Analysis

[Barbara N]

Does anyone know anything about dialysis? I will be asking a million questions to the internal medicine people and the kidney doctor but I would like some personal experience. I have been goggling it, and trying to find out all I can, but a personal objective would be nice. I know everyone tells me that children have it done and have no problems, but somehow that doesn't put my mind at eases. I want to know everything from having the shunt put it to how often and how long are the visits. Does it hurt? I hope someone out there can shed some light on this for me before it is my turn, which is drawing near. Next week a lot of my questions should be answered, but it also means it will be time to start and I don't know if I want to. I can't get on a donor's list because of my WG so I am praying for a remission before anything drastic has to be done. Anything to put my mind at ease would help. Ánimo, Bárbara

[Texastatoogal]

My dad used to be on dialysis. He had to go 3 times a week, I believe. This was over 18 years ago. So I do not know if things have changed since. It would take 2-3 hours for the treatment. I remember he would get cold and very hungry after wards. I don't remember him complaining of any pain. He had a shunt in his forearm that lasted several years. I hope this might help settle your mind some. I know my mind likes to go in overdrive and makes things worse than they are. I will continue to pray for you.

[Barbara N]

Thanks, that really did help. It is silly to worry about things we don't know anything about but it is inevitable. I will just have to take it as it comes. Barbara

[Alysia]

Hi Barbara.
I don't know anything about dialysis, but I already know you, and I know how strong you are, in all meannings, so I hope you can handle it and I hope it will help you.
please update us.
sending you lots of hugs and praying :hug1::hug1::hug1::hug1:

[Debbie C]

Barbara, I agree with Alysia, you have showed more strength in things that would bring a strong person down. I am sure you will get thru this fine like you do everything else. But I will say a prayer that you get into remission, but if not, that all your worries would have been for nothing. Take care and keep us posted. Hopefully someone else that went threw this can enlighten you more:hug2:

[Wegetarian]

I think Gliders might know about it, I know he has had kidney issues but can't remember if he had dialysis. He doesn't post that much but is a really nice guy, maybe you could PM him?

[gilders]

Hi Barbara.
I was on dialysis back when I initially started with WG. I had haemodialysis 3 times a week (Mon, Weds, Fri) and plasmapheresis twice a week (Tues and Thurs).
I did not have a permanent stent in my arm as it was hopeful that my kidneys would recover enough so that I would not need to be on dialysis for life.
I had what was called "lines". These were the size of a fairly large pencil or pen with 2 tubes coming out of the top (basically a super-sized cannula). These lines were implanted under local anesthetic. I had a couple in my groin and these went in fairly easily - scalpel to open me up, scalpel to open up large vein (might have been artery?) and then stitched back together. Unfortunately the ones in my groin didn't last long before the needed replacing. They got infected (I was completely immuno-suppressed). The next area they tried, which was a first for the hospital where I was staying, was just bellow my collar bone. This was not a pleasant experience as they really struggled to get it in place. I believe they were struggling to get it through some cartridge. It was very painful and tiring, BUT once in place these lines lasted much longer than the groin ones.

As for the dialysis. From what I remember I think also felt quite cold during and after and may have been hungry as well. I was told that I would feel much better after the dialysis with my nice, clean blood but never seemed to feel any benefit. Although I didn't feel any better after dialysis it was probably due to the fact that it wasn't just my kidneys that was the problem, my WG was really aggressive and I had lot's of other problems going on with my health.
During dialysis the machine would stop frequently due to my lines not working quite right. The nurse would fiddle around and eventually get it going again.
During dialysis there was nothing painful.
I have never been told that I will not be allowed on the donor list due to my WG. Have you been told this? I can see why I might never reach the top of a donor list as it would seem almost unfair to give a WG patient (who has kidney involvement) a kidney that might get "attacked" by a WG relapse/flare, over a healthy person who has has an accident that has damaged their kidney.

If you have any specific question about dialysis that I have missed, just ask. I'll try to remember, but I've not been on dialysis for 19 years:thumbsup: and I was SO ill at the time, my mind's a bit fuzzy.

[drz]

Haven't some of the users here got a kidney transplant after theirs was destroyed by Wegs. I suppose though they had to be in remission first, right? They were hesitant about even minor surgery for me till I was in a drug induced remission for a year. Part of it is also having a suppressed immune system that makes us a higher risk for infections.

