet breakfast for me, too. Diet. I haven't blogged about my diet or recipes in a long time. If one is on prednisone, it is so important to be very careful of anything that will process into sugar then quickly to fat. We don't process sugars well.

My daily routine is 1,200 calories to lose weight and 1,400 calories to maintain my weight. Anything over that is a gain. It has been seven years since I lost all my additional weight and I met the BMI entrance to the Lung Transplant Clinic. If I gain a pound, I feel it and don't like what I am feeling! Making a weekly menu and having all the food in the house ready to go is the main reason I have been able to keep the weight off.

So, here is the recipe of the day. Paleo Scotch Eggs. HERE (I use Jimmy Dean Breakfast Sausage sliced into six thick slices for the patties to wrap around the eggs.) The photo above was taken moments ago. For his breakfast, Michael cuts one into quarters and microwaves it for 30 seconds. Perfect!

Monday, April 16, 2018

A Couple Traveling Goals with Lung Disease

I am still recovering from the Saturday night gig with the Irish Fiddling group. Yesterday was okay but I feel a bit ragged this morning. That is one problem I am discovering: it takes longer for me to recover from events lately. What used to take a day now takes two or more days to feel like I have my energy back.

After a field trip down the coast yesterday, Michael and I sat and made a list of all the things we need to do before our road trip less than three weeks away. Time is counting down but so much can't be done until that final week. Makes my head spin.

The concern is that the road trip will be so intense that I will be constantly exhausted and not able to take those days to recover. Will that cause me to get sick? We have talked about making sure I nap in the car during the longer stretches and try to maintain our regular bedtime as a couple ways to combat the problem.

Food is another issue. We still want to experience the local foods but I will be very careful of calories as I am meeting with the nutritionist two weeks after we get home. That will keep me honest during the trip. Sometimes, when it was banned food like Chicken and Waffles in Atlanta, I would ask Michael for one fork filled with a bit of everything. One taste. Good enough.

Saturday, April 14, 2018

Aerobika Update

Here is the promised report regarding the new device - Aerobika. It took a bit to find a routine that worked for me. Only after a light bulb appeared in a bubble above my head did it occur to me that my coughing first thing out of bed in the mornings might be a sign. This might be the perfect time to use the device to clear out anything that had settled deeply in my lungs during the night.

I had been using it in the mornings before leaving the house but it was using it immediately after getting out of bed when it all began to click.

Up. Thyroid pill and eye drops. Aerobika.

I use it until I cough hard enough to bring up white mucus and my nose needs blowing. Mucus has never been an issue so I am presuming this gunk is coming from deep in my lungs.

What I have noticed was not only had it stopped my nose from running but, I no longer have a nighttime cough after changes positions in bed during the night, I don't cough anymore while walking up the flight of stairs to mom's apartment, the wheezing has stopped and just the overall coughing has been greatly reduced.

So there it is. It is worth doing, in my case. The hope is that this routine supports my constant battle against bronchitis and reduces the threat of pneumonia.

Friday, April 13, 2018

Small World

Jeannie and I went to a visitation for our rehab friend Rob. We met his wife and three sons. Rob had joined us from another rehab program that had shut down and loved our program. He would ask his sons to drop him off an hour early so he could talk with our little group in the lobby. I learned last night that when his wife picked him up after class, he would talk about all the conversations we had with each other.

Me? She mentioned to me that he talked a lot about me. I laughed and said, "I hope it was good!" She was struggling last night but I was able to get her to laugh a couple of times. Her sons also were struggling. Two of them work for fire departments and one is a long haul truck driver. Rob was so very proud of them. They are spreading his ashes at his favorite hunting and fishing site high in the mountains that he loved so dearly.

Jeannie was able to express her fondness for him and how he helped her through some issues. The family was very tender and kind to her.

The room was beginning to fill with people for the rosary and people were meeting the family. I heard one introduction and recognized his name. I messaged what this man looked like and asked Michael if he was who I thought. Yes. The man is a huge deal in the car world.

