Tuesday, October 14, 2014

Well....


Last Monday, I spent the day at the Pensylvania state capital in Harrisburg with approx. 100+ other folks from across the state in an effort to get the Donate Life PA Act on the books before the legislative session adjourned. 
Now I don't have a single bone of political activism in my body but as you probably realize, this legislation is very near and dear to me. If you follow this page at all, you've noticed that I've been trying to muster support for this law.

I arrived at the group meeting place on the Capital's steps and I was on scene for about 30 seconds when a friendly lady named Diane came over and struck up conversation, welcomed me, and gave me a Donate Life PA tee shirt. Diane wasn't one of the organizers, but rather a long time supporter and a huge advocate of organ transplantation. I learned later that she has been actively involved with Gift of Life and it's cause, since the death of her husband who was an organ donor. I also met Masha and Jen -  more quality people from northern PA whose lives have also been intertwined with the transplant process. ALL of these folks are so friendly, so helpful, so caring, that I'm beginning to believe that this is a beautiful side effect / gift from being touched by the transplant experience.
A sort of - "Let's not try to see through each other in this life......Let's try to see each other through" philosophy that this world could use a lot more of.
I aspire to be more like these people.

Once inside the Capital, we met with folks from Gift of Life, CORE, NKF, and others and were given information and directions on who we needed to petition to get this bill passed. I went to the offices of my state senator and my district representative and introduced myself, had extended conversations with their staff, and  expressed my thanks as both of them have been supportive of  Act 850.

All of this peace, love, and understanding had me feeling so good as I left the capital that day. I had met some wonderful people, it was a spectacular Kodachrome kind of day with bright sun, deep blue, cloudless skies, and crisp autumn air that warmed to a welcome 76º by mid afternoon. The capital is an absolutely gorgeous building, steeped in history, and in some small way, maybe it was a tiny bit of history that we were all part of today.

That was last Monday. 
SB 850 needed to be passed by the House by Friday.

It didn't make it.

Now, when the legislature convenes, all the work to get the Donate Life PA Act passed will again, start from square one.
Now I know this is the way the game is played, the way legislation works, but there are lives in the balance here.
It's all very frustrating.

Thanks for your help, your support, and for checking in here.

Wednesday, October 1, 2014

Congratulations and THANK YOU!



Dear Supporters,

Thanks to your hard work and commitment to donation and transplantation, Senate Bill 850 was passed yesterday in the Senate by a vote of 47 to 3!

Now the bill will move to the House Judiciary Committee and then the full House for consideration and we still need your help. Please keep calling THIS WEEK – now to your state representatives. Please ask them to:

  • 1. Support Senate Bill 850


  • 3. Pass Senate Bill 850 AS SOON AS POSSIBLE

Please also pass this on to your friends and ask them to call as well. We need our representatives to hear from as many supporters as possible – family, friends and coworkers.

You can find your state representative at this website: Find your legislator



More information about the Donate Life PA Act can be found at: Join Us | Save a Life Now PA



Thank you again for all you have done. With your help, we can pass this law and save lives.


Kari Rowe
Volunteer Coordinator
Gift of Life Donor Program
401 N. 3rd Street
Philadelphia, PA 19123
215-557-8090 ext.1132

www.donors1.org



Just FYI Senator Scott Wagner, representing York, voted in support of this Bill.

I'd like to think that the emails and calls to his office may have influenced him to this end.
Now a folo-up email or call to his office @ 717.787.3817 would be in line to express our thanks and gratitude.

See how your State Senator voted:
Roll Calls For Senate Bill 850


Thanks so much for your help with this.
PLEASE don't stop until it's a done deal.
We've come too far!


Monday, September 22, 2014

Urgent - Donate Life PA Act - IN JEOPARDY

The following is a late afternoon, urgent email that I received from Gift of Life today.

PLEASE SUPPORT THIS BILL!
If you haven't already, please sign the petition and consider using the links previously listed to copy and paste a form letter and email it to your State Senator. This info is also listed by following the links.

