I went to my doctor the other day and this stuff is getting REAL. I'm being referred to get my fistula, I think they are going to start with mapping out my veins and artery first? I am scared to death at this stage and I have to be strong for my daughter and husband. I have been acting like its no big deal, but boy is it ever so real. I just needed a moment to express my emotions.
I knew it would happen one day, how do I b... - Kidney Dialysis
I knew it would happen one day, how do I be not so strong? I feel like I have to hide my real feeling now.
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verdogo
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Hang on… Often fear of the unknown or not yet experienced is the greater issue.
Do you plan to work toward in home HD? That would do two things:
1. Allow you to fit dialysis around your schedule.
2. Dialyzing daily which is much closer to what our native kidneys do; thus, easier on your heart and likely lead to feeling better.
Also, have you been evaluated for a transplant?
Bottom line? Give yourself some time. Find a few support people with whom you can talk through what you’re feeling.
My dad was on in home HD over 45 years ago. I was one of his dialysis care partners. He viewed dialysis as a life sustaining treatment option. Dialysis is much better today than it was then. He taught me how to live well with CKD, even Stage V renal failure. What a great gift to give his children!
Jayhawker
Thank you for replyingI can not do home dialysis because I have 3 small dogs in the house. My dr did send a referral to the mayo clinic, I'm hoping that means they will take my insurance. You know, I knew this day would come but it just seems so unreal. I thought I would get a little more support at home but my husband hasn't really said anything about what's going on. He use to but that was before it came time. He almost seems to be mad about it. Do you have polycystic kidney disease? You said your father went threw this. I will be the first in my family to do dialysis, my grandfather went threw it for a couple months but I'll be the first between all my aunts, uncles, mother, and my brother. I had one of my kidneys taken out in 2017 and I think that why my numbers dropped so fast. I was at stage 3 when I had my kidney removed.
Thank goodness for support groups...
I’m hoping your husband will be able to wrap his brain around what is happening and be able to be there for you.
No, my situation is actually somewhat strange. I have Type II diabetes which apparently caused my CKD. But my A1C is totally in check without medications. It only took 3 months for me to pull my A1C in check. It has been consistently in the normal range ever since without medication. And yet my kidneys have deteriorated.
In my case, my renal function has been stable and then suddenly plummeted, e.g., normal renal panel data to low Stage IIIB the first time. A modest improvement and then stabilizing in stage IIIA. A second sudden plummet to low Stage IV and a modest rebound to high Stage IV. The third and last sudden plummet was into low Stage V, e.g., GFR of 6. Again no a modest rebound to high Stage V. A1C 100% in check, normal range, consistently throughout all of this.
I plummeted into renal failure the first week of January 2017. I am not yet on dialysis. (I will fo PD when the time comes.) meanwhile, I’ve completed transplant eligibility testing. I was actively waitlisted for a transplant on January 10, 2020. My transplant testing showed normal cardiac functioning. My blood vessels look excellent throughout my body—another oddity for a type II diabetic.
I take very few medications: sodium bicarbonate and a medication for a hyperparathyroid condition that has recently developed. So, my kidneys are doing what they’re doing with minimal medication support.
Meanwhile, last Feb my renal panel showed improvement coming in with a GFR of 19, it was 20 in March snd 21 in April. We’re really not sure why. My data has been bouncing around some through the summer. However, overall it appears to want to run close to GFR 17-18. That’s back into Stage IV.
So, my situation is definitely rather odd. I was convinced each of my three plummets in function were related to or resulting from bouts with severe dehydration. But this has not been confirmed by labs or my doctors. More recently I switched to a nephrologist who removed fluid restrictions for me. Within a few months of drinking more fluids was when we saw the recent improvement in my renal function. So, I don’t know but still suspect I’ve been badly dehydrated …
My dad’s CKD resulted from severe, chronic high blood pressure. I don’t have problems with high blood pressure. Instead I have trouble with low BP—another possible indication of dehydration.
Are you planning to get a transplant?
Jayhawker
Have you considered PD dialysis at home? You only have to take a short time to scoot the dogs out to connect and disconnect.
No I haven't because I thought that if you have animals it's an automatic No. Who do I bring this up to? My kidney dr or the dialysis center? Are you doing dialysis?
