Pre Dialysis and scared!!: Hi! I was... - Kidney Disease

Kidney Disease
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Pre Dialysis and scared!!

Nikki41775
Nikki41775
93 Replies

Hi! I was diagnosed with Kidney Disease in 2008 and just recently progressed to End Stage Renal Disease. I am pre dialysis but I think that will be changing soon. I'm scared of what the future holds for me and I wanted to join this group to talk to other people who are going through the same things. I'm so scared of the unknown...especially dialysis. I am hoping to be able to do PD dialysis when the time comes because I have a very demanding job that I need to keep. I have an extremely supportive husband but I cant expect him to understand completely since he isn't going though this. I'm also mad...I'm mad because I had a nephrologist that I was seeing for many years and she had me diagnosed at a much lower stage than I really am. I recently found a great nephrologist but I think that it is too late and the damage is already done. It is gotten to the point where my illness is starting to impact my career and I just need help :(

Thanks for listening!!

93 Replies
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Mr_Kidney

Hi and welcome,

I can't address your exact situation as I'm not yet close to dialysis. However, I can address one of your comments. It is never too late to find a caring and supportive nephrologist. Staying with the same one after you feel they bungled your treatment previously will only be detrimental to your mental health. Change now. Look at the side effects of every type of dialysis and how it will affect you with your current employment. An informed choice is the one you select after doing all due diligence and research. Not knowing your work or work schedule I would suggest that in that decision-making process you speak privately to your HR department and your supervisor(s) about your needs with each method you seriously consider and then make your final choice. Have you informed your other physicians about your status and gotten their input? Keeping all members of your care team informed (including your husband and other significant family members) is very critical at this point.

Whatever you decide, this site has lots of knowledgeable people who have been where you are and will share their stories with you. Best of luck.

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Nikki41775

Hi! I changed my nephrologist a few months ago. It was probably the best thing I could have done. I've spoken to my employer at great lengths about my situation. They are supportive but for how long...who knows! I already know what route I want to take for dialysis. I am hoping to do PD since I have a very overwhelming and busy job that I need to keep.

I'm really happy that I found this site. I've been looking for a support group but my transplant coordinator says that there really aren't many for people who are pre dialysis so I am super happy about this group!

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Mr_Kidney

One other thing to check is what your rights are regarding continued employment under the Americans with Disabilities Act. Your employer doesn't always get to dictate terms to the employee, especially an employee who know their rights. Hang in there.

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Nikki41775

Thanks! I will!!

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steve680
steve680
in reply to Mr_Kidney

I too have just recently became stage 5 so I can relate to what you're saying. My GFR is only 14 and am looking to stay off dialysis for as long as possible. Unfortunately my old nephrologist retired and I got stuck with a bad replacement and am trying to find a new one. I think it's important to find a doctor you communicate well with, even if they can't always tell you what you want to hear. The doctor I'm seeing now is extremely negative and wants me to start dialysis now even though I'm not experiencing that many symptoms - I'm currently only slightly anemic, and a little bit itchy sometimes (I use moisturizing lotion which helps) but otherwise feel good.

Since you already spoke to your HR about it, it's a moot point, but at my last job I was "laid off" about four weeks after I informed I had a medical condition (CKD) that required working from home once a month due to all my doctor's appointment and lab tests. I was only stage 3 at the time and was seeing a nephrologist, cardiologist and a primary care physician. I even got a note from one of my doctor's which confirmed I had a medical condition that required working from home once a month. I felt like they cared and that I trusted them to do the right thing. Yet, four weeks later I got laid off when only four other people got laid off (???). I had long-term medical insurance but had not yet started dialysis. I'm guessing that they didn't want to have to make "accommodations" for me per the ADA and/or felt my job performance would gradually go downhill. I was told my job was being eliminated as they had to cut costs. I spoked to a labor lawyer later as I was thinking of suing them, but unfortunately they were very careful legally in terms of the language they used when they laid me off. I also looked at suing them for age discrimination (I'm over 50), but again, they have corporate lawyers and HR people to advise them on how to avoid lawsuits. I live in California and it's extremely easy to fire or lay off an employee, with or without cause.

In my new job I work mainly from home and it's not an issue (I'm remote anyways), and this helps as I need to sometimes take a nap during the day (I'm mildly anemic). However, to be on the safe side, I haven't spoke to anyone with HR about my medical condition. Maybe I'm a bit cynical after all that has happened in my career, but I believe HR's main purpose is to avoid lawsuits; they don't really care about the individual. At least, it isn't their priority; their priority is to protect the corporation. If and when it becomes medically necessary to start dialysis, I would probably go on long-term medical coverage instead of work if I wind up doing hemodialysis. I will walk in to HR when the time comes with all my "ducks in a row" and inform them that I need to go on dialysis and am not able to work full-time, and have all the necessary paperwork from my doctors.

ESRD is considered a disability per the ADA, and the employer needs to either allow you continue to work if that's what you desire or go on long-term disability if necessary. I have long-term disability insurance with my current employer, but will only make 70% of my current salary on LTD. The ADA requires most employers to make "reasonable accommodations" to remove obstacles to continued employment. ESRD qualifies as a disability under the ADA. This law is in effect for businesses that employ more than 15 people

It's also possible if you're too tired or "wiped out" to work as a result of dialysis, then you can go onto LTD if you have that type of insurance. But you can use the ADA to keep your job even if you do have to start dialysis. I think the ADA's main purpose to keep people with disease in the labor force, but as I mentioned above, it's possible for the employer to find loopholes - they can fire a person due to "business reasons", as opposed to job performance or the reasons.

