Dialysis

[Phyllis Ann Talbot]

Hi there - started this forum on dialysis - for now will include both PD and Hemo. Our son Hyde will be 3 in July of this year and he's currentle been on PD for about a year exactly. Prior to that we were on hemodialysis for about 2 mths and prior to that CVVH off an on for the first 6 weeks of our journey.

So far so good on the PD - I must say I was encouraged to see some of the other stories of folks that have been on dialysis for long periods of time. Even though it's also reminded us of some of the risks. We are currently in a holding period and waiting to see how the newest research pans out.

We try to be SUPER careful with Hyde on dressing changes, etc. since compared to the first 6 mths of 2008 - we can't even compare Hyde's quality of life to that time period. We go to the hospital once a month and then do PD every night for 10 hrs. while he's sleeping. Hyde is able to swim in a clean pool and take baths just like a normal kid.

Any dialysis related questions and/or answers feel free to discuss her.

[Christy]

Hey Phyllis---Thanks for adding this topic.....Aiden (will be 2 on the 29th of this month) has now been on PD for 7 months. He has done extrememly well and like Phyllis said he is able to live pretty close to a normal life and just get the PD at night while sleeping. We are so thankful that he is responding well to PD and pray that he continues to do so until there is a more permanent treatment available.

[Linda Burke]

Thanks for creating and participating in this forum - it certainly is a vital part of the routine in many aHUS families. I'm hoping that you can post some links to websites you view as essential to those currently using, or soon to be facing, dialysis. Perhaps certain organizations offer some sort of " The ABCs of Dialysis" booklets for those needing the basics or support groups online that specialize in dialysis- or any information you feel would be beneficial to others is most welcome here.

[Jessica Olivia Frysz]

Phyllis,
I've been on dialysis since I was 11months-1 year of age. I started out with PD but was unsuccessful, because of a severe cage of peritionitis. Doctors tried to place another PD catheter when I was 4 years old, but I have too many adhesions, that the catheter couldn't pass. I then ended up getting perma catheters placed, until I finally got a permanent access for the first time in my left leg, now I have it in my right leg. I go through a 3 month routine angiogram with possible angioplasty to keep the graft in my right leg going. But, it sounds to me that Hyde is doing extremely well on PD, though you should keep your options open, in case it isn't an option anymore, peritonitis is a scary thing, and I wouldn't want to scare you. I receive hemodialysis and have been for many years, no side effects as of yet, doctors have tried scaring me with the fact my heart could give out and my joints could go bad and so on, but I don't care, I want to live, and hopefully I can help others who are having a difficult time with dialysis or with this disease for this matter, since I have been living with this disease my entire life-for 21 years. If you have any questions, for me about dialysis, feel free to ask, I'm not afraid to be asked, and I'm not afraid to answer.

[Cheryl Biermann]

Hi, I've deleted my previous forum on dialysis because it's information is lost in the details, I'll try to be exacting in my new attempt so information shared isn't lost.

When Hemo-Dialysis doesn't appear to be working as it should, (not cleaning well enough), the options I've been made aware of are: Increasing the rate of flow or changing from a standard size filter to a larger filter.

There is also the possiblity of recirculation-which means that only a small amount of blood keeps going through the lines thus being redialized over and over. I'm not sure what the solution to this issue is. I'll try to find out.

I will also try to find a list somewhere of seizure meds that can be given without being dialyzed out, besides Depakote. The alternative is to give an additional, smaller dose of seizure medicine that IS DIALIZED after dialysis.

In hemo dialysis, ther is also the possibility of the patient having gained real weight, when this happen, the symptoms are the patient feels dizzy, clammy, sometimes hot, sometimes, cold, (like chills), and blood pressure tends to drop. When this happens they stop pulling off fluid and only keep filtering,

[Cheryl Biermann]

Hi everyone, just wanted to let you all know of a new idea, well maybe not new, but the first I've heard of it...Since Nathan's H&H dropped so much when he was on Depakote, we've increase his epogyn a lot, I think he's up to 3000 units three times a week. Anyway, the docs checked a number of things and have come up with a slightly low copper level. They had another patient with constant transfusions & they contacted another childrens hospital who was using copper to combat low Hemoglobin and Hematacrit. With this little baby, they were able to completely stop the transfusions by using copper...so we are putting Nathan on it to see what happens, as far as I know, this is not a treatment used when you still have your kidneys, but for someone who is having trouble with their levels while on dialysis...

[Linda Burke]

Wow - a very interesting development and potential help to many others having difficulty with fluctuations in their dialysis treatments. Please let us know how Nathan makes out with using copper levels - hope this new avenue hold potential for you! We'll be looking forward to some positive news on this front.....

