Hi,
Our family is new to all of this as my dad had a temp cath placed in his neck this past Saturday. He received his 1st dialysis at the same time and will have his 2nd one tonight. I don’t know all of the terminology, but hopefully my questions will make sense.
1st - He has been very weak for a few weeks now. How long does it typically take for your energy level to go back up? Will it return in full or does it depend on the patient?
2nd - He has lost about 15 lbs (I think) in the last 2 weeks and does not have an appetite, when will it return?
3rd - He has had very strong urges to urinate (he says they are painful) but is unable to go. He gets the urge about every hour and can only go a little. Is this normal? Any ideas as to why this is happening?
I am so glad to have found this board, and hopefully someone out there can help.
Thanks!
Hi Tara
I’ve been on hemodialysis for going on 3 years. I can tell you my experience, and the experience of many people I know.
I had a bit of a pickup in energy when I first started dialysis, but, dialysis itself can be extremely tiring, and at least for me, it wore me down more than any gain in energy I may have had. Realistically, it can take a good 6 months for someone to really start feeling better. It could be less, but, I would give it a few weeks at least. Since your dad is dialyzing via a catheter, the likelyhood is that he is not getting as efficient a dialysis as if he had a fistula or a graft in his arm. Why? Well, because often, they can’t run the blood pump on the machine quite as fast with a catheter. There are exceptions, as with anything else. But if this is the case, it might take longer to feel better. Is your dad scheduled for fistula surgery at this point? The ideal situation is to have a working fistula before starting hemodialysis, but sometimes, the whole thing just happens faster than expected.
I can’t emphasize enough the importance of eating enough protein despite a lack of appetite. If the appetite is so bad that your father simply won’t eat enough, it’s time now to talk with the dietician about a special protein supplement. Not eating enough protein will definitely make it an uphill climb. This is because dialysis itself strips a lot of protein out of the blood, and it has to be replaced daily - otherwise, there are bad consequences, due to the body not having enough protein to repair itself. The more your father can eat, the more he will eventually feel better. My appetite returned gradually over a few weeks, but I made sure I was eating enough even if I wasn’t hungry.
I don’t know about the urination problem. I still urinate, so I haven’t had the sensation you describe. My guess is that, while the kidneys may not produce much urine, the bladder is still working. It might take a while for it to settle down. Is your dad drinking up to his fluid limit daily? It’s also important to drink enough - not more than the limit, but at least close to it. A person doesn’t want to go around severely dehydrated all the time.
I hope that helps.
Pierre
Hi Tara
I to like your father had no appetite when i first started dialysis weighing in at 49kg was not good. It took weeks before i felt like eating BUT the people close to him such as yourself have to make sure is is eating. without the proper proteins etc he will only feel weaker and then less likely to want to eat. small often snacks are the way to go if he can’t sit down to a big nightly meal. i used to have sandwiches ,crackers, finger foods. ANY FOOD IS BETTER THAN NONE AT ALL. the restrictions and limitations they place on you as a patient can be very daunting he would be feeling like they are taking everything away from him and dictating to him what he can and can’t have. We all go through this and he will get over it. Life on dialysis is still limiting but you change, re-arrange, and overcome.
I have been on dialysis for 3 years now and am working full time. I have 2 small children aged under 10 and now i have the energy to keep up employment and keep up with the kids.
I new to this talking about our condition thing this is the first time outside my immediate family that i have discussed anything to do wtih dialysis and my feelings.
Should you have any questions i’ll be back here again soon.
Thank you so much for your replies and answers. I will be sure to pass the info along to him. He still does not have much energy although his voice comes across stronger on the phone so maybe even though he doesn’t feel any better he is getting there.
David- Thank you so much for sharing your story with me. I will pass on your ideas on eating little “snacks”, I don’t think he’s been doing that. Today he said he had a bowl of oatmeal for bfast and a bowl of cereal for lunch - I know if that’s all I ate I wouldn’t feel too good either. I will pass your message on and make sure he know’s how important it is to eat even if he doesn’t really want to. Your story is very encouraging, working a full time job, 2 kids and dialysis! I applaud you. I am a healthy stay at home mom of 2 and I think I have MY hands full. I hope you don’t mind me asking, but how long (if at all) did you have to take off work when your whole process began? He wants/needs to get back, but just doesn’t have the energy.
Pierre- Wow, I hope that he doesn’t have to wait 6 months to feel better! Ugh, he’s having a real rough time and it’s been about 2 weeks. He really needs to feel some sort of relief soon! No, he does not have his next surgery scheduled as he is trying to decide which route to take. He has to make a decision within the next 3 weeks and he also is planning on pursuing the direct donor route. He has a handful of people interested, the testing just needs to be done. Best case scenario would be to jump right to a transplant, however we don’t know the process. The tip about the supplement is good, I know it’s hard to make yourself eat when you don’t “feel like it”, I’ll pass that on to him as well. He found out today that some people do still urinate and others don’t. He still is and it is causing him great pain. I’m hoping that maybe it is temporary and as his body adjusts that it will go away - it seems to be a very frustrating part of his day as it is every hour and it is such intense pain. I don’t know how much he’s drinking, I will have to check. Do you know what the limit is, or is it an individual thing?
