| Chat Participants:
Susannew
kdfl
ms-ronni
partick
Begin Chat
ms-ronni -- HELLO
susannew -- Good morning Ronni! I'm so glad you could make it this morning!
susannew -- How are you doing?
ms-ronni -- THIS MY FIRST TIME EVER IN A CHAT HOPE I DO SOME GOOD
susannew -- I'm sure you'll do just fine. I think the information you have
is very valuable. I have asked another individual who has had a similar
experience to join also, I hope he will be here also.
susannew -- The chat doesn't officially start until 7:30 a.m. pst... We
blew it and forgot to send out a reminder - but I think many are used to
our bi-weekly schedule.
susannew -- I've been very busy looking for another job the last few
weeks. Interviewing, etc. I've had four offers and have accepted one
yesterday... Glad that decision is made! It makes me crazy not to know
which way I'm heading.
susannew -- I think Terry and I will be staying where we are (we
considered moving to Redding... and its in the back of our minds that
someday, we just might do that... but for right now - its best to stay
where we are!)
ms-ronni -- CONGRATS I'M STILL LOOKING AT BOXES AFTER THE MOVE
ACROSS THE STREET
susannew -- If I get out your way, I can help you unpack!
susannew -- lol
ms-ronni -- I'll hold you to it
susannew -- : )
susannew -- How is Chris?
ms-ronni -- Better back to work first of march
susannew -- That's good to hear.
ms-ronni -- Anything new on a conference?
susannew -- The conference agenda has been planned out, we have some
preliminary dates in mind - but we are having trouble securing a hotel in
Baltimore that has a block of (affordable) rooms, meeting rooms available
on the dates we would like to hold the conference. We are looking at
changing our dates by one day to see if we can get the space and get a
hotel contract secured.
ms-ronni -- If I came this far. I will try to get pointers from you today.
Keep the conf info coming
susannew -- We have had about 15 researchers of KD/doctors write and state
they would like to attend the conference. One from Italy, two from Canada,
and many from the U.S. -We've also had about 30 individuals living with KD
state they have solid interest in attending - and another 20 who were
interested but not sure - now if we can just get a hotel so we'll know the
exact dates - then we can begin to secure speakers and start registrations
- Its amazing how things like this do come together!
susannew -- We have a committee of 5 individuals working on the conference.
susannew -- Hey Ronni, we have a "Carrier's Concerns" chat coming up on
Saturday, May 18th - since you are the Support Group leader for Carriers -
would you mind hosting that chat?
patrick -- {welcome patrick}
ms-ronni -- Hi
susannew -- Good morning Patrick!
susannew -- Ronni, you'd do just fine!
patrick -- Good Morning to all!
susannew -- I've been a little silent lately, not sending out so many
emails because I've been so busy with work, traveling, long hours, looking
for another job. Also, I've had one individual take the wind out of my sails in regards to the KDA and I hate to admit that I've let him affect me so much. I'm working very hard to not let that affect me.
susannew -- We have 4 volunteers working to log the questionnaire
responses. This takes some time! We should have results in about 2 months
for everyone. We received approximately 30 questionnaires. 30 out of 300
possible, not a huge response, but enough to at least get started with
looking for some correlation’s and perhaps indicators of some other things
associated with Kennedy's that may not have been recorded by the medical
profession yet.
susannew -- Well - its 7:30 so lets begin to talk about the subject at
hand... Pre-surgery considerations. Ronni, I asked you to be hear today to
help share your experience with an individual with KD and what someone
with KD needs to know or do to make sure a doctor understands that they
have KD and extra precautions need to be taken with them.
susannew -- Feel free to share as much or as little as you'd like to about
that individual's name etc.
susannew -- I first met you because you came to the KDA because of this
individual... would you like to explain that to everyone. Even though we
don't have a huge turnout today in the chat, we will be forwarding this to
everyone on our list and they will most likely read later.
susannew -- Its so important for others with KD to know this information.
susannew -- I'm glad to know it for Terry's sake and I will never let him
go into surgery without making it very clear to a doctor the added risks
he faces in surgery with KD.