Cheryl Christine Pallme Biermann said:

Hi everyone, just wanted to let you all know of a new idea, well maybe not new, but the first I've heard of it...Since Nathan's H&H dropped so much when he was on Depakote, we've increase his epogyn a lot, I think he's up to 3000 units three times a week. Anyway, the docs checked a number of things and have come up with a slightly low copper level. They had another patient with constant transfusions & they contacted another childrens hospital who was using copper to combat low Hemoglobin and Hematacrit. With this little baby, they were able to completely stop the transfusions by using copper...so we are putting Nathan on it to see what happens, as far as I know, this is not a treatment used when you still have your kidneys, but for someone who is having trouble with their levels while on dialysis...

[Donna Kolp]

Cheryl,
Very interesting......Jonathan now has 2 Nephrologists ;) a ped. and an adult....I will ask tomorrow when I go for training. I know that with Jonathan in the past, if his H&H dropped it was only for 2 reasons...relapse and low iron levels, even though they had increased his dose of EPO...EPO will not work if there are not enough stored Iron in the body. I don't think that Jonathan's copper level has ever been tested....Honestly, never thought about it, will now though!!!
Thanks for the information!
Oh and BTW.... home hemo is fantastic!!! I have been accessing Jonathan since last Saturday, and today I drew his labs :) Not as scary as I had thought with the poke...15 in needles are intimidating on their own! And Jonathan says he feels the best he has ever felt. Another perk is that he can eat anything now, and has no restrictions on K(Potassium), in fact, he always eats some dried apricots after his treatments :)

Cheryl Christine Pallme Biermann said:

Hi everyone, just wanted to let you all know of a new idea, well maybe not new, but the first I've heard of it...Since Nathan's H&H dropped so much when he was on Depakote, we've increase his epogyn a lot, I think he's up to 3000 units three times a week. Anyway, the docs checked a number of things and have come up with a slightly low copper level. They had another patient with constant transfusions & they contacted another childrens hospital who was using copper to combat low Hemoglobin and Hematacrit. With this little baby, they were able to completely stop the transfusions by using copper...so we are putting Nathan on it to see what happens, as far as I know, this is not a treatment used when you still have your kidneys, but for someone who is having trouble with their levels while on dialysis...

[Phyllis Ann Talbot]

Donna - that's GREAT!! Gives me something to hope for if anything goes wrong with our PD. Even though I think we are way to young - do you know (or if you get a chance can you ask) how young they'll allow home hemo? I think Dr. Brophy in Iowa said 12 but that he expects the age to drop pretty rapidly in the next few years.....thanks again!

Donna Kolp said:

Cheryl,
Very interesting......Jonathan now has 2 Nephrologists ;) a ped. and an adult....I will ask tomorrow when I go for training. I know that with Jonathan in the past, if his H&H dropped it was only for 2 reasons...relapse and low iron levels, even though they had increased his dose of EPO...EPO will not work if there are not enough stored Iron in the body. I don't think that Jonathan's copper level has ever been tested....Honestly, never thought about it, will now though!!!
Thanks for the information!
Oh and BTW.... home hemo is fantastic!!! I have been accessing Jonathan since last Saturday, and today I drew his labs :) Not as scary as I had thought with the poke...15 in needles are intimidating on their own! And Jonathan says he feels the best he has ever felt. Another perk is that he can eat anything now, and has no restrictions on K(Potassium), in fact, he always eats some dried apricots after his treatments :)

Cheryl Christine Pallme Biermann said:

Hi everyone, just wanted to let you all know of a new idea, well maybe not new, but the first I've heard of it...Since Nathan's H&H dropped so much when he was on Depakote, we've increase his epogyn a lot, I think he's up to 3000 units three times a week. Anyway, the docs checked a number of things and have come up with a slightly low copper level. They had another patient with constant transfusions & they contacted another childrens hospital who was using copper to combat low Hemoglobin and Hematacrit. With this little baby, they were able to completely stop the transfusions by using copper...so we are putting Nathan on it to see what happens, as far as I know, this is not a treatment used when you still have your kidneys, but for someone who is having trouble with their levels while on dialysis...

[Cheryl Biermann]

So, the copper must be doing something, its been a couple of weeks, and before the increase we had kind of crept up after we took him off Depakote, but then it stopped creeping completely. Added Copper, one dose daily, he's creeping ever so gently back up 9.5 & 28, not bad!

Phyllis Ann Talbot said:

Donna - that's GREAT!! Gives me something to hope for if anything goes wrong with our PD. Even though I think we are way to young - do you know (or if you get a chance can you ask) how young they'll allow home hemo? I think Dr. Brophy in Iowa said 12 but that he expects the age to drop pretty rapidly in the next few years.....thanks again!