Thanks again for your help!
Another thing that could help your dad would be to ask the doctor for a referral for physical therapy. When people have been inactive due to feeling poorly, it starts what has been called a “cycle of deconditioning.” People don’t feel good so they don’t move around much so they get so weak that they can do even less. The cycle needs to be broken and physical rehabilitation is a great way to break it.
A physical therapist can help by designing an activity program for your dad and helping him do it until he gets the hang of it. Medicare and most insurance will pay for a physical therapy evaluation and treatment as long as the doctor orders it for a covered condition and progress is being made. PT can be done in the patient’s home or at an inpatient or outpatient rehab setting. Although doing it at home sounds more convenient, there is more equipment in the rehab clinic so progress can be made faster.
There is a booklet on exercise that was designed for patients on dialysis (www.lifeoptions.org/catalog/pdfs/booklets/exercise.pdf) and Kidney School (www.kidneyschool.org) has a module on staying active that might be helpful.
Getting the ball rolling re transplant evaluation of your father and his potential donor is just a matter of telling the nephrologist that’s what he wants to do. It can take a while to get those evaluations done. A kidney transplant is definitely the way to go, if he has a donor. Otherwise, it’s the waiting list.
Has your father seen the renal dietician yet? It doesn’t sound like it. The daily fluid limit is usually 1 liter plus whatever amount he urinates in a day.
Yes, I’m afraid that it can takes weeks to start feeling better. I would rather tell you that than give you some pollyannish tale that isn’t realistic.
Pierre- My dad saw the dietician last night and it sounds like she gave him tons of information, it is good to have the info, but you probably remember it is a bit overwhelming (what can I eat, what can’t I eat, how much is enough, how much is too much). I am sure that over time it will become like second nature however right now it is rough. He also saw his Dr last night and he told him he should be feeling better within 6 weeks, we hope it is quicker than that, but it is good to know that his energy isn’t gone forever. I think that today he is not so sure about the transplant idea…he has so much to think about…each day seems to bring something new.
Beth- Thanks for the info, I am going to post a reply to you under PD.
Thanks again for sharing your knowledge!
TARA
Hi Tara
Most people who have chronic renal failure took some time to get there. Dialysis isn’t a perfect treatment. It can remove fluid, it can remove urea, creatinine, etc., and it can reestablish electrolytes levels, but there’s a lot a real kidney does that dialysis can’t. This is one reason why after the initial blip of feeling better after starting treatment, it can take a while. Keep in mind that, unless doing hemo hemodialysis, treatments are only 3 times per week. So, it’s almost like the patient goes backwards as much as he goes forward. Dialysis only restores the equivalent of 10-15% kidney function. There are some people who feel fine at that level, but it’s safe to say that the majority don’t. There are many factors, including body size, age, any other medical conditions, etc.
In addition to the above, most patients don’t realize that the initial dialysis prescription is established by a kind of informed guesswork more than anything else. Your father might luck out and his nephrologist gets it right from the beginning, but in my experience, it can take a while (usually weeks) to establish the most optimal dry weight, the potassium and calcium bath concentrations, and so forth.
This is why most kidney failure patients want a transplant if they can get one. To be frank, your father may not have the clearest thinking right now (like with respect to being evaluated as a potential transplant recipient). Chronic kidney failure does tend to fog the mind a bit. This is the kind of thing that it will take a few weeks to improve.
There’s always someone you hear about who started dialysis and didn’t miss a step with work and every activity known to mankind, including leaping tall buildings. These supermen do exist, but they are an extremely small minority. But, because they do exist, they make the rest of us wonder how come we can’t do as well right away. Patience is a virtue at this point.
Pierre
Hi Tara
I had 1 week off work when the peritoneal cathater was inserted and all training was done after work in centre.This form of treatment was not siutable for me so i switched to hemodialysis. a fistula was inserted and i took another week off ( a fistula usually can’t be used for 6 weeks after inserted ) So a vascath is used for the intrem. All peolple cope and react differntly. the only advice i can give is that he will need you and your family beside him to ride the up’s and downs to listen and to love.
my story will be different to all others, you will be bombarded with advice some god some no so,take what you want and try what you can. The main thing is his condition is managable and 1 way or another he will improve with treatment just give it time. I and others on this site don’t profess to have all the answers and never will, all we can offer is our experience and best wishes.
Hope to talk to you soon
David
Once again, thanks to both of you for sharing with me.
Peirre- It did take a while for my dad to reach where he is now, his Dr told him a little over 10 years ago he needed to start dialysis. He (as well as those who know & love him) was waiting for his miracle, but it hasn’t been given yet (at least not in the way we all prayed!). He had 10 years of life without it, but now it is time to start. It seems as though it will be a tough road, but we’ll get there.
David- Your story sounds like the one I want for my dad (too bad we can’t choose)! It sounds like you were able to make some pretty quick decisions. He is having a hard time with so much to think about right now, and is really experiencing the down part of the up’s and down’s. I live too far away to be with him as much as I would like, so I am trying to educate myself and pass along to him (and my step-mom) what I am learning, as well as physically being there when I can. It is very hard as I am my daddy’s little girl, I just want to pick him up and hold him as if the roles were reversed. I love him so much and it is very hard to see him struggling.