In the US, ESRD patients may also be eligible for Social Security Disability, even if you're not yet 62. You just need to have CKD AND require dialysis to quality for Social Security benefits.

I hope things work out well you. Best Regards.

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rascal01
rascal01
in reply to steve680

Very sad, You must not assume that your employeris going to accept your condition, no matter how long or how good your relationship has been!! They are not walking in your shoes.

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Nikki41775
Nikki41775
in reply to steve680

My employer is making accommodations for me right now and they seem more than willing to work with me and my illness but I have to wonder how long it will continue.

I love my new nephrologist. He actually takes the time to call me when I have lab results. I never had a doctor do that for me before. My old doctor's office would only call me if there were changes. They used to tell me "no news is good news".

I am totally expecting to start dialysis soon. I am noticing changes in my body that I've never had before. I am hoping to be a candidate for PD dialysis so it doesn't interfere with my job...which I need to keep due to financial reasons.

It is crazy to me how quickly things change. My old doctor had me diagnosed at a stage 3 but I knew deep down that she was wrong. Imagine my surprise when my new nephrologist tells me that I am stage 5 and I will probably need dialysis by the end of the year.

It is very encouraging to me to read the posts in this group. I have a very supportive husband but it helps me tremendously to see that other people understand what I am going through or are going through the same thing I currently am.

Best regards to you as well!

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Bet117
Bet117NKF Ambassador
in reply to Mr_Kidney

Well communicated, Mr. _ Kidney..

Agreed!

The important thing is to go forward.

It is very hard to change doctors, but often necessary. Having your care team informed and on the same page will only be to your betterment. Invoking family and friends for support is critical; remember, they may not be in your shoes, but they do love you- let them!

The folks on this site are wonderful..reach out and I guarantee that someone will always reach back!

Stay strong..be positive!

B..

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Margie5967

I am so sorry that you are having problems.

I am CKD 3.

Creatine 1.3

GFR 53.

My PCP believes that NSAIDS are the cause of my CKD.

It’s easy to tell someone not to worry. Trust me, I have my days. But I have hypertension and stress is bad for our kidneys.

Can you tell us a little about your medical diagnosis. What was your GFR at the time of diagnosis? Do you have other medical concerns?

Did they have you on a renal diet?

This is a large forum and I am sure there are several other people who have gone through this.

I have seen two different nephrologists and both were not concerned because of my level.

We have all been there.

My PCP is great and has been more proactive in treating me.

Do you mind sharing?

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Nikki41775

Hi Margie5967

I don't mind sharing. That's why I joined this group. I need people to talk to. I was diagnosed back in 2008. At the time of diagnosis, I was a stage 2. I don't remember what my GFR was at that time. At this point in time, as of my last round of blood work, I've gone over to Stage 5 with a creatinine level of 3.5 I think. My nephrologist is trying to get me to stop worrying about numbers and to focus on trends but I cant help it. I work with numbers for a living so to tell me not to focus on numbers makes me laugh. My PCP thinks that the cause of my CKD/ESRD is too much Aleve and Advil and uncontrolled high blood pressure. On top of my kidney issues, I was diagnosed with Macular degeneration back in January so my life has become very overwhelming as of late!

I'm not on dialysis yet but I really feel like that will be changing soon. I have a doctor appointment at the end of this month and I fully expect him to tell me that I have to have the operation to have the access port put in.

I'm really scared about what the future holds. I'm scared of dialysis. I'm scared of always feeling crappy. I just want my old life back...pre CKD/ESRD.

Thanks for listening! I really appreciate it!!

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Margie5967

Having CKD is challenging.

It’s hard not to worry. I totally understand.

Be encouraged.

Please let me know the outcome.

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Nikki41775

Thanks!! I will

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Mr_Kidney

About your numbers. I've come to learn that the numbers as they relate to trends is not that hard to work with and it has lowered my anxiety about where they are going. What you might consider doing since you work with numbers is to set up a spreadsheet listing all of your lab tests. I then post all of my lab values under the month and doctor who ordered them. If something is too high I highlight it in red and if too low I highlight it in a softer red. If they are in the normal range I leave them alone. This makes it easy to see a trend and if its something that can be adjusted by diet/exercise then I make the change. If it's medication-related I usually get a phone call from the physician's office informing me and alerting me to increase or decrease medications.

This doesn't happen automatically. I've "trained" the office staff there with the doctor's approval to notify me, usually through the patient portal, of any issues and changes to be made. They know that if they don't they'll get a phone call, so this just eliminates that and in the long-term saves time and frustration.

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Nikki41775

I like that idea! Thanks for the tip!

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Ladybug_05

Hello! I've been doing PD for 10.5 months now and went into kidney failure Nov. 2017. I needed a chest stint for hemodialysis for the first two months before switching to PD full time (which was awful btw, do not recommend it). I was born with my kidney disease, so having to go through a process that had basically loomed at the back of my mind was terrifying. There's a grieving process that beeds to take place, and leaning on your support system is a need; even if you want to withdraw. There were plenty of nights where my boyfriend would get a call from me hyperventilating and crying, and he would show up with my favorite snacks and just hold me all night while I rambled about nothing and watched movies that he had no interest in to make me feel better. I went from a full time, independent college student who lived 2 hours away on a college campus and worked, to needing help with literally everything at home in a matter of weeks. It's scary being so helpless and needing to rely on so many people for basic things (i.e, dressing, showers, walking places, cooking...you get it), and my boyfriend just kept telling me that things would get better and would make a point to say "hey, I'm really proud of you, you know that?" And praised whenever I did something by myself. It becomes about the little things and now I'm (mostly) back to my old self. I'm back to school (online) and can do about 90% of what I used to.