While I waited in the lobby for Jeannie to use the restroom, I spoke with the funeral director. It went from chat about the area, marching bands, music to the school where I got sick. It turns out his child graduated from the school in 2015. He asked me specific questions to see if I really knew what I was talking about and I passed all the tests. Suddenly, the flute player from the little orchestra here on the coast walked through the doorway! What are you doing here? It turns out that her daughter is an EMT for the same fire department as one of Rob's sons and they just bought a house together! Small world! After a brief chat, Jeannie and I headed to the door. The funeral director walked us out, shook my hand and said it had been a pleasure to meet me.

After I got home, I showed Michael the program for Rob's services, which included several photos. Michael recognized him, "I have seen him around car stuff."

Small world.

Thursday, April 12, 2018

Tons of Information from the Beginning of my Journey


Looking for some information, I bumped into this blog written towards the beginning of my long road of living with a bad diagnosis. It is filled with so much that may be helpful for those also beginning the journey. The newly diagnosed. Here it is:

I thought this might be of interest. It is very personal and brought back some bad memories. It was part of the application for the long-term disability insurance and written on July 24, 2007 – approximately 18-months after my lung biopsy. I have come a long way physically from where I was back then, thanks to rehab. Specific questions were asked but I no longer have that paperwork. What I do have are the answers which are below. Don't miss my comments at the end.

1.  I have discovered that there is no typical day. My day depends on what I did the day before, what I need to plan to do the next day and what I must do that day. Through trial and error, I have found that I can do two adult daily living activities per day: shower, rehab, light gardening, cooking dinner or dining out. Due to rehab and increased muscles, I have found that I can sometimes add a third activity and not suffer the following day. This must be planned ahead in order for it to be successful. To continue making the bed, rehab has taught me to put blocks under the feet of the bed so it is higher as this will lessen the chance of being out of breath. We recently purchased a higher bed. (Being out of breath means that my organs are not getting the proper amount of oxygen.) I take a short, tepid shower every 3 to 4 days, as it is exhausting and it must be planned. I can blow dry my hair due to the muscles I have developed in rehab. Sometimes I become short of breath during it but not too often anymore. Afterwards, I still need to pause to control my breathing. On shower days, it takes quite a lot of work and energy to dress for the day. I drive just over an hour round trip to go to Pulmonary Rehabilitation twice a week for 1.5 hours and I do the same workout routine in another hospital 2 or 3 days a week. Rehab is my first priority. I need muscles to help survive the upcoming lung transplants and to get underneath the needed BMI. After rehab, I usually come home and rest (often nap), make or return phone calls or answer e-mails. Sometimes I enjoy working on word or card games to exercise my brain. We sometimes take a short car ride into town after dinner, just to get out.
CHANGED:  My life before my illness was dramatically different. I have listed many of the differences under #12. Nothing can happen on the spur of the moment. Everything must be planned so I can conserve energy. I still struggle making myself slow down. My son recently lectured me about trying to talk and walk at the same time. I just don’t have the breath.  We used to entertain a lot. All family gatherings were at our home. That is just not the case anymore. In the past, we hosted three weddings in our home, I prepared all the food, and I cleaned my house and worked in my gardens. I used to be very social and upbeat and now I avoid seeing people who don’t know I’m ill, I’m more reserved and very envious of people who can function unimpeded. I used to enjoy working, traveling, shopping, taking hot showers, cooking large gourmet dinners, hosting parties, and performing music. My husband and I used to take long walks along the coast every weekend. We longer can take long walks together. He has become a caretaker.

2.    All meals have become very easy and light. Breakfast may be a hard-boiled egg and lunch may include leftovers or hot food from a supermarket. My husband and/or I make dinner. We have learned in rehab that in order to save my energy, we cook one thing to last for 2 or more nights. Dinners are often a shared packaged salad and protein baked in the oven or in a skillet. The leftover protein is served the following nights. As an example, we often cook a turkey breast that we eat with a vegetable one night and in a salad the following night. It is also served for lunch. All meals are served on paper plates to save my energy of washing the dishes, putting them in a dishwasher, then putting them back into the cupboard. Often the items in the sink are just forks and glasses. My husband often cleans up from dinner. We usually eat around 5:00. Gone are the days of large homemade dinners.

