l want to know about side effects of Dialysis?

[AlanKx5]

What are the side effects

[Jayhawker]

AlanKx5,

Are you thinking about PD dialysis or HD dialysis? If HD, are you planning to complete HD daily in your home with a care partner or 3x a week in a dialysis center?

Jayhawker

[Darlenia]

Hello Alan! That's a very broad question. There are several types of dialysis avenues available in most developed nations. They broadly fall into two categories - hemodialysis (HD) and peritoneal dialysis (PD). HD, as the word implies, deals directly with your blood whereas PD cleans your body of impurities via dialysate solutions dwelling in your abdomen for a period of time. Within both categories are various approaches - hemodialysis (in-facility, at-home, nocturnal, etc.) and peritoneal dialysis (manual, machine, or combo).

My husband has been on in-facility HD where he had 4 hour sessions 3 times each time. This one is very common and is generally recognized as the most difficult on the body because it rapidly cleanses the body so weakness, headache, cramping, blood pressure fluctuations, etc. may occur. But it also has the benefit of nurses overseeing everything, so no equipment and supplies in your home, etc. People bring in their laptops, watch movies, read, etc. during the sessions - as the medical aspect of it is all done for them. (Some move to at-home HD where more frequent dialysis sessions can reduce the side effects. I understand one may need a support person to help in that regard.) In my husband's situation, he felt fine after a few hours of walking out of the facility. Some at the facility were business and tradespeople obviously still employed, while others were quite ill. In my opinion, it's hard to tell who will suffer more side effects - it's quite dependent on the person, their medical condition, etc. Some are back on their feet quickly, others time some time.

My husband later switched to PD which he is on now. In his case, he prefers to use a machine (a cycler) which cleanses his body overnight, every night, while he sleeps. (He does everything on his own, no support person needed.) It frees up his day. Others prefer to simply manually infuse/drain the solution periodically during the day. No matter the choice, manual or machine or combo, it's gentler than the in-facility, 4-hour HD sessions. There aren't many side effects as such, at one time he had a bit of acid reflux - he's not a big guy - so he moved to a smaller volume of solution. My husband actually has some control of the solutions he can use - stronger or weaker - as well. But, as mentioned above there are other forms of HD which also can be gentler. In both PD and in-home HD, one will receive training and supplies. In the case of PD, one needs storage space - we received 61 boxes at our home in the initial shipment. Generally, one should figure on around 50 or so. There is also a considerable amount of supplies for in-home HD. Traveling is possible for either PD or HD users.

The deciding factor for us was the transplant considerations. Our kidney transplant center made it clear to us that they preferred patients to be on PD. Apparently HD, which works directly with blood and your blood vessels, is a bit harsher on the cardiac system. PD, which is a form of reverse osmosis pulling out toxins, no blood is involved at all, and is gentler in that regard. So, that made the decision very easy for us.

I'd like to add that you're wise in settling the matter of your preference now. I urge you to talk to your nephrologist, to visit facilities and staff that handle dialysis patients in your country, etc. Check out the entire picture. My husband was in denial so he wound up hospitalized on an emergency basis. When that happens, one is automatically placed on HD with a temporary catheter. When you make an informed choice - placing a permanent port of your choice and going immediately to your preferred choice of dialysis at the outset - avoids the lengthy hospital stays, the emergency dialysis sessions, the ups and downs of temporary caths that often then fail, and more. My husband was hospitalized this past June - during a Covid lockdown. I couldn't see him, I couldn't even get his cell phone charger to him for a long time. There he was, hospitalized for several days, with nothing on hand of his own but his street clothes. If you're in control, the transition is generally much smoother and mentally easier. This said, I would like to note that these are our experiences only; I'm sure others will chime in and present their views as well. Sending you encouragement for good decision-making.

[felizesperar in reply to Darlenia]

Darlenia, I have been on this site for awhile now, and I hop on and try to respond as I can -I notice that you have always provided valuable insights, albeit your experiences only, but I have to say getting your information has really helped me confirm our experiences! My husband has been on both HD in-center and at home (in-center now) and after reading your response here, I am going to see if it is at all possible to move him to PD- I know we (he - but really we!) were originally automatically placed on HD as his second kidney transplant had failed after 18 years (a gift from his sister - apparently she had man-sized kidneys) which was much longer than the 14 years we were told was the average life-span of a transplant (yes there is a life-span- which no one ever told us originally!) My husband has MANY other health challenges:

1. Diabetic since age 6 (he is now 62 - and they said he wouldn't live past his 20's - how medical science has improved!!)

2, BKD- below the knee amputee (yes due to diabetes side-effects) on the right

3. Cervical Stenosis in his neck - which means his bones 'pinch' together and limit spinal fluid from properly moving around - causes his hands to tingle and makes it difficult to manipulate things and it does similar things in his one good leg, so despite having an artificial leg, he can no longer walk, so is in a wheelchair full time now- thank goodness he can still bear enough weight to transfer to the toilet/bed, etc.

4. Slow digestion - a side effect of diabetes as well, which makes figuring out his dialysis diet even more challenging

5. There are more challenges, but you get the picture - he has a lot going on.

For these reasons we chose In-center dialysis to ensure a nurse sees him every time, and he sees the doctor at least once per week when he visits the clinic.

BUT with all that said- my husband most definitely has hardening of his arteries which may make the HD more and more problematic, so we will have to see if the PD is an option

Darlenia- thank you for always providing valuable information in a positive way, while still telling folks the way it really is. Being a caregiver as you are, I also understand what you are going through. I will keep you both in my thoughts! Thank you!