Now, for PD, it's a wonderful option! You are trained in both manual exchanges (3-4x a day), which you are required to do for a period of time before you can "upgrade" to using a cycler at night, with a possible exchange during the day. You keep manual bags on hand though in case of power outages, infection, cycler break down, etc. It's definitely something to get used to, but with planning and help, you can travel and have less strict dietary and fluid requirements/restrictions. You do have to keep up on cleaning your bathroom and bedroom weekly to minimize infection, but once you're trained life on PD isn't too different from regular CKD life, as long as you keep your levels in check, take your meds and follow your treatment plan.

I hope this helps to give you peace of mind! Transitioning to PD can be super smooth and easy as long as you stay on top of it! If you have any questions or need a friend, feel free to shoot a message! Good luck and please keep us posted!

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Nikki41775

I totally understand what you mean about the grieving process. I've known I've had this disease for almost 11 years and have grown to accept it but when I took a turn for the worse, I have/had a really hard time accepting it. I always knew that dialysis was in my future but it almost took my breath away when my doctor told me that I would probably be starting it as early as the end of the year. My husband has been totally supportive. He just hugs me and lets me cry when I have my "breakdowns". Just had one this past weekend :(

I'm hoping that when dialysis starts that I will be able to start on PD. The idea of going to the clinic terrifies me! I don't know how I will be able to handle my very full time job and dialysis.

Thanks for writing to me! Everyone on this site has been so kind to me and I really appreciate it!!

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Margie5967

I am so sorry you are having this problem. Having CKD can be so emotionally challenging. I have it, I know.

You mentioned that you have been diagnosed for 11 years.

Would you mind sharing the cause of your CKD and your level at the time of diagnosis?

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Nikki41775

Hi. I just saw your reply now. Sorry for the late response. When I was diagnosed in 2008 I was a stage 2. I was told that the cause of my CKD was too much ibuprofen and uncontrolled high blood pressure

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Greycats
Greycats
in reply to Nikki41775

Hi. I just wanted to say thanks for sharing your story It's comforting to know I'm not alone with the challenges and fears of CKD. I developed a UTI and the next thing I heard was that I was/am CKD4. I'm terrified of dialysis as I watched my father deal with hemodialysis. I thought by taking better care of myself, never smoked and ran every day, I wouldn't have kidney issues. The thing I struggle with is watching the numbers increase. It's like being in this constant liminal state waiting for the bad news. I tell myself to be grateful for PD and a potential transplant but that only seems to work for a few hours before the negatives creep back in. Any advice how to not live in constant fear of the numbers and to "just live"?

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Nikki41775
Nikki41775
in reply to Greycats

Hi. I understand the fear of dialysis. I pray that I never have to do hemo. Having been on PD for only three months now, I can say that I have my good days and my bad days. That’s to be expected I guess with this disease. I will say that I didn’t know how sick I was until I started feeling better. PD has literally saved my life.

As far as not living in fear about the numbers, my advice is to take it one day at a time. Hell sometimes I literally take it one minute at a time. Also having a good support system helps. I think if you spend all your time worrying about things you can’t control you will only make yourself sicker. If you do everything you can do as far as diet and listen to what the doctors tell you to do you basically have to “let go and let God”

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Bet117
Bet117NKF Ambassador
in reply to Ladybug_05

Strong lady and an inspiration!

It is all a process!

Sending you strength and healing prayers!

God Bless! :)

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Kbressler
KbresslerNKF Peer Mentor

I encourage you to actively explore getting a transplant. Find a living donor within your family and/or your circle of friends and get transplanted as soon as possible. Preemptive transplant is not a cure but has more advantages then dialysis. I was a preemptive transplant getting a kidney from my brother 31 years ago and I have never looked back. By the way my brother is doing well. Start by talking to your Nephrologist and find out where the nearest transplant hospital is. Give them a call.

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Nikki41775

I actually am in the process. I already met with the team, had all my tests and now I wait. I have a live donor who is in the process of being tested as well

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Kbressler
KbresslerNKF Peer Mentor
in reply to Nikki41775

Perfect

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Bassetmommer
BassetmommerNKF Ambassador

I am not sure if I saw whether or not you are in the USA. If you are, file immediately a FMLA document. dol.gov/whd/fmla/ This will protect you for a while from being fired or discriminated upon. They are only good for 12 months but it does not have to be consecutive months. I filed one when I was working to protect me. The way the doctor wrote it was for use anytime I need a day or two off and there was no time limit on it.

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Nikki41775

I am in the USA. I've been leery to file FMLA papers because I wanted to save all 12 weeks for when I have my transplant since my transplant team told me I will have to be out for 12 weeks. Luckily I have a lot of vacation time that I can use for doctors visits but I really want to try to avoid touching my FMLA time until I really need it.

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Bet117
Bet117NKF Ambassador
in reply to Bassetmommer

Excellent document! It will protect you as well as

family members/ care givers.