patrick -- Susanne, I think the guidelines should have a timeline. In
other words, certain things can be done before surgery even becomes necessary.
susannew -- Such as?
susannew -- What about an emergency surgery?
patrick -- For example, as KD progresses,d the bulbar deficit needs to be
identified and quantified, such as by a swallowing study. That information
needs to be in the KD patient's medical record, and a copy should be
maintained at home in a "In case he goes for surgery" file.
susannew -- That's a very good idea... to have your medical records not
only at your doctors office, but at home or with you in case of emergency.
patrick -- Copies of what KD is and how it affects swallowing and
breathing should also be in the file to provide information to the surgery team.
ms-ronni -- My brother was in an auto accident which resulted in closed
head injury. So he remained in a semi comatose condition and couldn't
speak for himself. I was glad he shared some of his symptoms and treatment
info. Most drs. are not aware of KD. I am a little slow at thought and
typing, sorry
susannew -- That's fine Ronni. I appreciate you sharing this. I know it
must be very hard for you to do so. Your information will help others.
susannew -- If I remember correctly - you mentioned to me in our phone
conversation - almost 2 years ago - that you had quite a struggle trying
to get the doctors attention when it came to KD... Why do you think that happened?
susannew -- What do you think would have helped you to communicate with
them better? To get their attention?
ms-ronni -- I experienced that when a patient is moved from one medical
facility to another not all the information go with. I had to constantly
rely info to each hospital, nursing home and ambulance
patrick -- A surgery team usually has a meeting with the patient and
family before surgery. This requires signing permission forms, among other
things. The team consists of at least a surgeon, or other
physician-in-charge, perhaps an anesthetist, and other such specialists.
In addition, during the pre-op stay, medications taken need to be
specified, and the nursing and recovery staff needs to be notified of
special needs.
patrick -- A surgery team usually has a meeting with the patient and
family before surgery. This requires signing permission forms, among other
things. The team consists of at least a surgeon, or other
physician-in-charge, perhaps an anesthetist, and other such specialists.
In addition, during the pre-op stay, medications taken need to be
specified, and the nursing and recovery staff needs to be notified of
special needs.
patrick -- For example, I take a lot of meds, and the hospital has to
decide whether hey will give them to me, or if I need to bring my own. --a
medication list should be in the folder. - and your neurologist's contact
numbers.
susannew -- The special needs part of that meeting is what I'm talking
about as well... Those with KD can be affected by anathesia (spelling?) a
bit differently than others without KD - due to the
throat/swallowing/respiratory being affected by KD.
patrick -- oops- "hey will gv te tom, orif" should read: "they will give
them to me, or if..."
ms-ronni -- In our case because of the brain injury and having KD I got
the feeling they thought it was a lost cause. I was told early on to let
him go.
ms-ronni -- respiratory was a big factor with my brother.
susannew -- What happened with his respiratory system?
ms-ronni -- weak diaphragm needed to suctioned all the time. Many bouts
with pneumonia
patrick -- When I've had scheduled surgery, I have had a pre-op consult
with an anesthesiologist (MD) or anesthetist (RN). They advise me what
to expect, outline risks, and have me sign consent forms. That would be
the time to put the KD cards on the table, before you sign the consent forms.
kdfl -- {welcome kdfl}
susannew -- Pneumonia is a very large concern for those with KD - Terry
gets birth a flu shot and a pneumonia shot.
susannew -- Good morning John.
kdfl -- Good Morning.
ms-ronni -- My brother was already having a hard time trying to cough
before the accident
patrick -- With unplanned or emergency surgery I've had, if I'm able, they
just give me a bunch of forms to sign, and don't go into detail. If
possible, that's the time to advise them about KD.
kdfl -- Susan, I am the same. I keep both of them up to date.
patrick -- However, if it is true emergency treatment, sometimes the
patent’s significant other gives the permission. That person needs to
have the KD facts.