I’m on PD. 5.5 yrs. Despite “warnings” from clinic and Renal RN, I never worry about my dog (now deceased) or cat (hangs out on the deck more than inside),PD seems a breeze compared to what I see of in-clinic HD patients. They seem to express excessive tiredness and fatigue just before next treatment (treatments for in-clinic usually equal 3X per week).
My Nephrologist sent me to a Renal Nurse consultant (she works for Fresenius Kidney Care) who went over the different modalities with me. I was 57 yrs old when I discovered I had CKD (prolly Stage 3 or 4. No one ever quantified it). I stayed off the need for dialysis for 3 yrs. Then, I went to Renal Nurse and decided on PD, told the Neph, he agreed, and he set me up with a surgeon for the catheter.
I think PD gives me (especially with a cycler machine to do treatment at night in bed) more freedom and you can travel (when this darn COVID is over) and most of the treatment is done while you sleep. AND, there are no restrictions about having a partner to help (I live alone….very single).
A Neph has to refer you for a catheter (outpatient) insertion surgery in abdomen. The Neph has to believe you are compliant enough and care enough about regiment and treatments to be on PD.
Ask your Neph if PD is an option for you (don’t worry about the pets). Just get them out of your bedroom before attaching and detaching your catheter line. Keep your bedroom as clean of pet hair as you can.
Some people have too much scar tissue in their abdomen to qualify for PD. They will do CT scans of your abdomen. I had a great surgeon for catheter placement.
You can no longer take a bath (only showers) after catheter insertion. Allegedly can go in the ocean. I wouldn’t get in a jacuzzi anyway.
Not to offend anyone, but I think the fistula is unsightly.
I am glad I chose PD. Watch your diet, exercise, take care of yourself. Hopefully, get evaluated for transplant.
I think men are not as supportive because they are hard-wired to “fix” things and your hubby can’t fix this. He will get used to home PD treatments. It will take a commitment on your part, but you will feel better and your family will see that you are being successful and taking care of yourself.
Everyone goes through doubts and mental issues when they first face their new normal, but you keep your chin up (and maybe they’ll follow suit).
My own sister used to be a chaplain in hospitals and talked to families when their loved ones were dying but their organs were viable for transplant. She wanted the family to donate the organs. She used to get frustrated and mad when family members said “No”.
Now, she won’t even get tested to donate to me (after YEARS of offering her kidney). So….family is family.
What do they say? You can pick your nose, but you can’t pick your family!
I will pray for your comfort through this process.
I’d talk with both your nephrologist and the dialysis center about the possibility of a transplant. Either can give you information as well as refer you to a transplant center for evaluation.
I’m not on dialysis yet. Sainted my data is back into Stage IV with eGFR 17-18 I may have another few years before I’ll need dialysis. That’s if I don’t have another severe and sudden plummet in my renal function.
Jayhawker
As regards (CA)PD vs HD: I am an extremely lucky 60 year-old male transplant patient who still thinks he's 20. I have never been on HD, not even a neckline. I was on CA(PD) 30 years ago. Seems like some people these days use a fixed PD machine? That was the exception when I was on peritoneal dialysis. I just used to carry a bag and new lines, so could go anywhere. I just used to put the bag on a shelf or something, so didn't need the drip-stand. They gave me a heater to heat the fluid, but one day it didn't work and I had to put the fluid in anyway, and I realised I didn't need it to be heated, so bang went the inconvenience of carrying a heater! That was 30 years ago, so surely it's at least as convenient now? I had problems initially (bad reaction to Baxter, fine on Fresenius; peritonitis 5 times in 6 months, but sorted when they changed the cannula), and no problem thereafter right the way to transplant. My mom always had dogs and I used to dialyse there when visiting. As regards lifestyle/convenience, I held down a 60 hours plus a week job on CAPD - office and travelling - went abroad on holiday, even ran and exercised. Don't think I could have done that on HD. If I was out all day, I just took my stuff with me - you can always find somewhere to dialyse. I was very happy almost all the time, even though I was very, very tired, and think that was because I was able to keep busy and live a normal life. Only thing I didn't like was I couldn't have a proper bath (theoretically I could, but I didn't want to risk it - if I wanted the luxury of a bath I covered the cannula in a lot of waterproof plasters and part-submerged!). I was able to dialyse in 20 minutes - I was very careful about hygiene, especially after peritonitis (!), but not paranoid: you