Hi everyone it's been awhile since I've been on this forum..
Its been a rough couple of months..
My renal failure became much worse..
I wound up hospitalized for about a month in 2 different hospitals, the last hospital specialized in kidneys..
I wound up in congestive heart failure, pleural effusion and pulmonary edema from kidney failure. I almost died. I found out my kidney function dropped to 5 percent in each kidney.i was put on emergency dialysis in the hospital. I now am home and going to dialysis 3 times a week. I have a tunnel shunt in my chest but the doctors are in the process of putting in the fistula in my arm. I am petrified of dialysis still because they lowerd my blood pressure too much twice and I really got sick during treatment. Any suggestions how to get through dialysis without being nervous would help. I'm still new to all of this. I am in the process of being put on the transplant list soon. Thank you..
Very scared of dialysis yet..
I've had about 8 dialysis treatments but still petrified.
Written by
Smokey2014
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I'm sorry to hear you are having such a rough time at the moment. I suspect your heart issues all happened because of fluid overload and pressure on tour heart. I say this because this happened to me in 2016 but thankfully 2 years on it has corrected it's self and my heart is fighting fit. Your made of strong stuff to go through this.
My renal function is 4.5 and I start dialysis in two weeks, I have low blood pressure so I do worry about sickness and fainting all the things you worry about now.
I try and tell my self that things will get easier on dialysis it's new it's the unknown and your body is having to learn a complete you way. So it's going to b stressful to big in with. Just take your time don't push yourself, just rest and go with how tour body is feeling. If you are feeling unwell tell the dialysis girls/men it might be that you are having to much fluid taken off. Do you know what they are taking off you?
Maybe something to think about but I'm actually going to be doing home HD. I'm 38years old and I don't want to be stuck in a unit three times a weeks and my consultant has concerns over my bp so will be doing 5 to 6 times a week at home for less time so maybe something to consider.
I hope everything settles down for you soon. I wish o could over some tools or tips but I haven't gone through it myself yet but I am going to listen to what my body tells me and that would be my one tip.
Keep us posted on your progression this will be a distant memory soon
PD Is the absolute best modality. You can drink more fluid, move around more and is much easier on the body. I planned for it for 8 yrs but still ended up on hemo. You only enter hemo in an emergency situation, I had several catheter surgeries as they always leaked afterward.They may put you on hemo only for the 2 wks PD Training then remove the central line. That wasn't my case but that is what is supposed to happen. I wish you all the best. PD is a smart move. You do have to be extra careful when you get on and off the machine. You need to plan your bedroom set up ahead of time. But all will be ok. Wish you the very best!
I am sure everyone who has to face dislysis if what ever kind is scared, dislysis is huge and most of the population have no idea what it is or like.
Unfortunately your experience was an emergency procedure.
Are you in USA or Uk?
I remember my first HD session 18 months ago, I had just had a fistulagram and did not expect to start for a couple more weeks but surprise, a fistulagram and immediate HD.
One needle first day, that was scary but was straight forward, next day 2 needles for 3 hours then 3 times a week for 4 hours.
The best I had felt for over two years.
After 6 weeks I decided to go for home heamo, trained with my wife for 2 weeks and then home. Best decision I made, 5 times a week for 3 hours a time.
I am 72 and still work full time.
After a couple of months decided to go for nocturnal dialysis at home, every other day for 7.5 hours over night.
Agsin a good decision, my blood levels are almost normal!!!!
I infuse iron every two weeks, I am in minimal medication, alfacslcidil and renovit.
I can do all I want to and to the outside world I appear normal.
Just booked our tickets to Australia in July for a month.
HHD is nothing to be afraid of, work with your renal team and all can be good again.
I have naturally low blood pressure, was tricky at first at home, I used to take one every hour it not while on nocturnal,
Imy bp is lower than 100 over whatever I have saline infusion, up to 200mm, that sorts it for me. I Han my consultant meeeting just before Christmas and my consultant said I was boring!!!! And had nothing to say except that I am a star and just keep on doing what I am doing.
