Re: Young Adults/Liz

[Guest guest]

I have an appointment at St.Mike's the end of January. I will have to

bring my flutter valve, I let you know how it goes. So far the

flutter valve is still in the box, unused, I am doing exceptionally

well so far, no coughing of blood since August. A teaspoon of white

sputum once or twice a day, knock on wood. But this bronchiectasis is

so unpredictable. Like the weather in Canada,

Karin

>

> Dear Ellen,

>

> Your son is still a child, so I hope he can stay in pediatrics at

least until he is through high school. Actually, stay in peds. as long

as possible. That's where the care is the best! Some children's

hospitals in the US allow kids to stay on until or through age 21. I

think this is best, because The kids are going through so many

transitions at 17-through-18 with graduating from high school, etc and

I think at 21 they are older and better able to handle adult doctors

and adult hospital care. Anyhow, again my advice is to stay in peds

for as long as possible, In Canada we have fewer options (it seems

....fight to stay there. Bronchiectasis treatments tend to come from

the CF studies and pop. and the best CF doctors are still in peds.

Trust me, I'm seen the big CF adult specialist in Toronto at the

largest CF adult clinic in North American (and was not overly

impressed - the hospital adult care was terrible at St. Mike's)

[Guest guest]

Hi ,

Most physicians, specialists in the large hospitals in the GTA don't

visit their patients. Communication is done by fax, phone or simply

reading your chart. If anything critical or if the meds/treatment

needed changing, or an upcoming surgery, then he/she may see you. The

doctors don't ignore you, they don't have the time to see everyone

unless it's a lifethreating situation. They send their interns out in

the mornings to do rounds. Didn't they do rounds while you were at

St.Mike's? I bet they did. The schedule used to be online. It's a

teaching H. Your physician is out and about doing lectures or doing

research. Most of them have their offices on Queen St. across from

St.Mikes. I have dealth with cardiology, oncology, cardio and

ophtholmology for myself and both parents.

After having had eyesurgery, the doc popped in for a few seconds and I

didn't see him again until an appointment 2 mths. later. He was at

the nurses' desk looking at everyone's chart. They just don't have

the time to visit each patient more than once. That's life in the big

city.

The same goes for Mt.Sinai, TO Gnl., Princ. Margret, Western Div and

Sunnybrook H. There I once visit my father's urologist/oncologist in

his tiny office, he said to me, keep talking, I have to put my

initials on the chart, he continued saying he hopes the visiting docs

and interns did their job, he had 250 charts in front of him, signing

away, while I spoke to him re my father.

, Toronto H. cover almost 8 million people, that's more people

than most north american hospitals handle. Get used to it, or suffer

in a small community H. where they only communicate by fax. The only

advice I can give you, don't go to too many hospitals in TO. Your

chart will be all over the place and few docs will know your medical

history. Unless you have someone who will gather your charts and

forward it to the H. you are seeking treatment.

If you need to lodge a complaint, go to

http://www.cpso.on.ca/Info_Public/infopub.htm

I will go to St.Mike's for the instructions and that's it. I don't

have severe problems with the bronchiectasis. At times when I don't

drink my 3 liters of water, I do have trouble getting the phlegm out

of my lungs. I just hope this flutter device isn't going to be too

hard on my lungs to cause bleeding, I also heard warnings about the

flutter in case of heart disease which I also have.

I don't know about seing Dr. Tullis, she was a student of Dr. Balter's

who I see at the Mt.Sinai, she calls him for advice on difficult resp.

cases.

Karin

>

> Hi Karin,

>

> I hope your appointment goes well. The clinic was helpful. Family

and I were not impressed with the care received on the CF floor when

hospitalised for 10 days I only saw Dr. Tullis once. Disappointing

because I came from Nova Scotia to see her. Also had an arrogant

physiotherapist

[Guest guest]

I haven't had to be hospitalized for lung problems for a long time.

But I have had other surgery through the years and have only been seen

by the surgeon once during the hospital stay. Other patients who had

unusual problems were seen more often. Best to make an appointment

with the specialist away from the hospital, in their own office. You

can find their address in the link I posted on my previous post.