[gilders]

Not sure if suppressed immune system should be an issue. Azathioprine is given to post op transplant patients to stopped their immune system rejecting the new organ.

[Barbara N]

Hi Barbara.
I was on dialysis back when I initially started with WG. I had haemodialysis 3 times a week (Mon, Weds, Fri) and plasmapheresis twice a week (Tues and Thurs).
I did not have a permanent stent in my arm as it was hopeful that my kidneys would recover enough so that I would not need to be on dialysis for life.
I had what was called "lines". These were the size of a fairly large pencil or pen with 2 tubes coming out of the top (basically a super-sized cannula). These lines were implanted under local anesthetic. I had a couple in my groin and these went in fairly easily - scalpel to open me up, scalpel to open up large vein (might have been artery?) and then stitched back together. Unfortunately the ones in my groin didn't last long before the needed replacing. They got infected (I was completely immuno-suppressed). The next area they tried, which was a first for the hospital where I was staying, was just bellow my collar bone. This was not a pleasant experience as they really struggled to get it in place. I believe they were struggling to get it through some cartridge. It was very painful and tiring, BUT once in place these lines lasted much longer than the groin ones.

As for the dialysis. From what I remember I think also felt quite cold during and after and may have been hungry as well. I was told that I would feel much better after the dialysis with my nice, clean blood but never seemed to feel any benefit. Although I didn't feel any better after dialysis it was probably due to the fact that it wasn't just my kidneys that was the problem, my WG was really aggressive and I had lot's of other problems going on with my health.
During dialysis the machine would stop frequently due to my lines not working quite right. The nurse would fiddle around and eventually get it going again.
During dialysis there was nothing painful.
I have never been told that I will not be allowed on the donor list due to my WG. Have you been told this? I can see why I might never reach the top of a donor list as it would seem almost unfair to give a WG patient (who has kidney involvement) a kidney that might get "attacked" by a WG relapse/flare, over a healthy person who has has an accident that has damaged their kidney.

If you have any specific question about dialysis that I have missed, just ask. I'll try to remember, but I've not been on dialysis for 19 years:thumbsup: and I was SO ill at the time, my mind's a bit fuzzy.

Hi gliders, Have you had no need to go back on dialysis? I had a bad day; I have a large cavern and no palate and this morning my mouth piece broke so I can't talk, eat drink. My day started 8:00am, hospital for some special blood tests. Rush to the dentist, won't get my plate back until tomorrow. really I am very lucky because the holiday season is starting and fiestas always come first.I couldn't take my medication orally so I had to go to another hospital and get them all in injection form if this little accident happened next week I would be screwed, all the doctors are substitute and don't know or care about your little problem, the ER is just about the same. fortunately for me everything worked everything worked surprisingly well and fast. I saw the WG doc today and he is changing just about everything. I have to be admitted and have some sort of cleansing of everything on a machine. I get RTX for free starting after I see the kidney specialist on January3, 2014 I am on a new imunsupressant I am still tapering 5mgs a week on Pred and am now at 35mgs. I still get to ride which helps me physically and mentally and it is just good healthy fun. I'll keep in touch and thanks and merry christmas, happy , positive and full of things you want to do pain free,just everything nice you can think of. Big hug, -Barbara

[gilders]

Hi Barbara. Sounds like you're having it really rough at the moment. I don't know why but today I've felt much better than I've felt for the last 2-3 months and a big improvement on the last fortnight. I'm not kidding myself that suddenly the pred and Aza have pushed this relapse into remission, after all it's been 1 good day in the last few months, but 'm still hopeful things might be about to improve.

I've not needed dialysis since I came off it 19 years ago. The quick version of what has happened over the years is that after my initial dialysis my kidney's improves significantly. I've had 4 or 5 relapses since and each time I've had a relapse my kidneys have been damaged more each time. The only exception being this current relapse which has not effected my kidney's which is great, but doesn't seem to be responding to the medication which isn't great.
My kidneys are borderline for dialysis and my specialist told me a few years ago that due to the poor level that they are at, they will eventually fail even if I never had a WG relapse. He is quite amazed how my kidney's have held on at this level for so many years. The fact that this relapse has not attacked my kidney's is somewhat almost miraculous.

I really hope that if you are having dialysis it will be to help your kidneys get through a relapse, as this will hopefully lead to your kidneys recovering enough so that you do not need to be on it for life (or until transplant).

