Nephrectomy

[Christy]

Hi all--- hope everyone is having a peaceful holiday weekend. As for us, we are having problems with Aiden's blood pressure. It has been ongoing but he is now on 3 BP meds (Enalapril, Atenolol, and Norvasc) with high bp's despite the meds and dialysis. In the past we were able to control it when it got out of hand by bumping his dialysis fluid concentration up from 2.0 to 2.5% but even that doesn't seem to help now. After a UF of 535 last night and all 3 BP meds his bp was still 136/89 this morning and even higher last night. His nephrologist does not feel comfortable leaving him on 2.5% for the long-term because he feels that it may damage his membrane on the higher concentration and end up costing us in the long run if we are unable to continue PD. He is asking us to come in next week to discuss a nephrectomy.

This has been mentioned before as he feels that the kidneys are releasing Renin still and causing his BP to be elevated. Isn't that about right that the ONLY thing the kidneys want to do right now is something that is harmful to my little man.

It just breaks my heart to think of yet another surgery for him. This will be his 9th surgical procedure in 2 years.

I'm not sure why I am so opposed to the idea of a nephrectomy but it just seems so final. Have any of you or your family members had experience with this? What was the outcome? It seems like such a drastic decision. I want to make sure there is absolutely nothing else that we can do before we jump to a major surgery.

Any input/advice is greatly appreciated--

Thanks--
Christy

[Cheryl Biermann]

Third attempt at getting an answer for you, curse this computer! Nathan's doctors tried several things, they increased his fill volumes, added cycles, went as high as 2 bags of 2.5 and 2 bags of 4.25. They put him in the hospital to try to see if changing the bed's height would help. They got him a longer pole for the drain bag. Nothing worked as his dialysis was less and less effective, of course the blood pressure was out of control. They considered a nephrectomy. We made a terrible discovery, a nephrectomy would have been the BEST ROUTE to take. They decided, because of multiple abdominal surgeries, to do an embulization (sp?). Not removing the kidneys but blocking the blood flow to them, causing them to die. DO NOT go that route...Nathan was the only patient at that time to have the horrible experience with embulization, researcher and doctors thinks it is because of the incredible amount of toxins in the kidneys affected by AHUS. He coded, he seized for hours and he had lingering neurological effects because of the surgery. Surgery is scary, but so is this whole stupid disease. We wish we would have had the nephrectomy.

[Phyllis Ann Talbot]

Hey there Christy - weird - sounds familiar - we've also been having some bp issues - Cheryl has more experience this but we have been using 2.5% on Hyde all along (that's what's considered the 'green' solution for us). We've actually been using a mix of 2.5 and 4.25% for the last week to get more fluid off and even have used 4.25% entirely a few times. Our dr's are thinking that Hyde's been actually getting more fluid on VERY slowly over the last couple of mths (maybe not gaining quite as much 'real' weight as we thought) so we've been pretty aggressive with the stronger fluid and also almost pretending we are on hemo with his fluid intake - REALLY watched it this last week - and his 'dry' weight - or first thing in the AM weight is almost a kilo lower than it had been 2 weeks ago and his blood pressure seems to have improved some. hoping we can get him back on 2.5% and watch his fluids more to keep him there - but not sure. Just wanted to mention this - maybe worth a shot ....Good luck to ya'll!!!!

[Donna Kolp]

Just some thoughts on PD...

Over the years, Jonathan also had blood pressure issues, fluid retention, etc, and the Dr.'s added cycles, fill volumes, last drain volume, the whole thing. What I noticed that did the trick is really limiting fluids and sodium. I documented every ounce of fluid that Jonathan drank, to the point where I could tell you how much was in a ice cube. I put a chart on the fridge, and anytime he got something to drink, it went on there. I also added up sodium on every meal. I know this is hard, especially for younger children, but I can tell you that it paid off. Eventually, Jonathan was only on 2 blood pressure medications, Captopril and the Catapres patch. Since Jonathan was on PD for 12 1/2 years, I also have learned that the higher dextrose used over and over can cause some calcification. Now, since Jonathan is on Hemo, he is following his regular PD regimen, (fluid Intake), and gains only 1 kilo between treatments, and no more than 1.5 over the weekend. I see that my "miser" on the fluid all those years ago has paid off, since he really doesn't notice a change going from PD to Hemo.
It is a balancing act, and at times extremely frustrating.
I hope that this helps. Just like to pass along lessons learned :)