I had two consecutive FMLA documents in place when my mom was in cancer treatment.

Her doctor filled it out and signed it.

I never missed a doctor's appointment with her or a chemo treatment.

My sick days became family sick days.

Very worthwhile!

Thanks, Bassetmommer!

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Bunkin

Hi! I am in the same boat as you. Actually, I’m probably closer to dialysis than you are. I like my nephrologist ok. I wish he would think more outside the box. He’s just very conventional. I like to try different things that I think will help. I am on transplant list over a year now. I call transplant coordinator, he’s never there. I leave messages, he never returns my calls. And to top it off, there are so many conflicting stories out there on what to eat, what not to eat. I was using an app to track potassium and phosphorus. They discontinued it. Asked doctor was there another one I could use. He didn’t know if one. I asked if there was anything I could do to lower bun and creatinine, he said”no, you’re already beating the odds” I thought to myself, what kind of answer is that? Then I read stories of people on dialysis. Some people have great results, others have horrible results. I’m not sure what to expect which makes me anxious. Anxiety makes my bp go up. Then I just have to stop, try to think positive thoughts and pray for help dealing with all this. I will include you in my prayers. With God, all things are possible😀

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Nikki41775
Nikki41775
in reply to Bunkin

I really appreciate that! I’ll take all of the prayers that I can get. I have such anxiety about dialysis. I too have read many stories -both good and bad - about dialysis. Scares me! I don’t know what to expect and I guess it’s just the fear of the unknown

I think I have a pretty good transplant team. I mean, I have nothing to compare them too. All I can say is that whenever I email my coordinator she emails back.

Thanks for replying. I really need people to talk to about my illness and this site seems to really help me

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Bunkin
Bunkin
in reply to Nikki41775

Also I’ve been leery of the transplant thing because of all the drugs you have to take. Even now if I get a cold it’s hard for me to get over. I think the drugs would do me in. Plus I just read the story on Selena Gomez transplant so now I am really nervous about that. Keep me posted how things are going and I’ll do the same😀😀

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Nikki41775
Nikki41775
in reply to Bunkin

I understand completely! I had bronchitis at the beginning of September...took antibiotics for that...went to California to visit my Mom at the end of September...came back and developed an upper respiratory infection. Been on antibiotics for 9 days so far and I still feel like crap! I'm wondering if the delay in recovery is due to the kidney decline.

I know what you mean about the drugs...prednisone especially. My old doctor had me on 80 mg of prednisone daily. She wanted me to do it for two months...I lasted three weeks before I started to tapper off of that evil drug. It totally ruined my life! All the bad side effects you can get, I got. I was almost forced to go on a FMLA leave at my job because I kept screwing up. It was literally the worst thing I could have ever done. I've been off of the medicine since August 31st, and I still feel crappy from it! So the fact that I will have to take Prednisone after transplant scares me but the idea of being on dialysis I think scares me more.

I should know with in a week or two if I've been listed. I'll keep you posted! :)

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Bet117
Bet117NKF Ambassador
in reply to Nikki41775

Stay strong and positive!

We are all here behind you- reach out!

:)

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Nikki41775
Nikki41775
in reply to Bet117

Thanks so much!!! :)

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Philipjm

Hi Nikki,

Now you have a consultant who you are happy with it should be less scary.

At my unit in Derby they have a very caring and totally supportive attitude, talks with my consultant are a discussion of what I want given the information and not what a medic may suggest.

As part of this process ciders patients begin talks with the team about 18 months before they may have to start dialysis.

As part of this process I give a talk about my experiences from initial clinic meeting and regular checks and then through CAPD and now into HD and now nocturnal HHD, I give this talk several times a year and cad patients have found this helpful as do the consultants. I have recently been asked by the dietician to talk about my “diet”

It is all very scary at first as this is a life threatening disease but can be managed really well if you work with your renal team.

I have an excellent renal nurse who has been really supportive especially in the early stages. If I have a problem when starting my dialysis a phone call and he is at my home within an hour, how good is that?

I am 71 and still work full time in a demanding job and enjoy life to the full.

The hardest part was going away on holiday with my kit for the first time, if planned well in advance it works great. We are planning a holiday to Oz next year to see our new granddaughter, support is so good in organising this.

I am presenting The British Kidney Federation conference this weekend in Blackpool, my renal journey, a patient experience.

I wish you well as you progress, the secret is to have a positive attitude and I am sure all we be good.

Best wishes

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Frankie24

Hi Nikki, I am stage 5, gfr 9 %, still working and going through many health problems. It seems I spend more time at dr. appts. testing etc. than I do at work these days. I am holding off on dialysis, although I feel pretty bad most of the time now. The fatigue and inability to get things done that I never use to give a second thought to. I work on my diet, a bit of exercise, plenty of water, I have not started dialysis but visited the clinic that I will be going to and my nephrologist is the director there. I agree it is all overwhelming and I wish I had some great words of wisdom. Use your support. I don't have any but I am trying to get some in place. Take Care and God Bless !

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Nikki41775

Hi Frankie!

I totally understand about the health issues and doctors appointments! It can be so overwhelming at times! Lately, I've been feeling pretty crappy so I have a gut feeling that dialysis is in my very near future which scares the crap out of me! I have an appointment on 10/31 with my nephrologist and I totally expect him to say its time to have the dialysis access port put in :(

When the time comes, I am hoping to do PD since I have a very demanding job that I need to keep. I cant fathom working 50-60 hours a week and going to the dialysis clinic 12-18 hours.