I have found out that the EHIC health card that enables Europeans to receive NHS style emergency treatment throughout Europe includes Dialysis. This is greta news as although I could never afford to go back to the USA and pay for dialysis (when the time comes) I could still visit Spain.
I think the EHIC card should be available to you too, which would also entitle you to free dialysis in Europe should you need it in the future.

Good news that you're going to get RTX for free. I am likely to be starting something stronger in January as well and I think RTX would be best in my situation. I just hope there's no issues with being able to get it.

We're having 2 Christmases this year as my parents who always come on Christmas Day will be visiting my sister and family this year. Therefore we'll be having a mini-Christmas this Saturday as well!

Keep us all up to date with how you get on and have a great Christmas with the horses!

[Alysia]

Dear Barbara,
you are just amazing, continue to ride your horse with all this :thumbup: you are inspiring.
I am glad that you are going to get the rtx soon. I believe it will make big change for good for you. may the coming year be much better to you.
I am sorry for your bad day. sending you my love and my praying and big hug :hug2:
take care.

[Barbara N]

Hi Barbara.
I don't know anything about dialysis, but I already know you, and I know how strong you are, in all meannings, so I hope you can handle it and I hope it will help you.
please update us.
sending you lots of hugs and praying :hug1::hug1::hug1::hug1:

You are always so sweet Alysia, don't you ever feel down and depressed? You think of everyone and remember everyone's names. I will know a lot more next week because I will have finished with my tests and all of the doctors. They want to put me into the hospital for some kind of cleansing treatment before they start with dialysis or anything else. I am lucky I can get RTX for free here. What is an infusion like? I hope it puts me in remission, or at least helps slow things down. You take care of yourself and I AM SENDING YOU ALL OF MY POSITIVE ENERGY AND HUGS, love, Barbara

[Alysia]

You are always so sweet Alysia, don't you ever feel down and depressed? You think of everyone and remember everyone's names. I will know a lot more next week because I will have finished with my tests and all of the doctors. They want to put me into the hospital for some kind of cleansing treatment before they start with dialysis or anything else. I am lucky I can get RTX for free here. What is an infusion like? I hope it puts me in remission, or at least helps slow things down. You take care of yourself and I AM SENDING YOU ALL OF MY POSITIVE ENERGY AND HUGS, love, Barbara

Thank you very much, Barbara, you are sweet and kind as well :hug1:
of course I am depressed and scared a lot. going twice a week to my psychologist to "evacuate" the tough feelings.
about the rtx: it is very simple: you get before it some steroids to prevent alergic reaction. and then you go: it is long day, about 7 hours to be with the infusion. if all goes well, you can just sleep it. it makes you sleepy. they will check your BP every half an hour. not many "events". I had low BP, so I drank a lot and ate chocolate.
I think that it is a good idea to be at the hospital for couple of days, so they will treat you in the best way possible.
good luck and update us.

[Il_Randyb]

Wow another horse person!!!!! We need to talk Barbara :-)

I am currently doing peritoneal dialysis - six months now
and I am a horse person so we should exchange phone numbers and chat (when you can talk that is)

Randy

[Debbie C]

Barbara,sorry to hear about the problem you had with your jaw. Glad to hear you were able to get your meds though. Hope everything goes well for you next week and glad to hear you are still riding.

[Barbara N]

Haven't some of the users here got a kidney transplant after theirs was destroyed by Wegs. I suppose though they had to be in remission first, right? They were hesitant about even minor surgery for me till I was in a drug induced remission for a year. Part of it is also having a suppressed immune system that makes us a higher risk for infections.

They say with WG I don't qualify for a transplant and I agree with them after I see the destruction of all of the surgery >I have had done and then eaten away. They all seem to be moving into fast action and <I am getting a bit scared. I guess or hope that they wait until after the holidays before they start anything.

