Difficulty Swallowing

Today at the Northern California Amyloidosis support group, one participant commented on a recent  event where she tried to swallow a large pill and it got stuck in her throat. Nothing she tried could coax the large oblong tablet to dislodge. Nor could she cough it back up. Finally her son took her to the emergency department for help. By the time she got there, the pill seemed to be gone but she had an irritated larynx for days afterward. This struck a chord (vocal, that is) with the rest of the group. Soon there were similar stories shared as well as suggestions and remedies. One such patient also was evaluated with a swallowing study and was recommended for swallowing physical therapy.
Why is this such a big deal. Well, it turns out that swallowing can be a very useful reflex. Not only for beginning the process of life sustaining alimentation of food  and drink; additionally it may become necessary, when found to be in major logical error, to swallow one's words. (The latter often becoming the more difficult endeavour.) When you check the list of symptoms associated with amyloidosis, dysphagia, or difficulty swallowing is one of the most common. It is also often associated with hoarseness.
As I pondered this dilemma while driving home, I decided to share my expertise on the subject. I know that right now you are thinking, "Kevin, you are a urologist. What makes you an expert on swallowing?" As it turns out, I have been gulping down stuff for over 51 years and began doing this in earnest about 4 months before I was born.
Amyloidosis overproduces bad proteins that infiltrate many types of tissue. including smooth, skeletal and cardiac muscle. The esophagus contains smooth involuntary muscle while the tongue is skeletal or voluntary muscle. As the disease progresses, the tongue becomes thicker which prevents one's ability to use the tongue to clean stuff from between your teeth and lips or cheeks. Additionally, the back of the tongue obstructs the posterior pharynx and may even lead to catching of food or pills near the epiglottis or valecula. Once trapped, neither coughing or continued efforts at swallowing can dislodge the pill. Eventually, severe gagging may occur as a result. The swelling may also affect the area of the glottis or vocal cords leading to hoarseness. The severity of these symptoms may wax and wane. I personally believe that congestive heart failure from restrictive cardiomyopathy may further exacerbate these symptoms, however my proof for this is personal anecdote as my own symptoms of hoarseness and difficulty swallowing greatly improved after my heart transplant. I even have to question whether decreased saliva production may also be a factor to make things worse. Currently, I also find that dexamethasone-caused fluid shifts may also play a role, as I notice predictable hoarseness and dysphagia concurrent with the medication.
There were many suggestions today proving that the collective and very practical wisdom of support group members can be more valuable than the staid advice of my medical colleagues.
1. Have a thick slurry nearby when swallowing big pills I use applesauce, others suggested yogurt or pudding. One suggested a clump of bread to dislodge the pill.
2. Position a long ovoid pill on your tongue parallel to the pathway, purse your lips and suck in the water very fast to create a vortex in your mouth to more rapidly move the pill down the throat.
3. Certain pills may be crushed and mixed with food (applesauce is good as it may cover the bitter taste). Time released pills or capsules cannot be crushed and some pills crushed taste horrible (KCl, potassium chloride and prednisone)
4. Most pills will eventually dissolve, however, this can cause local irritation and is some case cause a chemical laryngitis which may worsen to infection in the immunosuppressed.
5. Generic pills are cheap and they often skimp on the coating, be advised.
6. I find that my swallow reflex is much better after I have had a meal. If possible, swallow your pills after you have eaten something.
When you have an uncommon disease causing and incredibly common symptom, sometime the best advice comes from your fellow sufferers. This is why I find support groups so valuable; Collective wisdom through shared experience.

Kevin

I can't complain.....now

This is the first saturday Kevin has felt good since July. What a great and happy day it's been!

Barbie

I Can't Complain

'I Can't Complain' belongs in the ubiquitous plethora of responses that humans vocalize when their paths cross. When I was younger (and naturally lower to the ground) I would observe bugs and wonder at there purpose and motivation. Ants tended to follow the same path as other ants even though the driveway was comparably equivalent to the state of Rhode Island. As they passed each other, they stopped to intertwine antenae in some form of ant twittering. I imagined that the first ant would say, "How's it going?" and the second, pulling from his bag of standard responses would quip, "I can't complain."
Those of us who wake up every day wondering, "How am I feeling today?" find that these common pleasantries take on a new and much more literal meaning. These are the questions that we ask ourselves and wait for our body to answer. For me, however, 'I can't complain' is now a mandate. It is not as if it could be worse, it should have been worse. If I feel crummy I remind myself it is better than not feeling. I really can't complain because I am still alive. Not only that, but I really have a wonderful life. I have said before that to live without serving others is mere existence. I continue to retain the privilege of serving others.

Let's say that the chemotherapy makes pizza taste like cardboard, my body feel like I just got off the Tea Cups at Disneyland and head needs to be in a vise to offset the pressure. No matter, I know that if I go outside my health score will increase by three points. If I then get on my scooter; it is now up by seven. When I walk into my office, it magically increases by 13.417. You may say that this is just placebo effect, but I did a double blind study by closing both of my eyes and still felt the same. Somehow, the more I get involved with nature or other people the less I focus on myself. I guess I should write a self-help book. However, it would be very short. Only three sentences.

