The Foundation for Children with Atypical HUS

When I see all of the fantastic news on the transplant recipients receiving good outcomes from their transplants with Soliris, I often imagine what it will be like for me. For me, this is not just an ordinary change, it will be an EXTRAORDINARY change. For 22 years, I have been living on a dialysis machine and counting. Come this February it will be just about 23 years that I celebrate on a machine (not a celebration I look forward to every year). But in a way, it is a celebration, because I have been living longer than many on a machine, now out of options for treatment in the coming years.

 

The title of this post is "My luck could possibly be changing" because it is! I have been working very hard to find a job in the veterinary field. And just yesterday, I received a call inquiring about a job to be a part time veterinary receptionist PLUS doing part time veterinary technician work.  I called, left a message for the appropriate individual to call me back. I called back again this morning and left another message. So, hopefully this afternoon I will be able to speak to the individual to answer the questions they have for me.  After leaving the message yesterday, I was having second thoughts about being a receptionist, because that is not what I trained for. But, my mom states to me "you have to start somewhere, right?" And, I said yes I guess so...I guess I have to start somewhere to get the experience I need to move up in the veterinary field.  It feels good to be recognized for the qualifications I already have and that I am not being blown off, like I have in the past. I am being recognized that despite the fact that I have not yet worked as an LVT, I can work my way up into that position. I am willing to gain some training, before I am "let off the leash" if you catch my drift hahaha.

 

On the transplant front: nothing new on that. My donor did get her blood drawn about a week before Thanksgiving and I have yet to hear any result out of that. It's hard towards this time of year, because first comes Thanksgiving and then soon enough Christmas will be around the corner, so it will be proibably after Christmas that I finally hear something I would assume.  So, keep on saying those prayers for me and my family, that this time the kidney will work and I will not have to go back on dialysis. My life will not be the same, but it will be SO DIFFERENT.

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Comment by Jessica Olivia Frysz on December 2, 2011 at 11:49pm

Melissa:

 

I don't officially have the job yet. I had to interview for it, just like everyone else. From what the phone call sounded like, it almost sounded like I was being handed the job, but that was not the case. I still await to hear some good news HOPEFULLY I did get it.

Comment by Melissa Hearn on December 2, 2011 at 5:58pm

Congrats on the new job!  That's GREAT news!

Comment by Cheryl Biermann on November 30, 2011 at 10:57am

Bravo, Jessica. 

WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

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Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
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