Get Francine out of her sick-bed for good!

As some of you may know, our once energetic, adventurous, and sporty friend Francine is struggling. For over 20 years, she has been fighting debilitating internal pain and a myriad of other severe symptoms, which she mostly kept to herself because there were so many. In spite of Francine’s best efforts, she has been getting sicker and weaker rapidly in the last year, and she is currently in the hospital on a tube feed. But there is real hope that she will get her life back. Her surgery date is April 19!

She finally received not one but two diagnoses and they are treatable!  Recent tests showed the evidence of two rare diseases: Left Renal Vein Compression - LRVC (aka Renal Nutcracker Syndrome - NCS) and Superior Mesenteric Artery Syndrome – SMAS. They are both caused by the same anatomical anomaly, but give rise to different symptoms affecting multiple systems. In Francine’s case, the anomaly is a congenital defect, which gets worse over time. 

After consulting with specialists all over BC and in Ontario, they discovered that no doctors in Canada have the expertise to take her case and that the surgery that she needs is not available in Canada.  A specialist at the UT Southwestern Medical Centre in Dallas, Texas, Dr. Cadeddu, has offered to do the surgery that could relieve her symptoms from both diseases and restore her quality of life!   

Francine and Douglas, her husband, have worked diligently to try to get the cost of the surgery covered by the BC government, but despite all their work, it has not been successful and they will be facing the full cost on their own. The best case scenario for the surgery cost amounts to $50,000, not including travel cost, post op tests and appointment.  They will be staying in Dallas for 9 nights for the surgery and about 3 nights for the follow up appointment.  Her surgery is booked for April 19, 2019. It is coming fast and she could use some help to get to the finish line! 

For Francine, eating delicious food, going out with friends, enjoying the outdoors, and being pain free and comfortable is just a dream right now. Her husband, Douglas, has been an unflagging support to her all these years and he too is dreaming of getting Francine back!              

Friends and supporters (like us) who have felt unable to help, now have a chance to ease some of the financial strain that Douglas and Francine will be put under, while they journey to Dallas for the surgery.

Would you consider easing this burden for them? Together we can make a big difference in how daunting this is and we can give them a glimpse of how much they mean to us.  Of course, they don’t want to ask for help. Their permission for this was reluctantly granted. Please don’t feel obligated or pressured. Your words of support and other actions are welcome and needed, too. This is just one way of helping. 

Thank you for your time.

Karen Judenhagen  


Links to info about both rare diseases:

https://rarediseases.info.nih.gov/diseases/7712/superior-mesenteric-artery-syndrome 

https://rarediseases.info.nih.gov/diseases/11971/renal-nutcracker-syndrome 

You can watch a short video of the surgery, done by Dr. Cadeddu. It is an extravascular stent placement on the left renal vein, done by robotic laparoscopy:  https://tinyurl.com/y287rd4k


Please donate, if possible, in the next two weeks!