Well, I don’t really have any questions (right now), but if there is more you want to share with me, feel free!
Thanks again for your support!
About waiting for a miracle…
I did that to, never wanting to believe I would ever actually reach the point where I would need dialysis. But you know, when you stop to think about it, maybe the miracle is dialysis.
Pierre
Hi Pierre-
I agree with you. I am so grateful that we didn’t find out too late. It is still very tough for him (and us) to see what good will come of this, but I believe that something good will come. He is still deciding what type of dialysis to do and he will be having his neck cath moved to his chest. Dialysis has not been going very well since his neck cath doesn’t allow it to run very smooth. It is a good night when they can run his pressure at 300 without too many alarms. He isn’t really feeling any better yet and is just overloaded with all of the information that he’s been given. I hope that once his cath is moved he will begin to feel better (if not before).
I visited your website, and I will pass it along to my dad. There is a lot of info there!
Thanks!
TARA
Try asking the doctor about the swirl graft and see what he thinks about it…just hang in there, be a fighter…
I was curious about the Swirlgraft and found a BBC article about it on the Internet (http://news.bbc.co.uk/1/hi/health/3562980.stm). It looks like it’s in trials in the UK so it may be some time before it is available in the U.S. In the meantime, a hemodialysis fistula (which is 100% natural) continues to be the best choice of hemodialysis acess.
In the past I heard that there were people that could not get fistulas because their veins were too small (often diabetics) and I believed it. However, today I know that there are surgeons that have tremendous success in placing fistulas in people, even those that have had a graft. Read about Dr. Vo Nguyen’s success and how he achieved it at:
http://www.ihi.org/IHI/Topics/ESRD/VascularAccess/Literature/BoostingAVFistulaAccessinESRDPatients.htm
Gus & Beth-
Thanks for the information, I will be sure to pass it on to my dad.
At his last dialysis they took him off the machine about 1 1/2 hrs early due to problems. They think he may have a clot and they are going to have him go in on Monday during the day to see if they can clear it, if not he will have to get his cath moved asap. He is scheduled for his surgery consult at the begining of April.
He took a PD class on Wednesday and came away overwhelmed. He had thought that would be the better route for him but didn’t realize all that there was to doing it. Anyway, he is now thinking about HD. He is concerned about the needles. Gus, did it take a while for you to get used to the needles? Doyou use emla cream or a numbing shot first?
Thanks!
TARA
Currently, am not using AV needles anymore(sharp needles) am using the buttonhole needle which is painless, but at first when starting dialysis it was all sharp needles…sometimes painful…the medicine for pain stings a little…after sometime the surface will start losing sensation…for the reason of many needle sticks for a long time. Gradually along the way your father will get use to it but aware that sometimes we may fall into despression and it’s something that can be dealt with by spending time doing things like persoanl projects around the house. Once your father has a good working fistula would be wise to get into using the buttonhole needle. Either your father or you can put in the buttonhole needles. In my case, I put them in myself and my assistant who is my father or anybody around assists me with other harder moments like saline or needing something that’s just too far from machine…keep in mind that starting this kinda life style takes time to adjust but never give up, life is just too precious to give up…you may notice it takes much of your free time and may find not doing much like you had before but once your father adjusts well to this routine you both will be planning and accomodating your schedules for doing more things than when you first started.
Thanks again Gus, your message is encouraging. What exactly is a buttonhole needle? I have seen it mentioned before, but I’m not familar with what it is. Do you know it they are available in-clinic, or just for home use? I think he is thinking about continuing in-clinic for now, it seems easier to let someone else deal with the process and he just shows up, but he’s not yet made his final decision. The home HD seems like it would be tough as my step-mom works during the day and I live about 1 hr 45 mins away so there isn’t really anyone who would be on hand to help him as needed.
TARA
[b]Here, take a look at this article about the buttonhole… http://www.homedialysis.org/v1/types/buttonhole.shtml
Buttonholes can be used in clinics but most don’t for the reason many techs work different shifts and it takes only the same person to insert it. If your father is willingly to insert his own needles then chances are that they may let him do it…am sorry at this first start it’s not feasible of planning to go home with Hemo, it’s just too early. Maybe once your father gains energy and more confidence in the procedure he may want to later down the road. Personally I think when first starting hemodialysis it’s not the best time to start planning to do homehemo…most likely after a year or so…[/b]
Tara,
I have used EMLA cream since my very first tx. No sense in taking a Lidocaine shot when the cream is painless. I was very apprehesive about the needles, but laughed with relief as I didn’t even feel anything when the needles went in the first time and thereafter. The EMLA is very effective. It is a white cream which should be applied about 1 1/2 hrs prior to tx. Just takes a dime sized amount on each site. I tape saran wrap over sites to hold it in. If one can use EMLA cream and find a staff of good stickers, and/or eventually learn to self cannulate, that is the way to go. I was a big needle weenie, so it is very empowereing to know it is possible to overcome the fear of the needles and the procedure can be tolerable.