Answers from Dr. Buckner and Dr. Utz

[Guest guest]

I am enclosing a letter that Heidi sent to me and that I forwarded on to Dr.

Utz, Dr. Buckner and Bradley. At the bottom you will see the responses

we received from Dr. Buckner and Dr. Utz. I will be posting another post in

regards to this.

Don't want this one to be too long. lol

Dear Dr. Heidi Main, the Treasurer for the RP Foundation and the one who

keep the support group informed on all the members health, sent me this post

and asked if I would kindly send it to any doctors who might have an answer

for her. I am forwarding it on to you. I hope you can give her an answer.

You may also reply to me and I will pass it on to her. We are losing too

many too fast.

Thank you for your time.

Colloran

RP Foundation

Hello Dr.

MY name is Heidi Main and I am writing to you in regard to RP. I was

wondering if you would be kind enough and help me out with one very big

problem the RP support group has to deal with at this time. The question I

have for you is :

How can I tell the group on how important it is to keep a close eye on the

lower part of there lungs ??

On March the 4 one of the Ladies died because the Dr. just found it to late

to help any more. Right now we have another Lady on Life support system with

the same problem. The family has not yet decide when to turn it of. I do not

want to scare anyone with the news I am about to have to tell them again. Is

there a special test like a cat-scan or MRI or any kind of test that I could

tell them about that might help them understand it better ?

I like to tell the Group ASAP before the disconnect Ute from the Life

support system if at all possible.

Any kind of advise you could give me would be greatly appreciated. You can

reach me by Phone at

or by e mail at heidi@...

Thank you so much.

Heidi Main

I have taken the approach with all my patients to follow their symptoms and

pulmonary function tests. If either of these suggest respiratory problems I

then go on to do a more extensive work up. This may include chest xray,

high resolution CT of the chest, or bronchoscopy or another imaging

modality. I do these evaluations in consultation with a pulmonologist. I

do not think patients should have these more extensive tests done unless

there is evidence of respiratory problems. As always, other problems can

occur in patients with RP, particularly infections due to the immune

suppression we use for treatments, therefore each patient needs to be cared

for on an individual basis.

At this time we have no way to predict who will develop tracheal or lower

airway problems. In the future I hope we will be better able to identify

these problems early and treat them more effectively.

Jane Buckner

Unfortunately there is no good screening test, and even if found early

there is no clear, good therapeutic that has been shown to be

effective. Hence the need for more research and more money for research.

PJ Utz