THANK YOU!



Dear Supporters,

Over the past several months we have asked for your assistance in advocating for the Donate Life PA Act (Senate Bill 850). Today we need your help more than ever.

SB 850 is scheduled for a vote in the full Senate tomorrow. Today we learned that the lobbyist for the state coroners association has circulated an amendment that would eviscerate the bill, as well as strip Pennsylvanians of their rights and jeopardize criminal investigations.

The Solobay Amendment would completely eliminate any requirements for coroners. As is the case now, they will be able to deny organ donation over the phone without ever investigating a case. This means that, on average, about 50 transplantable organs will be lost and 10 or more families will be denied their right to determine their loved one’s legacy. 

Please call your senator to ask them to OPPOSE the Solobay Amendment while supporting SB 850 in its current form. The Solobay Amendment will hurt organ donation and ultimately more people will die waiting as a result.

Sincerely,

Kari Rowe
Volunteer Coordinator

Gift of Life Donor Program
401 N. 3rd Street
Philadelphia, PA 19123
215-557-8090 ext.1132

www.donors1.org

Thursday, September 18, 2014

Latest Update

This just in.......

Dear Volunteers and Donate Life Advocates,

Senate Bill 850 was successfully reported out of the Appropriations Committee on Monday and it is VITAL that it be passed by the full Senate next week.

To those of you who have already made calls and written to your senators, THANK YOU!—but we still need your help! We need you to keep calling! Please challenge 4 of your friends or family members to make a call as well.

In support of the upcoming vote, we are asking all of our volunteers who live or work in Pennsylvania to call (or write) their state senator:

• Ask them to VOTE YES and support SB 850 (if you’re told they support the bill, be sure to thank them!)

• Urge them to contact leadership to ensure that SB 850 gets a vote by the full Senate

• Remind them that the hospitals and the community support  and needs this bill

• Finally, let them know that you support the bill because it will save the lives of those on the waiting list



A list of telephone numbers for all Senate offices is attached and you can find your senator by entering your Pennsylvania address here: http://www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator/

Finally, if you haven’t already done so, please sign the petition at http://www.savealifenowpa.org/join-us/ and share it with your friends and family.

Thank you for your continued support and hard work- keep us updated on your Senator calls and send any questions our way!

Kari Rowe

Volunteer Coordinator
Gift of Life Donor Program
401 N. 3rd Street
Philadelphia, PA 19123
215-557-8090 ext.1132
www.donors1.org

 




Please.......


OK now I don't ask for much but if any of you can appreciate my being here at all, (and I know it's hard some days) or anyone else that you know that has benefited from a transplant, could you please consider signing this online petition in support of The Donate Life in PA Act?  No money. No hassles. No hard time. Just your name on an email document.

The Donate Life in PA Act is summed up like this : 
Pennsylvania has long been a national leader in organ and tissue donation and transplantation. We are home to many of the finest transplant programs in the country, but with that comes the responsibility to advocate for those awaiting a second chance at life. There are more than 8,300 people waiting for an organ transplant in Pennsylvania. Over the past ten years, nearly 500 of those waiting in Pennsylvania have died annually—or about nine people each week. I came very close to being one of those nine.

The first step towards solving this public health crisis is passing the Donate Life PA Act. This legislation will ensure that more life-saving organs are actually donated by increasing public awareness about the issue. It accomplishes this by bringing education about donation and transplantation to high schools, nursing schools and medical schools. Pennsylvania lags far behind national leaders in donor designation on driver’s licenses. Education in schools and instruction of those being trained as medical professionals can help remedy this by dispelling myths about donation.

The Donate Life PA Act also strengthens regulatory oversight by ensuring that all anatomical donations are initially referred to a federally-designated and regulated organ procurement organization (OPO). It also specifically prevents the type of unregulated recovery of tissue that led to the Biomedical Tissue Services scandal involving the theft of body parts at Pennsylvania funeral homes.