3.    At least once per week I need medication refills at Longs Drugs. We food shop together every week because I become overwhelmed and it is difficult for me to bring the groceries into the house. I do not shop for clothing very often and we purchased most of the Christmas presents in one day or online. 

4.     We have just hired a gardener (NOTE: I fired them within a week.) as I have recently found that I do not have the strength or energy to maintain the gardens. My husband has handled the heavy trimming for a while. We have help with the housecleaning as that is clearly beyond what I can do. I can put clothes into the washer but find it difficult to transfer them to the dryer, as they are just too heavy. My husband also moves the dry wash into the bedroom. 

5.    The goal is to leave the house five days per week for rehab (whether I feel like it or not) or doctor appointments via automobile. My husband and I often go food shopping, pickup dinner or go for a drive on the weekends. I always take naps on the weekends. 

6.    If it can be planned ahead, I try to always accept an invitation to meet people for lunch or coffee. I feel that this contact with healthy people and rehab are the reasons that I am not on anti-depressants. Connecting with friends to talk about other things besides my illness is life saving. In the past few years, there have been weeks between invitations but recently; I have been having lunch with a friend almost weekly. I plan for and really look forward to these visits in which we very rarely talk about my illness. It is also extremely rare to have people over to our house. If we do, we serve prepared food from the market on paper platters. My mother comes to visit for 2 to 3 days every three to four months. She takes care of me while she is here and leaves the house cleaner than when she arrived. She and my son are the only people we have allowed to stay with us since I became ill. I just don’t have the strength to entertain house guests. Instead, I find it an escape to take short car trips (arrive in one day) to see my son, mother and mother-in-law. Some trips have been successful while others have not. The rehab staff has been working with me to learn how to travel without becoming ill. They continue to encourage me to travel more and have taught me to wear compression hose for my swelling ankles, stop at all rest stops, drink lots of water, keep eating light foods and try to sleep as often as possible. My husband drives. 

7.    No one but my husband depends on me. I became ill after my son left home for college. I did visit my aunt for an hour once a week before rehab class. In the past two years, she did not require much other than chocolates, lotions and conversation. She passed away June 17, 2007.

8.    I have never had a problem with alcohol or drugs. 

9.    The TV is on when I am home. I watch all the basic channels, as we do not have any premium channels.
CHANGE:  I watch a lot more TV than I have ever watched in my life. It makes it less lonely. 

10.  I am in bed by 8:00 and usually asleep by 9:00. Due to the illness, I sleep on a foam wedge and I need 2 liters of oxygen. Insomnia has sometimes been an issue. The pattern is that I will sleep for 4 to 6 hours, be awake for 1 to 2 hours then fall back asleep for 1 to 2 hours. During these wakeful periods, I move to the family room and turn on the TV.  After a few days of this pattern, I am so exhausted I take a single Tylenol PM that allows me a full eight hours of sleep. I know when I have over-extended myself because I will sleep straight for 12 hours or more followed by several more days of extended sleep. I usually take at least one nap every day during the weekend and often take a nap after rehab, which may last anywhere from 20 minutes to 2 hours. 

11.  I have found it increasingly difficult to take care of my personal needs. After a shower, I take a break to catch my breath before I get dressed. Often I must stop dressing in order to get my breathing and sweating under control. I do not try on clothes at a store as I run out of breath. I need help with the laundry, food and clothes shopping, dinner preparation, housecleaning, gardening, and taking care of my spouse. I could not live on my own at this point. 