I have the view that this illness will not ever beat me, positive attitude is paramount and with the hel of your renal team you will be great again
I don’t have any helpful hints as I’m not on dialysis yet. But I will say I pray for people in this group suffering from this disease and tell myself as scared as I am of dialysis, at least I have a disease that can be treated and when it comes time, I’m gonna give it all I got!!
I had the same thing happen to me and it really is terrifying. I'm so sorry that hemo isn't going well. I had a similar experience before moving to PD; every treatment left me sick. I was told that it's called disequillibrium syndrome, which is caused by too much fluid being taken off at one time, which in turn causes a blood pressure drop, dizziness, nausea, etc. I was also told that it can take a few months to adjust, so hopefully it gets better with time. Until then, taking in more protein, lowering the amount of fluid taken off at each session and drinking electrolyte beverages like nuun (powerade and Gatorade have magnesium and phosphates, so not a good idea unless doc okay's it) should help.
Also, don't be shy! Your renal team isn't perfect, and they won't know to change your treatment unless if you say so. Only you know how you are feeling, so keeping a record of what's going on and what you've tried might also be benefitial. I hope your treatments get better! Good luck
Hi, speak to your nephrologist and learn as much information as you can. Learn about dry and wet weight and how taking to much fluid off can cause problems. I have had to learn the hard way. I am several months new to dialysis. I have also had all kinds of problems including a recent hospitalization for a-fib and a-flutter induced by them taking to much fluid off during dialysis. I would have to be helped out of the dialysis center and could not function for the rest of the day. My blood pressure goes through the roof at 205/106 during treatment which I have been told is also caused by taking to much fluid off, some go low some go high. I have spoken to my nephrologist and we determined a good dry weight and I now in just a few months am able to drive myself to and from my treatments. I have a chest tube right now, i also have a fistula placed but is not working, having another surgery on it next week. Wishing you all the best !
Oh Smokey I am so so sorry for all you went through and are going through! I so know that horrific god awful undescriptive feeling on hemo when the bp drops!! That happened to me my first day and week and it was pure hell. Nervousness is natural and just becomes an unconcious drive over time. It keeps you proactive even when can't take it. Your are going to find the body will just absorb every bit of your mind through this process and its going to need it. It will level out at some point. I had planned for PD 8 yrs ahead of time. You getting on the translpant list is the key and that is what you focus on as the main goal. You just have to find away to to make it through each day, one day at a time. I remember my first day as they put the central line in wrong and I did not know for a week. Putting in the central line for me was to this day the worst hell I ever experienced. But my neighbor was a Dialysis RN and when I came home as part of the transport from the central line procedure to my first day on hemo.. she grabbed my arm and said "Promise you won't die. You are not going to. " I am visual and without realizing until wayyy later and even now, how powerful that was. Her being there, her instinct, her sincerity and that feel of her hand on arm as I feel it right now. That was like spinach to Popeye. It helped me in ways I can't explain. However your mind works or associates, you will learn as you go through this and it will be that type of moment that will be unconscious lifeline pulling you through milisecond to the next milesecond. The analogy I first gave you when we met,.... that was my trek on Dialysis. I just let my denial win and simply had no real belief I ever would die. I refused to. But it doesn't mean I wasn't scared. I was petrified. But my only focus was waiting for that next milisecond to where I can feel better. You will feel better on dialysis from where you were. I never was prepped for a fistula because I was never going to do hemo I prepped 8 years for PD dialysis beforehand. My case was rare special case and is not important right now. I am fully aware of that horrific feeling you encountered. Over time you will learn the routine and the dry weight. The human body has an innate survival instinct and you will just keep going until you feel better. And that will be soon. You been through hell all at once. Its overwhelming yet the mind has no time to process, as all gets pushed to the backburner as your body demands its concentration. It will be okay. It takes time but it somehow adjusts. I had a central line for 6 mos. Its never to be left in after 3 mos. That cite is the most prone to infection and is only supposed to be in for the 3 mos it takes for the fistula to grow. Make sure you don't get any water near