Re: Pneumonia again & the Craptastic SMA Passport

May 7, 2011

I'm glad you're finally getting reasonable care, and am sorry you had to go

through such ludicrous hell to get it. I hope it was timely enough and that you

recover quickly.

I really appreciate your questions: " Don't patients with SMA over the age of

childhood deserve medical care beyond being a 'poster child' of convenience?.

Why is there no real SMA clinic for adults with childhood onset? Where's our SMA

support so our drs aren't having to play guess work while genuinely trying to

care for us while SMA clinics doctors don't return calls, dissappear during

illness crisis, and just dump us on systems with no experience. "

It's a horrible feeling to know that our needs are not taken into consideration

because we're still mostly expected to have already died. It makes me think of

Harriet McBryde 's book title, " Too Late to Die Young " . I wonder how

many of us Type I's & II's will have to survive into our 30s, 40s, and 50s

before SMA specialists will get organized about our care? Until then we must

continue to cobble together our own and hopefully find those exceptional health

care practitioners willing to do what it takes.

Alana

May 7, 2011

Wow, that's certainly some story! This week I have also been sick and

completely understand your frustration. In the middle of an infection is the

worst time to become a " case manager " . I echo Alana's sentiment and am glad

things are looking better.

Although I have a trach, for the most part, I have been remarkably stable for

the better part of 15 years. As I approach 46 next month, I am beginning to

feel the ravages of time. Last week I was able to contact a well-connected

friend and get a Cough Assist and ventilator delivered for nighttime usage.

Neither has worked out particularly well. My nose leans to the left which

renders both machines challenging. As for connecting the ventilator to my

trach, it is a pediatric model from the mid-70s and there is not an adapter. In

the past my father would've been great at fabricating/improvising something, but

he is 88 now and as much as he would like to, I do not think it is in the cards.

T.K. Small

>

> This week has been another learning experience of the good the indifferent and

the down right helpfully good that medical proffessionals can be.

>

> The latest news from me is- there's pneumonia in my left lung lower lobe again

[aggravated grrrrr].

>

> I'm currently on Clarithromycin 250mg/5ml BID suspension- the point is- I'm

finally getting treated for something that's been making me feel like worsening

sh*t for weeks, [that's the good for the momment news, so picture a sort of

smile from me here].

>

> I've had over three weeks of worsening symptoms (fevers, night sweats, weird

lung sounds, cloudy phlegm, mounting fatigue).

>

> Right before these symptoms, my soon to be replaced primary dr, put her hours

from five days a week down to only one morning a week without any real notice to

her patients.

>

> 'Promises' from my primary dr were made, that her 'associates would be

available'. I went to well visits with her associates to establish familiarity

in hopes that I'd still be getting primary care. Etc. I made sure communications

were done (as I religiously always do) from my pulmonary, SMA Clinic, and other

specialists. I kept my own carrying copies file folder up to date, tests,

reports, etc., I HIPPA-released every clinical steps, test, radiology copies,

reports, you name it, appointments, humanly possible at every visit from each

and every dr to all of my drs.

>

> In the last three weeks I was told by my Childrens and Beth Israel specialists

to " go to my primary dr first " , and tried to do just that.

>

> I delivered urine clean catch specimens, delivered bladder stones I'd passed

(in the appropriate containers) into my primary dr's 'new on site lab', etc.,

during all times between the appointments that the primary dr's office would

grant me as a once a week 'squeezed in' appointment.

>

> This week my primary refused to communicate with my pulmonary specialists at

all, because " her secretaries are busy " . She told me no antibiotic could be

prescribed because there's no chest xray and a chest xray could not be ordered,

" because I can't stand up for it " . [Now we know that's serious bullsh*t from

the dr, standing up requirement x rays ended decades ago].

>

> My primary dr's staff needed practically an act of congress just to fill out a

simple lab slip for the sputum and urine specimins that I provided to their

insisted upon on site lab. While in the waiting room, staff was bitching for all

to hear, " what! there's more than one specimin jar! " , " Just check end stage

renal failure on the computer! " ..

>

> While waiting for prescriptions, etc in the waiting room after my exam room

part of the appointment, I hear my dr yelled for by staff, " The AMA is on line

three for you and wants to speak to you now! " . [Not a good sign?]

>

> By this point I am given a bums rush to leave the place. I go home and start

making calls to my Children's Hospital SMA critical care drs who've been saying

for the past year, " we're here for you " .... " call us when you have pulmonary

symptoms " ... " our SMA clinic critical care drs will see you at home " , " we want to

advoid you getting so sick you end up in the hospital " , [yada yada] all ditched

me with their reasoning, " well your primary dr needs to call us " , when I

informed them of my primary's behavior, Children's pulmonary told me, " Well if

the primary is not calling us, I guess you're not that sick " ... My SMA critical

care speacilists never called me back at all.

>

> Beth Israel pulmonary calls me back by 9:30 that night and sounded horrified

by all of this and put an xray order in for me to do at whatever time I can get

to out ptient x ray the next day.