12. I used to be so proud of my stamina level, ability to work long hours and do it all. Energy conservation is the biggest and constant challenge. We stay home more than we ever have in our married life. I used to cooked great dinners and we went out to eat 3 or 4 nights a week. Now dinner has become very basic and simple and we eat out less, currently about one night every two weeks. One of the biggest changes has been not being able to play music. I loved performing with various groups and orchestras. When I became ill, it became impossible to even carry the instrument (string bass) and even more impossible to participate in the hours of rehearsals. I used to love to go to the movies but have gone to fewer than six movies in the past two years. I just don’t have the energy for it. I have been to several live concerts (mostly to see our son) where we have been separated from the crowd and provided very comfortable private viewing. These have required a great amount of preparation and recovery time. I greatly miss contact with children. As I am still on prednisone and am currently on a bone marrow drug, I have no immune system so I try to also avoid large groups of people. I have experienced many reactions to the various drugs including: shingles, weight gain, excessive bruising, thrush, loose bowels, nausea, fatigue, high pressure in my eyes, increased sweating, leg cramps, swelling of feet and ankles, lose of bone density, manic (in the past), compromised immune system (Cellcept) and an increase risk of infection. When I get fatigued, my saturation rate drop and I do not function well mentally. Memory problems are prevalent and I have lost much of my short-term memory for names and dates. I sometimes struggle to find a word. I am told that it is probably related to the decrease in oxygen. Concentration and focus problems abound. I used to devour books but at this point, I read magazine articles. I just can’t focus. Larger tasks feel overwhelming. I had begun some larger projects and found that I just couldn’t complete them (creating new photo albums, sewing a blanket, sorting music). I have been a “walker” all of my life. As I child, we walked into town or to go to church. In high school, we often walked six miles to the shopping center for fun. While dating, my husband and I walked for hours and it has continued throughout our marriage. For years, after dinner we would walk along Main Street in XXX. On weekends, we hiked or rode our bikes for endless miles along the coast. All of this has ended. I cannot walk quickly. I cannot run up stairs. I cannot walk up long ramps. For over a year, we took ballroom dancing lessons with the Arthur Murray Dance Studios and we used to love to dance with each other. This has become impossible. We had traveled a great deal within the US and Canada as well as the Caribbean and Europe. I have not been well enough to fly. As I need oxygen at night, all trips must include preparation to have the oxygen ready for us at the other end. I loved lotions and perfumes. Now I go through periods of super sensitivity to all aromas. While in this period, I can smell people’s deodorant and even the preservative in lipstick. I no longer wear much makeup or any lotions. I cannot breathe well in hot or humid weather. Our location on the coast in the perfect environment for my breathing: cool and moist. I had planned to work another 15 years and to retire away from the Bay Area. We now need to stay in the area not only for the outstanding medical care but the necessity of a low elevation and a cool climate. I have given up all caffeine except for a half of a cup of coffee every morning. If I drink more, I find that it makes me sweat, increases my heart rate and makes it hard to breathe. I still tend to panic in situations when I think I won’t be able to do something or breathe. Rehab has taught me to try to relax and control my breathing. Sometimes that is easier said than done.

How was that for light reading? 
I hope it has helpful information and hope for others at the beginning of the process of living with an ILD. 

After reading this document, I am proud that I have fought and continue to fight a valiant battle. I won't go quietly into the night. Just not my style!

Wednesday, April 11, 2018

Traveling with a Lung Disease

Traveling with a lung disease can be a challenge. Portable oxygen systems have made it a lot easier as they can be run on the lighter in the car and plugged into the wall of hotels for sleeping. In the old days, we had to order my huge liquid oxygen tanks to be delivered to the hotels along the way. They have since been banned as they can be used as a bomb, so I was told in Las Vegas.

I am not allowed to fly so we do long road trips to see the country and visit friends/relatives along the way. Our first trip was a disaster. We went to Las Vegas to visit Michael's mom, the weather was hot, my ankles swelled, Michael got a virus while we were there and shared it with me on the way home. I got very sick. After returning to rehab, I swore to the RN that I was never going to travel again. She smiled and said, "We will give you the skills you need." Skills? Okay.

Several months later, with the skills in hand, we took a "test road trip" to Seattle to visit William. It was such a success that we have never stopped traveling since. The difference was that I wore compression hose during the day to control the ankle swelling and I would actually rotate my ankles in the shape of the alphabet to keep the fluid moving. At night, I would remove them to preserve the skin. It worked and I still travel with compression hose and rotate my ankles whenever I think about it. At the hotels, she told us to wipe down the room with Clorox Wipes. Everything from the TV remote to the light switches to the water faucets. Michael and I have become so good at this that we can do a room in just a couple of minutes.