[Barbara N]

Wow another horse person!!!!! We need to talk Barbara :-)

I am currently doing peritoneal dialysis - six months now
and I am a horse person so we should exchange phone numbers and chat (when you can talk that is)

Randy

Where do you live, Randy? Send me your e-mail and <I will send you some snaps of my magic horse. She is a Friesian and is what keeps me going. For 20 years I ran a center for physically disablyed children and hippotherapy but now I am just concentrating on myself, trying to get better. I got off of the board of directors and now just volunteer when I can. Us, horsey people can't get enough of chating about our horses. What do you have? I used to have a farm school and all of the animals were raised by hand, now I have a 7 year old Friesian who lived in the mountains to breed,, so didn't have any kind of contact with people, but she is coming along great. I actually rode he off the property and into the campo last week. It was more of a goal for me than for her. I am sure we will be chating a lot more in the coming days. Nice to meet you Randy. Take care and stay healthy and positive. Is the dialysis painful? sorry to ask so many questions but I am really scared.

[Barbara N]

Thank you very much, Barbara, you are sweet and kind as well :hug1:
of course I am depressed and scared a lot. going twice a week to my psychologist to "evacuate" the tough feelings.
about the rtx: it is very simple: you get before it some steroids to prevent alergic reaction. and then you go: it is long day, about 7 hours to be with the infusion. if all goes well, you can just sleep it. it makes you sleepy. they will check your BP every half an hour. not many "events". I had low BP, so I drank a lot and ate chocolate.
I think that it is a good idea to be at the hospital for couple of days, so they will treat you in the best way possible.
good luck and update us.

I didn't know it took so long. They said I would be checked in to the hospital for a few days so that they could keep an eye on everything. I have a very big appitite but sometimes the food just isn't edible. A big hug from Spain, Barbara

[Barbara N]

Barbara,sorry to hear about the problem you had with your jaw. Glad to hear you were able to get your meds though. Hope everything goes well for you next week and glad to hear you are still riding.

Thanks Deb. The pain seems to be coming back to my facial bones again so they are giving me another Ketamine treatment, in the beginning of February. I was supposed to have it in December but I was in the hospital because of the coma and bladder infection. My normal one didn't seem to work this time, I had no reaction. They were very surprised and don't quite understand so I will have it IV this time. How are you coping? Are you going to have a big family Christmas. Our kids and grand kids are all in the states so we will have a very quite Christmas, just the 2 of us. I think it will be the first time, but I will try and make it one to remember. Everyday counts now. Happy holidays, Barbara

[Alysia]

They all seem to be moving into fast action and <I am getting a bit scared. I guess or hope that they wait until after the holidays before they start anything.
Hi Barbara. I think that is it good that they are moving into action, and it is better before the holidays. the sooner the better, because it means that you will feel better sooner. and it also means that they care about you and want to do the best for you. you are in good hands, it seems.
sending you lots of hugs. take care.

[Debbie C]

Good luck to you on Monday,Barbara. My prayers will be with you that you don't have to go on dialysis.Tale care and have a Merry Christmas:hug2:

[JenG]

Barbara,
When I was diagnosed upon renal failure 14 years ago I went on dialysis for 10 months prior to receiving a transplant. I received my dialysis treatments 3 days a week, each session was a three hour treatment. I did not have a fistula put in as my docs were hoping to transplant in the near future. I had ports as described in earlier posts. This is what I can share regarding dialysis:
1) If you are placed on a renal diet and fluid restrictions, follow them strictly. The amount of fluid that is drawn off of you during treatments is determined by your "base" weight. Many dialysis patients don't follow good health rules so when they have their fluid removed, if they had say, too much salt, the dialysis machine will draw fluid out of muscles creating cramping and pain. Many patients are given meds to alleviate this if I remember. I never had any of these issues as I was extremely compliant with my diet intake.
2) If you don't already, you may incur some blood pressure issues. I suffered from blood pressure migraines for quite a while. It took the docs a while to figure me out. They tried to give me heavy pain meds rather than manage my blood pressure. I would hope that you already have a team of good docs who will take care of this for you. The low blood pressure may also by why so many people say they are "cold" after treatments...
3.) I hadn't though of this at the time, but now I would ask about your meds being dialyzed out of your system and potentially not being as effective as you need them to be...you may need to readjust your med schedule to better fit your dialysis schedule. On the other hand, you could also be over medicated if meds are processed through your kidneys which are not functioning high enough to cleanse you properly. All of the meds I take have to be cleared through my intestines and liver, not kidney.