I'm sorry you don't have support. I am so grateful I found this site. My husband and family are supportive but they don't understand exactly what I am going through and I don't expect them too. Feel free to reach out to me if you want to talk :)

Take care!

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Frankie24

Thanks, I will keep you in my thoughts. I just had a revision on my fistula which as I said is not yet in use. I have PKD so PD is out of the question. I will have to have hemodialysis. I am trying to find a home partner so I can do home dialysis as well. Keep the faith. I know it is not easy !

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Bunkin
Bunkin
in reply to Frankie24

Hi. Why did they tell you PD was out of the question. I have PKD and PD is what I’m planning on doing

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Frankie24
Frankie24
in reply to Bunkin

I was told that my kidneys were so large there just would not be enough for all the fluid etc.

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Mr_Kidney

Have either of you, Nikki and Frankie, thought about Home Hemo-Dialysis? The reason I'm asking is that it is the method I'm seriously looking at should I need to begin dialysis. What I've read so far is that if your doctor gives the okay, and using the buttonhole technique you would be able to dialyze more frequently and you wouldn't need a partner. By doing this at your schedule it seems that you can dialyze more often at home and at the times convenient for your schedule, including travel if needed or wanted. There is no reliance on a center for the time slot that works for you and your work. The recovery time with more frequent dialysis is so much better than in-center dialysis, and I've spoken to a few on PD and they felt much better after they switched to HHD. Just a thought. If you want more information send me a PM and I'll give you what information I have.

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Frankie24
Frankie24
in reply to Mr_Kidney

I definitely want to do home, just have to find a partner.

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Mr_Kidney
Mr_Kidney
in reply to Frankie24

Actually, HHD doesn't always require a partner. I've been reading a lot of information an the NxStage System 1 and from the material I've received it says, "Patients are trained to receive treatments in their homes, during waking hours, without the presence of a care partner." This comes in the booklet from them called, Home Therapies "Get Your Life Back" Learn about the Benefits of Home Hemodialysis.

You can go to nxstage.com or call them at 1-866-697-8243. They are located in Lawrence, MA.

The materials I received are listed below:

APM1372-A Live Book Small version without DVD flap

APM-1993-A Get Your Life Back

APM-3069 Helparound Postcard

APM486-D Keeping Them Home

APM-494-C System One Home Products 6-Pager

APM505-A Frequency Matters

APM665-C Mountains of Evidence

Also, on their website are a collection of approximately 17 videos on the process that you can view and learn what you need to make an informed choice.

What makes this program so attractive is that it can travel with you. I do a lot of traveling in my RV and I can take the machine and supplies with me and do the treatments in the evening and not have it control my life. If I should have something planned for an evening I can switch to a different time of day for the treatment and keep the evening free.

Good luck in your research and contact me if you need further information.

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Frankie24
Frankie24
in reply to Mr_Kidney

Thank you, I have looked into it and the doctor who oversees the dialysis center and is my nephrologist will not here of it. I think it is ridiculous really ! She absolutely will not agree to it without a partner.

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Mr_Kidney
Mr_Kidney
in reply to Frankie24

Sorry to hear that. In-center was too much of a problem with long recovery times after each session and when I visited the local one I found that none of the folks there had been able to maintain their work schedules or travel too far and had to severely curtail their activities and the folks on PD said that it wasn't as effective as the actual blood cleaning and was too burdensome to continue it long-term. The comments I received is what led me to HHD and when I spoke to my Nephrologist and showed him the information I received he was supportive and told me that as long as I convinced the training staff that I could do it myself he would support the decision. Have you spoken to folks on the Dialysis community to see how they've handled their work and travel? Best of luck to you.

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Frankie24
Frankie24
in reply to Mr_Kidney

I know, I was hoping desperately to be able to do the home hemodialysis as they said about five days a week at least for 2 hrs. a session. I am still working to find someone. My 26 YRO son lives with me but I would not expect him to change around his life and schedule for me. He has been a tremendous help going through all this already. No, I have not spoken to anyone and it is a concern since I do travel at times for work. As always I appreciate all your wonderful knowledge and sharing.

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Nikki41775

The only thing scaring me about Home Hemo is the needle. I hate needles and the idea of giving my self one....Ugh...I just think I could do it!

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Mr_Kidney

Pardon my guess here, but I'm going to go out on a limb and guess that you have pierced ears. If I'm correct then you are familiar with the process. You can put on your earings by either looking in the mirror or doing it "blind." The buttonhole technique is similar only you can look right at the point and insert the needle right through the tunnel. There is no traditional needle stick like is done when blood is drawn for labs, etc.

I'm not affiliated with anyone or organization involving HHD but I've done my research and should the day come when I have to have dialysis that is the method I am leaning towards. Here is the link that may help you understand the process.

kidney.org/atoz/content/but...

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Nikki41775

Thanks for the info! Its a lot to think about

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Thomas1967

Rather than being mad about the disease, why don't you research it and find out what dialysis is really about. I'm going on my 8th year being on dialysis and have no complaints. Sure, I've had a lot of problems with my access (fistula) but I work through it and take one day at a time. Over the years, I have had over 30 surgeries to correct my fistula or HD catheter; problems happen, accept it now. I don't understand why you would want PD. There are laws protecting dialysis patients no matter how demanding your job is.