We also learned to stop at rest stops, get out, take the long way to the rest rooms, do my warmup exercises to get the blood moving and to drink lots of water. I know, that means more bathroom stops but it worked out great as my ankles were happy throughout the long trip.

The RN also taught me that how and what to eat was also important. Avoid overly salty foods and "heavy" foods. Keep it light as digestion is easier instead of that uncomfortable feeling of being too full while on the road. She also mentioned that it was okay to nap while Michael drives.

The road is out there waiting. Give it a try. Here are just a few photos from a few trips: the views, a rib joint off of a dirt road deep in Alabama, Michael in Seattle with the Space Needle, we stumbled into the Duck Dynasty boys at their factory and Michael sealing his Maker's Mark bourbon with wax while on the Bourbon Trail.

Tuesday, April 10, 2018

A Moment about Research

It was January 12, 2005. I was in the surgery waiting room with mom and Michael. Nervous. It was time for a lung biopsy along with a couple of days in the hospital. The last time I had been in an hospital was to give birth to William in the early 80s.

Suddenly, this handsome, very tall doctor asked to speak with us. We were taken into a quiet conference room where he very politely asked if they could use a tiny bit of my lung biopsy for a research data base. (He was Dr. C, the head of the ILD clinic who turned into a dear friend of mine through the years.) Without a moment of hesitation, I replied that not only could they use any leftover lung tissue, I gave permission to take extra, if needed. He smiled and said that would not be necessary. That data base has been used for so much research not only at my university hospital, but at research facilities all over the world.

I believe in research. I believe that these diseases will be cured through research.

Currently, I also am involved in a brain research project. I noticed that I was losing my short term memory in tiny ways after beginning Lipitor. I wanted to keep an eye and it and prove it. It involves taking brain games tests every six months, one visit to the offices in the city where I gave saliva for DNA testing and a brain MRI.

In the past, I can remember being involved in a lung disease research project having to due with grip strength. That was a weird one! All in all, I remember participating in about 5 or 6 research projects. All the lung disease drug testings were only requesting patients with IPF so that left me out. If I qualify, I always volunteer.

Please consider participating in a study or project as it just may be the one that changes the direction of a disease. Wouldn't that be wonderful?

Monday, April 9, 2018

Parking Towards Independence

Not all disabled people limp. It seems that most of the public population assumes that if you have a disability placard, it should be an obvious need. Forget people dealing with serious heart or lung issues!

Feeling guilty using the disability parking spots? When Dr. K. insisted I get a disability placard, I used to feel guilty using it as there were plenty of "more disabled" people who might need the parking space. Through the rehab class, I learned that every time I parked closer to where I needed to go, I saved myself energy nuggets to be gathered throughout the day and used for maybe another activity of daily living. I was skeptical but it really worked well. With working out in class two days a week, I quickly discovered that I could begin to add one activity of daily living. After several months, I was able to go food shopping alone for the first time. Freedom! Independence! It took a bit longer to be able to load the groceries into the car and walk them into the house but, I did it.

The problem is that people judge how you walk and deal with things when you use a disability parking spot. Since lungs are not visible, my disability is not obvious. Through the years, I have been confronted by only two aggressive older men demanding to know why I was parking in the disability zone.

I am prepared and ready for anyone who wants to challenge me as I am taking a different approach. I could choose to be angry and tell them it is none of their business or I can teach them. As a former teacher, I always choose the latter. I will start with my beginning symptoms and all the doctor appointments and can really drag out the story for an hour. They will never last that long but eventually they get the idea that, yes, I really do need the disability placard. I hope they learn to never challenge another disabled person again.

To all the disabled people out there, remember to keep a copy of your disability placard paperwork from the State in your glove box as any police officer can demand to see it.

