As many of you close to Raffaella Lipscomb are familiar, Raff has a rare and life threatening heart / lung disorder called Chronic Thromboembolic Pulmonary Hypertension (CTEPH) caused by blood clots that settled inside the blood vessels within her lung system preventing her from achieving full oxygen levels in her blood, causing shortness of breath and damaging the heart and lungs. .
Worldwide CTEPH affects 8-40 people in every million. Raff currently has only 65% of her lungs functioning to process oxygen to her body. For the last two and half years Raff has lived with 24 hrs/day oxygen assistance and consumes 4 to 6 litres per minute.
Raffaella was first diagnosed with this chronic illness in Feb 2019 and underwent many major lifesaving procedures in Vancouver and Toronto over the following 7 months.
While we are all grateful Raffi has made it through the initial stage of her journey, the next phase to improving the quality of Raff's life has come.
Raffaella and her Daughter are returning to Toronto General Hospital in November to undergo multiple rounds of a specialized procedure to open more areas of her Pulmonary lung system to allow for more oxygen exchange from her lungs to her blood.
This new and future-tech procedure is called a Balloon Pulmonary Angioplasty (BPA)
Bottom line; the goal is to get Raffaella off Oxygen supply or at least to lower her daily requirements to allow her a better quality of life and more enriched blood/oxygen levels to protect her body.
Through a series of tests over the summer it was determined that Raff qualified for this life improving BPA treatment. However, there is only one qualified doctor in the country to perform this unique procedure, luckily already working for Raffaella's existing Super-Team at Toronto General Hospital.
Starting in late November Raffaella is scheduled to undergo three rounds of the BPA procedure over 3 consecutive weeks. She will stay in the Toronto General hospital for 4 to 5 days for each BPA procedure. During one hospital stay, 2 BPA sessions will be done, one on each side of her lungs. The actual number of BPA procedures will be determined in Toronto following the first rounds.
Raffaella and her Daughter will have to set up accommodations in Toronto City where Billie's Granny Helen will stay and support the family while Raffaella comes in and out of her Hospital stays over 4 weeks..
Here's the part where we are asking for your help - Because of the current circumstances in the World there will be only limited visitors allowed to accompany Raff during her stay in the Toronto General Hospital. Billie has just started school at BX Elementary and Crispin has been working diligently to earn a living picking up construction jobs between home care for Raffaella as well working for the Silver Star Freestyle Club building local sport facilities for kids. Raff's been busy building her small business as an artist at Vaz Art Gallery, and the Christmas season is her busiest time to sell her artwork and prints around the community.
This year, because of the scheduling of the BPA procedure in Toronto, Raffaella won't be here in Vernon to run her business during the busy Holiday season. Also considering the limitations of the Hospital visitor rules, it has been decided that Crispin must stay behind in Vernon and not attend the BPA procedures in Toronto with the Family. Crispin will stay in BC to help run Vaz Art Gallery back in Vernon.
It would be nice if Crispin was able to be with Raffi in between hospital stays in T.O. but at this point the financial burden is a real factor. At this time the financial burden will be determined by the length of Raff's stay in Toronto and the number of procedures she will have to go through in the coming weeks.
The hard costs of this trip to Toronto will involve plane tickets, hotel accommodations, food expenses, out of town taxi and transport services, as well as a number of other inevitable expenses. The last thing the Lipscomb's should be thinking about right now are the costs involved with this life improving procedure for Raffaella.
We are reaching out to ask friends, family and the community to help a local Vernon family get through the coming Months and to focus solely and 100% on Raff's Journey to help her breathe easy again.
The fundraising goal we have set for Raffaella's trip to Toronto is $10,000. Let's make this happen for our amazing and inspirational friends Raff, Billie and Crispin.
More information on Raffaella's Medical procedures in Toronto.
Balloon Pulmonary Angioplasty (BPA)
The goal of the BPA procedure is twofold:
1. Prevent the right side of Raff's heart from getting weaker.
• BPA stretches out the blood clots in your blood vessels and widens the vessels.
• Lower pressure in your lungs means the right side of your heart does not
have to work as hard.
2. Improve the blood flow in Raff's lungs and help with the shortness
of her breath.
• Because she uses oxygen, she may be able to use less over many weeks or months
after the procedure.
• This may give her the opportunity be able to return to your normal activities and become more
active. This will improve the quality of her life.
How BPA works:
A BPA is done by a highly trained specialist and the only one qualified to perform this procedure in Canada.
First Raff will have an x-ray called a pulmonary angiogram. The radiologist injects her with a contrast dye to show the blood flowing in her lungs. People with CTEPH have blood vessels in the lungs with webs of scar tissue. An angiogram helps find which blood vessels are blocked.
• Then, the specialist passes a catheter or small tube into these webbed blood vessels.
• There is a balloon at the end of the catheter.
• This balloon is inflated, pushing the webs of scar tissue to the side of the blood vessel.
• The inflated balloon opens up the blood vessel and helps the blood flow better. The blood vessel stays open with the webs of scar tissue moved to the side.
Raff will need to stay in the Toronto General hospital 4 to 5 days for each BPA procedure. During one hospital stay, 2 BPA sessions will be done.
Depending on the pressure inside the blood vessels of her lungs, Raff may need 3 to 8 BPA sessions over a number of weeks or years in Toronto. The higher the pressure in the blood vessels, the more sessions she will need.
Support Vaz Art Gallery:
Info link or 'Pulmonary Hypertension'
Toronto PHA clinic info:
Toronto PHA Team info:
BPA procedure info link: