Serene 1 low blood pressure please some advice

[Serene1]

Hi everyone my name is serene and new to this site and I have an introductory post that explains my situation briefly. Basically I was hoping to see if I can get some advice or personal experience in regards to vascular issues with current fistulas or mapping of new fistulas.  I am 24 yo and my veins are very small and deep also my blood pressure is chronically low at 90/50 and on very bad days 60/30. My current fistula took 2 years to mature and function, and didn't make my life easy during that time as I am upto 9 operations on it so far as it has gotten blocked twice and is completely stented from artery to outflow. If it gets blocked again and if my surgeon is unable to unblock it then they are considering a central line for a few months and see if they can make a new graft from one of the outflow veins which I am very apprehensive and worried about as central lines have a very high infection rate and my veins in my other arm will take at least another 2 years to mature into a fistula. I live in Australia and have been told it's a 7 year wait until I can get a transplant and I've been on dialysis almost 3 years so now were near being paroled. I dunno if any of you guys maybe going through something similar or have similar symptoms to me and if you could please give me some advice I would really appreciate it. I have done a lot of lifestyle changes in order to help improve my blood pressure and lost around 13kg in 10 months and I have a foot bike that I use while I dialyse which I think gives my fistula I could kick up the ass as when I come off the machine it almost looks deflated. Thanks for taking the time to read this and good luck and hope you all are well 

[Rerun]

I have low bP too.  I hope someone can help you with good advice.

         

[obsidianom]

To attempt to help , I would need more info. What caused your kidney failure.? What other diseases and disorders do you have?  What is your family history in general medically//? What meds are you taking?  What tests have you had done for your BP and heart?   any other medical info you can add would help. Any adrenal problems? How about your thyroid?  Both areas can lead to low BP.
Any history in you or family of amyloidosis?
I cant promise to figure it out but will try to do what I can if you provide info. 

[Jean]

Wow, I hope you get some really good advice and can get this taken care of. I don't have that problem, just wanted to offer a little comfort to you in what you are dealing with.

[Serene1]

I will go into more depth about my condition lol ok here it goes.

Born premature about 2 months early and developed very abnormal vascular anatomy. My IVC ( inferior vena cava) never developed to my kidneys and instead moved under my liver and formed 3 huge vessels under my liver, my diagnosis has never been confirmed however my veins are the major culprit as my kidneys never received sufficient blood flow and through the hundreds of biopsies showed no damage to the kidneys themselves which now have shrunk. As a baby I had a central line and PD for 1.5 years and received a transplant a the age of 4. The transplant lasted 17 years and died after chronic rejection on top of acute rejection episodes. Also the immunosuppressant medication caused toxicity to the kidney after 17 years of taking it. I am currently on hemodialysis that I do at home and now really suffering with my veins as you can probably imagine was the most likely reason my kidneys failed in the first place and as I say my situation is ironic. At the moment I am not taking much medication only caltrate,( phosphate binder) calcitriol once a week, aranesp (EPO)and iron that I have through an injection port when I dialyse and that's it.  My blood chemistry and scans are all normal there is no renal disease that runs in our family and my grandfather was a type I diabetic but still he had normal renal function. Besides the renal failure I am fine which is good because I don't want anymore ailments lol. I do feel I retain most of fluid in my bowl as I feel bloated when I drink and do get diarrhoea frequently, I have a theory to my  condition is that I sometimes feel my body can dialyse itself through my bowl as I remove most wastes and fluid through diarreoh when I eat or drink too much and I realized this in the last two months before they took out my transplant. Basically the initial CT scan showed my transplant to be in very awkward position were it was stuck to my diaphragm and the surgeon said it would be very difficult to remove, during that time I was slowly being weened off my medication to start dialysis which of course caused a massive rejection were my stomach swelled and was really painful and was put on a high amount of steroids ( prednisone ) to bring down the swelling and stop the rejection and when I was in theatre the surgeon said the kidney had shrunk soo much that he was able to remove it from the original scar I had the transplant put in initially. That made me think I was surviving for about 3 months with no or very little renal function as I believe the transplant would not have shrunk as much as it did if if still had some function in it. Of course I mentioned this to the doctors and they don't believe me which is fine I understand now that they lawyers before there doctors and have to use words like "maybe" and  " could be" In case I get bored and sue them for being wrong which is ridiculous. So he hope this helps with query  lol take care

[nursey66]

Hi !! My Hubby used to have very low BP while on, & after getting off dialysis. They would have to give him a bag of saline so he could go home. His Neph prescribed Midodrine 5 mg, he would take it before dialysis & 1/2 pill half way thru dialysis , and it really helped. It's a drug to raise BP, so you have to be carefull with it. He would monitor his BP to be sure it wouldn't get too high. 