have to live your life! I'm not sure about the bug resistance these days, but hopefully peritonitis can still be treated? It was a problem for me when I dialysed 30 years ago, as the infection never went fully away even with vancomycin (hence the recurrence), but, as I said, removing and replacing the cannula solved it - I would check all this with the doctor. The others I knew on PD who contracted peritonitis didn't have that recurrence issue, so just mentioning it for completion, and some on this site will be able to comment better than me about the situation these days. On (CA)PD, you can dialyse almost anywhere as long as you clean the area you are using well, and it is amazing how nice/accommodating people are if you explain when you need a space or have a problem (I was even once offered a police escort from Pisa airport to where we were staying on holiday!). You really should talk to women who have been on PD because they might feel differently about it. If you can, never think of your illness until something happens - that has helped me a lot. So, don't worry about an operation till you're on the table etc. and when you're not dialysing, just try to forget about it. Not easy I know, but I take the view that as long as I'm not in pain, I'm happy . One massive final tip for everyone on that pain subject: you should not feel any pain under a local anaesthetic. If you do, stop the doctor and ask for a different anaesthetic. A small percentage of people are not very responsive to lidocaine in particular (many/most doctors don't understand this, but there is recent research confirming the problem; so, if this is you, there is no need to suffer, though you might need to be assertive, which is not always easy given the doctor-patient relationship and the position you will be in when arguing!). I had decades of painful procedures, from the age of four, before I realised I wasn't just a wimp (huge thanks to a wonderful Dutch anaesthetist who was surprised I hadn't been tested for resistance). I have had no operative pain with a local anaesthetic since realising and different/supplemental anaesthetics being used. What I think of your husband is unprintable. My wife has stuck with me through many, many difficult times over the decades, pre and post-transplant. I am so lucky. Good luck to you and everyone on the site. I know many of you are not as lucky as me, and my heart goes out to you all. As you can tell from the 's' in dialyse, I'm English. I have Alport Syndrome.
I was the same. I actually fainted when they were giving me a guided tour of the nearest dialysis clinic. It was a baking hot July day and I wasn't feeling well and on top of that the whole process was overwhelming. In the end I opted for home peritoneal dialysis. I am much happier with it than haemodialysis. I don't know if that is something you have considered. As jayhawker said, the thought of doing dialysis is in the majority of cases much worse than the reality. Hang in there.
Rabbit, thank you for replying. Do the all dialysis centers give you a tour? You must of been really overwhelmed, I'm glad you was able to have a choice of which dialysis you wanted to do. If I could do home dialysis I'd do it in an instant, but I have animals and children in the home. I was thinking that if I were to get a travel trailer and just sleep in it. IDK, but I don't think I have a choice. How do you feel afterwards? Are you exhausted? I read that everyone is different and some people actually feel better afterwards. I feel fine right now but the way the dr said it is that I will start to get sick to my stomach and not be able to eat, and I will start swelling up. I'll have to just take day by day and see how I feel
I have a dog too. I’m training her to stay out of the master bedroom and bathroom on my first floor. That’s where I’ll do the overnight exchanges. I’ll store my supplies in the basement. She never goes to the basement. I have a doggy gate to keep her out of the basement. I keep the door to the master bedroom and bath closed so she doesn’t go in there either.
She used to sleep in bed with me. But now she sleeps in a doggie bed in the living room. Frankly, she doesn’t like machines and strange noises/smells so she won’t want to be in bed with me at night when I start dialysis anyway.
Jayhawker
I don't know about all the dialysis centres. I only went to one and that was the one that was closest to me. I am in UK. It was a pretty grim experience from start to finish. The building was ancient from the 1930's. There was no AC so with the heat generated by the dialysis machine plus it was a really hot day well you can imagine it was baking hot in there. Then when the nurse got the needles out just to show me well that was it.
It is true that you have to keep very clean when doing PD. But as Jayhawker says providing you keep kids and animals out while you are connecting and disconnecting then it is fine. I have got both animals and small kids running about and touch wood have not had a problem so far.
