460) Annual Update
6 years ago
Monday, August 11, 2008
Quick Surgery Update
Just wanted to let everyone know - my surgery time was moved to 11:00 am for Monday. They called last night (Sunday) to let me know that my surgery time was moved a little bit later. For those of you that will be praying, 11:00 am is the time! Thanks!
Saturday, August 09, 2008
Blog-Time Mail Bag
Hey kids, it's time for another edition of Blog-Time Mail Bag. On this week's episode, we have a letter from Christy in Texas. Here's her letter, which was posted as a comment on my previous post:
My name is Christy McNiel. My husband, Gary has PKD and we are in the process of getting him listed on a transplant list. We live in Dallas and his nephrologist is at Baylor. We went to San Antonio to get evaluated for a kidney transplant because Baylor was having issues with our insurance. All is straightened out now and we now need to make an appointment with DTI to get Gary listed there. How was your expeience with Baylor? Who was your pre-transplant doctor, transplant surgeon and post-transplant doctor? Were you listed at more than one hospital? Sorry for all the questions. We are just trying to find out as much information as we can so that we know what steps we need to take next. Gary is not on dialysis yet, and we hope to avoid it , but we probably won't be so lucky. Thanks again!!
Well, Christy, first of all, thanks for writing. It's not too often that people send me mail full of questions. To start out, I'd like to say that it's too bad your husband also has PKD. Of the many things in my life right now, that's not one I'd wish on other people. I'm glad to hear that you got your transplant testing finished. Of course, you will need to do that every 12 months to stay active on the waiting list.
My experiences with Baylor went well, I think. I was listed at Baylor University Medical Center in Dallas as well as at Baylor All Saints in Fort Worth. They told me that I could list at both hospitals because they were in the same hospital network, but different transplant areas. This would get my name on two lists with only one set of paperwork.
As far as doctors go, I was with Dr. Silverstein at Dallas Nephrology prior to my transplant. He saw me from the time I moved to Dallas in 2001 until I started dialysis in 2005. Here, it seems that you get a different "specialist" nephrologist each time your kidney status changes. On dialysis, I had the clinic doctor, and wasn't overly impressed. I'm sure that any other blogs you ever read about clinical hemodialysis will tell you the same thing. I'm pretty sure that everyone considers those doctors as "drive-thru doctors" that are just trying to see all the patients in the clinic in under an hour. After transplant, I've been at Dallas Transplant Institute under the care of Dr. Nesser (and staff). They have two or three doctors and several physician's assistants that help coordinate the care of the patients. All the PA's report under your doctor, which means you get seen faster and more often (as otherwise, the doctor would never have time).
I do not remember who the surgeon was that performed my transplant at Baylor All Saints. Because I did not receive a kidney from a live donor, we did not really have any pre-transplant meetings with the doctors and surgeons. I just got a call at 3am and drove an hour or so to have a new kidney put in. They did a great job, and the hospital in Fort Worth was very nice. They had recently remodeled the transplant floor, and I enjoyed my short stay there.
I would advise being listed at as many hospitals and in as many areas as you are willing to drive to. It seems to me that if you are not going to have a kidney donated by a relative or friend that your best chance is having more chances. I mean, people talk about "the list" but there are really lots of lists, if you break it down.
There's probably a "master list" for each blood type. If you are a 100% match, then they will send the kidney to you (at least, that is how I understood it to work). Otherwise, you will just slowly move up the list in the area for your different matching characteristics. I think that there are six keys that the look at when matching. So, it would be my guess that you'd have a LOT of lists running around, with tons of names all filling a giant database somewhere.
The only advice I have is to follow all of the nephrologist's orders prior to the transplant. The longer your husband can stay healthy, then the less chance there is for him to have to go on dialysis (which is no fun). And, if he ever does go on dialysis, then he needs to be the model patient. Basically, the better you are for your doctors, the more likely you are not to have any flags in your file.