1. Life without service is mere existence
2. Happiness equals service plus love
3. There ain't no free lunch, there just ain't.

I think the last line, if not understood, is why people complain. It bothers them if they are not in complete control of their life or if they think their situation is unfair. Somehow, they think that merely by breathing, they are entitled to stuff. Life is not fair. But that is not any one's fault. It just is what it is.
For me to complain would be the ultimate expression of ingratitude. So it is not that I shouldn't complain; I cannot complain (that doesn't mean that things don't still annoy me, just ask Barbie.) Somehow I feel that if I were to complain about how it is unfair that I got this disease, and swim in my own fetid pool of self-pity, that all of the atoms in my body would collapse into a ridiculously small black-hole; overcome by the ego-driven gravity of my situation. Ultimately, that would warp my remaining time. It is just not worth it.

Now when people ask how I am, I truthfully respond, "I can't complain." ....But my upward inflection indicates the veracity of hope contained in that moment.

Kevin

Lincoln High School Choir

Caitlin plays for the Lincoln High School Choir

Caitlin sings with the choir

One step at a time

Stairway to Heaven



Only 962 steps to go





Beauties of Nature





There's always room at the top

 Definitions

Tenacity:  The personal drive to achieve a specific task or goal that has perceived value to the individual despite physical or logistical barriers. May be tempered or abandoned if the risks exceed the value; often at the behest of cooler minds

Not to be confused with--

Stubbornness: The inability or refusal to alter one's stance or path of action, once taken, regardless of physical, emotional or economic risk to the individual and those affected.

Yes, I am mostly the former, and usually not the latter. Tuesday Barbie and I went to Santa Clara to get my heart biopsy. This resulted from a blood test that indicated I might be in heart rejection. Rejection is determined by the pathologist at Stanford as he reviews 5-7 tiny pieces of heart muscle ripped from the interventricular septum of my heart. There are four possible outcomes:
      1. NER - No evidence of rejection
      2. 1R/1A - Mild rejection -- requires no intervention
      3. 2R/3A - Moderate Rejection -- Must be treated with very high dose steroids and repeat biopsy done.
      4. 3R/4A - Severe Rejection -- May be a threat to the donor heart leading to irreversible damage.
I have been in moderate rejection 3 times. All related to Revlimid, the drug I take for Amyloidosis. I always feel a little off-balance after the biopsy. But especially this time as they tried 12-13 times to get 5 good pieces of my heart, but the fellow kept hitting scar. I can tell when the get a good biopsy as the 'tug' that I feel as the heart is pulled up in my chest toward the pericardial sac is quite noticeable; albeit, not painful. More tug, better biopsy. (In my best Brooklyn acccent, "You want a piece of me? Start tuggin' at my heartstrings, Doc!")
Barbie and I left Santa Clara and drove 3 1/2 hours to Yosemite. We didn't have a reservation. The Yosemite lodge and Ahwani were booked. However, we got one of the last three unheated tent cabins. Three wool blankets, socks and cuddling kept us warm enough to sleep.
My goal was to hike to the top of Vernal Falls and more specifically the Mist Trail. from Yosemite floor, this trail rises 1000 vertical feet in a distance of 1.5 miles. I sure some math whiz can calculate the slope; suffice it to say, it is steep. The last 0.3 miles is carved granite stair steps.
I was told that my biopsy results would be back at around noon. An early call usually meant bad news. It didn't matter, there was no reception on the trail. I figured, "Do the hike before you know the results so that bad news won't keep you from going." I am sure you readers do not fail to see the major flaw in my logic and will assign me to the stubborn category. So be it. Some times I take risks; but risk-taking is what makes us feel truly alive. We were prepared. Protection from the environment, good shoes, plenty of water, snacks and the coup du gras, my birthday present of two walking sticks. We moved slow, Barbie patiently waiting for me on my many breaks, but we made it to the top. It was magnificent. When I hiked Lassen I was a 96. Today I started as a 74, but, the more I hiked the better I felt. Moments like this remind me of what I am capable. Yosemite is truly a hospital for the soul. If you have not been recently, put it at the top of your bucket list and go.
Being at the top felt wonderful, but, as in life, the best views and hence the best memories are on the journey up.
We drove home renewed and then the call came. I was anxious knowing that a 2R/3A not only meant disrupting my next two weeks for necessary treatments and a re-biopsy, additionally it would alter the course and future plans for my amyloidosis treatment. But, fortunately, the news was good. I am 1R/1A. I went home and took my first Revlimid of the new cycle. We continue as planned.
Whether tenacious or stubborn, it turned out to be a most enjoyable day.