I feel better on dialysis that I did before I started. I was advised to start at 11% but like you I was scared so I kept putting off the operation to have the pipe fitted. Eventually when I did I was down to 7% and my skin was getting a kind of yellow colour and I was feeling pretty rough and very tired. My advice is not to leave it till you are actually feeling sick as that is going to make your recovery harder.
We can tell you’re from the UK by the way you spelled “centres”. Just kidding you!
Personally I prefer the American spelling and also color rather than our colour!
Lol. Part of my ancestry is from the UK, including Wales. Love you guys!! 😘
I felt much, much better post (CAPD) dialysis and wished I had gone on it sooner (I was on dialysis 1991/92). Seems like some people these days use a fixed PD machine? I just used to carry a bag and new lines, so could go anywhere. That was 30 years ago, so surely it's at least as convenient now? As I say above, it used to take me 20 minutes to dialyse, start-to-finish, including unpacking to packing and disposal. Becomes routine very quickly. If you can (and different people are in different positions health-wise), don't let it dominate your life. I carried on working - so CAPD by default, especially given I did a lot of travelling - and I think that was a huge help. Apart from the 20 minutes dialysing I never thought about it and often even when dialysing I didn't, especially if I was trying to sort something out at work! I lived a 99% normal life.
I do not feel tired. Maybe first half hour and with too much exertion. I’m not running any marathons. They start you on manual PD to teach you, so I set up a recliner in a separate room with the IV pole. You have to do that several times a day. But, after a couple weeks, they send you a machine (cycler) and then the Renal Nurse teaches you how to use that. CHECK YouTube! Lots of “How To’s” there! See if you could do that! I have toured Fresenius AND DaVita in Metropolitan Atlanta. I much preferred how Fresenius works!
I’ve been single so long (divorced at 22), I would throw my husband out of my bedroom before my pets! Lol! (Humor is good!).
Remember, you can ALWAYS change your mind and go to in-clinic HD with a fistula if PD is not for you! I would rather start with PD and a catheter than a fistula and HD. Just my opinion.
I gagged when I went into the HD room with patients on the tour. The smell turned my stomach. I’m glad you’re happy with PD too!
Yes absolutely and everyone looked so miserable. It wasn't like I had read about with some people saying it was a social and friendly environment. It was not like that at all in my experience. I have always been an independent person and doing home PD gives me the opportunity to be fully responsible for my own treatment.
Hi. I completely get it. I felt I'd been punched in the stomach when the reality hit me. I'd known forever that I would end up on dialysis, having a defective gene which effected most of my family on my father's side.Despite this, it was still a shock to be told they were going to create a fistula.
I coped by rethinking the situation. I love my life and my family, I wanted to be here and not miss anything! I knew that dialysis would improve my quality of life, I'd seen both my Dad and sister improve. I'd gradually become quite unwell, nauseous, itchy, exhausted, no appetite or energy. Just after a few sessions of Haemodialysis, I started to feel better. Within 3 months I had gained weight, stopped feeling sick, stopped itching was sleeping better and managing to do some light exercise.
Starting HD isn't always easy and it can take a while for you and your body to settle into it, but trust your dialysis health care professionals, take their advice on fluid intake, diet, take your meds and you will feel the benefit. I treat my three sessions a week as my part time job! I have my life back and I am so grateful.
Be gentle with yourself and use this forum if you struggle, there are lots of lovely supportive folk on here who understand. Very best wishes.
Julie.
I'd like to second your remarks - I, too, have PKD and had many years to adjust to the possibility of going on dialysis. I'd just like to add that the vein and artery mapping is completely painless, it's an ultrasound wand being directed along your arm to find the best vein to be attached to the best artery for the best blood circulation. I actually received my fistula a year before I needed to use it and will just give you the advice I wish I had gotten then - be sure to exercise that arm daily by squeezing a rubber ball to strengthen your fistula and to make it grow. Then it will hopefully be ready when you need it. Your surgeon can tell you more when you meet with him/her. I grew to love and appreciate my dialysis techs and nurses, who had my back every step of the way. It's ok to feel your feelings, but it's even better to talk about them to people you trust!