I can tell you that I had no pain during or after treatments. I always felt better after treatments as I was in complete renal failure and needed to be cleansed. There was always a 3 day wait (as our weeks are inconveniently 7 days, not 6) over the weekend and I always looked forward to Monday's session as I could tell I was highly uremic, fluid filled and overdue for a treatment. Most of the other patients receiving treatment were much worse off then I was and it helped put things into perspective to me. I would on occasion end up with very low blood pressure after treatments if they took too much fluid off of my body. It has been many, many years but these are the highlights I remember from hemodialysis treatments.

Jennifer

[gilders]

Great reply Jennifer. Good info there!

[Debbie C]

That was a good summary..I hope all is well with your new kidney.

[Barbara N]

Everyone put such great input on here and helpful information. It is all a bit scary when you haven't been through it before. I am not a candidate for a transplant so I will be on dialysis for the rest of my life and this is something I have been struggling with. Do I want to do this the rest of my life with no hope for change? It may not be a hard choice for some people but it is for me. I still have a few months to ponder over the pros and cons of each side, so the more info you send me the better prepared I will be to make this decision.

[Texastatoogal]

I will continue it keep you in my prayers. You said you have family in Tahlequah, not sure if I spelled that right. But I look forward to meeting you someday. I remember my dad when he first started it. I was 14. So I don't recall a lot. But I know he did experience some depression in the beginning. It was a lot to take in. I don't ever remember him being sick and then all of a sudden he was having to do this. Years later I found out about his diabetes that he never took care of. Which led to his kidney problem. This was back in 1986. It took a bit of time for the adjustment. But he got used to it. I believe for a dialysis patient he lasted 8-10 years on it. At that time it was a pretty long time. He still was able to do the things he enjoyed. Except the drinking..that he had to cut down a lot on. I pray for peace for you. I know it's not a decision to take lightly. But you seem to have such great strength. I know you can get through this. Do you have any family in Spain with you?

[gilders]

Everyone put such great input on here and helpful information. It is all a bit scary when you haven't been through it before. I am not a candidate for a transplant so I will be on dialysis for the rest of my life and this is something I have been struggling with. Do I want to do this the rest of my life with no hope for change? It may not be a hard choice for some people but it is for me. I still have a few months to ponder over the pros and cons of each side, so the more info you send me the better prepared I will be to make this decision.

I'm not sure I understand when you say you have a choice?
I was on dialysis when my kidneys failed to such an extent that I would have died without dialysis.
My kidneys are currently borderline dialysis and will eventually drop off to an amount that will require permanent dialysis.
As far as I'm aware I will only be back on dialysis when my kidneys are so poor I would die without dialysis.

Are your kidneys in a state where your body is suffering, but in no immediate danger of death, which gives you a choice?
I'm sure you will only be given the option of dialysis if you need it. Therefore I'd say go for it. There's no life threatening surgery involved.

[Alysia]

Hi Barbara,
I want to echo Gilders's questions....:confused1:
and to send you my prayers and lots of hugs :hug2: :hug2: :hug2:
take care and please listen to your docs.

[JenG]

Barbara,
I too am not certain that I understand when you say that dialysis is a choice. You could opt for Peritoneal Dialysis over Hemodialysis where you can connect to your machine over night and run some quick exchanges during the day--this should allow you to not have diet or fluid restrictions. I am also thinking that you may be able to get a Hemodialysis machine for your home where you may be able to have more frequent but less lengthy dialysis sessions. In the meantime, what are you doing to help keep your kidneys as healthy as you can?

As for the cost of dialysis, here, in the US (14 years ago anyway), as soon as you are started on dialysis you automatically qualify for Medicaid/medicare as your primary insurance so there isn't a financial burden.

[Barbara N]

Barbara, I agree with Alysia, you have showed more strength in things that would bring a strong person down. I am sure you will get thru this fine like you do everything else. But I will say a prayer that you get into remission, but if not, that all your worries would have been for nothing. Take care and keep us posted. Hopefully someone else that went threw this can enlighten you more:hug2:

Thanks Debra C

[Alysia]

Dear Barbara.
I just want you to know that I think about you, and pray for you and send you lots of hugs. take care.

[mishb]

Dear Barbara.
I just want you to know that I think about you, and pray for you and send you lots of hugs. take care.


Me too Barbara.
There are many people on here that I look to see if they have been on, or have posted something - and you dear lady, are one of them.
I worry if I haven't seen you around for awhile. :crying:

I hope, if you ended up in hospital for any length of time (and I pray that you don't) that your husband would come back on and let us know what is happening, when he got a chance.

