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| | From:  Judge87113 (Original Message) | Sent: 8/27/2007 6:47 PM |
Hi,
I've been lurking on this forum for several years now, and I thought it's finaly time to write something, since ESRD has arrived and everything is in place to start dialysis when needed.
I was diagnosed with PKD at the age of 22, when it was first discovered with my mother. At that time - 1983 - only little was known on this decease and there was no internet, so my sole source of information was my neph, who was not very keen on answering any questions. So I kept a healthy lifestyle, did some sports, never smoked and only drank occasionally. Oh, I loved to cook also.
Every two year I visited my neph, who is a professor at a university hospital in Antwerp, which meant my file was examined by an assistent. I thought I was doing OK, but finaly in 2003 I had a ruptured cyst so I ended up in hospital for 4 days to receive a general checkup: high BP and less then 40 % kidney left. So I was put on two BP meds which resulted in a normal BP after some days. No other medication or no other information on how I had to live my life from now on.
That's when I decided to take my treatment in my own hands, so I started searching the internet for all information on PKD I could find. That's how I found this site. Reading some of the messages convinced me it was necessary to look for another neph (I asked them some questions about PKD, food, protein, etc. and they couldn't answer me - LOL).
I see my new neph every 3 months for a general checkup. He knows a lot about PKD and takes time for his patients to answer any questions they might have. He's working in a smaller hospital in a team of 4 neph's, which is ideal for me.
So now at 48 I'm nearing the final stage. Last month I had all the tests done for a transplant, and the result is that I'm an excellent candidate. Two weeks ago I had my AV fistula done in the same hospital, and it seems to be doing quite good (I hear the banging even in my sleep).
My diet is normal for any kidney patient: low on protein (0.8 gr/kg) and potassium, mostly fish and vegetarian. I take an iron pill every day, vit. D every two weeks, and have been on epo one a week since July which gives me more stamina. I feel lucky for not having any pain, although my kidneys measure 25 by 10 cm.
Dialysis is expected somewhere next year. We'll see, I'm trying to remain positive about it.
Finaly I also wanted to say thanks to all the admins here and to all people who make this wonderfull site possible.
Judge |
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about time you stopped lurking - I wonder if you hold the record or if there are other lurkers out there even longer. if so, time to share some of what you learned with the rest of us. I guess you are from Belgium and I wonder if you are familiar withe the European group, led by Hans from the Netherlands. a "normal" diet for a kidney patient is not necessarily the best thing for a PKD patient. the best way to follow a healthy diet is to follow a healthy diet, all things in moderation UNLESS your labs indicate differently. you mention low potassium which is indicated if your potassium is too high, otherwise you may not be helping yourself. low protein can cause other problems such as low iron and a lack of amino acids. there is no evidence that protein affects cyst growth. it is necessary to have enough protein in your diet, without overdoing it, to keep up your strength and your iron stores. it is much more important to limit your sodium and drink plenty of water, assuming you are passing sufficient urine. good luck and keep us informed. you lurked long enough. |
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| | | From: pkdLin | Sent: 8/27/2007 10:40 PM |
For goodness sake why lurk? It was hard for me to write that first post, or to join in chats, but once I did there was no stopping me.
It was just before my 47th birthday that I started dialysis. I did whatever possible through the years to hold off the inevitable. Looking back though I think knowing what I do now that I could've and should've done even better in regards to hypertension. There are better drugs now and more is known. My bp was again creeping up so I lost some weight and now it's gone back down to manageable levels without hardly any medication and I'm better able to be more active which benefits me greatly. I hope you decide to not lurk anymore! Lin. |
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LOL - lurking has its benefits. But you're right, why do it when you can bring your experience to the group.
My diet isn't really a diet, except for the fact that I'm looking for food with low or moderate potassium and stay away from the high potassium containing food. Alll according to the lab results. But I will enjoy a good tomato now and then, as my dieticien told me last year all things have to be balanced.
I agree on the protein: you need at least 80 % of the amount a normal person would have. I read the book "Coping with Kidney Disease: A 12-Step Treatment Program to Help You Avoid Dialysis" by Mackenzie Walser and Betsy Thorpe, who states you can have even less protein, but when I asked my neph wasn't very keen on following these guidelines.
Clearly I'm doing fine; a few weeks ago I was on holiday in the Italian Dolomites, and I was very happy I could still walk the whole day, up and down the mountain. I even outrun my wife! Exercise is good for you!
Pierre |
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| | | From: barb | Sent: 8/28/2007 5:58 PM |
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Judge, I'm glad that you recognized that your first neph was a jerk and that you took matters into your own hands. Good luck to you with dialysis.
Barb
Get a sneak peek of the all-new AOL.com. |
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Time for an update I guess... I just received an email from my neph telling me I have been accepted on the list for a transplant. Still doing great atm.
Last month I had a meeting with the transplant team and it seems I will be a good patient. They informed me that I have a very small chance to have a call within the first 6 months in case a donor is found with the same bloodtype etc., after which it can take up to 2 years before I will be called in.
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Congrats! Please stay well and healthy (and
take care of any of the things they recommend, now rather than later). And
good luck! Please keep us updated!
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Judge, Best of luck with the transplant! Hopefully the phone will ring soon! Ruth |
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| | | From: KatieO | Sent: 10/30/2007 3:24 PM |
Hi Pierre If you can find a living donor from someone you know, friend or family, that could work out quite well for you. Rest assured though that even if you have to wait up to 2 years for a kidney once placed on the list that is still a very short time compared to many places! |
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Well... it's time for an update I guess...
Last week on december 6th I went to see my neph to have my regular 3-monthly checkup, and he asked me how I felt. I felt good considering PKD, but all was still well, or so I thought.
He didn't agree, according to the labresults (GFR 10, creatinine 5.8) and suggested that dialysis should be started soon in order to stay in good condition.
So I will have my first dialysis on december 18th in the morning, I'll start with 2 hours, and from then on we'll see what will happen, and how long I'll need.
Xmas comes early this year.
Pierre
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sorry things have progressed to the point you will need dialysis but I think you will find the reality of dialysis nowhere near as bad as the anticipation of it. please keep in mind that if you are producing ample urine you do not need fluid removed. it may be hard to convince staff at the dialysis center of this but if they remove too much fluid you may experience a drop in blood pressure and severe cramps. enlist your doctor's help in this. good luck and let us know how it goes. |
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| | | From: barb | Sent: 12/11/2007 3:07 AM |
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Pierre, good luck with the dialysis.. I'm sure that your doctor is correct and you'll feel better after a few sessions.
Barb
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