Hi and thank you for replying. I have lost 10 lbs in 2 months and didn't know why and I am always exhausted but I thought it was just from taking care of my family. I have 3 kids, 1 is mine and the other 2 are my great nephews. I guess I act like nothings bothering me and it's just another day, but it's not just another day. I will take your advice. I hope I will have the attitude you have towards this. I need to for my family. I had a ruptured brain aneurysm back in 2015 and was in the hospital for near 2 months. Although I was dependent on my husband for everything, I saw my family go into melt down. I need to be strong as you, but shouldn't I have my own melt down? I mean I'm scared but I haven't shed a tear. I do sure hope I start feeling like you soon. I started riding a bike today and I plan on riding a little everyday in hopes I can get a bit more healthier before dialysis starts.
Talk to a Licensed Clinical Social Worker (LCSW) or LMSW, Psychologist….whatever mental health person you prefer (pastor…whatever). Right now (until Dec 2021), mental health appointments are approved for no co-pays and telehealth (according to Medicare, at least). Find someone that may know about kidney disease or at least sudden chronic illness. It will help with your need (and everyone’s) to have a “meltdown” and get your fears and tears heard! Kids and husbands cannot give you that support very well (esp. at first diagnosis).I lost 60 lbs., throwing up every morning, no appetite and about fainted at work.
Had a blood test.
A sad, angry female Internist not worth her weight in salt (educated at Emory University … near the CDC), didn’t even recognize that I was in CKD, Stage 3 or 4. NO family history of kidney disease….none. She prescribed high blood pressure meds & told me to come back in 4 months. Some doctors….grrrr.
Of course you can have a meltdown! Sometimes it just gets too much and it's OK to have a good sob. It's all still very raw and you have a lot to process. You have been through so much. You don't have to be 'strong' all the time you just have to give yourself some time to adjust. Ask for help, don't suffer alone. Talk to your family, your healthcare team, anyone who will listen! And don't forget, once you start to feel better you will feel better equipped to deal with it all. Take it slowly and don't try to be superwoman!Best wishes
Julie
Don’t worry, it’s no big deal.
I had animals when i did pd.. no problems, do not let that stop you. I’ve done pd twice, but in the end opted for hemo in center. Takes less time to deal with, living by my self and dealing with supplies (especially if you have to deal with steps, location of bathroom, etc.) was too much, too heavy, too many empty boxes, too many machine alarms keeping me up, having so much fluid in my abdomen i felt like i ate 3 turkey dinners all night.. pd is just way too time consuming for me. Hemo in center, I’m in and I’m out, except for all the complications that go with dialysis, any modality you choose.
How hard is it to change from HD to PD? And how was your first few months of dialysis? I mean the very first time that you did dialysis? I have 101 questions... is the PD more than 4 hours? I mean, can't it be done during the day time? In front of the TV or a good book? I think I'm going to be looking at a rude awakening when I start, lol. Do you not have kids for support? I check this site every few days, so know its fine to start up a conversation with me, I'll be here eventually. Perhaps we could even exchange emails? Take care of yourself. Jin
Well, to give a 30,000 ft view 1st. HD in center they do everything. PD at home you do everything. You will do LOTS and LOTS of training for PD. The 1st thing they train you to do is manual exchanges, then training on the machine. PD manual you can do during the day. You will exchange 4-5 times during the day and carry around the fluid in your belly all day. PD at night on the machine is all night typically around 8-8.5 hours. You are tethered to the machine although I used a 50 ft. tubing system to at least get around some. Depending on the layout of your house that will/will not work. My bedroom was right next to my kitchen (one floor) and I could least get my snacks but I still had to disconnect from the machine to use the bathroom then re-connect. my e-mail is checkman 4 9's g.
A couple things I recommend you do (besides asking questions and searching on this forum) is do your own research. When I found out I had CKD, I was on the internet constantly looking at different organizations like the AAKP and Renal Support Network (RSN). Renal Support Network was founded by a woman that had been on dialysis since a young girl. When I read that, I felt such a blessing that I had not had to deal with this my whole life. Research, research, research.
I also think it may be helpful for you to sit down with your family and say "I am going through a journey right now where I need everyone's support. I love all of you and I hope that we can work together as a family and help each other to take on more responsibility so that I can deal with some of the challenges ahead of me."
