I have a question that I have been unable to get an answer to. I am a home dialysis patient, and have been for over 2 years. I run 4 1/2 hours, 4 times per week… In the past year, I have had problems trying to hold my arms up, with my back, and my legs in that the muscles hurt and get “extremely tired”. I also tire very easily. I hesitate to try nocturnal, not only because my doctor is hesitant because of my low blood pressure, but also because I’m not sure if the machine is taking more of something off than it should. I run on a Fresenius 2008H.
I just had my circulation tested because my doctor thought that might be the problem, but my circulation is fine. However, the technician mentioned something to me that made alot of sense. My blood pressure was 90/58 just before the test. That was at 10:30 a.m., and after a “harrowing” drive through traffic to get there. The tech asked me if my blood pressure always ran that low. I told him yes - that when I began dialysis almost 5 years ago, the doctor had put me on Cozaar. The dialysis and the Cozaar combined brought my blood pressure way down to where they finally took me off Cozaar altogether. However, the blood pressure never came back up to my normal (120/70), and now very seldom goes over 100 (top number). It does give me problems on the machine. However, the tech told me that when my blood pressure runs that low all the time, that I’m probably not getting enough oxygen to my muscles, which will make them and me feel “very tired”. Of all the things I have been tested for, this is the only thing that really made sense, expecially when all tests have come back okay.
My question is: What do you do when your blood pressure runs so low - you are on dialysis - and you want to go on nocturnal, but are afraid to because of the low blood pressure and what it would do to your muscles, and that the machine might be taking off nutrients that you need, and nocturnal would remove more? How do you get your blood pressure higher to allow more oxygen to your muscles? What can you take to get your blood pressure to go up some, but not over 120/70? I am at my wit’s end, and am getting weaker and weaker each day.
In reading Home Hemo’s post, I certainly emphasize with her need for an answer to her medical question. Often times, we ask our nephrologists for answers and they either don’t have one, speak in a way that is so technical we can’t understand them, or withold information from us thinking we can’t handle it. Wondering if the moderators of this board have any insights on where patients can get education when their own nephrologists aren’t forthcoming?
Make a list of your questions and prioritize them from most important to least important. This will help you get your most important questions answered if there is limited time.
Make an appointment with your doctor at his/her office. This will give you private time. Tell the person making the appointment that you want time to ask some questions and get some answers. Take your list and extra paper or a recorder so you can remember what your doctor says later. If you don’t understand what your doctor says, say so or repeat back what you thought you heard so your doctor can correct anything you misunderstood.
Look on the Internet focusing on sites ending in .gov, .edu, and .org. One of these sites is operated by Medical Education Institute who also operates Home Dialysis Central and is called Kidney School www.kidneyschool.org. This site has interactive modules on a wide range of topics. There are respected kidney websites that end in .com but some sites ending in .com are trying to sell products so beware.
Ask your doctor or other appropriate healthcare professional to confirm advice you read or hear. Print information you want your doctor to review. Doctors can learn new things from patients too.
Be sure that you’re asking the right doctor your questions. People with kidney problems may have other conditions too. Ask your kidney doctor to refer you to another specialist if your problem is not kidney-related. [Be sure that doctor is on your insurance company’s provider list.]
Research is constantly answering questions, but there may not always be answers to every question…at least for now. Hopefully your doctor will tell you when he/she doesn’t know answers to your questions.
If your doctor doesn’t treat you with respect or talks down to you, let him/her know you feel this way. If your doctor doesn’t treat you differently afterwards, you always have the right to change doctors.
This is our experience and may not pertain to you at all. My father had extremely low BP while on 3x a week dialysis. I took him to the ER on at least 3 occassions as his BP continued to get low after leaving dialysis and he would pass out or get very dizzy. We went to slow nocturnal and his BP now is in the normal range. The only conclusion I could draw is that he just did not tolerate “fast fluid” removal at all.