When is Sarcoid NOT Sarcoid?

When you go to the Hopkins Sarcoid Clinic and the Sarcoid specialist says so! This ambiguity about what disease I do or do not have is such a farrago! I have gone from being dead in 3 years, to not sure if I am chronic or acute, to a choice between two diagnoses, treatment, oops, wrong diagnosis, and now, more tests to try to confirm the new diagnosis and rule out the old one.

A disquisition on lung disease has been occurring for the past six months and the more information I receive has not settled the ground beneath my feet. Murky, muddy, sloppy, hidden depths, rocky. I am getting more and more confused.

Plans have been made, treatment begun, work rearranged, life rethought, and today, I have hit the brick wall. Although it is not a brick wall; more like a wall of jello. It wiggles, it shakes, it is permeable, sort of, and just when I think I have a hold on it, the wall quakes and I am holding air.

So, today I am not going to give too much thought to hypersensitivity pneumonitis. That may or may not be the new diagnosis. It will take some moderate amount of time to confirm or rule out, so, more will be revealed.

Boring and a Lot of Time

Having this lung disease is very paradoxical. I find that it takes up a considerable amount of my time, and, that when it is not making me do this, that, go here, there, sit, wait, and other manifestations of my now daily activity list, it is boring and it is so confining.

Hmmmmmmmm

Yesterday. I was running a fever yesterday so I was sent home from rehab to do nothing.
Tomorrow. I start at the Sarc Clinic at Hopkins at 9:30am and expect to be there all morning. Then it is off to rehab for 3 hours. All day taken up with this illness.
Last Friday. Stuck in the house going nowhere, especially out of doors. The heat index was 110 degrees and the air quality was orange. So unhealthy; house arrest, yet again.

Thinking about steroids, medication adjustments, exercise, staying inside, going outside, endless blood tests, CT scans, doctor appointments, chest x rays, more doctor appointments, heart rate, blood pressure, treadmills, diet, food labels, more doctor appointments, it is endless in cluttering up my life in a really meaningless, complex, boring manner.

It sure takes up a lot of time!

Fall Semester

University begins this week - and it is still summer. It is 90 degrees out today.
I always associated the start of school with Fall, not summer. I grew up in a suburb just northwest of Chicago. We started school the week after Labor Day. And we had real falls, not the sad sad excuse for fall that we get here in Baltimore. Even though I have lived in Baltimore for 14 years, my body is wired for school to start coincident with a real fall!

Back where I lived we had forests, filled with maples, oaks, elms, birch, aspen, a riotous palette for fall days. Neighborhoods were bedecked with old growth trees, creating living leafy arches rising over our streets - a dome of constant motion and change. In the fall,the leaves crunched underfoot. They smelled dusty and smoky, and orange. A sensual experience that surrounded everything for those brief weeks of change.

Now, I have to go search for some crispy colorful leaves - they do not abound. And I have to crunch them in my hands to release whatever bit of fragrance they might contain. Somehow, it is just such a pallid impersonation of such a spectacular season.

Or maybe I am just garnishing my memories with those "not like the good old days" sentiments. Who knows! But it sure is fun to reminisce.

Rehab on my mind

Today is my second session of pulmonary rehab. I have waited all summer for this program to have a spot for me and I finally began last Friday. I have great expectations for its curative potential. Right! How about I have some hope that it can help me with all of the weight I have been carrying around since I began using steroids. I have some hope it can help me breathe easier, breathe deeper, breathe.From what we did on Friday it does not seem very intense. So maybe I will have to motivate myself more to do more outside of rehab.

OK - motivate myself. I am fat, 58, have sarcoidosis, fatigued, fat, - yet , not motivated. I remember when I began running in my mid-30s and how it hurt. I ran around the block and thought I would die! But I kept at it - what motivated me back then? I kept at it and then I just ran, and ran, and ran until there was not much left of me. And then ran some more.

Today, I cannot even stick with taking a walk. Motivation - I had better go looking for it.

Bad Breathing Day

It is a USG day today - or ORANGE. Unhealthy for sensitive groups. I qualify - dammit! And HOT; heat index is predicted to be 110 degrees. So I am sitting inside, again...

How has my life changed these past months? Well, something very prosiac but habitual now, after I turn on my computer I check the weather and then, the air quality for the day. I never thought about air quality, except as an environmental issue, and even then, now a whole lot.
Air Quality. It can be Good. Moderate. Unhealth for sensitive groups. Unhealthy. Very unhealthy. Hazardous! Unbelievable. There is a category where the quality of air we breath can be hazardous! That gives me pause.

Life On Steroids

And I ain't no Barry Bonds! I am not buff, I am not the energizer bunny, I am not amazing the world with my record breaking performance! I am fatter, fatigued, and performing the best I can, which is not world class right now.