I suggest you research dialysis, there are hundreds of books and online resources available. If your husband really loves you, he will go through this with you. Lean on the ones who love you, you are going to need the support.

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Nikki41775

I know all about the laws that are put into place to protect me. I know I get 12 weeks of FMLA time each year and I also know my employer can terminate my position after 12 weeks if my absence becomes a hardship for my company.

I think being mad about my disease is a very natural feeling. I also feel like I can be mad and still accept my fate...which I have. I have researched this disease and dialysis plenty.

Why wouldn't I want PD? If I can have my treatments from home at night while I sleep and still maintain my Full Time job...makes sense to me.

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rabbit01

Hi, I am the same as you in that I am at stage 5. I was not diagnosed until late stage 4 (with 17%) left about three years ago. I too am looking to do PD initially and continue to work. I work with computers for an international company so it is quite possible for me to work from home and I have done for the last two years but since June this year when my eGFR went down to 12% and I just felt too sick to work. Like you I am mad about it all so I can relate to what you are going through. All the best and stay in touch.

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Nikki41775
Nikki41775
in reply to rabbit01

I find it very difficult not to be mad about this. Like everyone here, I have my good days and my bad days. I can't imaging how you must feel being diagnosed at a late stage 4. I was diagnosed at a 2 so at least I had some time to get used to the idea. I'm really afraid of the future. Have you thought about transplant? I've met with a transplant team and had all of my tests done and should find out today or next week if I am approved.

Best of luck to you! :)

1 like
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rabbit01
rabbit01
in reply to Nikki41775

Yes I am currently going through all the transplant assessment tests and in parallel having the dialysis training. I just take each day as it comes. Before being diagnosed I was very career focused but ever since I have little interest in work. It's impossible to focus on work with this hanging over me all the time. It is great if you have a fulfilling role and it takes your mind of this. All the best.

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Nikki41775
Nikki41775
in reply to rabbit01

Its crazy how much I understand! Sounds like we are in the same boat. Everyday I wish I could financially afford to quit my job and just focus on getting "better"...what ever that means. I feel so crappy everyday that it's hard for me to focus and to actually do a good job and my mistakes are starting to show.

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mrice
mrice
in reply to Nikki41775

I know exactly what you are talking about... i was there last week then brought myself to the hospital. I feel like me again!! Joking, laughing, not faking feeling good, motivated, actually excited about life again!!! I’m not joking. It’s awesome to feel so good again in only 3 treatments. I noticed a huge difference after just 1 treatment. Trust the process!! You feel better.

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Nikki41775
Nikki41775
in reply to mrice

Really? You feel that much better after just three treatments? That's really great!! I am looking forward to feeling better again!!!

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mrice
mrice
in reply to Nikki41775

Yes!!!!!!

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mrice

Don’t be scared... i just started dialysis and i feel so much better!!! I was ckd 5 for awhile and by the time i got to the hospital felt like the walking dead. It’s a matter of perspective!! It’s not that bad... i had formed an opinion based on two of my friends who unfortunately are just negative people. If you have the right mindset it is freeing. I’m not saying it’s a cakewalk or that I’m ok with it but that’s the hand i was dealt. You can do this!! If you want to know more Or have questions please don’t hesitate to ask!! Gods got you

1 like
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Nikki41775
Nikki41775
in reply to mrice

thank you! I just might take you up on that!! :)

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Bunkin
Bunkin
in reply to mrice

Thanks for your post. I’m nearing dialysis and scared to death but you have given me hope. Prayers for your continued success. With God, all things are possible 😀

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mrice
mrice
in reply to Bunkin

I totally understand your fears i was scared to death when i got here then i started feeling better like myself again! What an honest blessing. Yeah it’s a change but life is all about that. And it’s also about how we handle adversity. I’ve been a member to this board for a while but I’ve been very quiet. Not anymore i want to share my experience because I see so many people living out of fear because of this. The scary part is if you don’t get help see where that lands you. I had what was called uremic encephalopathy basically pickling of my brain because of the toxicity build up. It was making me a different person. Today i am honestly feeling like myself!!! I’ve got energy, i am motivated, feeling so blessed to have another opportunity to LIVE life. Just to give you an idea where i was my creatinine was 18, bun 150, gfr3!!! Why??!! Because of fear and stubbornness!!! Don’t be like me... (after 4 treatments now creatinine down to 8, bun 45, gfr5!!!) i feel so good and honestly free. I was a captive to myself.., hope this someone

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Bunkin
Bunkin
in reply to mrice

Thanks so much for the encouragement! I really need it. I don’t really have a support system except my husband so you’ve really helped me. This morning I had a little breakdown because I read someone on here said with PKD you can’t do PD which is what I’ve been planning on. Guess I’ll have to wait and see. God bless you😀😀

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Granny401

I can understand how you might feel. I'm far from end stage yet but I still have CKD and did not even know it. Some how it seems that the Doctors don't take it very serious. At least not till one gets to the end stages. I was told not to worry about the eGFR. And recently I dropped to a 53 eGFR. I was able to get it back up to a 65 eGFR but I got a call from my Doctors office telling me that my eGFR is normal yet a part of my medical Dx is renal insufficiency. How can a stage 2 CKD be normal?? Obviously I have had active kidney disease and and once there's damage that much of your kidneys are gone. Diet helps to get the kidneys back to and higher level of functioning provided the problem is caught early enough. I have SLE and it likes to do kidney damage. SLE has been active in my lungs, with my skin, I have neurological issues because of SLE and I've often wondered why it spared my kidneys. Well guess what, it was messing with my kidneys too. I thank my Heavenly Father that it's not been to bad with my kidneys. It can get that bad though. My prayers are with you and I wish you the best.

