Anna emailed me last week:
I stumbled across your blog while looking up info on PD catheter surgery info.
I am a 47-year-old mom of a beautiful 2-year-old child in California. I inherited high blood pressure and kidney disease. All my siblings in our family have kidney failure. It kicked in around late 30’s and early 40’s. I was diagnosed the latest at 45 and think it advanced due to my pregnancy. We were hoping my numbers would go back to normal after the baby but no such luck.
My GRF is at 10% and I just two weeks ago I had surgery for an embedded PD catheter. When I met my surgeon, she looked around and thought I was accompanying someone! I will likely be starting PD dialysis in September. I was trying to hold off as long has possible so I would have more time unencumbered with my child.
I have been looking for a while now for online support groups for more folks like me. Most groups are for people that are older than I am or people with the disease from a young or younger age.
I was wondering if you happen to know of any groups/blogs that target more in my age range and ideally folks with very young children. While this disease is difficult at any age, it would be nice to find someone/group with similar life events. I have asked my nephrologists, a few different centers, social workers and so far no one knows of anyone with similar life circumstances. Seems like I am the only parent of toddler in the area with kidney failure/about to be on dialysis in the area which I find surprising and wondering if I am just not looking in the right area. They all tell me to look online but I haven’t had much luck so far.
I have enjoyed reading thru a bunch of your posts but I am going for PD vs. HD and if you happen to know of any similar blogs for PD patients that would be awesome as well. I love all the info, first hand accounts and resources you provide about life on HD esp. all the travel info. The ones about traveling resources, esp. International with suggestions and actual detailed info are amazing. I know if I ever need to do HD, I will have a ton of information available!
I was hoping to not need dialysis until next year as I was planning to visit Australia for the first time in Feb. But I am now putting that off since I don’t really know what’s in store for me til I get some experience under my belt. I know traveling with my PD cycler is possible and can make arrangements for the fluids to be delivered to the destination. I haven’t even started dialysis yet and that itself already seems daunting. But I know I will want to travel in the future once I have established a routine and know what to expect and plan for.
Thank you in advance for any suggestions.
Hi Anna. Welcome to the club that no one wants to join. As you have probably gathered by now, it’s not as bad as it seems. I will post your email – on the blog tonight and I hope you hear from someone soon. As well, there is someone in my clinic who is around your age , with kids. I’ll give her your details – I’m sure she would love to make contact.
Stay positive. Regards, Greg