I made an acct on Davita.com (even before dialysis) and started researching diet and recipes. You can sign up for a Davita Education class (in person - prior to dialysis) and they were helpful, but I learned I did not feel as comfortable with Davita as Fresenius.
Your Neph is VERY important too. I had a great relationship with my Neph and he isvextremely knowledgeable. Check Healthgrades.com. It is a website created for patients to review physician performances and has reviews. If your Neph isn't helping to answer your questions, find one that will!! Like anything, there are good doctors and bad doctors!
Research! Keep yourself informed!
I had trouble ASKING FOR HELP at first. I am so independent that it was difficult to change my mindset. It is not a sign of weakness to ask for help -- from your family and from outside sources.
I haven't read thru the posts how old you are and how old your kids are. It may be time to let go of some of the "Super Mom" mentally and really help your children to become independent! It is a good to teach children to do for themselves.
BTW, it is difficult at times (as one person expressed) to deal with all the boxes of supplies; heavy solution bags; using drain lines to the bathroom drain; devoting hours to disposing of used cycler equipment, etc. Like I said -- research. Your house (bathroom location, rooms, steps, etc.) may be different than the person who found it too difficult. Let me say: you get used to it and it becomes second nature.
I have not gone from PD to HD, but I doubt it is a hard transition. PD is drawing toxins from your system (that your kidneys would have done) thru a dextrose solution in your peritoneum. HD uses blood cleansing thru a fistula in your arm.
There are many ppl who have done Home HD. They used to say single people could not do home HD if they live alone. They have changed that rule.
I understand the no support thing, not one single family member has helped me. Opps, I’m lying…The most i have ever got was a ride home after a hospital stay once in a while. I even had to hire people to take care of my animals…my sister even told me she would happily donate a kidney, she was even a match then re-negged with no explanation given. None of my “dear” friends ever even spoke to me about donating nor any other family member… So, again, i understand the no support thing.
I'm sorry you have had no support, I'm hoping that maybe after everything soaks in they might be a little more comfortable with what I'm going to be doing. I had a friend of the family that has said she'll donate me a kidney but now that it came closer to time, I don't hear from her no more. I can understand that she is probably scared once it came into play. But I wish she would just come out and say it. I've known her for over 40 yrs, you'd think she'd be comfortable enough to tell me. I got the call yesterday that next Thursday I go for the mapping.
I think my 12 yr old daughter is more scared than I am, she don't want me to tell her ANYTHING about my situation. I'm trying to go slow with her, she may be in my situation one day herself. I have polycystic kidney disease and she has a 50% chance of having it herself, I've explained this to her over the last few yrs. But I always go slow with telling her things, but she needs to know.
I want to thank you for replying and letting me know I'm not alone in this situation. Did any of your friends or family eventually start helping you? Have you been able to find any type of support?
I believe in the power of prayer and I will keep you in my prayers...
Thank You again, Jin
Well, it's been since 2010, no support so far except for a phone friend in NY. He has MS and is in a wheel chair 24 x 7. So we definitely do some commiserating. I still do not understand all the fear behind donating a kidney, super simple procedure, and barely any recovery time (typically 2 days), can't lift anything heavy for 2 days typically. WOW that must be a tough one! Anyone healthy will do just fine on one kidney. I would do it in a heart beat, have always been an organ donor on my license.
Yes, I agree. That is why I am so confused by my sister's refusal to get tested and donate ADTER YEARS OF SAYING SHE WOULD. It hurts so bad I cannot even talk to her. I pray daily for the grace to forgive her.
My sister is now 68 yrs old. She made the excuse that donating a kidney would not be "fair" to her relatively new, disabled husband. He told her "don't use me as an excuse". She then implied that the surgery and recovery would be too difficult. She lives 2.5 hrs from me. She won't even help me to get evaluated at Jax, FL Mayo clinic.
I have one transplant support person. She's a gem. She helped me during the peak of Covid to get groceries, etc. I met her in church 5 yrs ago. She is a kind and helpful person.
BTW: the NKF has a Peer Support Program where they find some who has been thru this journey to talk with you via phone (or maybe Zoom?).