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Nikki41775

thank you!

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Smokey2014

I too am now stage 5 end stage acute renal failure..

Pre dialysis..

I have a GFR of 12 and very high creatine about 4 ..

I am also very scared of the unknown of dialysis..

It's normal to be scared..

I realize now being a kidney failure patient myself we're afraid of the unknown..

I found with kidney failure ( which I'm still learning about) so many things change in your life.

Your energy level, your diet, your anxiety level, sleep patterns, and waiting for all the lab results.. always..

Just to see what the kidney function is doing..

There are times depression sets in and t times you have strength for the day..

It's seems to be a roller coaster ride most of the time..

Oh..

And the sleepless nights because of getting up to go to the bathroom all the time..

I also am new to kidney failure..

I got my kidney disease from a staphylococcus infection from a tattoo in September of 2017 ..

I had 97 percent function in August of 2017 ..

Now I'm at 12 percent..

The medication therapy I know is hard..

Chemotherapy and mass doses of Prednisone..

And nausea..

Please hang in there..

I know you are scared..

This support group is great.

We are here for you..

We're all here to cope, learn to have a better quality of life with all we endure having kidney disease..

We're family in an uphill climb..

Being scared is o.k...

But know..

You're alive..

And you will be able to fight this battle .

When I first got diagnosed in stage 4.

I was sick, devastated and depressed..

Thanks to this support group I now feel even being in end stage kidney failure it will be o.k..

I know in the state of Pennsylvania, stage 4 kidney failure is a permanent disability..

Check in your state..

Hang in there..

It will get better..

I know..

Someone in this group told me there is a finish line..

She's there after a difficult battle ..

She told me she would wait at the finish line for me until I get there..

I'm still in the race there..

She told me she would greet me with a hug at the finish line..

I believe her..

That's my goal right now..

That finish line to greet her and tell her I made it..

I will wait for you to give you that big hug to..

If you need me ..

I'm here for you..

You'll make it..

God Bless you and keep fighting..

It will be worth it..

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RhwnSutchess123

I am also Pre Dialysis...62 y/o Female....GFR 20 .Creatine 2.6....I was diagnosed 18 years ago with CKD...it has been a slow progress but now that I have entered Stage 4 and looking at "Options" I am also scard and mad and sad and happy too that there are "Options"...My Nephologist thinks I am a good candidate for Peritoneal Dialysis....but also wants e to go on a transplant list...which I am hesitant about....I think I will try the Peritoneal...and see how things are....

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Nikki41775

Hi. I actually just had my PD catheter surgery last Friday and I start dialysis on Monday. Just reading the worlds “ I start dialysis on Monday “ just seems so surreal to me. I am on the transplant list as of November 1 but in NJ there is a 5-7 year wait so this is only the beginning of a very long journey

Good luck to you on your journey and what ever you decide to do!!

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RhwnSutchess123

Hello....how was the surgery ?...I like the idea of doing Dialysis on myself in my own home...My Nephologist had the Transplant Team contact and I had an appointment for Dec 17th to be assessed....I cancelled it....From what I have read about Transplant it scares the heck out of me....I would rather try the PD Route and see how it goes, but I may change my mind.....How do you feel about Transplant ?

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Nikki41775

The surgery really wasn’t too bad. It is same day. I took a week off work just to rest. I opted for PD because I have a very demanding job and couldn’t imagine going to the clinic for hemo and plus I don’t like needles lol. Transplant scares me but the idea of being on dialysis for the rest of my life scares me more.

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RhwnSutchess123

They just put in your PD Cath last Friday and you start PD on Monday...doesn't it need to heal for awhile first ?.....I dont know which scares me more....the PD or Transplant and all the anti-rejection drugs that are required...plus living on the "edge" waiting for a Kidney...I am very interested in following your post and seeing your view of doing the PD...I hope thats okay

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Nikki41775

In a perfect world I would have to heal for a few weeks but time is of the essence since my numbers are getting worse. My GFR is only at 11 and my creatinine is approaching 5.

I’m scared of both options but I’m only 43 so I feel like I’m literally in a fight for my life.

It is absolutely ok for you to follow my post! I’ll put updates on this post once PD officially starts

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RhwnSutchess123

Bless You Nikki.....You sound strong and I bet you will do well on PD....I wish I could hold your hand....so I will just hold you in my heart...

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Nikki41775

Bless you too!!! Thank you for your kind words! Anytime you want to chat, reach out...I’m here!

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RhwnSutchess123

Hello Nikki....just wondering how you Dialysis treatments are going?....are you feeling good...were you able to stay on PD at home ?

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Nikki41775

Hi! Everything is going pretty good. I’m in a routine now. I’m feeling pretty good too. Tired though which I guess goes along with kidney failure but I’m ok. Yes thankfully I’m still on PD. I ever went across the country last week and was still able to do my dialysis. How are you?

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RhwnSutchess123

So glad you are doing good....I am still not on dialysis...but feeling more effects if kidney disease....so awesome to hear from you....I often think of how your doing....how did you go across the country ?....

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Nikki41775

I flew to California to see my mom for a few days. That’s good you haven’t started dialysis yet. Any idea when you will be starting?