>

> I already had an appointment with the Beth Israel neurology dept social worker

the next day, did my x ray first and this pulmonary dr and social worker were so

horrified by both Children's and my primary dr's actions that a new primary dr

(who officially wasn't taking new patients) is going to see me next week.

>

> About an hour after I got home my Beth Israel calls me, says pneumonia has

been spotted on my film, works out getting antibiotics confirmed in stock at my

nearest pharmacy, and finally- I've stumbled upon some medical care that seems

to give an actual sh*t about my health.

>

> It should not take this much work to get a lung infection treated before it

becomes deadly.

>

> As far as Children's hospital SMA clinic goes, they seem to only want to see

me when I'm well, can be studied as their oldest patient, but are unavailable

for providing actual health care to me in a timely manner or any communication

with other drs.

>

> MDA and SMA orgs with any funding towards this clinic need to really rethink

where they place the only Regional SMA clinic in New England. Don't patients

with SMA over the age of childhood deserve medical care beyond being a 'poster

child' of convenience?. Why is there no real SMA clinic for adults with

childhood onset? Where's our SMA support so our drs aren't having to play guess

work while genuinely trying to care for us while SMA clinics doctors don't

return calls, dissappear during illness crisis, and just dump us on systems with

no experience.

>

> The Childrens SMA clinic has started a craptastic idea of " The SMA Passport " .

In practice this 'passport' is useless. The SMA Passport is suppossed to be

filled in, sent back to the SMA clinic and from there any drs you listed with

releases before a crisis happens are suppossed to be contacted by the SMA clinic

of your needs. On call drs, emergency responders, etc are never going to be able

to be predeclared in a HIPPA release. It seems more like a way to mine

information from patients and this 'passport' provides no HIPPA accountability,

or even contacts or timeline info of where your filled out information goes or

how it will be stored or used after they get your medical details. In the event

your medical allergies, conditions, needs change, there's no info with the

'passport' of how to update it either.

>

> Am I the only who notices how this passport is useless between different

hospital 'kingdoms' in the event of a medical emergency when communications

don't happen during well momments?

>

May 8, 2011

get well soon T.K!

Re: Pneumonia again & the Craptastic SMA Passport

Wow, that's certainly some story! This week I have also been sick and completely

understand your frustration. In the middle of an infection is the worst time to

become a " case manager " . I echo Alana's sentiment and am glad things are looking

better.

Although I have a trach, for the most part, I have been remarkably stable for

the better part of 15 years. As I approach 46 next month, I am beginning to feel

the ravages of time. Last week I was able to contact a well-connected friend and

get a Cough Assist and ventilator delivered for nighttime usage. Neither has

worked out particularly well. My nose leans to the left which renders both

machines challenging. As for connecting the ventilator to my trach, it is a

pediatric model from the mid-70s and there is not an adapter. In the past my

father would've been great at fabricating/improvising something, but he is 88

now and as much as he would like to, I do not think it is in the cards.

T.K. Small

>

> This week has been another learning experience of the good the indifferent and

the down right helpfully good that medical proffessionals can be.

>

> The latest news from me is- there's pneumonia in my left lung lower lobe again

[aggravated grrrrr].

>

> I'm currently on Clarithromycin 250mg/5ml BID suspension- the point is- I'm

finally getting treated for something that's been making me feel like worsening

sh*t for weeks, [that's the good for the momment news, so picture a sort of

smile from me here].

>

> I've had over three weeks of worsening symptoms (fevers, night sweats, weird

lung sounds, cloudy phlegm, mounting fatigue).

>

> Right before these symptoms, my soon to be replaced primary dr, put her hours

from five days a week down to only one morning a week without any real notice to

her patients.

>

> 'Promises' from my primary dr were made, that her 'associates would be

available'. I went to well visits with her associates to establish familiarity

in hopes that I'd still be getting primary care. Etc. I made sure communications

were done (as I religiously always do) from my pulmonary, SMA Clinic, and other

specialists. I kept my own carrying copies file folder up to date, tests,

reports, etc., I HIPPA-released every clinical steps, test, radiology copies,

reports, you name it, appointments, humanly possible at every visit from each

and every dr to all of my drs.

>

> In the last three weeks I was told by my Childrens and Beth Israel specialists

to " go to my primary dr first " , and tried to do just that.

>

> I delivered urine clean catch specimens, delivered bladder stones I'd passed

(in the appropriate containers) into my primary dr's 'new on site lab', etc.,

during all times between the appointments that the primary dr's office would

grant me as a once a week 'squeezed in' appointment.

>

> This week my primary refused to communicate with my pulmonary specialists at

all, because " her secretaries are busy " . She told me no antibiotic could be

prescribed because there's no chest xray and a chest xray could not be ordered,

" because I can't stand up for it " . [Now we know that's serious bullsh*t from the

dr, standing up requirement x rays ended decades ago].