Jenn’s Story

Site created on September 10, 2019

Hello, my name is Jenn.  I am a 41 years old.  I have 3 of my own children, and I am engaged to a wonderful man who has two children.   I was born with Autosomal  Dominant Polycystic Kidney Disease  otherwise known as ADPKD or just PKD.  PKD is one of the most life-threatening genetic diseases for which there is no cure. In ADPKD fluid filled cysts develop and enlarge both kidneys eventually leading to kidney failure.   I am currently living with 15% kidney function (a normal kidney is 90%& above).  This means that I am in need of a kidney transplant as soon as possible.  I am looking for donors to get tested to find a match.   A match is made based on blood type and tissue type.  I am an A+, therefore I am able to accept a donor with A+/A-/O+/O- blood type.   Please share this website with as many people as you can and get the word out.    If you're interested in getting tested to be a donor please contact me for more information or go to www.mayoclinic.org/livingdonor . Once you are on the website choose the ARIZONA Mayo hospital. You will enter my full name JENNIFER PURVIS and the Date of Birth is 6/20/1978. Once you fill out the health history in a few days you will receive an email from Mayo that says "Hello, At this time, your intended recipient has not been approved for donors to be evaluated. Once we have approval from the recipients team, we will contact you directly." Do NOT be alarmed if you receive this. I have not yet had MY pre-OP (that is in October- more about that in the journal entries). Once MY pre-OP is complete YOU will be contacted by Mayo for the next steps. If you have ANY questions please contact me asap. xoxo jenn

Newest Update

Journal entry by Jennifer Purvis

I've been sharing on Facebook the last two days of testing at Mayo Phoenix and Scottsdale.  But to recap for those who aren't on FB or are wanting to share my site here is what happened:  

My appointments all went well.  It was a lot of scans (CT/EKG/ECG/Brain Angio MRI/Chest X-ray & alot of bloodwork.  Normally I would have super high anxiety for scans such as this but I can't explain the peace I had going into this, completely at ease and that can only be credited to the God of comfort.   The MRI was probably my most "scary" scan having to be in that enclosed tube with what looked like a cage over my head 😳 ,but I just kept my eyes closed the entire time and concentrated on breathing.  I was definitely very tired at the end of each day but thankful these tests are behind me now.

To give you a rundown on next steps:  
1.  I return the first week of November to Mayo Phoenix to meet with the transplant team to review the results of all the testing.   I'm a little nervous for this testing but God is going before me and will put it all into place.   I have seen some of my scans already and so please pray that I'll continue to have peace.  

2.  As stated in my FB posts, I have been approved to move forward with a kidney transplant and they've put me on the transplant program list. Any donors who have filled out the donor information will be contacted shortly and if anyone else would like to consider becoming a donor please follow this link www.mayoclinic.org/livingdonor 
All medical costs are the responsibility of the transplant recipient and not the donor. If you're interested please reach out and I can give more information.  Kidney donation is neither small or insignificant.  It is a huge, life changing selfless gift to another.   I dont take this lightly in asking because I have to consider if I didn't have PKD and someone needed a kidney how would I respond.   This is a highly personal decision, one that I would encourage anyone considering to really pray on, talk about with family and friends and get educated.   So if I post on here I need a donor its not without me deeply understanding the sacrifice someone will ultimately make for me, and I have no words that would express the gratitude for life given to me.  

3.My mom had a transplant in 2005 with a live donor and her donor has offered to share her story about what happens as a a kidney donor with the surgery,  and life after.  For anyone whose offered to be tested to donate our anyone else who is interested in just knowing more about what real life is like to donate, please send me a message and I will put you directly in touch with my moms donor.

4. The long term goal is to help me keep my kidneys as long as possible but to transplant at the right time.  It's a delicate process but one I'm trusting my transplant team to help me know when.  That means I need to have a matching donor sooner rather than later.  Right now I'm not moving toward dialysis thankfully, because I'm still able to get rid of the toxic waste via urine output, no nausea, no edema or fluid retention in the abdomen but my goal is to get a transplant before I'd have to rely on dialysis.   I know dialysis isnt a death sentence,  in fact it can be and is a breath of life for many waiting for a transplant,  but I'm praying I will not need it.  My mom functioned at 10% kidney function for over 4 years without the use of dialysis through her diet so that is why I am working so hard to keep myself healthy with holistic nutrition and exercise.   

This is a rather lengthy post,  I know, but one that I feel is helpful in sharing important information and some personal thoughts.   Please share this post and my Caring Bridge.

Thank you VERY much for all the prayers and encouragement many send my way.  I am very grateful♡

Love Jenn 
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