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RhwnSutchess123

Well...gfr is 16..and I have an appt with Neph next week....but other than tired I feel good...although now I get nausea every so often....Do you feel better than you did before Dialysis ?...that is awesome you traveled all the way to California....did you have your solution delivered to your moms or did the airline allow you to bring it ?

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Nikki41775

Absolutely feel better than before. I really through I was on deaths door. I still get bouts of nausea but my labs are pretty good so I just deal with it as it comes. I had all of my supplies shipped to my moms house

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RhwnSutchess123

That is so wonderful to hear !!....There is Life after Kidney Disease Diagnosis...I remember you were feeling quite poorly and your cath had wrapped itself around your tubes....I told my Neph your experience and that I wanted the cath now so that it would heal before dialysis....he wouldn't let me and promised it would have time to heal...how is the drain pain...has that subsided ?

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Nikki41775

Drain pain is still here lol

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RhwnSutchess123

Dang it...I was hoping it had subsided or at least was less...that's probably what I worry about the most

..

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Nikki41775

It’s not bad. It’s definitely bearable

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RhwnSutchess123

Yay !!...so glad to hear you are doing better...are you still working ?

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Nikki41775

Oh yes.

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RhwnSutchess123

I will probably contact you as I start this process...hope that's okay....I need all the support and ideas I can get..

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Nikki41775

Absolutely!!

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Philipjm

Hi Nikki,

I sympathise and understand your angst.

I started PD 4 years ago and it was great for me. 4 times a day to carry out an exchange. If you are in the Uk your employer has to make reasonable adjustments to your work place/ conditions to accommodate your renal needs. I dialysed at work , had a small room next to to good hand washing facilities, hygiene is the singly most important issue with PD.

PD was good for me but I damaged my catheter, my silky mistake, leaked and had a nasty gamma negative infection, peritonitis, not much fun, after 6 bouts of peritonitis and a new PD tube in discussion with my renal team gave it up and went for HD. As I had to have an AV fistula formed I was without dialysis for 8 weeks. eGFR of 6 at the time, had a blood test every week to monitor and came through that while working full time in a busy demanding job. My renal team are helpful, totally supportive and magical.

Started HD which sounded scary at the time but soon adjusted. After two weeks at 3x4hrs a week I decided to go for Home HD, after another 4?weeks joined the home group and had a two week intensive training with my wife. The hospital arranged for my machine, nxstsge, to be installed at home for me. Started at home on a Monday morning, my dedicated renal nurse came each time for two weeks to ensure all ok. A little scary on our own at first, we did have teething problems but a call to my renal nurse usually sorted and if I needed him to come he was always on my doorstep within an hour at the most .

I did my dialysis at 7 in the morning 5 times a week for 3 hours and adjusted my working day with my employer. After a month I decided to move to nocturnal dialysis, had a training session in the hospital and then stated the next evening.

I get everything ready around 8pm, takes about half hour, I start dialysis soon after 10pm for 7.5 hrs, sleep for about 5hrs, get up, shower, breakfast and go to work as normal, I fact I feel normal whatever that is!!.

My bloods are great every month, I take my own bloods, spin, take to hospital and see the results on line within 12hours normally. If there is a problem my renal nurse will have seen the results and calls me immediately if we need to talk.

If I have a problem during the night I have a free phone number to nxstsge in the states and they are so friendly and helpful and will not go of the phone till sorted and if they cannot sort will guide you to come off to ring 999, this had never happened to me in 2 years.

I still work full time, walk 25 miles a week, brisk walking, have a large garden I maintain and love life, this awful disease will not best me or stop me from enjoying life.

I am taking my machine to Australia next year to see my new granddaughter.

I give talks to potential patients in my local hospital , starts about 18 months before they may be starting some form of dialysis. I have presented at conference the patients experience of dialysis in all its forms.

I have and planned in September to give live dialysis to potential patients in a hospital setting. Giving something back to our wonderful NHS is so satisfying and I cannot think them enough.

As a nocturnal dialysis patient I have around 27 hours of dialysis a week with a blood volume clearance of approx 360 litres a week which is almost as good as a transplant. So now I have choices, dialyse nocturnally which is great or still go for a transplant which has many unknown risks . I have been for 2, but after hours in the hospital, at one of them gowned and ready to go, did not go ahead as the organs could not recovered in the time frame allowed.

This was an experience in itself, again our wonderful NHS.

Remain positive and live can be great and wonderful on dialysis

Best wishes Philp

1 like
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Jayhawker
Jayhawker
in reply to Philipjm

Wow, what an inspirational post! Thank you for sharing this with us🐶

Jayhawker

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Nikki41775

My pleasure!!

Reply
Nikki41775
Nikki41775
in reply to Philipjm

Wow! Your an inspiration! I am so incredibly scared of Hemo and don’t know what I would do if I ever have to switch over!! I am on the transplant list but that scares me too because there are so many unknowns. I know what I have with PD and I am managing. I feel pretty good too. It’s a drag to have to do dialysis every night but for now my script is only 3.5 hours so most nights I sleep through most of it. It’s just become a way of life now. I have a really good renal team so I am fortunate. My job is super demanding but they have been supportive thankfully.

Thanks for writing!! Best wishes to you!

1 like
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Nikki41775
Nikki41775
in reply to Philipjm

Thanks for writing! I replied to your post but I didn’t hit reply so it’s showing up as another comment lol. I hate when I do that!!

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