susannew -- Absolutely Patrick -in this instance we must make them aware
of KD and educate them - I know they are doctors and it might sound funny
educate (may be the wrong word), but I wouldn't take any chances - I'd
come in prepared to discuss it and like you said, bring my medical
records, KD information - even if its downloaded articles from the
Internet, or copied from a library - I'd want them to know all about KD
before I trust them to operate on me.
susannew -- Absolutely Patrick.
susannew -- John: Do you know of anyone with KD who's had surgery? If so,
any complications or thoughts about presurgery considerations?
kdfl -- I don't know of anyone.
susannew -- Ronni: What do you think would have helped you with all the
transfers and updating doctors about your brother?
patrick -- Finally, for true emergencies, when the patient cannot
communicate and has no one is present to speak, I think a "Medic Alert"
tag should be worn, the kind that people with allergies wear.
susannew -- Perhaps a card in your wallet - maybe the KDA can make up a
form (PDF) and put on our site - Individuals could print and then fill it
out and put in their wallets...
patrick -- I think the card in the wallet is a good idea. I also keep a
list of my meds with me at all times. Some states let you add a comment to
your drivers license.
ms-ronni -- The card is a great idea
ms-ronni -- I think I will recommend that to the rest of my brothers
patrick -- I wore "dog tags" in the Army, and I am going to have a
civilian version made up. My plan is just to say I have KD and put the KDA
Web site address so they can get further info if needed.
susannew -- I'll make a card right after this chat and put it up on the site.
susannew -- www.kennedysdisease.org
ms-ronni -- good thinking
susannew -- The card would have Name, Address, Emergency Contact, state I
have KD, give the Web address for further information, who your insurance
is and policy number and let you have a place to put medications. Anything else?
susannew -- Leave room to state other medical conditions too.
susannew -- Could write medical conditions to be aware of and medications on the back.
ms-ronni -- The HMO was another battle. You have to really find out where
they stand regarding your special needs. It would have helped to be with
him daily. Unfortunately he was out of State I got up there 2 or 3 times a
month. Communication on the phone does not always bring results
susannew -- The one thing we've found with an HMO - NEVER GIVE UP! Be
persistent. They are hoping you will give up and walk away.
ms-ronni -- I know so well. You have to stay on top of them at all times
kdfl -- Susan, I think that is true for anytime you are trying to get something done.
patrick -- Susan, my neurologist and my family doctor both recommend I
also get a flu shot and a pneumovax (pneumonia shot). They also said while
a flu shot is only good for a year, a pneumovax should be good for ten years.
susannew -- I have heard of two individuals who had a severe broken bone -
that required surgery.
susannew -- Post surgery they developed a blood clot.
susannew -- I may not get the rest of this exactly correct - so please
forgive me. One of the individuals I asked to be here today would be able
to state the facts much better than I.
susannew -- Eventually the blood clot worked its way to the lung and
caused a lung embolism... Both KD individuals who had this situation passed away.
susannew -- I'm not saying that if an individual with KD breaks a bone
that this will always happen.
susannew -- I just want everyone to be aware of it.
susannew -- I've been told there are things that can be done to prevent
this - such as taking a blood thinner before such a surgery... I'm not a
doctor, so I don't know for sure - but its something that could be
discussed pre-surgery.
susannew -- Any surgery - I understand blood clots can be an issue.
patrick -- I hate to make this point, but when one gets hospital care, and
they inform the hospital staff, it should be documented, signed by a
hospital staff member, and kept by the patient in a safe place. Then, if
they screw up, file a lawsuit. I would not want to be relatively healthy
pre-surgery, and come out in a vegetative state, and need total care. I
could not pay for it, and my family could be bankrupted by it.
patrick -- I wonder if the low turnout had to do with the championship
basketball games last night, or if many are in denial about needing
surgery or being in a near-death situation?
susannew -- Patrick - I think low turnout because we forgot to send out a
reminder notice...
ms-ronni -- My brother was given what they call umbrella. A device
inserted within the Y of the air way/lungs to prevent a Clot entering the lung
susannew -- Thank you for that information Ronni - Does anyone know if
this is something they do for most individuals or did they do it for him
because of his tender condition? or because they knew he had KD?
patrick -- According to my research, I think KD patients may be at higher
risk for harmful blood clots. If we lose the use of our muscles in our
legs, clots can form, like what has happened to long-distance air travelers.
ms-ronni -- Because of the broken bones, etc. knowing in any individual in
this condition has clot risk
susannew -- Is that something that must be left in for a certain time period?
ms-ronni -- It was a perm implant
susannew -- That’s very interesting... I've never heard of an umbrella.
