Answering a few questions
Hi this is Lydia's dad, Kevin. She has been telling me that a few questions have come up about this second surgery and asked if I would be able to answer, which of course I am happy to do. We have all found it interesting how this little community has grown from just friends at first to a much wider circle that reaches into the PKD community. I have found your responses uplifting at times and it has helped Lydia understand that she is not in this on her own.
As I understand it the question of if there needs to be a second operation is not a cut and dry one. It depends on the health of the recipient, the health of the transplant and the progression of the disease. In fact we did not determine that we would be removing any kidneys at all until the day before the transplant.
I had started to find it hard to eat much, if anything, and had a constant feeling of fullness. This was coupled with internal pressure that would wake me up at night and force me to change sleep positions and unexplained bowel problems none of which really met the criteria that I had been given a year earlier of "inability to eat" and "pain." So I met with Dr. Goggins and we talked about how I was feeling, after chatting he asked to check my abdomen and basically squeezed me in two positions and said; absolutely one of them is coming out. I had been feeling more issues on the right side so we decided the right would go, unless the donor organ dictated other wise.
As you have probably read on here before we did take the right native kidney and performed a right side to right side transplant, an unusual procedure in number of ways. The new kidney sits between a native kidney location and the usual transplant location, this was only possible because we had removed the native kidney. The connection was a ureter to ureter connection as opposed to creating a new direct connection from the kidney to the bladder.
The first indication that we would need to begin to think about a second nephrectomy came within days of the transplant. Dr. Goggins felt that the number and kind of cysts on the organ he removed indicated it would be wise to plan to remove the other one. When I asked when he said anytime between 3 months on up to a year but no longer. We started talking with my donor Lori and thought it would make a great excuse for a one-year anniversary get together. While she had managed to secure images from her own surgery she really wanted to see about getting permission to watch this one.
The first shift in calendar came around the 8th week post transplant. We had been dealing with stubborn, unexplained white blood cells in my urine and a continued presence of protein. Both transplant surgeons were convinced that the source had been narrowed down to the native kidney, but I was already back to teaching, which made the earliest opportunity the end of the semester.
Then came the process of connecting with the robotic surgeon who would perform the procedure, arranging for leave time from work, and figuring out when during the holiday season we could schedule this. There were more than a few times when I was not convinced everything would fall into place in time. I was also not fully convinced that I needed to have the native kidney removed.
In the three to four weeks before surgery the issues of pressure, eating, or not and bowel problems began to reappear. By the time we met for our pre-surgical consult and I got to see my abdominal MRI I was convinced this was the right thing to do.
Since starting this journey I have spoken with PKD patients that had both kidneys removed without a transplant option, patients who have followed the pattern I have and a few who still have both native kidneys and a transplant. Clearly there is no one answer and it is important to listen not just to your doctors but to your own body. Understand what kinds of stress affect you the most; can you wait and see if a problem pops up or would you rather deal with an impactful surgery and know the problem is gone for good.
It was never what I felt was an easy decision but it has become very clear that it was the right decision. Despite the pain (unexpectedly high,) the weakness, the sensitivity to cold (bad thing for late December,) and my ability to forget how to be a good patient, I know it was the right idea. But I am now able to fully focus forward and deal with the health of the transplanted organ and not continue to wonder about the PKD. I still have really good blood chemistry and have every reason to believe that I will return to the same level of activity, and more, quickly.
This is probably more information than you were looking for and I hope you have not been too bored by it all. I really appreciate the support both Lydia and I have found through all of you, so in a way I feel like this a small way I can give back, by sharing my story and my experience.
Kevin
As I understand it the question of if there needs to be a second operation is not a cut and dry one. It depends on the health of the recipient, the health of the transplant and the progression of the disease. In fact we did not determine that we would be removing any kidneys at all until the day before the transplant.
I had started to find it hard to eat much, if anything, and had a constant feeling of fullness. This was coupled with internal pressure that would wake me up at night and force me to change sleep positions and unexplained bowel problems none of which really met the criteria that I had been given a year earlier of "inability to eat" and "pain." So I met with Dr. Goggins and we talked about how I was feeling, after chatting he asked to check my abdomen and basically squeezed me in two positions and said; absolutely one of them is coming out. I had been feeling more issues on the right side so we decided the right would go, unless the donor organ dictated other wise.
