Just starting PD and looking for support

Anna emailed me last week:

Hi Greg,

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.

Be well.
Anna

My reply:

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

4 thoughts on “Just starting PD and looking for support

      • Hi Anna
        My name is Leanne and I am currently on dialysis at the Diaverum clinic with Greg. I am 45 years old with 2 girls, 14 & 11.
        I was diagnosed with IGA in 2004 when I was pregnant with my 2nd child. I managed to maintain my levels for 11 years but unfortunately in August last year my kidneys decided that they had had enough. No one else in my family has kidney issues so it came as quite shock to everyone, especially me. It was a massive shock to me and my emotions ran very high while I was trying to decide which dialysis to pick. I went with Hemo as I didn’t want it in my girls faces and I felt this is what suited me and my family.
        I can understand how your feeling, it’s pretty overwhelming at times especially when there is no one your age to bounce things off and you still have to run your house and look after your kids,
        Do you have a good supportive family???
        My Mum and Dad live 2 1/2 hours away so I don’t have them to help out during the week but in the 8 months I have been on dialysis I have learnt to prioritise different aspects of my life. Housework just doesn’t seem that important anymore and I try to be much nicer to myself. My dialysis days are exhausting but I’ve learnt that sometimes I need to put myself first so that I can recover.
        Just take it one day at time and please contact me with any questions that you may have. I. happy to be a sounding block for you anytime.
        Take care Anna
        Leanne

        Like

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