Reach out! Find resources! Call your friend of 40 yrs and let her know that your friendship is not dependent on her donating a kidney. She may be SCARED and feeling guilty for not donating. Try not to take it personally! Let her know you miss her friendship and simply want someone to talk to.
It is VERY common to lose friends and associates (do you work?) during this journey. Please try not to take it personally. Some people simply cannot handle sickness and feel helpless. You also have to reach out and not isolate from your friends and co-workers (church community...whatever).
That's exactly what I've been doing lately. I feel like I'm just taking up space, if that makes sense. I think I'm letting myself get in a little bit of a stupor. I've done this at different times of my life before and I manage to get myself out of it. But I'd like to say Thank You for your reply...
How old are you? Finding some resources and help are for seniors (over 50 yrs old).
12 yr old kids live YouTube and the internet. Find a good YouTube video you can watch together about PD or HD.
Sign up on "rsnhope.org" with an account. They send a magazine and have good resources. Type "help for kidney disease patients" in Google. There are SO many things you could be doing for yourself if you will concentrate on going forward and ACCEPT your new reality. Be a good example for your children that self-education is the way a person can go through life's challenges.
Research your closest Transplant Hospital. Many if them have Support groups. I attend Saturday Zoom meeting help by my Transplant Hospital's Social Worker. They allow anyone to attend: CKD, Dialysis and Transplant people attend.
I'm 54, I had my first child at 42. She was our big surprise, she was a preemie. I'm going to try and see if I can find some support here. I was told that I would get a social worker once I start dialysis, but I need something now, lol. Thank You and I will go see what kind of help I can get...
Do you have Medicare? Health Insurance? Many health ins policies have benefits for Mental Health. Most Social Workers, psychologists, etc. are using telehealth.The social workers at the clinics don’t do counseling. They pretty much help patients navigate and help find resources.
Good luck,
There's a book available on Kindle called "Help, I need Dialysis" It's pretty user friendly and an easy read. If/when the time comes I need dialysis I plan on PD using the machine at night as I like my job and want to continue working. I'm at 22 eGFR and if it gets below 20 I plan on getting a referral to the transplant center to get on the list. I live on a farm and other than my husband there is no one nearby but I'm used to doing things by myself. I've shared the transplant document with my husband so he at least knows what the entails and I'll share whatever dialysis info I get.
I am in same boat as you. I was there at the surgeon for first meeting last week. They would plan the surgery soon. Not sure how far I am from the DAY. I am at gfr 9.5. I am 51 year old male having 14 year old and wife. It is indeed emotional moment and it’s ok to feel concerned. I am not lucky to have found living donor yet, I was listed in august 2021. No friends or relative came forward. I feel that this gift of life can never be asked but it needs to come from loved ones (so called). At the end it’s life and it teaches us everyday. I am strong at this moment and not sure what future holds. But I will not die until I am dead, I will keep the positive side of me, alive. Please do not feel stressed or dishearten. I thank god for giving me the problem which has solution than many other. Keeping you all in my prayers.
OMG you are me. I go to the Nephrologist today to find out which surgeon. He wants me to get the fistula. I'm a single mom with 2 older daughters. I've been acting like no big deal for many years. I have put it off for as long as I could. He keeps saying it takes 12 weeks before you can use it, we want to be prepared. I will NEVER be prepared to go on dialysis. I watched my mom for yrs do it. You know it's coming but you hope it never does. 
good luck to you!
Checking back in.
I had to get the surgery for what I thought was going to be a fistula and woke up in recovery with a graph implant because my veins were too small for a natural fistula. I was very upset to see the implant in my upper arm, it's hideous big in comparison to my skinny arm. I hate it, but I am getting used to it.
In the midst of that, one of my daughters was just diagnosed with PKD.
It's kinda hard to hide everything that's going on from her, she still lives with me. I know it scares the hell out of her. Things will have come a long way in the 35 yrs or so that'll go by before she'll be in my shoes. I keep telling her she will have so many option that aren't quite available yet for me.
I'm still not on dialysis, hanging tight with my bloodwork. The dr called with my results today. I'll make it through the holidays, no problem. 
Chin up and hang in there!!
Happy Holidays and best of luck to everyone in the New Year!
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