Donna Kolp said:

Cheryl,
Very interesting......Jonathan now has 2 Nephrologists ;) a ped. and an adult....I will ask tomorrow when I go for training. I know that with Jonathan in the past, if his H&H dropped it was only for 2 reasons...relapse and low iron levels, even though they had increased his dose of EPO...EPO will not work if there are not enough stored Iron in the body. I don't think that Jonathan's copper level has ever been tested....Honestly, never thought about it, will now though!!!
Thanks for the information!
Oh and BTW.... home hemo is fantastic!!! I have been accessing Jonathan since last Saturday, and today I drew his labs :) Not as scary as I had thought with the poke...15 in needles are intimidating on their own! And Jonathan says he feels the best he has ever felt. Another perk is that he can eat anything now, and has no restrictions on K(Potassium), in fact, he always eats some dried apricots after his treatments :)

Cheryl Christine Pallme Biermann said:

Hi everyone, just wanted to let you all know of a new idea, well maybe not new, but the first I've heard of it...Since Nathan's H&H dropped so much when he was on Depakote, we've increase his epogyn a lot, I think he's up to 3000 units three times a week. Anyway, the docs checked a number of things and have come up with a slightly low copper level. They had another patient with constant transfusions & they contacted another childrens hospital who was using copper to combat low Hemoglobin and Hematacrit. With this little baby, they were able to completely stop the transfusions by using copper...so we are putting Nathan on it to see what happens, as far as I know, this is not a treatment used when you still have your kidneys, but for someone who is having trouble with their levels while on dialysis...

[Cheryl Biermann]

So now you are considering a nephrectomy, what are your options? The first option would be the traditional surgery which will require a longer recovery and laproscopic which has a shorter recovery but could result in nicking the peritoneum. There is about a 10% chance of this occuring. Before you make your decision, it might be a good idea to ask your doctor to map your child's veins first, in case a hemo-dialysis line is needed temporarily while the peritoneum heals from an accidental nick. This could help you decide which surgery option to choose.

The possiblity of your child's veins being limited for hemo because of blockages or using up an access point for a temporary line may help you decide that a traditional surgery is the best option. If all the veins are available and no problems are seen, you may then choose to go with the laproscopic surgery which will usually have a shorter recovery time.

Whatever you decide, this will most likely help your child's blood pressure to go down and possibly even decrease or eliminate his blood pressure medicines. Good luck.

[Cheryl Biermann]

In Missouri, there is a requirement for patients on hemo dialysis to be able to disconnect themselves and possibly get others to safety in case of a disaster...fire/tornato, whatever. Up until now, they have only been able to go over procedures orally, but as many of the kids have motor skill problems AND the state requires a drill of some sort, everyone was worried about how to practice this.

One of the nurses came up with a vest made of two pieces of clear contact paper in the shape of a life vest, sandwiched between the clear material is a picture of the heart and blood vessels with actual hemo dialysis lines, clamps and tegos. (Tegos are the end pieces on the kid's catheters that seal it.)

They drilled each of the kids on disconnecting and how to help other patients. They also followed the drill with a scavenger hunt which included a map of the hospital floor and they had to find the fire extinguishers, the emergency exits and know the codes for fire, storm and disaster. They also had a medical dummy they had to "unhook" from dialysis and pull to safety.

I thought it would be important information in case your hospitals aren't doing this already. If anyone else has ideas on this, please let me know and I will forward it to our staff.

[Cheryl Biermann]

Hi everyone-
I thought an update was in order, though I'm not sure were to put it! I believe it is related to dialysis so that is why I am here. Perhaps, if this is common, we will have a thyroid forum! We are now having thyroid problems BIG TIME, Nathan has been on a medication called Zemplar and over time we have increased it about as far as it will go. (His PTH level is in the 1700s.) The doctors are applying Nathan for clinical trials in a drug called Zansipar, (sp?), which they have had a lot of success with in their older patients. However, as it messes up calcium levels, it is a seizure risk.

Nathan, to date, has used Dilantin, Lamictal, Kepra, Depakote and now Zonisimide,for his seizures, and Zonisimide is not able to keep at a therapeutic level even though we are giving an additional dose after dialysis and are nearly maxed out on it. Nathan's main trigger has been potassium; however, it stands to reason, calcium, if it becomes an issue, would also trigger seizures. The catch is that he must be seizure free for three months to be accepted in the trials...we will be seeing Neurology next week, so keep us in mind on Wed. around 2:00, and pray the Neurologist comes up with a brain storm that will help Nathan. :) Thanks.