Saturday, October 30, 2010

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.


Saturday, October 23, 2010

I can't

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


Tuesday, October 12, 2010

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.