These 2 Fact Sheets may not be specifically written for VHL disease/cancer syndrome but are very relevant and applicable to the problems related to VHL (and my VHL)...
Dealing with Depression (Kidney Foundation of Canada)
-Some ideas to manage depression on your own
-If things do not improve...
Managing Anxiety (Princess Margaret Cancer Hospital, Toronto)
-What can I do to help my anxiety on my own?
-When should I talk to my healthcare team?
Further reading from HeretoHelp.bc.ca - a project of the BC Partners for Mental Health and Substance Use Information. We are a group of seven leading mental health and addictions non-profit agencies.
What’s the difference between sadness and depression?
What’s the difference between anxiety and anxiety disorder?
I know I have kidney cancer – the renal cell carcinoma because of my VHL Syndrome. But I still had questions, so I started with searching Kidney Cancer Canada:
Kidney cancer is a term that encompasses many different types of cancer that may arise in the kidney. The kind of kidney cancer that you may have depends on which cells of the kidney became abnormal or cancerous. The best treatment is based upon the type of kidney cancer you have and its size. In very rare cases, kidney cancer may be related to a hereditary disorder such as VHL Syndrome
I've been kinda obsessed with this one aspect of my VHL lately because of my upcoming surgery to remove the last of my kidneys (and I guess the cancer, too). I've always wondered and asked my surgeon about all the recurring cancer in my kidneys (for 24 years). I also googled this article:
Expert Stresses Significance of Genetic Differences in Kidney Cancer May 2017- Interview with W. Marston Linehan, MD
When we started looking at kidney cancer in the 1980s… We studied [VHL] patients and these families — these very brave people — and we managed them, learned how to treat them surgically and learned how to do active surveillance…
Comment please on the BLOG page or just in a reply.
What is a panic attack? It's "a sudden rush of intense fear or discomfort, which reaches a peak within 10 minutes, and includes at least 4 of the following physical sensations or thoughts…”
“Panic attacks” are common with the VHL participants according to the VHL Alliance’s MyVHL survey. Also see VHLA Patient Handbook - Emotional Health.
For example, in recent years, I had at least a few medium panic attacks when I read suggestions or answers to my questions on a VHL-specific online support site. In any case, I thought that some self-help fact sheets would be a good start to learn more about this anxiety/panic (and depression) stuff. Then you can ask or discuss any concerns with your professional- clinical-hospital healthcare team if you want.
Strategies for Panic Attacks (and panic disorder)
How friends and family can help with anxiety (and depression)
How to deal with Anxiety
Dealing with depression
(These sheets may not refer specifically to VHL, but I have found them to be very relevant and useful for my own VHL situation and I have used some of these resources for my work)
Email me with any questions or feedback.
I'm off to another surgery...
in about a month. Woohoo. Everyone probably has their own ways and routines for this stuff. For me, they're taking out the rest of my kidneys (finally after 24 years! I've also had a lot of brain surgeries, etc.). But, it's still hard to not freak-out a little and to start getting down on myself. Moreover, I've been on disability benefits -at home- for the last 5 years, so I don't have the same strength, endurance and supports that I used to have! So I look for role models and inspiration to help me get ready.
The VHL Athlete and surgery
“In addition to the careful preparation my doctors and I went through… I trained myself for this even as if I were training for a sports event. I made sure my body was healthy and strong… and that my mind was strong as well. Through meditation and guided imagery, I pictured the surgery going well, the surgeons confident and successful… now on to physical therapy and back to normal life.”
—Jennifer K., Australia
VHLA Patient Handbook, p. 77
Centred through uncomfortable situations
“… One of the most useful and versatile strategies or techniques I have is yoga. For me, it is one of the most flexible and useful tools I have that can be applied to almost any situation, VHL-related or otherwise…
For example, today I was at an end-of-year breakfast for my son. We were sitting in the cafeteria and it was pretty much total chaos. My husband needed to leave to go to work, and my friend, who was driving me home, was not yet available to leave. I found myself sitting and waiting, with no one to talk to and, oh yeah, I am blind. So I realized that I was focusing on my breathing and keeping myself calm and centered with the chaos of all of the 200+ children and families swirling around me. It might have been a very stressful and anxiety-inducing situation. Finding my center and focusing on my breathing helps me keep calm. I find I use yoga all the time. Especially before procedures …”
-Lisa “Yoga and Stress”
Make time, be active and ask for help
“There are many factors that affect a person’s health. Some things, like genes or age, cannot be controlled. Many things, like sleep, nutrition, and exercise can be controlled. A healthy lifestyle will help improve your overall health and well-being...