Kevin

Stay Calm

Mist Trail to Vernal Falls

I was supposed to be well during the 4 weeks off the chemo. Instead, I have spent the last three weeks sick, first with GI issues and then bronchitis, again. Work doesn't stop when I feel ill; but I am glad that I work only three days a week. Yesterday I had put on the calendar to drive to Yosemite to climb the 'mist trail' to Vernal Falls. But I am still pretty weak. The mist trail  is steep and well, misty; hence balance in required to not fall off the cliff into the river below. Instead we drove to Grass Valley and back through a different route that took us behind Beale Air Force Base. The GPS didn't mention that 10 miles of it was dirt road.
Today I am feeling a little better and helped Barbie around the house. It seems like September is when we do our big projects.
As part of my experimental protocol to treat my Amyloidosis, I increased my dose of Revlimid to 5 mg/10mg on alternating days. I then waited 3 weeks and did an Allomap blood test to see if I was in heart rejection. The result was not good and I now need to have a heart biopsy in Santa Clara on Tuesday. I hope I can convince the judge to let me off of jury duty that day. It is quite inconvenient that the one drug that clearly works to decrease my light chains and treat my amyloidosis also causes heart rejection. Of course, I can't complain. Everyday I get to do really cool things and interact with so many amazing and nice people.
Last Wednesday Dr Gunther-Mayer did a noontime conference on physicians as leaders. At the end he confessed that as a Chief Resident at UC Davis he one day discovered that he possessed the gift of the ability to calm people. As he said that, I realized that I too can do that. Partly because I don't panic or succumb to fear in crisis situations. If I am calm, those around me join in. Sometimes, though, I do get sad and, heaven forbid, momentarily discouraged. Barbie is usually the only one who witnesses those moments. I know it is especially hard for her. However, she never tells me to 'buck up' or 'get over it'. She doesn't try to come up with pithy 'silver lining' metaphors. (That's my job.) She quietly puts her arm around me; she holds my hand until the moment passes and then we move on.

Maybe this week I will climb Vernal Falls. If my heart is in rejection, then maybe next week.

Kevin

Work goes on

I got home today to hear that Rebecca and Jason are on their way to California. After her internship in Chicago, they returned to Utah for Jason to begin his semester at UVU. Since it is a long weekend, they decided to make it longer by driving two 10 hour trips in 4 days. But, of course, Northern Nevada is 43% more beautiful this time of year. I have done that trip so often that I have started to name the tumbleweeds along the way. It will be great to have them here with us for a few days.
Work has been extra busy the last two weeks. Generally, I work three days a week. But recently I have been working on my off days. This is my choice, however, because we are essentially revising the schedules of all of our doctors to adapt to a completely new way of caring for patients. Over the past two years we have reduced the time it takes to see a specialist from 14 days to 10 days and now to one day. This is not just us, but all of the specialties at Kaiser in Northern California. Two of the ways we do this is to daily carry a phone, that when called by any primary care doctor, will be immediately answered by a urologist. That means that while you are sitting in you doctors office, you can get an on-the-spot opinion from the specialist. Second, we now offer patient telephone consult to replace their initial visit for certain diagnoses. Thus, the patient's first actual visit is for the procedure they need. It saves the patient from missing work and paying for the initial visit to come in to discuss the pending procedure. It's a wonderful idea, but can be a scheduling labyrinth to line up the doctors and the patients from all over Sacramento to have their consultations within 24 hours. Anyway, I lay awake at night trying to figure out how to keep 57 moving parts to align in harmony. Currently, the brass section is still cacophonous.
Last week I informed my leaders that I will step down as chief of the department next year. (Not because of the above, I am very excited about the way we are revolutionizing medicine). Rather, I now realize that my chemotherapy schedule will go on indefinitely and there are times when I am, well how do I say it... sick. This is a very difficult decision, as I truly enjoy the challenges associated with this responsibility. I am amazed at how supportive and patient everyone has been. I feel if I worked anywhere else, the would see only my limits and liabilities.
Notwithstanding, I plan on working as long as I can.

Kevin

Birthday Boys

Parker and Me

Thursday Parker and I celebrated birthdays. Yes, I share my birthday with our dog. I turned 51 and he turned 12. Two years ago, the day after the heart transplant, Barbie asked what I wanted for my birthday. "I already got it," I said referring to my new heart. Last year again she asked and without skipping a beat I asked for only one thing, another birthday. I had to wait a whole year for the present. It arrived on Thursday morning at 12:00:01 A.M. (I was awake as it was my Decadron day). It may be boring, but I just can't imagine a better gift than to be present for another year. Even so, it was a bittersweet day. Barbie and I enjoyed the day together. We went to the temple in the morning, took a hike to Hidden Falls in the afternoon and had friends over for cake and ice cream that night. However, Parker could not get up all day. This was the third day that he could not walk. He would cry to go outside and we would need to carry him over the threshold. Labradors tend to have hip problems and he has be slowing down for over a year. They are stoic, but it was clear he was suffering. Barbie and I talked it over with Caitlin and we knew it was time. It is a really hard decision to say goodbye to a pet that has been with the family for 12 years. Parker's sole desire was to be near us all of the time.
Friday morning, as I left for work, Parker was on the kitchen floor. When he saw me he lifted his head and began wagging his tail. I leaned down and patted his head as I said Goodbye. It was a really hard day at work. I had eight cases and felt physically and emotionally drained. I couldn't talk about it. It just hurt too much. Barbie and Caitlin took him to the vet. He reassured them that we were doing the right thing.
Today the house just feels different. Even though you knew this day would eventually come; nothing can quite prepare you for it. He will be missed.

Kevin