I hate being on steroids. I feel as if there are these little pacmen running through my body wreaking havoc with my system as they laugh! Ah, gotcha cerebral cortex! Ah hah - there goes the right kidney. Hmmmm, we need to try harder with the joints, they aren't hurting enough.
And so on, so forth! And in spite of massive steroid dosage, the sarcoid is getting worse again. So what do we do now? Increase the steroids!

The problem here is that there is no good, nor bad, nor any real evidence that steroids help treat sarcoid. I posted some research recently that indicated use of steroids to treat a sarcoid outbreak, while initially may be very helpful, actually leads to worse long term results. I have been thinking about that since I came across the research study. And I cannot turn back at this point since I have already skewed my long term results by using steroids.

My pulmonalogist leaves me with the impression that I will be on steroids for the rest of my life - which is not what I initially thought or understood. I thought they were used to treat an inflammation and then I would be taken off of them until needed again. Now, every time I ask him, WHEN, he responds with a shrug. How reassuring.

So Barry Bonds - you are such an idiot! Steroids are not worth it! What risk for such an ephemeral gain. So you will be in a Hall of Fame. So you beat out Hank Aaron (who will always be my hero); so what?

Grandchildren

Cecelia and Olivia are here visiting this week - heaven! And exhaustion! And joy! And singing, dancing, chatter chatter chatter.

I cannot imagine a life without grandchildren.
I remember when my daughter was pregnant with Cecelia I actually spent time wondering about how long it would take me to "love' the new baby. I was not sure that it would be something that just happened, or how it happened. Well, the moment I held that teeny little Cecelia in my arms I was in love! She was in my heart immediately and forever. The same thing when Olivia was born.

Love is so interesting - what is this immediate and without reservation love? Why? All I did was hold this seven pound person and there it was - love.

When I am feeling down or having a bad day or cannot fall asleep, I just picture my granddaughters and it is an instant fix. Soothing, joyful, reminding me to keep my gratitude in the forefront of my life.

Return of the Sarc

Back on a higher dose of prednisone. I am having more trouble breathing and with fatigue. OH FOR JOY...

I was just looking at an interesting study, with a reasonable sample size. If their conclusions have been substantiated by other similar studies, I am past the point of not return. It seems that the best results are with NEVER giving steroids to someone diagnosed with sarcoidosis!


The following was the published abstract from the journal CHEST (v. 111):

Over a 4-year calendar period, 337 patients with sarcoidosis were prospectively enrolled in a registry. One hundred eighteen patients were assigned to a spontaneous remission group when symptoms resolved without treatment, and 103 were assigned to an induced remission group when symptoms resolved following corticosteroid therapy and successful discontinuation. In 116 patients assigned to a recalcitrant group, therapy could not be stopped for 1 month or more owing to severity of symptoms or lack of compliance. We defined relapse as a recurrence of symptoms of sufficient
severity to warrant treatment with corticosteroids, following a remission without treatment lasting greater than 1 month.

Intervention: Patients who were judged to be sufficiently symptomatic to preclude observation without treatment or who failed to respond to conservative treatment with topical or inhaled corticosteroids or nonsteroidal anti-inflammatory agents were treated with systemic corticosteroids at a target dose of 20 mg prednisone per day for 1 year. (I am already out of the ballpark here as I was started at 50 mg a day)

Measurements and results: We observed a 74% relapse rate in the induced remission group, but only an 8% relapse rate in the spontaneous remission group (p<0.01).

Conclusions: Relapse occurred frequently in patients with sarcoidosis who had been treated with corticosteroids, and rarely occurred in patients who had not been treated with corticosteroids in the past. The striking difference in relapse rate between treated and untreated patients suggests that patients with disease that would later be severe and protracted were almost unerringly identified early in their course. One explanation is that severe presenting symptoms portend a protracted and recurrent course; an alternative explanation is that corticosteroids contributed to the prolongation of the disease by delaying resolution.

Hazy, Hot, Humid, and Harmful

That is the story for this week here in the D.C. metro area! I went outside today just to go outside and the air was so hot and wet it was as if I had stepped into a sauna. So, back inside. Not a good day for my lungs. Heat advisories and code oranges just about every day this past week. Last summer it would not have occurred to me to stay inside because of heat/humidity indices or air quality. I take so much for granted! Until it is lost, broken, or gone!

I saw the pulmonalogist again this week - he had my latest CT scans and pulmonary function test results, and as usual, no specific answers to any of my questions. "We don't know much about this disease," "We don't know when it is time to end steroid treatment," "we don't know if and when it will return," "it is a mystery," "sort of scarring," "less blur but maybe it will get more clear," "your diffusion level could improve, but..."

I have gained a LOT of weight on the prednisone. I also have the steroid face! Round, round, round. So now I am not only sick, I am sick and fat!

It is so frustrating! The one thing that keeps me sane is living each day, one at a time, and not looking ahead to a whole list of "maybe; don't know; possiblies."