Update on Maya,

[Sylwia Antkowiak]

I didn't write for a long long time as there is never enough time for anything anymore but felt I need to update you on what is happening with us. I feel a little bit like Donna. Maya was stable and well on peritoneal dialysis for a long time. We've been waiting for Soliris study to start in the UK impatiently and only recently we've learnt that it is due to start very very soon. We could then go on the waiting list stright away and wait as none of us can be a live donor. But of course it would be too straight forward and simple. In march this year we cought an infection of the exit site. It was oozing and oozing and the funny thing was that the swabs were all negative. Only a few months ago it was discovered that it is caused by a bacterium called Mycobacterium cholinae. A nasty and persistant thing. Maya was on antibiotics for ages now and they do not really help. The infection does not seem to be getting further down the tube, it stays between the exit site and the first cuff, but of course there is always a risk of peritonitis. So we went for a surgery to remove this cathether and replace it with a new one. The surgeon on the day refused to do the surgery as it would be too great risk of cross contamination with which I totally agree. We've ended up with fistula and will have to now learn how to operate a new machine for home haemodialysis not to mention that Maya will have to overcome her fear of needles. I needed a few days to digest it all and get myself together again. I shouldn't really complain as she is very well in herself but it is just so frustrating. Here you are preparing yourself for the transplant, having great hopes etc and now this. Obviously she couldn't go for the transplant with this infection going on. I hope we can can endure it all....

I have a question to all parents with children on haemodialysis, how quickly did they get used to being needled? Are there any of you who actually do it yourself at home?

Thank you very much for all your help and support

Sylwia

[Sylwia Antkowiak]

Thank you all for your kind and supportive comments. We will get there sooner or later..but we will.

[Linda Burke]

Thanks for your update, I am sorry that it's been so rough for Maya and you all...wishing for better days ahead for your family.

[Cheryl Biermann]

Hi Sylwia,

 

Nathan's road on peritoneal dialysis was very rough, it worked well for about one year.  Then the following summer he went to camp in Memphis, TN with other dialysis patients, came back home overloaded from too much fluid, and a couple weeks later with an infection...from that point on it was down hill, pain, and less and less effective.  I'm not saying they did anything wrong at camp, but it is kind of a marker for me to remember.  Finally, he too got a terrible infection when he was in the hospital, and we had to close up shop on pd forever. 

 

We would like to do hemo at home, but his electrolites are so unpredictable, and when then plummet or get too high he has severe seizures, so I am afraid to do it.  Although he does not like needles, he deals with it because he has to.  We use emla also, although it kind of can make the vein harder to stick.  Right now we are back to using his central line, because the fistula has been so hit and miss and the last few times he was really sore after dialysis.  We are saying to the doctors, why are we putting him through this if we are going to do Soliris anyway?  Well the answer is that they want him to have the security of a safer dialysis access in the time between now and transplant and they would also like to have the backup line in case he doesn't react to the transplant the way everyone believes he will.  In the end, Mya and you will adjust just as you have time after time in the past, right now we are dealing with a decreasing parathyroid function and bone disease as well as neurological issues that seem to be worsening.  Nathan's life has been a journey with lots of twists and turns, and we just need to educate ourselves and follow his lead. 

 

If you are going to do hemo, I'm sure it is because they, (doctors), are comfortable with her reaction to hemo and with your abilities to do it.  I will pray her infection leaves so that everyone can be comfortable with the decisions you need to make.

[Donna Kolp]

Hi Sylwia,

 

Frustrating.....

Jonathan was on PD for many, many years and due to some mild calcification, we had to start Hemodialysis. Last year I was trained to do this at home, and it was the best decision! My Jonathan is 18, but needles are not his favorite. I am able to use Emla cream on his fistula, so there is NO PAIN. Also, I was trained to do the Buttonhole technique, so I do not use sharp needles; they are blunt. You have the concept of dialysis, which will help you learn Hemo.

If you have any questions, please let me know.

Good luck & God Bless,

Donna