Starting dialysis on Monday

[Donnaher]

I'm 47 and I've known since I was 23 that I have inherited poly cystic kidney disease. Roughly 5 years ago I found that it has affected my liver as well. I was told recently that I would need a liver and kidney . I'm stage 5 , gfr 10 and meld score is 20. I am scheduled for my first dialysis appointment on Monday. I am really emotional with this situation . I'm trying to get on the transplant list. I have one test that they have requested to be done with full contrast ( which is the reason I need to start dialysis ) . I do feel all alone. My family doesn't know my emotions that I try to hold back from them. I don't think they completely understand the emptiness that I feel. I try to let it out a little without sounding like I'm complaining . I'm tired, I'm dizzy, I'm going to get sick, I don't want to do this, I'm scared, no one knows what it's like. They say I know but I don't know what to do for you. Well , listening to me and letting me vent would help a lot. I just feel like they don't really know . They don't want to discuss it.

[Kimster]

I have just finished my first 6 months of home peritoneal dialysis. I was told it is a lot easier on your body than hemodialysis so I chose that. I stayed on manual dialysis for a month and then went to the night time cycler. I could not handle it. I gave it a month before I told the clinic I could not handle it anymore and wanted to go back to manual 4 times a day. They agreed. It takes up a lot of my day but I have found I can

schedule it up to 6 hours apart or as soon as 2 hours of "dwelling" so if you have activities you can make your own schedule to accommodate them.

I have been on the transplant list for a year so far. I will not let anyone put contrast dye in my body as I know what it does to the kidneys. I had a kidney transplant for 20 years and it gave me many good years but time for another. I never went on dialysis for my first kidney as I had a donor. I have no donor this time so must wait.

Good luck to you! Consider peritoneal dialysis if you are able. It is a lot easier on your body and you can do it at home. You just need a room for all the delivered dialysis solution boxes as a normal shipment is anywhere from 25 to 50 boxes.

[supernan56 in reply to Kimster]

Hi so sorry to hear you are feeling so low, I care for my husband who is on HD and has had a stroke, he is only 63 and as you can imagine he became depressed but at Diaylsis unit we have a councillor come, and my husband has found taking to her helped him. Not sure what diaylsis you are starting but if it is HD you hopefully will find others in the same situation that you can take to. I wish you good luck with your treatment and hope some peace.

[Donnaher in reply to Kimster]

Thank you. It was recommended that I have a fistula for HD. I had that placed back in December of last year. What happened that you are in need of another kidney? If you don't mind me asking.

[Kimster in reply to Donnaher]

I was on a blood pressure medicine that protected my kidney called an ACE inhibitor. This is the best blood pressure medicine for anyone with a transplant. After many years of taking it I became allergic to it. I got angioedema. This is where your face swells and can result in death if the swelling goes into your tongue and throat. When my nephrologist saw the pictures of my swollen face (which lasted a day and subsided after lots of cool packs and antihistimines were taken) she immediately took me off of my ACE inhibitor. She put me on several other bp meds which I could not tolerate but finally I found one that didn't make me sleep all day. The down side is that it did not protect my kidney and I started spilling protein in my urine. It was a downhill slide from there as I was told only an ACE inhibitor will keep the protein out of the urine. They did a biopsy of my transplant and it showed lots of scarring. I did get 20 good years. One thing that it is important to emphasize is that an ACE inhibitor will keep the pressure that the blood hits the transplant lower. I didn't think I needed any bp medicine as my numbers were fine but my transplant nephrologist said they are more concerned at the pressure the blood is going into the kidney as that is one of the ways scarring happens.

Good luck to you and I hope you get a successful kidney transplant soon.

[daisy64]

Hi my partner is 33 and has been on home HD for 3 years and it has been the best thing ever he can choose how many hours he does every week so long as you do not go under the recommended 12 hours a week. He is not restricted to the dialysis unit, and is under full control. He has 3 full days of a week, he gets up in the morning to get on and get of once finished the day is his own. His bloods have been perfect since he was diagnosed with stage 5, this is due to extended HD dialysis hours and good blood cleaning. He has never taken any fluids of as he has not needed to. Be strong and be firm as to what you want and need it is your health and needs no one can tell you any different. My partners family do not bother with him they never ring to see how he is never offered themselves as a Donner, when he tries to speak to them they just change the subject, and never want to talk about it. Your not on your own speak to the nurses etc there is always extra counseling if you think you need it even if it is talking to someone that will listen.