I know that it is not my body, but I wouldn't hesitate to get the dialysis done. Surely it has to help and should make you feel a bit better.

Please take care

[Barbara N]

Thanks Jen, all of that is very useful. I just don't have any idea of what to expect and it is scary. I hate the idea of over an hour drive to the hospital, early in the morning and a ride home at night because, I lost my license when I was blind for a year, due to WG, and I can't get it back so I am dependent on someone to drive me and wait or come back and pick me up. That is a lot every week for the rest of my life, and since I can't have a transplant there is nothing to hope for in the future. I don't know if our wonky old car can make all of those trips. I am hoping to start RTX and maybe it will put me in remission or anything that can give me a ray of hope for some other treatment besides dialysis. I will keep posted how things go and what decisions I make along the way. I am so happy to have found this site, it helps me in so many ways and I meet such nice and helpful people. Thanks again for all of your input, it all helps. Barbara

[Barbara N]

Don't worry, Lenox will post something if I have to stay in the hospital so that you all know what is happening. I will be going to hospital soon, for some sort of cleansing before they start all of the treatments and possible dialysis. It is some sort of all day IV treatment but I have to stay in the hospital for several days to make sure they didn't take to much or to little. I am hoping for as little hospital time as possible. Barbara

[Barbara N]

For all that they say about Spain, there is a ton of paperwork but almost everything is free. As an American I get more benefits than my husband, who is a Brit. They are incredibly inept but that is what gives all of theses people there jobs. It can be really frustrating but I couldn't afford to live in america now , with all of my medical expenses. Plus the market is so bad, we could never sell our house. It is a huge old country house with enourmous gardens. way too much for the two of us to keep up. It was wonderful when the children were all here but with two, growing older people, the work is to much for us to keep it up or even just do the daily up keep. We can't move so we have to make the best of what we have and what we have is beautiful, just too big.

[Alysia]

Hi Barbara.
I had a neighbour who was doing home dialysis couple of times a week. her husband was helping her. I don't know exactly how she did it. but ask your docs about such an option.
when are you going to the hospital ?
I am sending to you lots of hugs and prayers and love.
I hope that they can help you to go back riding peacfully on your beautiful horse.
take care, listen to your docs and update us.

[Debbie C]

Good luck Barbara, I tell am thinking of you and sending you prayers that all will be fine and hopefully you will be able to get rtx soon

[Barbara N]

How was it that you got to get off dialysis? I didn't know there was a chance that it might be temporary. Yes, I was told that I couldn't be on the donor list because of the WG, it would just destroy the new organ when a healthy person who just lost a kidney due to accident would do much better. My kidney is down at the 20% mark and I don't think you can fix that. They told me that what is dead is dead and there is no way to bring it back to life. If it gets any lower I can't live and will have to go on dialysis or die those are my choices. It means dialysis the rest of my life with no hope for change.I will find out everything on Monday when I see the frenologist (sp). Thanks for your input. Barbara

[Barbara N]

Hi Alysia, I am still riding and hope to never stop, it makes me feel so much better. I will be going to the hospital for a few days in about a week or two and then after we have decided about the dialysis I will know more and that will be this Monday. I am a little anxious ans a little nervous because I don't know what I want the out come to be. If there is any way I can maintain with this amount of kidney I will be thrilled but the doctors didn't seem very positive about that. Thanks for all of your hugs and prayers, they really help.

[Alysia]

Hi Barabara.
I love you and I wish you the best :hug1:
I think that if they can get your wg into remision, by rtx, then transplant can be possible because the wg will not detroy the new kidney. there are weggies with transplant kidneys. maybe you should find someone who can donate one to you, when the time come.
also ask them about dyalisis at home. can be more comfortble.
I am glad that you are riding your horse all the way. it means that you are very strong, body and soul, and can fight whatever will come.
my heart is with you. stay strong and update us.
good luck.

[gilders]

Barbara, when you've mentioned that you can't decide whether to have dialysis or not I was confused. But reading some of your more recent replies sounds like you are choosing between dialysis, or no dialysis and dying. If that's the case then it's an easy choice - have dialysis, live and ride your horse!