AlanKx5 - see below for my answer on side effects for the two dialysis types we have experience

[Darlenia in reply to felizesperar]

Much respect to you for hanging in there as a caregiver. The love and concern you have for your hubby (as I have for mine) is clear. Your dear hubby has a lot going on with his health, whereas my husband, also a diabetic, has fewer issues. He has recently overcome POUR (postoperative urinary retention) which occurred with the peritoneal catheter insertion operation and so remains in good graces with the transplant center at age 71. POUR can occur because some forms of anesthesia, as well as the location of the surgery, can disrupt the signaling between the bladder and brain. I was surprised that it's pretty common, actually. It's something to be mindful about when undergoing any type of abdominal surgery, particularly later in life, whether you're a man or a woman. Thankfully, that's behind us now. With your husband's situation, my prayers are that you and your team will find the right solutions that can make both of you content. I follow a man, with a beautiful soul, on social media whose wife is on PD. She has Alzheimer's so he does everything for her from A to Z - bathing her, feeding her, setting up her nightly medical care, etc. He refuses to have her institutionalized. Professes that will never happen. The love they have is so inspirational. Could I do that in that situation? I honestly don't know. Caregiving is so hard, eventually the decisions fall to us. So many moving pieces to consider. By all means, asking questions is good! There is no charge, no fee, to do so - it's free! It will surely establish direction. Sending you tight hugs! May the outcome give you both peace.

[felizesperar in reply to Darlenia]

Thanks for the hugs! And I too am not sure I can do everything- I am trying to workout and get stronger, so it might be an option if it comes to that.

[Darlenia]

I'm sad to hear about your family. Agree with you that we must all be vigilant and insist on great medical care. With dialysis, some can't use in-home therapies for a variety of reasons: physical reasons, medical conditions, behavioral issues, etc. The doctors look carefully at their patients and then they (not us) order the therapy they feel is right for them. But it's always a good idea to let preferences be known. Advocating for oneself and our loved ones is good! Truly, the more one can do for oneself, the better the outcome.

[felizesperar]

Hi AlanKx5, as I noted above in my reply to Darlenia, my husband has MANY health challenges, so please keep that in mind when you read this reply, as you may not experience the same results if you are young and healthy other than the need for dialysis.

As others have mentioned, you see all kinds of folks in the clinic, from young and otherwise healthy to those being brought in on stretchers who are very ill. It is certainly a mixed bag.

My husband has been on HD since his second kidney transplant failed several years ago. He was lucky to have not been on dialysis prior to his original cadaver transplant (rejected after a year). His second transplant was from his lovely sister who passed from cancer a few years ago. The second transplant lasted 18 years!

Here are the side-effects we noticed the most:

This is all just from HD- we don't know about PD

for in-center HD:

1. Your time is restricted, Mon-Wed-Fri or Tue-Thur-Sat - around 4 hours each time, plus travel time and you cannot miss your appointments (my husband was ill and missed his Mon appt - he ended up in the hospital - remember - he has a lot of other stuff going on! )

2. Vacations: you are totally at the mercy of the treatment centers located where you are traveling - and they cannot tell you typically till the week before your vacation

3. From the actual procedure

- muscle cramps if they take off too much liquid

- weakness/tiredness

-bloating if they don't take enough liquid off - or if you take in too much liquid

- your blood pressure can go very low (my husband takes medicine to keep his pressure up during the procedure)

-Infection of the site - which my husband is experiencing right now - on our way to get a rapid covid test to possibly move his port - wish us luck!

(This is actually more simple for my husband than others as he has a central line that they use for the dialysis. This is only because he cannot tolerate the fistula or graft, his veins and arteries are very compromised. However, the benefit is he does not get 'stuck' each time - I am sure others can chime in on that.)

3. Special Diet:

- Consume 100 grams of protein every day, and avoid phosphorus and potassium.

-Extremely limited liquid intake - any liquid - includes soups, beverages, fruits with high water content, etc

-there is more but will be specific for you so I won't add more here

(Dialysis doesn't do exactly everything your kidneys do. It cannot take phosphorus out of your body, so if it builds up in your body, it calcifies your arteries over time, so you have to compensate by taking phosphorus binders (ether large pills or chewable tablets) they bind to the phosphorus and take it out of your system. )

4. Difficulty sleeping

5. Exhausted all the time! lots of sleep needed but see #4 above

6. You no longer urinate if your kidneys are not working at all (many others do not have this issue until they are on dialysis for a long time)

At Home HD: please keep in mind we changed to in-center due to my husband's more delicate condition:

1. some of the above- but a more free schedule - you can take the HD machine on vaca with you - but we never tried that

2. Someone has to manage large deliveries and heavy boxes - you get 50 boxes at first and they just keep coming - I had to create a spreadsheet to properly track everything, as well as organize the parts, and if you are missing something- it's a problem.

3. You most likely will burden a family member with handling all this- including preparing the solution the night before - someone needs to be with you during the process - so still time restricted for you AND someone else (unless they changed this - maybe others can chime in)

4. My husband's experienced extreme cold during the process - he could not tolerate it - not sure what was the problem

5. You are not seen by a nurse or doctor - only when they visit perhaps monthly.

With all that said- HD keeps you alive while you wait for a kidney! So do it if you have to!

If you are thinking of doing dialysis instead of asking a family member to donate a kidney - ASK THEM! You will be surprised who will step up and say yes!

HD does keep you alive, but it is much better to have a working kidney.

Here is a link to the Mayo Clinic site with a lot of good information:

mayoclinic.org/tests-proced...