Author Topic: Donnalynn's Husband - Please Pray  (Read 78856 times)

Soundy

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Re: Donnalynn's Husband - Please Pray
« Reply #165 on: September 26, 2010, 08:23:35 am »
As I walked the 5K heart walk yesterday and found myself walking alone , I looked to the ground since I can walk more stable looking down a few feet in front of me and let my mind wonder to people in need ... Jim , Captain Deb and my dad were at the top of my list and they were with me and help me keep going when at half mark I was thinking about taking the short cut and kept going the full walk  ...

T&Ps still headed north
« Last Edit: September 26, 2010, 09:24:54 am by Soundy »
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

free2be

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Re: Donnalynn's Husband - Please Pray
« Reply #166 on: September 26, 2010, 11:02:40 pm »
Donnalynn,

I can't believe you and Jim are going through all this. I'm in CA, going to Stanford tomorrow to see what's up with my AN. I took a quick look online. Here is contact information for Mayo in Minn and for MD Anderson. I don't know if that is where you would want to go, if you can get there, but maybe you can call and plead to talk to someone that could advise you a bit. The Med flight idea sounded good, let the community help you Donnalynn...there has to be someone with connections!

Blessings and prayers for your both,
Connie

If your primary problem is related to your respiratory system (lungs) and you wish to schedule an appointment in the Division of Pulmonary and Critical Care Medicine, you may make an appointment in several ways.
Phone:
Appointment Information Desk: 507-538-3270
TDD service for the hearing impaired: 507-281-9786
7 a.m. to 7 p.m. Central time Monday through Thursday
7 a.m. to 5 p.m. Friday

Mayo Clinic in Minnesota
507-284-8884
507-538-7802 (Fax)
Intl.mcr@mayo.edu
Office hours: 7:30 a.m. to 5 p.m. (Central time) Monday through Friday

Here is info for MD Anderson:
Pulmonary Clinic
Cardiopulmonary Center
Main Building, Floor 6
1515 Holcombe Boulevard
Houston, Texas 77030
Phone: 713-792-4015
Fax: 713-794-4711
http://www.mdanderson.org/education-and-research/departments-programs-and-labs/departments-and-divisions/pulmonary-medicine/contact-information/index.html
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Keri

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Re: Donnalynn's Husband - Please Pray
« Reply #167 on: September 27, 2010, 05:54:28 am »
Donnalynn,
Thank you for the updates. I do hope they can get the dates of tests ad all moved up quickly or that you have wisdom to know if and when to pursue another course of action.

Ann - I do hope your husband makes a full recovery as well. I know it must have been so difficult to have your kids see the very scary crisis in action. I know when we had to call an ambulance for my daughter a few months ago what a scary time that was and my other daughter (who is autistic) was around and absorbed a lot of it and I didn't realize how it was affecting her until later. But anyway, I know it makes all the difference in the world when you have a supportive and helpful EMT guy or fire fighter, police, etc that helps you get through (we had that as well). And I think it was neat how you thought of Donnalynn's Jim in that situation.

But, returning to matters at hand - I pray Donnalynn that you have peace and comfort and strength as you deal with this and for quick, good results for Jim.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

ombrerose4

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Re: Donnalynn's Husband - Please Pray
« Reply #168 on: September 27, 2010, 07:11:32 am »
Donnalynn,

My heart goes out to you, I can't even imagine how hard it is having someone you love not being able to get the care he needs. You must try to remain strong and know that you are doing everything you can in an impossible situation with your healthcare system. My thoughts and prayers go out to you, Jim and Vanessa.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Jill Marie

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Re: Donnalynn's Husband - Please Pray
« Reply #169 on: September 27, 2010, 10:02:47 pm »
Donnalynn,

I'm back from vacation and so sorry to hear that things aren't progressing like they should be.  The last thing I did before we locked the door and left on vacation was to post a quick note to you.  It seemed odd to be heading out for fun when you have been dealing with Jim's medical issues for so long and unfortunately it looks like it will take some time before you get some answers.  I'm sure you are like me and so many others, the not knowing what is going on is worse than finding out what is wrong and dealing with it.  I realize from your last post that there isn't much they can do when they only have 2 petscans available and so many people that have been waiting for answers.  I was just so hoping that if you kept bugging them about the petscan they would find a way to get it done sooner, then I would feel like I helped in some small way.  It's hard sitting here reading what's going and not being able to help.  Will be here with moral support as long as you need it. Jill
« Last Edit: September 27, 2010, 10:33:57 pm by Jill Marie »
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Cheryl R

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Re: Donnalynn's Husband - Please Pray
« Reply #170 on: September 28, 2010, 06:35:57 am »
Donnalynn,   I asked my dr about the Mayo Clinic and pts from Canada and he was not sure how that would work.      I am glad the phone nos were posted for you so can check into it if desired.         I hope things are going as good as they can be.
                                                             Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

yardtick

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Re: Donnalynn's Husband - Please Pray
« Reply #171 on: September 28, 2010, 02:16:59 pm »
Donnalynn,

I keep checking in, (even when I was in the Caribbean last week), just to see how Jim is doing.  Many prayers, and hugs to you and your family.