your cite. Don't play russian roullette and wash your hair in the sink like I did. I had my hairdresser wash my hair but it got expensive after a while. Don't take any risks and utilize your support system to its maximum because this is when you need them most. I only had myself but I also wasn't enduring all the hell you are. You are the strongest person I know. Look how far you have come. These months have flown by but yet I know for you is like this slow motion, no word to describe how time can be beyond slow yet go fast simultaneously. I was in a fog. The only thing I focused on is making sure I got to where I feeling better. I got stuck trying to lie down and was caught mid air from sitting sideways on the bed to lye back down. No one was there it was rather interesting. It's ok if you have support, to use them. This is not the time for independence. Have them help you with the slightest of things and feel proud because you giving your body its best. The least it has to stress the better. Make sure you keep pretzels and candy in your pocket book at home and with you at all times. Make sure you take your time standing up and sitting down. That's normal. I had orthostatic hypotension and when I got up too fast I almost passed out and I hit my head on the door. Becareful in the bathroom. I got myself Life Alert that's a big comfort. Dialysis is a shock. No matter how much you prepare ahead of time, no ever is prepared. It's completely foreign to our bodies, but it will give you oxygen. It will pump your blood. It will keep you going and when it levels you will feel so much better. This a major traumatic adjustment. It sucks feeling nervous, all these feelings are the pits. I always had a saying for myself since I was a kid "You have to go through it to get over it." "Face your fears and soon it will be your past." You have to go through the nervousness to get it over with. I myself used educating myself on hemo and dialysis and transplant as it calmed me. It gave me control. I asked anything I needed to know. And if the person didn't answer me I went the next person. As exhausted as I was, that was my nervousness, I was relentless so that I could help me feel better. I was so so sick I was afraid to eat. When I asked I learned I have to eat a full breakfast before each treatment, as it will make me feel and prevent me from getting sick. I would eat but then instantly run to the bathroom right before my treatment. Turns out I had for 6 mos a gastroenteral infetcion of some sort. But I was anemic, started perimenopause of course my luck, while having heparin administered which caused further bleeding and lowered BP. I was not guided well and its important that you tell you Doctor every thing. Follow your gut, your body will lead you to where you need to be. Don't take anything for granted, its okay. Every answer in your from here on will be "its okay". Because it is. You are a dialysis patient and you need and deserve all the care in the world. Nervousness sucks, yet it becomes this foundation of a newfound strength. It pushes you to the answers you need, because you first inclination is to get what answer you need to calm down. You will then learn so much in communication and signals. Follow your gut at all times. Becareful of stairs. Take your time. My aim was to get through this and get home. Just get me better that's it. And that was my drive. That was my pitstops. Whatever it is that led me to finally feel better than what I was at that moment. It will come. And it did. It will for you too Smokey. You will get there. Look how far you have come now? You made it through and you will continue too. There is a Finish Line. It's not fiction. It's real. It's whatever you want most in your life that you want to get to. For me, on hemo it's to breathe and not feel sick. PD is so much easier than hemo. But if you can't do PD you focus on that transplant. Because I am here now to tell you the Transplant is the best modality. You will get a Transplant. In a short while ahead, you will feel better. You will adjust In the same length of time from when you and I met to now, in the next 3 mos, You will get that fistula. And You will feel better. I am here. We are here. Ty so much for coming and letting us know how you are. I missed you. I am so happy to see you! Sending you a big hug!
join natural kidney journey on facebook...i have been able to raise my gfr from 26 to 41 in less than a month...that was my situation it is different for everyone...this fb group is dedicated to changing your diet...supporting your goals and so much more...it is admin by a couple where the wife was able to get her husband off of dialysis...she raised his gfr from 3 to 39-41...he has been off dialysises for over 14 months...there is another person on site that achieved that same thing...plus numerous others who have raised their gfr significantly by diet and determination... here is the link... tps://facebook.com/groups/natural... answer the 3 questions when you click on the site to join or you will automatically be deleted...
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