Good luck, Gary and Christy! Feel free to e-mail me at nmccart@gmail.com if you would like to talk more in a less-open forum. I didn't have any contact info in your comment, so I decided to post here, hoping you'd find it!
--
In other news, surgery for my sinus and nose is Monday at 8:30 am. Keep praying that all will go well. I'm guessing Jenny will post later to tell you how it went. Thanks!
My name is Christy McNiel. My husband, Gary has PKD and we are in the process of getting him listed on a transplant list. We live in Dallas and his nephrologist is at Baylor. We went to San Antonio to get evaluated for a kidney transplant because Baylor was having issues with our insurance. All is straightened out now and we now need to make an appointment with DTI to get Gary listed there. How was your expeience with Baylor? Who was your pre-transplant doctor, transplant surgeon and post-transplant doctor? Were you listed at more than one hospital? Sorry for all the questions. We are just trying to find out as much information as we can so that we know what steps we need to take next. Gary is not on dialysis yet, and we hope to avoid it , but we probably won't be so lucky. Thanks again!!
Well, Christy, first of all, thanks for writing. It's not too often that people send me mail full of questions. To start out, I'd like to say that it's too bad your husband also has PKD. Of the many things in my life right now, that's not one I'd wish on other people. I'm glad to hear that you got your transplant testing finished. Of course, you will need to do that every 12 months to stay active on the waiting list.
My experiences with Baylor went well, I think. I was listed at Baylor University Medical Center in Dallas as well as at Baylor All Saints in Fort Worth. They told me that I could list at both hospitals because they were in the same hospital network, but different transplant areas. This would get my name on two lists with only one set of paperwork.
As far as doctors go, I was with Dr. Silverstein at Dallas Nephrology prior to my transplant. He saw me from the time I moved to Dallas in 2001 until I started dialysis in 2005. Here, it seems that you get a different "specialist" nephrologist each time your kidney status changes. On dialysis, I had the clinic doctor, and wasn't overly impressed. I'm sure that any other blogs you ever read about clinical hemodialysis will tell you the same thing. I'm pretty sure that everyone considers those doctors as "drive-thru doctors" that are just trying to see all the patients in the clinic in under an hour. After transplant, I've been at Dallas Transplant Institute under the care of Dr. Nesser (and staff). They have two or three doctors and several physician's assistants that help coordinate the care of the patients. All the PA's report under your doctor, which means you get seen faster and more often (as otherwise, the doctor would never have time).
I do not remember who the surgeon was that performed my transplant at Baylor All Saints. Because I did not receive a kidney from a live donor, we did not really have any pre-transplant meetings with the doctors and surgeons. I just got a call at 3am and drove an hour or so to have a new kidney put in. They did a great job, and the hospital in Fort Worth was very nice. They had recently remodeled the transplant floor, and I enjoyed my short stay there.
I would advise being listed at as many hospitals and in as many areas as you are willing to drive to. It seems to me that if you are not going to have a kidney donated by a relative or friend that your best chance is having more chances. I mean, people talk about "the list" but there are really lots of lists, if you break it down.
There's probably a "master list" for each blood type. If you are a 100% match, then they will send the kidney to you (at least, that is how I understood it to work). Otherwise, you will just slowly move up the list in the area for your different matching characteristics. I think that there are six keys that the look at when matching. So, it would be my guess that you'd have a LOT of lists running around, with tons of names all filling a giant database somewhere.
The only advice I have is to follow all of the nephrologist's orders prior to the transplant. The longer your husband can stay healthy, then the less chance there is for him to have to go on dialysis (which is no fun). And, if he ever does go on dialysis, then he needs to be the model patient. Basically, the better you are for your doctors, the more likely you are not to have any flags in your file.
Good luck, Gary and Christy! Feel free to e-mail me at nmccart@gmail.com if you would like to talk more in a less-open forum. I didn't have any contact info in your comment, so I decided to post here, hoping you'd find it!
--
In other news, surgery for my sinus and nose is Monday at 8:30 am. Keep praying that all will go well. I'm guessing Jenny will post later to tell you how it went. Thanks!