The Donate Life PA Act will help save the lives of people awaiting transplant in Pennsylvania. We ask for your support in passing this important legislation as soon as possible. Every day of delay puts more lives at risk.
_________________________________________________________________________________


If you feel really zealous, those of you living in Pennsylvania could let your State Senator know your feelings on this.


Here are a few other links to help you along:

 

IF NOTHING ELSE......could you please sign this?  

I thank you, as do the 8,541 (as of this very minute) people in Pennsylvania that are waiting for a transplant.



Saturday, August 16, 2014

The past is never far....

It was a year ago today that I came home from the hospital, post-transplant, (for the first time) and I so fondly remember just how sweet it was to be here.....balloons, banners, cards, my couch, my guitar, my REFRIGERATOR, my bed!!!
Home. Home again. Ahhhhhhhh.
Though it was short-lived (I had to go back within 4 days) it's a lesson that's imprinted on my brain now not to ever take even the simplest things for granted. Some of you know that I have been reliving the events of last year day and night for the past twenty days and never taking things for granted seems to be the underlying theme.

Thursday I had my official " One Year Out" clinic appointment. I text a friend that as I was going into the appointment, Inside Job was playing on my Pandora. I thought this was a beautiful coincidence and definitely good karma. The one year marker is a bit of a milestone in the tx world and they are very happy with how my grafts are performing. Although I am having some other issues that are directly related to the aforementioned success, they've handed me off to "other issue doctors." and despite my very vocal protesting I have had to have some rather medieval tests done. What they originally believed was the result of CMV, the transplant surgeons now think (hope) that the trouble is coming from the combination of meds that I am currently on and will be consulting with the other doc to determine a course of action. On Thursday they ran a couple blood tests to check levels of  CMV, eGFR, RBC Morph, Abs Baso Ct, Abs Eos, Abs Immature Gran Ct, Abs Lymph Ct, Abs Mono Ct, Basophils, Eosinophil, Immature Gran, Lymphocytes, Mature Neutrophils, Monocyte, Cyclosporine Levels, Lipase Lvl, Amylase, Magnesium Level, Phosphorus Level, Anion Gap, BUN, Calcium, Chloride, CO2, Creatinine, Glucose Random, Potassium, Sodium, CBC with Diff - HCT, HGB, MCH, MCHC, MCV, MPV, Platelet, RBC, RDW-CV, RDW-SD, WBC, and some others.



I also had the joyous revelation the other day that it's been more than a year now since an event of hypoglycemia has almost killed me. With the deteriorating kidneys and the diabetes, this was becoming an all too often occurrence back then and so this alone is worth any inconvenience or symptoms that I have now.

Since I've now cleared the one year hurdle, I am not scheduled to return to clinic for six months (analogous to birds being kicked out of the nest) and my twice-a-week blood draws now are cut back to once every two weeks. Woooooo Hoooooo!!!

That's the word from here for now.

Sign me......Forever Thankful.


Thursday, August 7, 2014

Blog Maintenance

Alright, as much as I really hate to do this, I have to bother the people that I appreciate the most on this blog - those that leave comments.

Because the web is full of jerks, miscreants, and those just out to make life a drag for everyone else, I get about 50 pieces of email a day from web-bots "commenting" on my blog. Now I have the screening set up that their comments don't show, but I still get their emails in my inbox and it's really becoming bothersome.

Most of these look something like the following.
(The third party links have been disabled to protect you all.)
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Ridiculous, sad, sometimes funny, but always a pain in the butt.
So as you can see it's a bit of a drag to deal with 50 of these everyday and so I've had to add a "Captcha" or  "Word Verification" when you want to add a comment. I sincerely hope that this doesn't discourage ANYbody from leaving their thoughts. If it does, please let me know and I will remove it and just put up with the spam.

Thanks for your cooperation with this.