January 2011 Blog Posts (31)

How much Longer will I wait?

Soooo I'm still waiting for a double lung transplant. It's been about a month and a half waiting patiently at UCSF. Is my day ever going to come? I'm a believer, I'm someone with a lot of faith. Somedays are worse than others.How much longer am I going to have to be strong?

Added by Mary E. Leal on January 31, 2011 at 11:48pm — 2 Comments

So Behind....

TOday I woke up with a crazy bad migraine.  I could hardly get out of bed.  I finally dragged myself downstairs to take my meds and some breakfast....and tylenol.  Uggghhh.....went back to bed.  Headache would not go away so I took my last resort, Fioricet.  DOctors gave it to me for migraines.  Sometimes it works, sometimes not.  It makes me drowsy and dizzy sometimes.  It helped get rid of most of the pain, but I got really… Continue

Added by Emily on January 31, 2011 at 2:06pm — 1 Comment

Replacing Body Parts: Custom-made hearts, lungs, and kidneys could revolutionize organ transplantation

PBS show NOVA Science NOW

What I found interesting is how they might be able to do this.

 

14 min segment on the making of organs  

http://video.pbs.org/video/1754537562/ 

Full video of show [54 mins]

http://video.pbs.org/video/1754457671

Added by Burnie Schultz on January 27, 2011 at 7:58pm — 2 Comments

Transplants are like balloons once you let go you can never get them back!Hold on to them as long as you can... ♥

Transplants are like balloons once you let go you can never get them back!Hold on to them as long as you can... ♥ Continue

Added by steve sullivan on January 27, 2011 at 2:41pm — No Comments

NTAF Update - Arizona Campaigns

Last week, Keith Olbermann signed off on his last show with MSNBC – thanking his viewers for their generous support of causes featured on his show Countdown, including recently featured fundraising campaigns established with NTAF in honor of Arizona transplant hopefuls denied coverage due to state budget cuts. More than $230,000 has been raised thanks to media coverage:… Continue

Added by HelpHOPELive on January 27, 2011 at 12:15pm — No Comments

It would of been nice to know this earlier.....

I have been informed that 2 months ago the doctors did a cholesterol checkup on me and a thyroid test long ago before my tx.  Surprise surprise!  My thyroid function is low and my cholesterol is sky high.  Thank you for not telling me, my rehab counselor told me.  Not to mention that my docs told me not to concern myself with what I ate in terms of heart disease or my steroid induced diabetes because they are controlling it with meds. I thought they were talking about preventative… Continue

Added by Emily on January 27, 2011 at 11:45am — 2 Comments

The Waiting List

Hi all my wonderful friends,

I have found an awesome group on facebook called, "The Waiting List". Here's the link to join and be in touch with others who are waiting, http://www.facebook.com/#!/endthewaitinglist. As well as others helping to spread awareness like myself. I am helping to do a show off your scar project too, so if any of you are interested in participating please do let me know!!!

I'm continuing on my…

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Added by Holly Werlein (Holdol) on January 24, 2011 at 9:36pm — 2 Comments

To give laughters avoids cardiac diseases

Specialist gives hints of as it will avoid cardiac diseases. Laughing is one of the preventive attitudes



Five simple steps can help to reduce his risk of having cardiac diseases, affirm the specialists in preventive cardiology.

According to Holly Anderson, director of education in the Institute of Heart Ronald O. Perelman, of the Presbyterian Hospital of New York, is necessary to do more in order that heart to educate the population on the factors of risk and the…

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Added by Cristina Cagliari on January 23, 2011 at 2:37am — No Comments

I got this! Life is amazing!

All of a sudden I am trying to become a comedian. I am nearly 36 years old, a bit crazy and simply just thankful. I like to pop in here once in a while and see stories of hope and inspiration. I hope that my words help someone out there. I'd love to hear back from more of you. We can win this battle if we all fight together.

 

Read more about me and my adventures on my blog by clicking here: Each Day Counts - I gave it…

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Added by Ruben J. Porras on January 21, 2011 at 7:00pm — No Comments

insulin.....

I had to start back on my insulin shots this morning.  Endo said that my levels are way too high for the pills to be working anymore.  I was a little miffed at first.  So now I have two diff types of insulin and three shots a day.  I'm hoping it won't last long, I just started rehab and we are starting to lower the steroids which is the whole reason I have this problem in the first place.   I was sitting in bed with the needle in my hand.  I never gave myself a shot before.  I knew it didn't… Continue

Added by Emily on January 21, 2011 at 5:02pm — 5 Comments

About outside surgeries

My TX team has informed me that in order to "successfully" get a surgery, outside the TX center, you need to start at least 2 weeks in advance. #1: Educate your "new" docs to your special circumstances/needs. #2: Give them all your special needs on a printed sheet. It should include ALL of the TX phone & fax numbers alongside the TX docs name(s),; your meds...dosages; times taken; alergies, etc. As in, your whole TX history. TELL, not ask, the new doc to fax;email, or call the TX center…

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Added by Paula M. Rice on January 20, 2011 at 4:27pm — No Comments

Life

‎"LIFE IS NOT A JOURNEY TO THE GRAVE WITH THE INTENTION OF ARRIVING SAFELY IN A PRETTY AND WELL PRESERVED BODY, BUT RATHER TO SKID IN SIDE-WAYS, THOROUGHLY USED UP... TOTALLY WORN OUT... AND LOUDLY PROCLAIMING: WOW....WHAT A RIDE !!!"

Added by Lili Feldman on January 20, 2011 at 2:53pm — 3 Comments

A Hilly Road Ahead

01/18/2011-A Hilly Road Ahead

The morning started off waking up at 7:00 am-I have not woken up at that time for quite a while and it was pretty difficult to do, but I am trying to make new habits and going to bed earlier and waking up earlier is one of them.

