Just wanted to introduce myself, my name is Christy, I’m 29. I just recently had surgery to get my PD catheter placed and have started training. I should be starting PD in the next coupe of weeks. I have been some what apprehensive about it, not sure if that’s because it is new, or because it puts me one step closer where I was trying to avoid. Any ways I look forward to having you all to talk to, even though I have an awesome support group with my family and friends, it’s nice to know there are people I can talk too that know exactly what I am going through
Welcome to Home Dialysis Central. I’m glad you’ve found your way to PD, and hope it will work well for your life. It’s easy to learn and do, and we have lots of info about it here, from stories (http://www.homedialysis.org/resources/stories/) to equipment (http://www.homedialysis.org/learn/equipment/pd/, to journal articles & our own original articles (http://www.homedialysis.org/resources/reading/, and much more. Let us know how it goes for you!
Thanks for the welcome! I have been poking around here and there is a wealth of information!!! So far I am doing really well with my training, it seems to come naturally but I think that has to do with the fact I trained to be a medical assistant. I also look forward to being a shoulder and ear for anyone else!
Welcome Christy! I did PD for a little over 4 years. I liked it better than HD. Especially night time PD (CCPD or APD) because I hooked up before bed, slept while it did its thing, woke up and disconnected and went about my day.
The Dr’s are looking at doing the CAPD for a few weeks to get me accustom to the manual changes, then they are going to switch me to the APD, which I am looking forward too. What is the average time that PD can be used before having to switch to another course of treatment? (I know every one is different)
I’ve known a number of folks who’ve done PD successfully for 8 or 10 or even 17 years or more–you can read about some of them in our stories section. But on average, most people do PD for somewhere between 18 months and 2 years. PD is a great first option for a lot of reasons, one of them being that it buys you time to scope out your next steps.
It is not necessary to do CAPD before APD. My clinic wanted me to do one month of CAPD before switching to APD, but I do not want to do any CAPD during the day, so I insisted on starting APD right away. My clinic is OK with me for not doing any CAPD. Of course, everyone needs to learn to do CAPD. It is easy and one should not spend a whole month to practice it. --JIe
Thank you Dori!! I was able to talk with my Dr today and the plan is to have me on CAPD for 2 weeks so I am comfortable with doing the manual just incase I need to do it when I travel, then he is switching me over to the APD. I am really looking forward to it. I was so scared and apprehensive at first. I cried any time I was alone and just felt lost. I have since figured out though that this is not the end of the line just another stepping stone along the way. I really am looking forward to starting treatment now instead of dreading it. The Dr also wants me to see a transplant team in the next year or so, to get me started on a transplant. I know my blood type is a pain, but not sure how it is going to affect the chances of a kidney. Or any other things involved with it.
Thanks, JLE, it’s good to know that that’s possible, and it’s great that you were able to advocate for what you wanted.
Christy, I’m so glad to hear that you’re feeling so much better about starting PD. Many wise people have noted that you can’t choose what happens to you in life–but you can choose how you react to it. Starting out by thinking positive (after you work through the initial shock and dismay!) can help everything afterward to go more smoothly.
If your blood type is uncommon and you want a transplant, it might be a good idea to get the transplant workup done sooner rather than later. The wait for a deceased donor kidney can take years, and the transplant team can talk with you about living donor options.
Personally, I wouldn’t wait a year to get evaluated for a transplant. Some doctors believe patients do better when they see what dialysis is like before getting a transplant. They believe this will help a person with kidney failure understand how important it is to take care of their new kidney. In fact, people with CKD can get contact a transplant center and ask to make an appointment to talk about transplant and to be evaluated for transplant even before their kidneys fail. A transplant center will list someone on the deceased donor list and perform a transplant when kidney function drops below 20%.
Waiting times vary significantly across the country. In my area the mean waiting time is around 16 months. On the east and west coasts, waiting times may be 5 or more years.
Some people choose to list at a transplant hospital near them and to list at another transplant hospital in another area of the country where waiting times are less. This is called “double listing.” It helps if you have family or friends in the other area since you will need to stay in the area for a while after transplant.
If you have a living donor you could get a transplant much sooner and schedule the surgery around a time that fits for you and your donor. Your donor can be a relative, friend, or someone you know through work, school or church or even someone you don’t know who chooses to donate a kidney to anyone who matches. There have even been groups of people that have donated to each other’s loved ones so their loved one gets a kidney (called “paired donor exchange”).
In any case, it’s important that you understand that kidney transplant is another form of treatment for kidney failure. Kidney transplant has its own pros and cons.
Here’s a site where you can look at success rates and waiting times for kidney transplants at transplant hospitals in the U.S.
http://www.ustransplant.org (The Scientific Registry of Transplant Recipients)
Here’s a site where you can read about transplants – before, during, and after.
I see my Dr on Wednesday, I will be bringing up the subject of transplant. I am AB neg I have been told that I will have to have AB neg and then tissue match as well. I want to get it going as soon as possible, I thought waiting was a bad choice, but I thought that there was a reason I was going to have to wait. Now that I know for certain, and am not more focused on the PD part, I am going to take a more proactive role in the transplant area.
In my genetics classes in college, I learned that someone with AB positive blood type is considered the “universal recipient” since he/she can get blood from a donor with A positive or negative, B positive or negative, and O positive or negative. Someone with O negative blood type is the “universal donor” since they can give their blood to anyone. Since you’re AB negative should be able to get a kidney from a donor with an A negative, B negative, or O negative blood type.
There are other types of tissue matching and antibody levels to determine your best match. In addition, there is a test called a cross-match that is done the day of the transplant. With this test, a sample of the donor’s and recipient’s blood are mixed together to see if it clots. If it does, it’s called a “positive cross-match” and that kidney would likely reject immediately. If the two blood samples don’t clot, that’s called a “negative cross-match” and if all other things are OK, the transplant can take place.
This article from the AAKP Renalife includes this information about matching, but doesn’t talk about how whether the blood type is positive or negative affects matching.
You might want to review the kidney transplant program statistics in your area on the website below (look under Program and OPO Data for kidney programs):
Thank you so much for the information, there are several good centers in my area and I am gathering a weath of information to talk with my Dr. Also it was very interesting to find out that it is basically the opposite for me with my blood type, when I get blood I can only get AB neg(according to the last Dr that gave me a transfusion) But with the transplant I would be able to receive from any blood type, which opens up a lot of possibilities for me.