Getting Invovled and Giving Back

[Marilyn1947]

This past Sunday I had one of the best days I have had since this whole process started. I went in a walk-a-thon Called the Walk for Life to raise awarenss of both kidney disease and transplants. My daughters signed up and raised money to take part. People were very generous. I decided I wanted to walk also. It was in Ottawa, Ontario, in a gorgeous park on a beautiful day. I was there with my daughters, son-in-law., wee ones in the stroller and all these people there to support all of us. I got very emotional when I looked around and saw all these healthy happy folks out there to honor someone special to them and at the same time saying that all of us mattered to them.
Sometimes we get lost in our world of machines and worry. It was such an uplifting experience. I realize I am lucky enough to be able to walk but I would urge anyone to just go to one of these fundraisers and just see the way so many care and realize it could just as easily have been them. There were quite a few onlookers who could not do the walk but loved the day.

One of the others groups there was a family I have known for years and their 26 old daughter got hit in July out of the blue with kidney failure. I have been helping to drive her to dialysis and I know it has been good for both of us. It feels good to be able to give back. I now feel better about all who helped me. I hope it also made them feel good. So if someone out there is helping you.. you are making them feel good too!!!!

[Marilyn1947]

How did my thread end up in how to improve Davita? Don't think it has anything to do with that. Was it my mistake?

[angieskidney]

Hmm.. probably just a glitch or misclick. I am sure a moderator can move it to you if you send a moderator a message or they see this post.

I enjoyed reading about your walk! I just walked on Sept 13th for the walk in my city (also Ontario) and it was very enjoyable to see all the people who turned out! I took pictures! Did you? I love to see all the support in Canada as you don't hear about it as much as you do hear about support in the USA.

[Marilyn1947]

Great event wasn't it. We walked in Ottawa as we could not find this type of event in Quebec. Ontario chapter is very active and I love Ottawa and have family there. Yes took a lot of pics and sent a couple to the foundation. Mind you they are mostly of the grandchildren.

[angieskidney]

Originally Posted by Marilyn1947

Great event wasn't it. We walked in Ottawa as we could not find this type of event in Quebec. Ontario chapter is very active and I love Ottawa and have family there. Yes took a lot of pics and sent a couple to the foundation. Mind you they are mostly of the grandchildren.

Yes very much! Actually a man in Northern Ontario told me that the best Province for these types of events is British Columbia and because of lack of events (there was no walk in his city at all which disappointed him a lot) he made a group joining all Canadians together called the "Canadian Kidney Connection"! Are you on Facebook at all? It is a Facebook group. If you are then feel free to check it out! I didn't have Facebook but joined to support him as I am Canadian.

[Marilyn1947]

No facebook. As a retired teacher, when I did join , I had former students coming out of the woodwork LOL!! Nipped that in the bud. Will check it out thru my daughters, page. We must both be night owls. This is the one thing I've noticed since the transplant.. I cannot sleep 2 nights out of 3, but feel fine the next day!!

I feel we are very lucky here in Canada .. we get a lot of support and do not have to worry that money will be the biggest problem in getting our transplant. I don't know about you but I have had tremendous care. To say thanks, for the last three summers my husband has had a sail and golf fundraiser. We give the proceeds directly to our dialysis unit and request they buy something specific. Last year the nurses asked for a dialysis chair and we were able to get two. This year they are buying equipment for the PD room. It is a way of making sure the $ goes directly to where it is needed and not some hospital slush fund.
Time to go to bed!!

[Suzy Q]

Marilyn
I am also a retired teacher! I agree with you about being so lucky to live here in Canada. My husband is the dialysis patient and receives his care at our local hospital. He is so well looked after there that he has decided he'd like to volunteer in the dialysis unit on his "off" days. He realizes that many of the others are much sicker than he is and maybe need support and cheering up.
He also has difficulty with sleeping and is up after a few hours of sleep every night. Guess it's all part of kidney disease!

[Marilyn1947]

Your husband must be a special person to even be thinking of helping on his days "off". I volunteer a lot but not there.As much as I loved my nurses I was very happy to start PD. Mind you I was 40 minutes each way (without traffic) so it was great when I only had to go once a month.

I hope he is doing well and that you as a caregiver are getting the help and support you need. My husband was first my caregiver and then my donor. I will never ever be able to tell him how much it meant and still means that he never gave up on me. Caregivers keep us from giving up on ourselves. Bless you.
Marilyn

[Suzy Q]

Thank you Marilyn. We live close to the hospital so going on his "off day" is not a big deal. He has seen 3 different specialists recently to see if he can have a transplant. We are now waiting for an appointment at TGH to speak with the transplant team there. I wish I could be his donor but have high blood pressure. My children want to be tested if he is eligible.
We have a very supportive family and friends and, as a teacher, everything in me says to never give up on anyone. I will always be there for him!

[Marilyn1947]

you have no idea how much that will help your husband. I saw first hand how the people in hemo did when they had support and how hard it was when their family were resentful of their disease or worse they had no one.
Twice a month I drive the 26 year old daughter of a good friend to the same hospital I was at and she feels that without her family and friends she would feel there would be nothing to fight for. Yup.. caregivers are the BEST medicine.
Marilyn

[jmaryz]

Marilyn,
I really admire you for all of the things you are doing to give back. I have to confess that I have not done much but I did respond to the woman on this forum who was writing a book for dialysis and transplant patients and told my story. The author is hoping that people will read the stories and learn more about what they can do for their particular journey. I have also given my name and phone # to my old dialysis center so people can call me if they have any questions about PD.

When I go for blood work every week I have to go at 6:30 am - when they open - to be able to get back to school on time. There are about 5 of us that go early and we have become an informal support group. It's really important to get support from family and friends - for me it makes all the difference.

I salute caregivers, Suzy Q - your husband is lucky to have such a caring wife.

I would also like to thank people on this forum, I have learned so much and it is comforting for me to know that I am not alone.

Joanne

[Marilyn1947]

Joanne, Nice to hear from you. You ARE giving back.. you work in a school. I am retired and healthy so it is easy to be involved.
You mentioned blood tests every week. I just had my appt. and the next one is in three months (as was last one). Why do you have to go every week? Should I be seen more often?