Take care

[Donnaher]

I really appreciate all of the replies. My husband is going to the center with me tomorrow. I'm sure it's going to be an emotional day. I'm really nervous. I don't know what to expect .

[Timbles]

Donnaher - Chin up, don't let this get to you. The one thing I have learned from being on dialysis is that your state of mind is everything. No one can truly understand what it is like to be in this situation as until you have experienced it you cannot grasp the gravity of the situation. Forgive them, they can't know what you are going through. I do, I've been there and am there still. Life goes on and it can be managed very well. The support you get from the hospital and from Baxters ( I'm and APD patient) is second to none. Take the very best care of your body, eat the best healthy foods but most of all think as a well person just going through an illness NOT an ill person missing wellness. March for peace not campaign against war. Its the subtle shift in perspective that makes the difference. - If you need any advice or to ask questions, fire away.

Good luck T x

[chester169]

I always try to stay positive been on dialysis four years now you have good and bad days some days I hate the fact I've got to go for dialysis other days I just get on with it as you say people don't understand my family don't ask how I am they never talk about it unless I bring it up then you feel their not interested so I don't bother talking about it sometimes you just want someone to listen

[andy52]

Hi, I am a 61 year old man, I have CKD looks like Dialysis in New Year

If u like to email me off this site its just easier, [e-mail]

Regards

Andrew

[lovemore]

Hi Donnaher.

I have just joined this site l hope my answer is not two months late. Firstly l hope you're doing fine with the dialysis although l am not sure what type of dialysis you're going through. Secondly it's natural to feel the way you're feeling the emotions and people not knowing how you're. Have you had your transplant yet, you will find life will be much better after the transplant. Hang in there you will be fine.

[Donnaher in reply to lovemore]

I'm doing hemo in the clinic. My first visit there , they had a hard time finding my veins. I ended up with hematoma. That was very painful. I had a tunneled catheter placed in my chest so my arm could heal. I'm not a big fan of hemo . I am looking into PD. Three weeks ago I was placed on the kidney/liver list. I get very sad when I see the patients at the dialysis center. I think it has to be hard on them because they are older and I know how sick it make me feel. I don't feel good until the next day. Looking forward to feeling like I should. Have a great weekend. Thanks for all your replies.

[PKDying]

Hi,

I am eGFR 7 and was supposed to go on dialysis years ago. I was supposed to start Wednesday coming but have changed my mind again and will try to hold out to eGFR 5.

Looks like you already started dialysis, though, but if not, and you have no uremic symptoms, you should try and hold out as long as possible. New studies seem to show no benefit to starting dialysis early as opposed to late, meaning <6 eGFR.

Just so you know I also have PKD am 49 year old man, my kidneys are both about a foot long each. I still go to the pot as usual and am choosing to live with the uremic symptoms (fatigue, peripheral neuropathy, some headaches, strange sleep and bowel patterns) rather than sit in the chair just yet.

I just want it to be known that there is no reason for PKD patients to begin dialysis before eGFR 5 or so as long as your other, particularly uremic symptoms and blood pressure are under reasonable control. Some nephrologists will warn about potential heart and brain problems, and other progressive damage, which is very real, but for me the risks, which are some, outweight the benefits of starting early, which seem to be zero.

[juile in reply to PKDying]

My 20 yr old daughter had a egfr of 4% and creatine of around 1000, but despite this she has kept healthy and no signs of esrf..and she is supposed to have hypoparathyroidism, again no symptoms only phosphorous sometimes up to 2.4 the consultant has scared her into having pd. early days yet...but they want her to do apd 4 times a day..wondering is this really necessary.?