Anne Marie XO
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

CHD63

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Re: Donnalynn's Husband - Please Pray
« Reply #172 on: September 28, 2010, 04:50:46 pm »
Donnalynn .....

So glad you are being persistent.  Sometimes that is the only way to move the medical community ..... unfortunately!

My husband has been on Coumadin (blood thinner) for a year.  He was told that he can eat anything as long as he does not suddenly eat a bunch of green foods all at once.  When it is in his regular diet, the Coumadin dosage is simply regulated to account for his usual amount of greens.  We both love spinach and spring greens so we just make sure to eat it regularly and his INR has been fine for a long time now.  (Initially it took frequent tests and dosage adjustment to figure it out.)

Many thoughts, love, and prayers continue ......

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

4cm in Pacific Northwest

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Re: Donnalynn's Husband - Please Pray
« Reply #173 on: September 29, 2010, 10:18:26 am »
Donna Lynn,

Yowzer wowzers!

Firstly you need to focus your energy on Jim and his needs. Secondly also taking care of YOU the caregiver.

It is time to talk to the fellow firefighters and other family members to fight this beauracracy- on yours and JIM’s behalf.

You have been a very polite and patient Canadian long enough here and it is time to play hardball  >:( - the way I see the Americans do down here. Get a team together there Donna Lynn: get them to turn their baseball caps, hand them each a stick of gum  ::)  ;)  and start focusing intently on this beauracratic baseball game  >:(. Trust me you have already got folks rooting for you, in the stands and sideline, on both sides of the line. :-*


Here is the Alberta contact for your ombudsman office and others who can advocate for you.
http://www.ombudsman.ab.ca/heatlh-act.php

Out-of-country health options details where they can advocate on your behalf
http://www.ombudsman.ab.ca/outofcountry.php

The Firefighters association will support one of their retiree’s -as their advocates also… and they may have a lot of clout if they can holler loud enough.  :-\
http://www.albertafirefighters.com/html/contact.php

Alberta Ministry of Health and Wellness
http://alberta.ca/home/Feedback.cfm?

Health Canada Contacts
http://www.hc-sc.gc.ca/contact/index-eng.php

Here is some news media contact (I suggest you skip the locals, at this late stage , and do national as the clock is ticking here.)

CBC local
http://www.cbc.ca/edmonton/contact/

CBC National
http://www.cbc.ca/thenational/about/contact/

CTV Local
http://edmonton.ctv.ca/contactUs/

CTV National
ctvnewschannel@ctv.ca

CBC radio
http://www.cbc.radio-canada.ca/about/contact.shtml

Edmonton Journal
http://www.edmontonjournal.com/about-edmonton-journal/contactus.html

Calgary Herald
http://www.calgaryherald.com/about-calgary-herald/contactus.html

Globe & Mail (National Newspaper)
http://v1.theglobeandmail.com/help/contact-paper/


Canadians will be appalled to learn that a retired firefighter is being treated in this manner- as I certainly am living down here in the USA. (And Jim’ illnesses can very well be related to past burning substances he was exposed to in his line of work while saving others and their possessions)… In fact I am appalled that ANY Canadian citizen and their caregiver are going through all this rigmarole at retirement age.

And if the Canadian media has you frustrated also ...then go to the USA media… that will GET THE BALL ROLLING in no time as their news spread like wildfire…. Eventually making its way up there also... landing on THE Minister of Health's desk with embarassment.

Darln’n Donna Lynn … it is time to tell your team to play hardball.


HUGS,

DHM


One day I will tell you about my fight to have an unsafe high school in Canada condemned and later bull dozed... I was getting sicker by the day with sick building syndrome- as were my students... but I actually did get results. I actually did this without media involvement, believe it or not, ... but I had to put together a team when I was too tired to fight on my own anymore. I stopped being a polite and quiet little Canadian woman and learned to play hardball VERY fast.
« Last Edit: September 29, 2010, 10:33:39 am by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

saralynn143

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Re: Donnalynn's Husband - Please Pray
« Reply #174 on: September 29, 2010, 10:40:54 am »
That is an excellent list DHM. Thank you for assembling it. I know I feel relieved just reading it over, so I can't even imagine how helpful it will be to Donnalynn.