Unfortunately bigger is not necessarily better. St. Mike's is well

known for treatment of cardiac, nephrology, and mental health

diseases. Each Toronto teaching facilty specializes in a different

condition. Maybe lung disease is not their specialty, don't know. I

will ask a few questions when I have my appointment.

Sorry you weren't happy with your treatment. Hospitals have their

routine, they generally don't worry whether a person lives in the city

or come from out of town.

Karin

>

> Dear Karin,

>

> Well, coming all the way from Nova Scotia after waiting months for

this appointment, I would " expect " to see the specialist not the

intern. The resident new nothing about CF or bronchiectasis, he said

that I didn't have bronchiectasis (wrong, I do) and wasn't helpful.

Yes, he did daily rounds and sometimes with the senior residents, but

often not with an attending specialist. I told him that I was getting

physio and he did nothing to resolve this matter. I was extremely

disappointed in St. Mike's Hospital. At least in Nova Scotia even in

Halifax one see's the specialist along with the residents during

rounds. On the weekend you may still see a specialist or a resident.

It was this way at Toronto General, too the residents and specialist

often came in together. Much better. I appreciate that Dr. Tullis is

busy, but its not an excuse to fail to see her hospitalised patients.

She has 300+ Cf patients, but it still doesn't excuse St. Mike's from

offering a rotating slate of

> specialists. Some of her CF patients have also complained to me

about her lack of care when they are in hospital. We expect to see our

specialist and not a resident who doesn't even know what a well known

asthma med is ... accolate. It was an extremely frustrating hospital

stay, so much so that I would never choose St. Mike's for in-hospital

care again. Instead I'd go to Toronto General. The respirology floor

at Toronto General was much better and I had a great physiotherapist

there. She came in and spent a good half hour Monday through Friday.

On the weekend another physiotherapist was available. No fighting for

physio!

>

> I wrote a formal complaint letter to St. Mike's about my care.

Toronto's larger population is not an excuse to ignore out right their

patients, and I feel this happened on my case. I receive much better

care form my GP and infectious disease specialist in Nova Scotia.

>

> After being in St.Mike's and arriving home I ended up getting

sicker, ended up with pnuemonia, and was hospitalised over Christmas

at our local hospital, because the resident failed to ensure that I

was reciving the proper care at St. Mikes. My brother even complained

to the nurses. My family could not be wth me often due to their work

schedule.

>

> When I was at St. Mike's I tried to get through to the patient

care representative, but had some phone problems. Anyhow, my letter

went to everyone and I hope it made a difference leading to improved

care for others with bronchiectasis and CF or other lung disease.

>

> Hugs:0)

> Liz

>

>

> Pre-Lung Transplant Journey - For updates please visit my carepage

and leave a message. Thank you! )

> carepages.com name: maryelizabethholt

>

> Please watch: Live Life Then Give Life! - UK

> http://www.youtube.com/watch?v=Nz33i6prkuQ.

>

> " Don't take your organs to Heaven, heaven knows we need them here. "

>

> __________________________________________________

>

[Guest guest]

Liz,

I did a search, Dr. Tullis also works in Thunder Bay. That is a 24 h

or 2 day drive from TO. She also works for the Sudbury hospital which

is a 7 hour drive. Ontario is a huge province. She is also with the

sick kids. If you need to see her again, why not make an appointment

to see her in her office at 30 Bond St.

http://www.cpso.on.ca/Doctor_Search/summary.asp?Type=ADV & intCurrentPage=1 & sNameR\

efNo=0041514

I don't know what else to suggest.

Karin

>

> Dear Karin,

>

> Well, coming all the way from Nova Scotia after waiting months for

this appointment, I would " expect " to see the specialist not the

intern. The resident new nothing about CF or bronchiectasis, he said

that I didn't have bronchiectasis (wrong, I do) and wasn't helpful.

Yes, he did daily rounds and sometimes with the senior residents, but

often not with an attending specialist.

[Guest guest]

If the doctor left the instructions with the staff and they don't

follow orders..........I can see how disappointed that was for you.

Having to travel all that distance.

Karin

>

> Dear Karin,

>

> I understand that Dr. Tullis is busy. She has 300+ adult CF

patients alone not including non-CF bronchiectasis. She directs one of

the largest adult CF clinics in North America. However, as you stated

bigger does not necessarily bring about better care especially if the

specialist is too busy. My doctor did make an appointment for me