[Joy Lewis O'Brien]

Christy, I found an article from '96 about the success of bilateral nephrectomy in plasma resistant cases. I hope it's useful to you!
Joy

[Heather Still]

I don't have alot to offer about dialysis and nephrectomy. I do know that it was discussed when Ryan was first diagnosed, but we were able to stabalize his bp - with alot of meds. He is on Lisinopril, Norvasc, Coreg, and has a Catapres patch. He is also on Hydrochlorothiazide as a diuretic. He was on Minoxidil at one point, but we were able to stop that one. The last time I discussed with Ryan's doc's our plan when the time comes for him to be on dialysis is to do a nephrectomy. They feel that would be the best way to give his body a break.

[Christy]

Ugh---Hyde and Aiden need to quit conspiring to give their mothers chest pain! ; ) I personally think Aiden is a little on the heavy side too...we are back to 12 hours for the week (at least until our visit with Dr. Quan on Thursday) but he only let us do one night on 2.5 (green) he is a real stickler on that higher concentration/calcification thing....i understand but it's still frustrating! Usually Aiden weighs about 12.1 or 12.2 post-dialysis and 12.5-12.7 pre-dialysis....this past week he has been as high as 13.2 pre-dialysis and 12.7ish post....hard for me to believe he gained around 2 lbs of "real" weight in a couple of weeks....slowly we are getting closer to normal and his bp's are improving. How's Hyde doing?

Phyllis Ann Talbot said:

Hey there Christy - weird - sounds familiar - we've also been having some bp issues - Cheryl has more experience this but we have been using 2.5% on Hyde all along (that's what's considered the 'green' solution for us). We've actually been using a mix of 2.5 and 4.25% for the last week to get more fluid off and even have used 4.25% entirely a few times. Our dr's are thinking that Hyde's been actually getting more fluid on VERY slowly over the last couple of mths (maybe not gaining quite as much 'real' weight as we thought) so we've been pretty aggressive with the stronger fluid and also almost pretending we are on hemo with his fluid intake - REALLY watched it this last week - and his 'dry' weight - or first thing in the AM weight is almost a kilo lower than it had been 2 weeks ago and his blood pressure seems to have improved some. hoping we can get him back on 2.5% and watch his fluids more to keep him there - but not sure. Just wanted to mention this - maybe worth a shot ....Good luck to ya'll!!!!

[Christy]

Yikes...bless him, that is a lot of bp meds!

Heather Still said:

I don't have alot to offer about dialysis and nephrectomy. I do know that it was discussed when Ryan was first diagnosed, but we were able to stabalize his bp - with alot of meds. He is on Lisinopril, Norvasc, Coreg, and has a Catapres patch. He is also on Hydrochlorothiazide as a diuretic. He was on Minoxidil at one point, but we were able to stop that one. The last time I discussed with Ryan's doc's our plan when the time comes for him to be on dialysis is to do a nephrectomy. They feel that would be the best way to give his body a break.

[Christy]

hmmmm....I should try this...unfortunately with a toddler all he wants to eat 1/2 the time are hotdogs and McDonald's nuggets and fries! Sodium nightmare!

Donna Kolp said:

Just some thoughts on PD...

Over the years, Jonathan also had blood pressure issues, fluid retention, etc, and the Dr.'s added cycles, fill volumes, last drain volume, the whole thing. What I noticed that did the trick is really limiting fluids and sodium. I documented every ounce of fluid that Jonathan drank, to the point where I could tell you how much was in a ice cube. I put a chart on the fridge, and anytime he got something to drink, it went on there. I also added up sodium on every meal. I know this is hard, especially for younger children, but I can tell you that it paid off. Eventually, Jonathan was only on 2 blood pressure medications, Captopril and the Catapres patch. Since Jonathan was on PD for 12 1/2 years, I also have learned that the higher dextrose used over and over can cause some calcification. Now, since Jonathan is on Hemo, he is following his regular PD regimen, (fluid Intake), and gains only 1 kilo between treatments, and no more than 1.5 over the weekend. I see that my "miser" on the fluid all those years ago has paid off, since he really doesn't notice a change going from PD to Hemo.
It is a balancing act, and at times extremely frustrating.
I hope that this helps. Just like to pass along lessons learned :)

[Christy]

Thanks Cheryl----we will definitely NOT choose that route! Scary!