[Donnaher]

I didn't know all of that. I listened to my doctor and started dialysis. Your kidneys are as big as mine. My kidneys measures 20 and 21 centimeters . My liver is huge. It pushing my stomach back I look like I'm pregnant. That really bothers me

[PKDying in reply to Donnaher]

Hi sorry so late to respond. Yes I am 165 lb. and when I eat a fairly large meal I look like a snake that just ate a mouse lol. It's not where a good old fashioned beer belly should be but up higher by liver. But really considering their size I am surprised my shape is not bad. You should see some pictures I've seen of people with kidneys our size! Probably if and when we get a transplant/nephrectomy that would change.

I imagine doctors must recommend what they do for safety i.e. probability. Well you see how probability worked for your kidneys. Also, not to be a downer, but always remember dialysis is big big business. Personally I am dismayed that the majority of "treatment" for people in our conditions consists of herding you through the dialysis turnstiles.

Try reading some recent studies from Canada and Europe, as well as US. Google If you have a functioning fistula ready to go AND ARE OTHERWISE HEALTHY (decent bloodwork, no co-morbidities, etc.) they recommend a change from before (GFR 10 US) to GFR 6. These studies claim no benefit to starting sooner.

I just hit GFR 5 last week. I think I will start the chair in February, God willing, which by that time my GFR will, at the current rate, be GFR 4.

[JEROME290495 in reply to Donnaher]

Hi Donnaher, I am a 51 year old female who was diagnosed with PKD when I was about 18 years old along with my sister who was about 14 years old. Unfortunately it's hereditary on my dad's side of the family. He is doing well after having a transplant nearly 2 years ago now aged 75. My son was diagnosis with it when he was 8 years old he is now 20 with no symptoms so far.

I too, have two very large kidneys 1 measuring 20 cm and to my dismay a very large polysctic liver. I am only a size 10/12 in clothes but because I too look like I am pregnant I have to buy clothes that are 3 sizes bigger and are loose fitting. I use to be able to hide it and even was able to hold my stomach in, but over the last 4 years my stomach has extended so much that there's no hiding it. I'm so fed up of people asking me if I'm pregnant.

I was told that I would go on dialysis for a couple of months then have kidneys removed. Now I've been on dialysis since April but hadn't heard anything re removal of kidneys. I saw a consultant about a month ago an was told that they don't usually remove kidneys unless I have regular bouts of urinary tract infections or if at the time of transplantation they don't have enough room.

I am thinking of getting a second option as I don't see the point of keeping to very large organs that will be of know use to make in the future not to mention they are riddle with cystic that burst from time and the fact that they would be transplanting 2 healthy organs (liver/kidney) next to them if they have enough room to do so.

Just wondered if you have been told that they would remove your kidneys. Hope you are coping with the HE treatment and feeling better in yourself.

I look forward to hearing from you.

[Mgt8]

Hi

what you said about large kidneys, your liver, stomach and looking pregnant struck a chord with me. That's exactly how I feel.

It reminds me of how I felt during pregnancy too. Achy legs, not being able to climb stairs, sick, headaches......

on the positive side, there are good days.

I got over the 'fat' feeling by buying clothes that suited my new, more rounded shape. Took ill health retirement and saw it as starting a 'new life.'

Many people on here talk about a positive mindset; thinking about being a well person just going through an illness.

That does help but there are bound to be low days when you're feeling lousy and it's helpful to know on those days that there are other people who are going through what you are and they understand.

Hoping the dialysis goes well for you. Do remember that every kidney patient is different and you are doing what is right for YOU.

[Hidden]

Hi Donnaher. I read your story and the replies and I'm interested to know how you are getting on? I am having my PD catheter fitted on Friday. I have a GFR of 13, but it temporarily slipped to 7 when I have an allergic reaction to an antibiotic, so now I'm having the catheter fitted as a precaution to avoid having to have to Heamo dialysis. I like the idea of the freedom at home. Did you switch to PD in the end?

Hope you are well and managing to keep optimistic. It made me sad when I read about you struggling with your emotions and I just want to say you are a really brave person and an inspiration to others like myself about to go through this. It makes me feel braver and less alone knowing others struggle with their emotions too. Keep your chin up and find whats right for you.

[PKDying in reply to Hidden]

I'd get that blood checked again. If it's 13 you have time to mature a fistula.