So by 9:30 am-I met my Auntie and Uncle (who are brother and sister to my mom) in the parking lot of a closed down Mervyn's) with my "Auntie" Meena to go for my first real (non trail) road bike ride. It was good-mildly hilly, but… Continue

Added by Allie on January 18, 2011 at 10:01pm — No Comments

Congrats to NTAF’s December 2010 Transplant Recipients

Sheila Antworth (lung)

Jim Boren (kidney/pancreas)

Bill Flynn (heart)

Joseph Gonzalez (heart)

Michael Hancock (kidney)

Esther Mae Jones (kidney)

Liz Moreno (liver)

Michele Perrin (kidney)

Billy Roach (kidney)

Catheryn Spackman (lung)

Tanner Townsend (heart)

Wanda Valenteen (heart)

Ernie Zavala (kidney)



Receiving the gift of life is only part of the transplant process. Transplant patients face lifelong expenses to maintain… Continue

Added by HelpHOPELive on January 18, 2011 at 6:50pm — No Comments

Face your deficiencies and acknowledge them. But do not let them master you.

Face your deficiencies and acknowledge them. But do not let them master you.
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Added by steve sullivan on January 18, 2011 at 5:30am — No Comments

Settling

Good day everyone in Cyber Space!!  Its been a while since i visited you but here I am now.  

 

I have moved to Vancouver BC, Canada and I am loving it.  What a beautiful city.  

 

I will visit my new transplant team on Jan 21/11 and they will see how well i'm doing.  I haaven't exercised all that much to keep my lungs right up to par but they are at the next best setting.  I figure I am made of sugar and I'll melt if I go out into the rain.  lol  just joking.  My…

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Added by Irene Jimmy on January 16, 2011 at 12:49pm — 2 Comments

switching from prograf to cycosporine

Is anyone on cycosporine? I had to switch because prograf was giving me bad neurapathy. I was on prograf fro 8 years with a creatnine of 1.3. Can anyone give me any comments.

 

Thanks Donna Wheaton

Added by donna wheaton on January 15, 2011 at 11:50am — 2 Comments

Rehab

My first rehab session went well.  The team is very nice and supportive. I only worked out for 30 mins but i was EXHAUSTED when i got home and passed out!

Added by Emily on January 15, 2011 at 11:11am — 4 Comments

Getting surgeries from "outside" doctors

Do you ever just want to scream, with frustration, when you need a surgery from someone other than your TX ceneter & the docs don't have a clue about how our bodies nom longer work like "normal" peoples?!

My next eye surgery was scheduled at an outpatient center & my TX docs only said they'd feel more comfortable if it was done in a reg. hospital. The outpatient surg. center chose to take that as an outright refusal to allow the surg. Of course, my Optho. surg. didn't even ask…

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Added by Paula M. Rice on January 14, 2011 at 4:01pm — 2 Comments

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HDHONEY replied to Frank Colangelo's discussion Vomiting and Diarrhoea after being exposed to chemicals
"Frank  r u having these problems just when working.  I also have had a liver transplant. Weird that stuff is not agreeing with u. hope u can get answers, sure its not ur med "
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Liver Transplants

This is a group for all people who have had liver transplants. Feel free to say how long you have been a recipient and what medication you are on. Some doctors hope to have their patients off all medications, any thoughts?
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Vomiting and Diarrhoea after being exposed to chemicals

Hello AllJust under three years I had a liver transplant due to cirrohossis and Hep C.  I am back at work but seem to experience vomiting and diarrhoea if I have been exposed to chemicals of any sort.  Understanding fertilser and blood and bone for gardens is a no no for me. My medical team cannot give me any answers and I am wondering if anybody has experienced the same symptoms.  The episodes seem to last up to four to five hours at a time and leaves me very fatigued and wash out.  Hoping someone can give me some answers.Kind regardsFrankSee More
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Gene Cost posted a discussion

Working after Transplant

Hello to everyone,My name is Gene and I was transplanted almost 3 years ago. I suffered from liver failure as a result of Hep C. I am 59 years old now. I suffered a torn rotator cuff as a result of my positioning during my transplant and it took some time to recover from that. I did not have any surgery I simply learned to live with it. I also incurred steroid induced diabetes as a result of the transplant and now have a fair amount of neuropathy in my feet. I have found that I fatigue much easier than I once did. My doctor has concluded that I have also suffered some cognitive impairment and as a result of my illness and I have been declared fully disabled. After a year of rehabilitation I returned to work part time delivering auto parts. I have been working for 18 months now. By federal law I can earn $1070/month and continue to receive disability. I find it difficult to live on my part time wages however I have determined that in order to justify going to work full time I would…See More
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TransplantCafe.com commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Yep, Dallas Buyers Club is a great story and example for sure! Personally, I'm with you. Professionally, TC couldn't be involved, unfortunately. And it really is unfortunate because it would help so many people. Sort of like organ donation…"
Tuesday
John Presley Robertson commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Nelson, I understand the laws, but we all know a lot of meds are discarded by patients that don't need them anymore. I don't expect the pharmacies to give it away but there must be away for transplant recipients to do something. Remember…"
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TransplantCafe.com commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Hi John, I think that would be a great service for the transplant community and other patients too. However, I don't think the laws allow this, unfortunately. You're right about there being a great need for a program like this for…"
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John Presley Robertson commented on TransplantCafe.com's blog post Have You Come Up With A Transplant Or Other Medical Idea, Innovation, Or Invention?
"Why don't we develop a program where taransplant patients that have changed meds can share it with those that need that med. and make it free."
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