To those of you who wonder why someone is using a placard because they look and move normally, it is okay to call the police. There are people out there using stolen placard or ones that were issued to someone who had since passed away. Cheaters.

Bottom line for people with lung diseases? Park in the disability spot, hold you head high, gather your energy nuggets for more activities of daily living which will keep you moving toward re-gaining and keeping your independence. Independence. That really is the bottom line.

Sunday, April 8, 2018

Finished


It had been so many years since I made a quilt but I wanted my niece's little girl to have something from me long after I am gone. Climbing around the floor tying it off yesterday was the final challenge. Sewing, cutting, ironing and focusing on all the tiny details was so much more difficult this time around.

This is probably my last quilt.

It was a challenge as she wanted nothing pink, something with forest creatures and the walls in the nursery are a dove gray. I think I filled the bill with this "Rail Fence" quilt. I even found a dove gray flannel fabric for the backing with the sweetest words, "You are Loved" throughout the pattern of flowers and leaves. Sadly, I don't think this is my best work but it was the best I could at this time of my life.

When I give it to Shelley at her baby shower after our road trip, a children's book featuring forest creatures will also be included with a special note to the baby.

Finished. It felt pretty good to say that out loud yesterday.

Friday, April 6, 2018

Quotable

With my sore hip, I did not workout at the rehab class but did a quick run to Trader Joe's and arrived back before class even started. I sat at the back of the room, on a chair like a throne, and chatted while my classmates worked out with the free weights. It was fun but I really missed working out. Jeannie was so grateful that I still drove her to the class.

My hip is better today, made it through the Irish Fiddling rehearsal last night and will hopefully be painfree for the gig tonight. Aleve helped.

About six years ago, I was a featured speaker for the American Thoracic Society's International Conference. They wanted a patient's story. It was fun and the response was very positive. They published parts of my speech afterwards and I thought that was it. The End.

Yesterday, I got an email from them wanting to republish parts of my speech with the focus on pulmonary rehab, clearly a passionate issue for me. Of course, I gave permission for it to be used and I added another comment about the importance of rehab, which they then asked permission to use that quote as well! I was full of quotable material yesterday!

Now, a photo. Though I was not dressed for rehab, we faked a poise on the bike in rehab, sent it and will take another photo at the Irish Fiddling gig tonight. They may or may not use them but, I have offered the requested "active" photos.

Thursday, April 5, 2018

Ouch

Before spending the yesterday with Barbara, without her daycare kids, I went to Safeway. Sounds safe enough? Nope.

X-Ray of Fractured Knee, February 2017
I had sandals on and was walking the aisles when I pivoted on my right foot and felt a pull and tear where my leg attached to my hip. Nuts! I could barely make it through the store and limped home. The problem with being on prednisone since 2005 is that it depletes bone mass. I am beginning to have to deal with that and I am trying to be extra careful knowing that just a little slip or fall could break something. Having made it through the fractured knee last year, I really don't want to break anything soon!

Barbara and I had a ball and a fantastic lunch together while talking about her upcoming retirement and road trips. After getting home, I took an Aleve with dinner and it helped quite a bit. This morning, it is stiff and sore so I will be driving Jeannie to rehab class but will head to Trader Joe's while she is working out. My hip needs a rest and I will return to rehab next Tuesday.

Wednesday, April 4, 2018

Rough Day in Rehab

The hardest part about being in a pulmonary rehab class is that eventually, we are going to lose friends. Often, someone will not show up for class for months then we hear that they died. Everyone from all my previous classes are gone, I am the last one standing and it feels rather weird.

Before class today, the RN came out to the lobby and gently broke it to us that Rob died over the weekend. We had been so worried about him that we sent a card from all of us filled with our wishes for a good health so he could return to our class. He was a great guy, had a fantastic wife and was very proud of his two adult son but his health was failing. He made his final trip to their vacation house in the mountains of Lake Tahoe but the elevation was very difficult for him and he was clear that it was his last trip there.

