Hi all!
My name is Anjelica and I am a 33 year old female from New Jersey!
I have been doing dialysis for 3.5 years. I started dialysis with high blood pressure but within 6 months of starting dialysis I started getting low blood pressure. Over the course of time my pressure started dropping majorly. I was passing out at dialysis, I was eating the medication Midodrine and I could barely walk through the grocery store without feeling like I was going to pass out. About 4 months ago I started taking the medication Northera and now I hardly am ever symptomatic. I also sleep with the head of my bed raised, I work out 3-4 times a week, and sometimes eat salty foods but my blood pressure still is t high enough for transplant centers!! Ideally the centers I've been to want my pressure to consistently be in the 100s (top number) for 3 months before they will list me as active. I have a possible donor but he can't even get tested anywhere since no one will list me.
On dialysis, I currently dialyze 4x a week (Sun/M/W/F) to help with fluid removal so they're not taking off too much over a weekend. However, my fluid is very controlled; I rarely gain more than 2 in between treatments (and that's with prime and rinse back added in). The doctor even keeps me on the wetter side to see if that helps. Within 6 months, my dry weight was raised 5 kilos!
I have done nocturnal dialysis and that seemed to keep my pressure more in the normal range but after 4 months I returned to regular incenter mostly because I could not sleep on nocturnal and I've never been one for sleeping pills because I can fall asleep on my own just fine at my house.
I have tried to be evaluated for home dialysis to see if that will help but when I did last summer the nurse said my pressure was too low. It has gone up since them so I'm going to try to get evaluated again later on this week.
Has anyone had any issues with hypertension or low blood pressure? Anything I'm missing? I really don't want to spend the rest of my life on dialysis!
I have signed up to go to the Mayo Clinic in Minnesota in September as a last resort but it's rather pricey and if I can avoid going I would like to.
If you read this all, THANK YOU! And thank you in advance for your consideration and any advice you can provide.
Low BP
PD and low blood Pressure.
Low kt/v score
My dad has CKD stage 4.