[obsidianom]

One possibility is you are chronically hypovolemic or almost dehydrated.  You mentioned your issue with fluid loss in your bowel and that may actually be important. Perhaps you are not bringing fluid from your intestines into your blood stream and so you are chronically hypovolemic. That could lower blood pressure.     My question now is , what do you do for dialysis?  Do you remove fluid, and how much? Have you ever added fluid?  Perhaps that is the place to look. You may want a GI consult for your gut /colon also.     
As I think about it more, I wonder if some of your clotting issues could be from hypovolemia . In effect your blood could be too "thick" due to too little fluid . What does your hematocrit run?
If you require a central line , dont be too afraid. While it is not perfect , many people do well for years on them . You do have to be careful but it is doable.
My concern would be if you are prone to clotting would that clot too. Have your doctors done a clotting test on you and looked at clotting fasctors and INR and clotting time? That would be worth pursuing. 
I still wonder about adrenal insufficiency as you were on prednisone at high doses and may have been on it for years with the transplant. If you are no longer on it , you could be into insufficiency as your body may not make enough after the artificial doses. Have they done a test on your adrenals? Low cortisol levels can cause low blood pressure.

[Serene1]

My nephrologist believes I am chronically dehydrated which is not true as the most I remove in one sitting of dialysis is 2L and average about 1.5L removal even after 2 days of no dialysis, my machine isn't sophisticated enough to have fluid added however I believe my GIT system does seem to take some of the roles in my kidney functions so to speak. All my haematological studies are normal in fact last blood tests showed I am anaemic with a Hb level 85 I currently on iron and EPO injections and my clotting factors are good as I don't bleed a lot after dialysis. Today after dialysis my blood was bright red and quite thin as I am taking one aspirin a day as my fistula got blocked for the second time a month ago.

[obsidianom]

I think your nephrologist may be correct.  You do sound dehydrated. Why do you feel taking 1.5 liters off daily is not a lot? It could be more than you need. You cant tell if your blood is too thin or thick by looking at color. that has more to do with oxygenation than thickness or clotting factors.
I still would be interested in clotting tests on you and hematocrtit, and on cortisol. 
Remeber some fluid is lost through the large intestine/colon , and you wrote you think that is ocurring . I guess that may be happeneing and the 1.5 liters or more you take off in addition may be dehydrating you. What did you nephrologist suggest you do? Did he/she recommend any changes in ultrafiltration?

[Serene1]

To be honest he isn't very vocal about what he thinks and a lot of the time i email him with my thoughts and opinions,i am not sure what my hematocrit level is and i believe its good because all blood chemistry comes up blue and only thing thats red is the creatinine which is obviously going to be high. i normally just look at my Hb also i am on plavix so my clotting factors will be screwed up and inaccurate i don't know but lately my blood pressure has been higher like today before dialysis it was 120/69 which is high for me and i removed 1.5L and was 113/58 after i finished the 6hr session and removed he 1.5L and this is my first session after a 2 day break. To be honest i don't feel physically the symptoms of low blood pressure such as dizziness or tiredness. I am not strictly n fluid restrictions and do drink a good amount and i feel when i do drink i feel bloated as if it sits in my bowl rather than my veins i know that sound stupid but i feel it goes back to when i had my translant and before i started dialysis i beleive the last 2 months i had no to very little renal function from the transplant and my native kidneys with the addition of my GIT system that kind of 'dialyzed' me. I know this is all speculation and i have no proof to back it up but ye i don't know lol. I have recently lost around 12kg in 11months and i believe my nephrologist thinks I'm intentionally drying myself up to be thinner which is not true as when i was much heavier my blood pressure was still low and i was retaining fluid. i lost the weight by fasting 2 days a week were i actually drink more and you may think this is unhealthy and bad but my nephrologist had no objections to it and i actually feel more energetic an better since i have been doing it. anyways i will ask him bout my hematocrit and cortisol levels and i guess its weird that only very recently like 2 weeks ago my blood pressure has stabalized so i am just going to monitor it and see how i go and thank you soo much for your advice and input and i really take it on board and appreciate it.