Cheryl Christine Pallme Biermann said:

Third attempt at getting an answer for you, curse this computer! Nathan's doctors tried several things, they increased his fill volumes, added cycles, went as high as 2 bags of 2.5 and 2 bags of 4.25. They put him in the hospital to try to see if changing the bed's height would help. They got him a longer pole for the drain bag. Nothing worked as his dialysis was less and less effective, of course the blood pressure was out of control. They considered a nephrectomy. We made a terrible discovery, a nephrectomy would have been the BEST ROUTE to take. They decided, because of multiple abdominal surgeries, to do an embulization (sp?). Not removing the kidneys but blocking the blood flow to them, causing them to die. DO NOT go that route...Nathan was the only patient at that time to have the horrible experience with embulization, researcher and doctors thinks it is because of the incredible amount of toxins in the kidneys affected by AHUS. He coded, he seized for hours and he had lingering neurological effects because of the surgery. Surgery is scary, but so is this whole stupid disease. We wish we would have had the nephrectomy.

[Colette Ann Frysz]

Christy,

Yes I have had to experience this twice. Once when Jessica was one year old. We were told by her nephrologist at the time that she could suffer a severe stroke or we could remove her kidneys. At the time she was in the ICU and had pressures well over 200/100 with iv blood pressure medicine. We opted for the removal of the kidneys. It was a very agonizing decision for me. I didn't know if it was the right thing to do but it seemed the most logical given all the circumstances. I used the verse in the Bible where heaven is discussed. It goes "if your right eye should stop you from going to heaven then cut it out" etc, etc. That is the only way I could emotionally justify it.

The second time happened when Jessica was eleven years old and she had gotten her first and only transplant. Nine days after the transplant we were told that hemolysis was occurring. Atypical HUS reared its ugly head and killed the transplant. We were told she could wait to have the organ removed and we felt there was no point so it got removed while she was in the hospital for the transplant. That was devastating as well because it took away a great deal of hope. We had to rebuild with nothing and carry on our lives as usual. So yes I truly know your agony.

[Donna Kolp]

Oh ya!!! I hear ya! You can ask them for no salt on the fries! I used to do that when Jonathan was little...He never knew the difference!! Sneaky Mom!!! And as far as hot dogs....Boar's Head, Skinless Beef hot dogs, only 350mg of sodium!!
Good luck :)

Christy said:

hmmmm....I should try this...unfortunately with a toddler all he wants to eat 1/2 the time are hotdogs and McDonald's nuggets and fries! Sodium nightmare!

Donna Kolp said:

Just some thoughts on PD...

Over the years, Jonathan also had blood pressure issues, fluid retention, etc, and the Dr.'s added cycles, fill volumes, last drain volume, the whole thing. What I noticed that did the trick is really limiting fluids and sodium. I documented every ounce of fluid that Jonathan drank, to the point where I could tell you how much was in a ice cube. I put a chart on the fridge, and anytime he got something to drink, it went on there. I also added up sodium on every meal. I know this is hard, especially for younger children, but I can tell you that it paid off. Eventually, Jonathan was only on 2 blood pressure medications, Captopril and the Catapres patch. Since Jonathan was on PD for 12 1/2 years, I also have learned that the higher dextrose used over and over can cause some calcification. Now, since Jonathan is on Hemo, he is following his regular PD regimen, (fluid Intake), and gains only 1 kilo between treatments, and no more than 1.5 over the weekend. I see that my "miser" on the fluid all those years ago has paid off, since he really doesn't notice a change going from PD to Hemo.
It is a balancing act, and at times extremely frustrating.
I hope that this helps. Just like to pass along lessons learned :)