It is important to live a healthy lifestyle, but being healthy means different things for different people…”
-Living with VHL: www.vhl.org
April 9, 2019
I feel better knowing a little more about...
* Patient Natural History Study (formerly CGIP survey) • Most respondents from US, but also some from Canada and other countries • Established 2014 • Numbers copied from slides (13th International VHL Medical Symposium, Houston, TX on October 4-6, 2018)
Also, last April, I also wrote : "There are 12 Canadian de novo’s just in our online VHL Peer community [about 30] on Facebook. Overall, our confirmed contacts list of VHL Peers in Canada = 141..."
Positive Coping Health Conditions (workbook) Depressive Thinking
Sent Tue, April 2nd 12:14 PM to 106 recipients by you
HPA Axis (Stress) Warrior Responses Postures
Sent Sun, March 31st 9:59 AM to 108 recipients by you
A Model Of Support - Charitable
Sent Fri, March 29th 10:50 AM to 108 recipients by you
Phenomenological Psychosocial Psychiatric Qualitative Research a few examples
Sent Thu, March 28th 4:03 PM to 106 recipients by you
See yourself as warriors?
Sent Wed, March 27th 12:25 PM to 107 recipients by you
VHLC Maybe it’s just me, but I think certain resources on the social-emotional...
Sent Sun, March 24th 1:29 PM to 102 recipients by you
VHLC 24 years of RCC ... I've been referred to a Multi-Care Kidney Clinic
Sent Thu, March 21st 11:48 AM to 102 recipients by you
VHLC 4 Month Tracking Update (on) Peer Support
Sent Wed, March 20th 3:28 PM to 101 recipients by you
CRA Info (VHLC’s Financial 2017-18)
Sent Tue, March 19th 4:14 PM to 105 recipients by you
Blog January 30, 2019
Happy New Year!
VHL Canada Peer Community includes patients and family members like parents, partners, children, siblings, and aunts. Online, Facebook is the main website at this time to connect the VHL Canada Peer Community in a vast country.
Common personal themes include... I'm:
Personal and Family Stories here
There’s also a public page for updates here
Blog Dec. 21/18 - Merry Christmas, Happy Holidays, Happy New Year
I love Coke! But my kidney function (CKD) is very low; after many VHL-related procedures to remove kidney RCC tumours over 23 years, I only have about ½ left. My doctors and dietician are telling me to eliminate colas and anything high in Potassium, Phosphate and Sodium to prolong their functioning (till the end). I’m sure a lot of VHL people with kidney problems are in a similar boat. (I know there are other dietary changes for other VHL areas)
So I thought of sharing my personal fav’s list of “approved” pops. They’re also narrowed down by availability in my grocery stores. To see a full list click here to see Table 1 in this research article.
Henry's fav list of
Pops with < 1 mg Potassium and <1 mg Phosphate:
-Root Beer, 174 Calories, 45 Sodium (mg)
-Cream Soda, 174 Cal, 45 Sod
Barq’s Root Beer, 166 Cal, 66 Sod
-Club Soda, 90 Cal, 90 Sod
-Ginger Ale, 140 Cal
Mountain Dew, 110 Cal, 75 Sod
Ginger Ale 180 Cal
Club Soda, 105 Sodium
Mug Cream Soda, 180 Cal
(Mug Root Beer = 170 Cal, 15 Pot, 1 Pho)
Sprite 144 Cal
-Original Citrus, Black Cherry, Peach Citrus = > 1 Cal each
Nestea Lemon Sweet, 129 Cal
(this is another similar list, but it has sodium levels)
December 2015 and
Unique Visits 2,987
First Time Visits 2,136
Returning Visits 851
Traffic by Province:
Ways to give
Support (Social-Emotional & Information Links)
39% Direct address or bookmark
34% Websites (e.g. Facebook, national/international directories and databases)
27% Search Referrals (mostly Google)
Traffic by country:
1/36,000 is about 1000 people with VHL in Canada
VHL Canada is a small non-profit started by a patient and registered in 2016
Details: click photos