Good to know about.
patrick -- That's why doctors advise older people to take an aspirin a day
- it helps to keep clots from forming.
ms-ronni -- If he survived he would have to notify the airlines of it
because It could have rang the bells going through check in. It would have
been funny. But you are given a card to carry stating you have this devise
ms-ronni -- Actually, we had him in hospice after 8 months and a mucus
plug blocked his airway.
susannew -- Is that what caused him to pass away?
ms-ronni -- This is a big problem with a weaken diaphragm. Not able to
bring up the phlegm. I am sure in normal situation those with KD should be
concerned
ms-ronni -- yes
ms-ronni -- He was not responding, brain waves were near null and
pneumonia as just about constant, weakening his body all the more
patrick -- I follow the ALS Digest. ALS patients have symptoms like KD,
but earlier and more severe. They often discuss positive airway
ventilation (positive pressure in, negative pressure out), and the need to
reduce mucus and to suction out the mucus from the airway.
ms-ronni -- Suctioning was done for him 8 to 10 times a day that is how
great his need was
susannew -- One of the men I spoke about with a severe break who had
surgery was struggling to recover over a period of 4 months. He went home
for a week, and then had breathing issues and went back to the hospital.
He chose to have no more treatment, food or water interveniously and
passed away after a week. We have not made an announcement about this man
yet, but he wanted to donate himself to Kennedy's Disease research and his
family contacted the KDA. He was a very courageous and generous man and
his family was extremely brave in the face of all this. They worked with
us at the KDA to arrange for his tissues to be donated and they are held
at the Mayo Clinic on behalf of the KDA. Our scientific review board was
of extremely valuable help during all of this and I wish to thank that
family, Dr. La Spada, Dr. Merry and Dr. Fischbeck in their help and
guidance during this process, and Terry Waite for his leg work during that
process. We hope to make a memorial page in this man's honor and make a
formal announcement when I have permission from the family to do so. God
bless them.
susannew -- He had a lung embolism.
patrick -- Also, respiratory therapists can teach a KD patient how to
cough more efficiently and productively, and also how a KD patient's
partner can help with assisted coughing (I think it like a modified Heimlich maneuver).
butch -- {welcome butch}
susannew -- Good morning Butch! Thank you for joining us.
susannew -- Do you know of anyone with KD who had surgery? If so, any
complications to discuss that others should be aware of?
ms-ronni -- My sister in law helps my other brother. I saw the choking one
time and scared me to death. She used a form of Heimlich maneuver
butch -- Good AM to all. Sorry to be so late. Couldn't get on line. Don't
know why.I'll just read what you all have been discussing this morning.
kdfl -- Have to get going. Good by to all.
kdfl -- {goodbye kdfl}
patrick -- I've had two major surgeries since my diagnosis with KD (back
operation and emergency ankle surgery), but I still could manage my airway
pretty well. The biggest problem we had post-op was determining if the
injury and surgery caused resulting symptoms, or if KD was the root cause.
Somehow, I should try to maintain a log of my physical capacity, so that I
can assist in that determination.
susannew -- Yes, Terry has the choking episodes (laryngeal spasms). We call
them "dry drowning". The first time I saw this was when we were dating 14
years ago... he was 26 years old. I wanted to call 911 - but he shook his
head no. Now its been a common occurrence at least once every couple of
months - guaranteed to happen when he's sick also. He just slowly breathes
out and he says the airway slowly opens. He self-heimlichs himself. to try
to force air out. He says the best thing to do for him is to try to relax.