We love you, Donnalynn, keep letting us know how we can help.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

4cm in Pacific Northwest

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Re: Donnalynn's Husband - Please Pray
« Reply #175 on: September 29, 2010, 11:36:33 am »
Darlin DonnaLynn,

Try to get Iris Evan's to play on YOUR team... as she is THE elected advocate who is suppose to represent the PEOPLE (ie citizens)
http://www.assembly.ab.ca/net/index.aspx?p=mla_contact&rnumber=74

She may be able to go up-to-bat for you... maybe she also has pitching skills

... Polite Canadian women can actually get more done behind the scenes than many may think... but God help the opponent when they decide to go- to - bat for someone and start to play hard ball. ;) :D

Here is her "player's card"
http://en.wikipedia.org/wiki/Iris_Evans

... used to be a nurse?
 ... Worked for the Ministry of Health?

Know until this last hour I had no idea who was in office as I have become so out-of-the-loop after residing down here in the USA so long.

... Bingo maybe SHE is THE advocate I prayed for a few posts of mine -back. (Time will tell) Which one of your team players can approach her in such a way she will want to play on YOUR team?


Is one of the firefighters, by chance, into youth hockey?
http://www.edmontonjournal.com/news/Service+others+inspires+Iris+Evans/3115063/story.html
... they may be able to speak the same language being it looks that for part of her career she was once a stay-at-home hockey mom...

Look at all the links I have given you in the above two posts with your most trusted team players. Let them come up with a good strategy to WIN this game of bureaucratic baseball... so you and Jim can be there for each other. Let your friends, family and fellow firefighters carry the cross for you for a while... Discern when others can carry the cross for you...

My prayer is that you win this ... and that Jim benefits along with others who follow him who will not have to suffer like this.

I will keep your family in my thoughts, prayers ... and reflections. My wheels are still churning... I will think about this some more... and get back to you if I think of any new ideas.

PEACE

Hugs,
DHM




« Last Edit: September 29, 2010, 11:38:27 am by 4cm in Pacific Northwest »
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Kaybo

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Re: Donnalynn's Husband - Please Pray
« Reply #176 on: September 29, 2010, 12:05:48 pm »
What a great list DHM - thanks for doing that for DL...just as an aside...as far as I know, Jim is NOT retired - just unable to fulfill his duties right now because of his illness...correct me if I am wrong...

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

msmaggie

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Re: Donnalynn's Husband - Please Pray
« Reply #177 on: September 29, 2010, 12:45:44 pm »
Wow!  That is one terrific list, DHM!  Donnalynn, we continue to pray for all of your needs....and that just may include someone in your corner who can bring necessary attention to this situation.  Hang in there and tell your Jim that we are sending up clouds of prayers on his behalf!

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

yardtick

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Re: Donnalynn's Husband - Please Pray
« Reply #178 on: September 29, 2010, 02:06:40 pm »
DHM,

You go girl!!!!  Many hugs and kisses to you for putting so time and effort into Donnalynn's battle.

Donnalynn,

Many hugs and kisses to you and Jim.  I'm worried about you also Donnalynn, I hope you are getting some quality rest.



Anne Marie  :-* :-* :-* :-*
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

4cm in Pacific Northwest

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Re: Donnalynn's Husband - Please Pray
« Reply #179 on: September 29, 2010, 10:24:54 pm »

 I have to giggle at some of this, actually our home has been giggling some all day about your suggestions here's why.... this is just toooooo funny....and so ironic!!!!!
Firstly Iris Evans ( who was Finance Minister untill the last Cabinet shuffle these past months) has been my daughters boss!!!!!! That's right Vanessa has been working as Iris's personal Assistant here at the Edmonton Legislature Assemblies!!!!!!  In fact Vanessa recently flew with Iris on the Gov. private jet along with the Premier and discussed our problem with him!!!! ....


 As well, Iris is a personal Friend....


 ...  In fact Vanessa is with Iris as I type this at a conference......and you can bet that this is a subject that Vanessa will be again talking about...


Vanessa is considering running against Iris in the up and coming election ( next year!) Sometimes she jokes about this idea, but lately she is talking more and more about this.....


OMG :o   That is TOO HILARIOUS!!!! :D :D :D :D I had no idea who Iris even was until I looked up who your MLA was, today, and I started brain storming. That is just too darn funny. :o  :D :D :D :D


Don't worry.... I'm not done fighting this battle!


Good for you! Go Girl! and Go Vinessa too!


When Jim is better let us try again to get you both down here to meet our Oregon ANA group... I just can't wait to meet you in person.

I am so sorry you are having to deal with such a broken system. I will continue to pray for you both. I am so glad you got in some sort of laugh today... in all the irony it IS healthy to get some giggles in. Giggle therapy is good. ;D

HUGS

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!