Your kidneys are in a very similar situation as mine, in fact mine are less than 20%. It is true that once your kidneys have reached such low abilities that they will eventually fail to an extent that permanent dialysis will be required, or transplant. I can only speak for how donated organs are offered in the UK, but WG does't rule out a transplant completely. Admittedly a young, healthy person who has had an accident would be given priority over people such as you and me, but there is other things that can push you nearer the top of "the list" such as how long you've been on the waiting list. You may even have a rare genetic pattern that only you match with a donor, in this instance you would get the donor kidney if it's not suitable for anyone else - a long shot, but you never know.

Another option, if anyone is willing, is for someone to offer you their kidney. If their kidney is not a match (which is quite likely) they can register their kidney and when another couple has a match for your kidney, your donor swaps with their donor. This is the route that my wife has offered to do for me when the time comes.

If your kidneys have been at the 20% level for a long period then that is their level and dialysis won't help them regenerate to an healthy level. Dialysis can be used on a short term basis to help kidneys recover when the kidneys are going through an acute event, such as trauma or during active Wegener's.

[JenG]

Hello Barbara,
Here in the states we transplant through Wegener's. I lost my kidneys before I could be officially diagnosed and was on dialysis for 10 months until I was stable/healthy enough for transplant. My father donated one of his kidneys to me (13 years ago!). I am/have been flaring and also now have an older transplanted kidney. I have been told that I can have another transplant when I need one. My kidney function is fluctuating between 25%-30% this summer/fall. I know when I get down to 20% I can be put on the list. As long as Wegener's is not actively flaring we transplant in the US. One of the transplant suppression drugs I am on is Cellcept--which has kept my Weg's in remission until recently. Prednisone and RTX are also used to treat kidney rejection episodes so they are not a problem if you need to go back on them post transplant. I did ask if a transplant surgery could ignite a flare due to the stress of surgery but was told that with the dose of prednisone post transplant that probably would not be a problem.
In the meantime, I do everything possible to keep my transplanted kidney happy--(it likes the prednisone I am on for my flare!). I have pretty much cut out beef and pork, follow an alkaline diet, eat a lot less meat proteins, am trying to add more anti inflammatory foods, exercise when possible and am VERY careful about what medications I take to make certain they aren't processed through my kidney. I am also on Lisinopril for blood pressure--my nephrologist says this is a very "kidney protective" medication as it also lowers the pressures in the vessels in my kidney so it doesn't have to work so hard.
Perhaps one of your kids could offer you a kidney and you could have the surgery done over here...
Have you checked with other transplant centers in Spain? Maybe the one that your nephrologist is associated with doesn't transplant Wegener's patients but others might? Going on dialysis doesn't sound pleasant but if your body is toxic you will need it....I know it is tough to make decisions when you don't feel well...and I'm guessing you don't realize how unwell you truly feel as your body is trying to adjust for you....but if you went on dialysis and started to feel better you may find you have the energy to pursue and find a transplant option!
I will keep praying for you (extra hard this weekend!) as you try to come to the decision that you feel is best for you.

Jen G

[mishb]

Barbara,
Jen and Pete certainly know what they are talking about in regards to the kidneys.
Also, Rebecca had a transplant with a kidney donated by her friend - if I remember correctly.
It is possible for people with WG, to have a transplant.

I'm also with Pete - if you only have the two options, dialysis or die, please don't hesitate any longer........have the dialysis.
We all need you here with us, and so does your husband and children, grandchildren - and your horse.

Lots of hugs and prayers coming your way as you head down to the hospital, for more consultations

[Barbara N]

Wow another horse person!!!!! We need to talk Barbara :-)

I am currently doing peritoneal dialysis - six months now
and I am a horse person so we should exchange phone numbers and chat (when you can talk that is)

Randy

Talk to me Randy, I want to know all about your dialysis, your horses and you in general. I have been riding since >I was 5 and have always had my own horse until I got this horrible disease and I had to fing homes for alal of my animals because I couldn't take care of them because of so much hospital time. Mine was doulbed becauase I was also having reconstructive surgry from a shattered nose from a horse accident. I didn't fall or anything I was just grooming and the horse swung it's head around and side swiped me. I have the horse of my dreams, she is a Friesian mare about 7 years old and had never been ridden until she was given to me last year. It would be much easier to talk on e-mail mine is [email protected] I hope things start getting better for me because that is the one thing that worries me,, not being able to care for or ride my horse. She is the best doctor I have ever had and I have done lots of research on my own that proves how riding can improve your health. I hope we talk soon, Barbara