Saturday, August 02, 2008
Double Surgery!
I know, double surgery sounds pretty bad. I probably should have title this post: "More News from the Doctor" or perhaps "What I've Learned" instead of Double Surgery. But, I did not. Now that you are tired of me explaining my choices, I guess I should talk about my surgery.
So, if you've been reading, you've noticed that I've been complaining of a chronic cough for a couple of months now. My nephrologist scheduled a CT scan for me on July 14, and they looked at my chest and sinuses. From there, I was referred to an Ear, Nose, and Throat doctor (or ENT for short - and no, not the Ents from Lord of the Rings). This doctor looked at my CT results, and looked up my nose, and said that I would need surgery to fix my problem.
I would normally have complained about surgery, except that this is what the kidney doctor had recommended as well. Since the two doctor had never spoken, I am going to guess that the opinion of two doctors is probably pretty good.
So, you've all read the post about my CT scan results by now. And, if you haven't, then go read it at: http://nmccart.blogspot.com/2008/07/many-tests-later.html
I am going to have a "Nasal Septal Reconstruction" to relieve my Deviated Nasal Septum. I am also having "Functional Endoscopic Sinus Surgery" to relieve my Chronic Sinusitis. What does this mean? The first one, the NSR (as I choose to call it) will fix my deviated septum. It's basically the seperation between the two sides of your nose. Mine is not straight, and they are going to fix it. It should help me breathe and drain better. The second surgery, or FESS (that doesn't sound as good as NSR did) is to clean the sinus polyps out of my sinus cavity (in my cheeks). I think they must have been there a while, because they are a decent size, and I have a runny nose ALL the time.
The surgeries will be on Monday, August 11, in Baylor University Medical Center in Dallas. It is outpatient surgery, so I should not be there more than a few hours. All I have to do now is to pick up my CT charts and pre-register. (The doctor wanted to look at the actual scans before doing any work).
Please pray that the surgery goes well and that I recover quickly. It should not be a long reocvery, but I am looking forward to getting rid of this cough and possibly even breathing easier all the rest of the time!
Enjoy your week everyone. I'll try to blog again after the surgery.
So, if you've been reading, you've noticed that I've been complaining of a chronic cough for a couple of months now. My nephrologist scheduled a CT scan for me on July 14, and they looked at my chest and sinuses. From there, I was referred to an Ear, Nose, and Throat doctor (or ENT for short - and no, not the Ents from Lord of the Rings). This doctor looked at my CT results, and looked up my nose, and said that I would need surgery to fix my problem.
I would normally have complained about surgery, except that this is what the kidney doctor had recommended as well. Since the two doctor had never spoken, I am going to guess that the opinion of two doctors is probably pretty good.
So, you've all read the post about my CT scan results by now. And, if you haven't, then go read it at: http://nmccart.blogspot.com/2008/07/many-tests-later.html
I am going to have a "Nasal Septal Reconstruction" to relieve my Deviated Nasal Septum. I am also having "Functional Endoscopic Sinus Surgery" to relieve my Chronic Sinusitis. What does this mean? The first one, the NSR (as I choose to call it) will fix my deviated septum. It's basically the seperation between the two sides of your nose. Mine is not straight, and they are going to fix it. It should help me breathe and drain better. The second surgery, or FESS (that doesn't sound as good as NSR did) is to clean the sinus polyps out of my sinus cavity (in my cheeks). I think they must have been there a while, because they are a decent size, and I have a runny nose ALL the time.
The surgeries will be on Monday, August 11, in Baylor University Medical Center in Dallas. It is outpatient surgery, so I should not be there more than a few hours. All I have to do now is to pick up my CT charts and pre-register. (The doctor wanted to look at the actual scans before doing any work).
Please pray that the surgery goes well and that I recover quickly. It should not be a long reocvery, but I am looking forward to getting rid of this cough and possibly even breathing easier all the rest of the time!
Enjoy your week everyone. I'll try to blog again after the surgery.
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