As you have probably read on here before we did take the right native kidney and performed a right side to right side transplant, an unusual procedure in number of ways. The new kidney sits between a native kidney location and the usual transplant location, this was only possible because we had removed the native kidney. The connection was a ureter to ureter connection as opposed to creating a new direct connection from the kidney to the bladder.
The first indication that we would need to begin to think about a second nephrectomy came within days of the transplant. Dr. Goggins felt that the number and kind of cysts on the organ he removed indicated it would be wise to plan to remove the other one. When I asked when he said anytime between 3 months on up to a year but no longer. We started talking with my donor Lori and thought it would make a great excuse for a one-year anniversary get together. While she had managed to secure images from her own surgery she really wanted to see about getting permission to watch this one.
The first shift in calendar came around the 8th week post transplant. We had been dealing with stubborn, unexplained white blood cells in my urine and a continued presence of protein. Both transplant surgeons were convinced that the source had been narrowed down to the native kidney, but I was already back to teaching, which made the earliest opportunity the end of the semester.
Then came the process of connecting with the robotic surgeon who would perform the procedure, arranging for leave time from work, and figuring out when during the holiday season we could schedule this. There were more than a few times when I was not convinced everything would fall into place in time. I was also not fully convinced that I needed to have the native kidney removed.
In the three to four weeks before surgery the issues of pressure, eating, or not and bowel problems began to reappear. By the time we met for our pre-surgical consult and I got to see my abdominal MRI I was convinced this was the right thing to do.
Since starting this journey I have spoken with PKD patients that had both kidneys removed without a transplant option, patients who have followed the pattern I have and a few who still have both native kidneys and a transplant. Clearly there is no one answer and it is important to listen not just to your doctors but to your own body. Understand what kinds of stress affect you the most; can you wait and see if a problem pops up or would you rather deal with an impactful surgery and know the problem is gone for good.
It was never what I felt was an easy decision but it has become very clear that it was the right decision. Despite the pain (unexpectedly high,) the weakness, the sensitivity to cold (bad thing for late December,) and my ability to forget how to be a good patient, I know it was the right idea. But I am now able to fully focus forward and deal with the health of the transplanted organ and not continue to wonder about the PKD. I still have really good blood chemistry and have every reason to believe that I will return to the same level of activity, and more, quickly.
This is probably more information than you were looking for and I hope you have not been too bored by it all. I really appreciate the support both Lydia and I have found through all of you, so in a way I feel like this a small way I can give back, by sharing my story and my experience.
Kevin
Comments
Thanks for sharing your story. I learned a lot more than I bargained for, but I wasn't bored at all! :-) I didn't discover Lydia's blog until just a few months ago, so I hadn't realized that you had one of your kidneys removed at the time of your transplant.
I guess the reason I felt compelled to ask was I remember ten years back when my wife and I were meeting with the transplant coordinator and how surprised I was to learn that they could add a kidney without removing the original one. I had naively assumed that they took one out and replaced it with another in the same spot. Sounds like that is close to what occurred in your case.
I remember being concerned at the time that her "old kidneys" would continue to cause her pain. Thankfully, since the transplant, the old kidneys haven't been bothering her nearly as much. I'm not sure why that is, but I can't imagine it had anything to do with the transplant.
Thanks again for sharing your story and I wish you the best of luck in your recovery, Kevin.
Bob
I suppose we all feel we Hi Kevin, I already know you at least as a fellow PKD patient. I was transplanted on April 9th 2007. I am doing great except I am bleeding again from my native kidney or kidneys. I may be following your lead into surgery if it doesn’t stop soon. Other than the bleeding the new kidney is functioning beautifully. People have commented that knowing that PKD leads eventually dialysis seeing me now they would have less fear of the disease. That was the hope I was trying to convey to Lydia. I firmly believe that by the time she is symptomatic there will be so many more options open to her and she will live a long normal life perhaps with a re-grown kidney from her own stem cells. Or they may be able to arrest the disease completely.
John S