I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: mtbidwell on April 08, 2009, 07:25:14 AM
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My name is Mike. I'm a 39 year old father of two small children. I was diagnosed with Berger's Disease (aka IgA Nephropathy) approximately 7 years ago. My doctor and I did a great job of maintaining my kidney function at about 50% until last November. Then, my kidney function unexpectedly dropped. I was placed on dialysis on January 12, 2009. I have a venous catheter at the base of my neck/upper chest region. Since January 12th, I been back in the hospital about 8 times for clotting and other problems relating to the catheter (including a bout of staph infection). The dialysis catheter has been replaced 6+ times since January and my dialysis never seems to run smoothly. The dialysis center can rarely get the volume of the flow above 250. As a result, I've had to increase the quantity and length of my visits to the dialysis center. Have any of you experienced similar problems with your dialysis? I feel horrible complaining since I'm on the verge of a transplant (I have a living donor, my brother-in-law). However, the hold up right now is (1) an abnormal reading on my hematologist report (which they say isn't causing the problems with my dialysis, but I'm not so sure) and (2) I have to stay infection free for 6 weeks prior surgery. With my almost weekly visits to the hospital for a new catheter, I don't know how to stay infection free. Thanks for giving me a place to vent.
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:waving; Mike and welcome.
Sorry to hear of the problems your dealing with.
I am far from an expert, but there are many here.
My only suggestion would be to get an access other then what you are using. A fistula takes a few months to properly heal. A PD access heals in a few weeks and if that worked for you with no complications and your donor is approved to donate this may be the way i would go. The PD access would just be there long enough to keep you out of the hospital so you can get your new kidney.
Did that make sense???
Needless i wish you the best of luck. it must be frustrating that you have a willing living donor and you have to go through all this mess.
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Welcome, Mike! :welcomesign;
You will find a great deal of both information and support here. I hope to see you posting often!
In regard to your catheter problems, I am assuming you don't want to get a permanent access because you have a living donor lined up for transplant. However, if the constant infections from the catheter are keeping the transplant on hold, you might want to consider a fistula or graft or even peritoneal dialysis in order to get things back on track. It might take a little while, but at least you would be getting better dialysis treatments, and it might smooth the path to getting your transplant.
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:welcomesign; Mike. Glad you found us. There is lots of information here and even more support.
If you have a living donor lined up you need to really protect this catheter you have. Have you got your labs back? What are your numbers looking like? My husband had many, many catheters and also had problems with getting a flow above 250. What is the abnormal reading from the hematologist. Are they using heparin on you? You need to get copies of your labs so you can understand the numbers. So you have any kidney function left? I know I'm not being much help but more information would benefit the answer you get here. I hope you can get your transplant soon. Again Welcome. :cuddle;
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Hi Mike sorry about all of the problems you are having. Feel free to come and vent here anytime you need, and hell just drop in from time to time and let us know how you are doing. :welcomesign;
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:welcomesign;
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Welcome Mike, good to have you aboard.
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My daughter clogs up if they don't close the dialysis lines with TPH or heparin (not sure of the spelling). She has had a couple of horrible surgeons and some great ones. If you have continuously had these problems since January, I think that you should start getting second and third opinions. The first surgeon that put my daughter's cathedar in said he had done it a thousand times, however, he didn't tell us that it was the first time he was performing this surgery on a child...He botched the cathedar BIG TIME, but nobody would ever admit to any wrongdoing. The second surgeon was amazing. The dialysis patients at the hospital usually will tell you who is the best and who knows their stuff. The staff knows who is good verses bad, but will never say anything.
Good luck and congratulations on your future new kidney!!! I love kidney transplant stories so make sure to keep us updated!
:grouphug;
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The dialysis patients at the hospital usually will tell you who is the best and who knows their stuff. The staff knows who is good verses bad, but will never say anything.
This is an excellent point. Talk to the other patients and family members at your dialysis facility, especially those that have been there for a while. They will hopefully have a great deal of common sense information to share with you that only those who have "been there" would know.
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:welcomesign; Im just wondering if your unit uses heparin in your cathather or saline, I clotted off when they used the saline.
Fixed smiley icon error Epofriend, moderator
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Hi Mike, glad you found us and joined our family. You will find great support here and also information from many who know what you are going through. I hope you stay infection free soon so you can get your transplant. Post often and let us know how you are doing. :welcomesign;
paris, Moderator