Rob qualified for lung transplants several years ago, his number was called, he was on the table ready to have his lungs removed when my Dr. K. , of all people, noticed a lump in one lung. She immediately suspected cancer, they closed him up and no transplants happened. He was furious. It was only a tiny bit of cancer. He went through surgery to remove the lump and had all the processes to make sure it was gone. As he bumped into being too old for transplants, he recently met with the transplant clinic doctors who broke it to him that he needed to be five years free of cancer inorder to qualify for lung transplants. By that time, he would be too old. He was not going to be able to qualify for transplants.

What made tears come to all of our eyes was that his wife was sobbing while telling the RN that her husband had died but wanted to relay a request from him. He had instructed her to call the rehab class after he died and to tell us that he loved each and every one of us.

Still teary.

He was a good man. May he rest in peace.

Tuesday, April 3, 2018

Learning From Others

 I have learned a lot talking with the other patients in the pulmonary rehab class. The most important lesson I learned was from a gentleman who, while I knew him, had horrible lungs, a heart attack and a broken hip. After each problem, he returned to our class. He and his wife were dog breeders and well respected dog show judges. Nationally and internationally.

He was the one who encouraged me to follow the process for future lung transplants. I was surprised to also learn that he was a gardener only he needed a golf cart and long-handled tools to continue his passion.

The biggest lesson I learned from him was to adjust my life for the disease in order to continue living my life to the fullest. Adjust and continue moving forward. Living well with a bad diagnosis.

Also in the rehab class, I have learned what NOT to become while living with a bad diagnosis. We had a woman who was a former Miss California but now well over 300 pounds living with an ILD. I soon learned to never, ever ask the benign question, "How are you?" If it slipped out, I was never prepared for a long literary of all of her physical problems and the reasons her doctors were doing everything wrong.

I never wanted to become a person who became the disease. A person able to talk about nothing else other than their disease. A person who talked about their disease all the time.

Instead, I wanted to learn about and accept the disease, adjust my life for the disease and to keep living each and every day. When someone asked me, "How are you?" I always replied, "Great!"

The downside of this is now beginning to show. All the relatives are not very clear about the difficulties we are now dealing with, how the disease has progressed to almost transplant levels and all about that process. As one of my relatives said, "Once you get lungs, you'll be cured!" Clueless because I have not wanted to burden all the details upon others. She is unaware transplants are a treatment not a cure.

Our son and my mom get it. They know what we are dealing with in our daily lives. We only talk about it when there is a problem. Life is too short to talk about it all the time. I really don't want to become the disease as I would rather live life to its fullest while I am able.

Once again, it's a choice.

Monday, April 2, 2018

Re-Focused Blog

The new blog! Re-focus. Living Well with a Bad Diagnosis.

I have learned so much since being diagnosed with Hypersensitivity Pneumonitis in January of 2005. One can choose how to deal with a bad diagnosis. The choice is ours to make.

Do you learn everything you can about the illness? Do you work with the doctor as a partner in you care? Do you know your medications, what each pill is for and take them exactly on time every day? Do you keep track of your pulmonary function test numbers? Do you join a pulmonary rehab program?

Or, do you deny that there is a problem because you don't feel any different? Do you feel frightened for the future? Do you feel vulnerable? Do you find it hard to get out of bed? Do you decide to give up because there is no hope?

Believe me, I have worked with people from both categories. I try to offer hope in the form of diet and exercise. Consistent daily exercise is the reason I am still alive and functioning with horrible PFT numbers but without the need of supplemental oxygen 24/7. Beginning in October 2005, I began pulmonary rehab at a local hospital, discovered that a gym at a sister hospital was free to members, got approval from my doctor and began working out five days a week for over eleven years. One the sixth day, I worked 3-6 hours in my gardens and on the seventh day, I rested.

I did it because it made me feel so much better and able to increase my activities of daily living. The side effect was that I have a fantastic heart, which was recently tested for the lung transplant clinic. All functions are normal, which is very unusual for a person with a long-term lung disease. Usually there are issues due to oxygen deprivation.

So, the choice is yours. Will you choose to live well with a bad diagnosis or choose to throw in the towel and wait to die?