We've asked our doctor about that - they say the worst thing is that he'll
pass out from it, and the larynx will relax and then he will breathe again
just fine. He has never passed out from this - even though he's had
hundreds of these episodes over the years. Its pretty scary to watch, more
scary to think it can happen anytime of day or night - especially when
he's driving - he pulls over to the side of the road.
butch -- Hi Susanne--Hope Terry is doing better. I had the good fortune to
talk with John Coakley. If any of you seem to have a "bad" day try to get
hold of John. He is a very positive individual and also has a wonderful
sense of humor.
susannew -- I agree! His emails never cease to make me laugh out loud!
ms-ronni -- He is most funny. And we can relate
patrick -- If John is going to the conference, maybe we could use him as a
humorist/speaker...
susannew -- He, Annette, Patrick, Terry and I make up the Meeting
Committee... He lives near Baltimore so its a natural and its very
convenient for him to help us with hotels, give us tips about the area etc.!
susannew -- That's already planned Patrick!
susannew -- Sometimes we need to see the lighter side...
susannew -- FYI: Chat will be closing in about 10 minutes...
butch -- He is already looking for the best place at the best price.
Hopefully we can stay relatively close to Inner Harbor for sight seeing
for all those folks who have never been there.
susannew -- At this time, I think we're going to have to take what we can
get! The Human Genetics and Mary Kay conferences are taking all the hotels
during the time frame we want to be there!
susannew -- Ronni, I want to thank you again for coming online to talk
about you and your brother's situation. I appreciate it and I'm sure
others do also. I know how hard it must be to bring up those memories. I
hope you will be able to lead the carrier chat on May 18th.
ms-ronni -- This has been a good experience to Chat. See you all next time
patrick -- I was talking with my sister about our childhood days. We
weren't rich, and my Mom's response when I fell down and cut my knee, was
"Your knee will heal, but you just tore your new school pants!" Now when I
have my KD moments, I always think of that! :-)
susannew -- There are 6,000-7,000 doctors that come to the Human Genetics
meeting!
ms-ronni -- wow
susannew -- I think the conference is going to be great! All planned
breakouts are focused on KD. We are planning a time for a panel of
researchers to discuss current KD research and then they will go to a
private discussion amongst themselves to discuss KD research, share ideas
and brainstorm.
susannew -- That coupled with just meeting, talking and sharing with other
KD'rs makes it worth the trip.
patrick -- I don't know if I can take all those pink Cadillacs!
susannew -- Ronni was at last years FSMA conference and Patrick the year
before, Terry and I were at both. Ronni and Patrick can attest to the
strength you gain from meeting others and sharing with them.
ms-ronni -- funny
susannew -- Patrick: ROTF
patrick -- Yes, it was amazing to meet others who share my "lifestyle".
susannew -- We've met and made many friends that I hope we will continue
to keep in touch with over the years!
susannew -- Wives/Significant others and carriers were able to talk
openly about their issues too and I know they still keep in touch too!
susannew -- 5 minutes till closing
ms-ronni -- It was nice to see who is who. Carriers need to speak up too
susannew -- Absolutely Ronni - you and other carriers have unique concerns also.
ms-ronni -- I can talk alot about carriers. Get carried away sometimes.
I'll keep April 18th open for the chat
susannew -- May 18th...
ms-ronni -- or was that May 18?
susannew -- Please let us know if you have any ideas for chat subjects!
We'd love to hear them.
susannew -- yes - May 18th I believe.
susannew -- Ronni - its good to get carried away! Cathartic too!
susannew -- Thank you so much for coming today, I hope to chat with you
all again soon! Take care.
patrick -- READERS: Don't forget to contact your Congresspersons (those
who live in the 'states) to support the two pieces of legislation on Rare
Diseases just introduced in the House of Representatives!!!
patrick -- G'day/Adios/Tchuss/ Ciao/Hasta la vista
patrick -- {goodbye patrick}
End Chat
|
