Later today is the day...
My brother Parker is donating a kidney to me today.
I can't really believe it. I know I should get some sleep but it's tough to try to go to sleep with all these thoughts and emotions going through my head.
I had my last dialysis treatment today. Everything went very well and smoothly. The tech that was taking me off the machine at the end said I looked relieved. I know I was/am, but I guess it was just a pretty big step. I just sat back in the chair a little, took a deep breath, and slowly let it out. It's done. Wow. I walked around and made sure to talk to everyone on the staff that was there. Some of them actually got pretty emotional. I know I'll definitely be going back to visit to see them. This time it will only to be to talk, say hi, and give updates though, not to stay.
I don't really have anything to say about how I'm feeling about the surgery right now. It's overwhelming. I have no idea what to say to Parker. I guess I'll get to that when I get to it. Today's a huge day. It's not only following everything in the past almost 3 years, but in a way, many things I've dealt with since I was born, whether I remember them or not. I certainly can't describe it in the anxious, excited worrying, and sleep-deprived state I'm in right now.
Please keep us in your thoughts and prayers today with surgery and in the days and weeks to come with recovery. Thank you very much.
Tuesday, July 9, 2013
Monday, July 8, 2013
Late night
I have what is very possibly my last dialysis in a few hours.
The nervousness and anxiety ramped up a bit earlier tonight. I even went out for a walk in the neighborhood at like 1:30 AM. I got back and still had plenty of energy. Considering I hardly ever have much energy at all anymore because of dialysis, it's a strange feeling. I wish I had been able to ration that nervous energy out over the past 3 years and use it when I needed it. I had planned all day to go to sleep around midnight, which is much much earlier than normal for me, to rest up a little bit. Midnight came around and I wasn't the least bit tired. Go figure.
I don't have any idea what it's going to be like at dialysis today. I've been extremely blessed and lucky to have the very best staff at the dialysis clinic I could have ever asked for. The techs, nurses, and dietitians have all been great. Dialysis might make me feel like crap but these people make it so it's not terrible to be there. I definitely have to say that I've made some friends from the staff there, even if we only get to talk to each other at work. Thanks to all of them for taking care of me these past few years and helping me make it through all of this. And just so you know, giving out a form that asks me to pick my favorite staff member this year is seriously impossible. How could I ever choose? No way. There's no way I'm going to miss dialysis but I will miss talking to you guys and girls.
I'll probably post something more thorough about how I'm feeling overall later today, when it's not a totally obnoxious hour. Guess I'll try to get some sleep.
The nervousness and anxiety ramped up a bit earlier tonight. I even went out for a walk in the neighborhood at like 1:30 AM. I got back and still had plenty of energy. Considering I hardly ever have much energy at all anymore because of dialysis, it's a strange feeling. I wish I had been able to ration that nervous energy out over the past 3 years and use it when I needed it. I had planned all day to go to sleep around midnight, which is much much earlier than normal for me, to rest up a little bit. Midnight came around and I wasn't the least bit tired. Go figure.
I don't have any idea what it's going to be like at dialysis today. I've been extremely blessed and lucky to have the very best staff at the dialysis clinic I could have ever asked for. The techs, nurses, and dietitians have all been great. Dialysis might make me feel like crap but these people make it so it's not terrible to be there. I definitely have to say that I've made some friends from the staff there, even if we only get to talk to each other at work. Thanks to all of them for taking care of me these past few years and helping me make it through all of this. And just so you know, giving out a form that asks me to pick my favorite staff member this year is seriously impossible. How could I ever choose? No way. There's no way I'm going to miss dialysis but I will miss talking to you guys and girls.
I'll probably post something more thorough about how I'm feeling overall later today, when it's not a totally obnoxious hour. Guess I'll try to get some sleep.
Friday, July 5, 2013
Pre-op tests and meetings
Yesterday, I had all of the pre-op tests and meetings to prepare for the transplant surgery next Tuesday. Next Tuesday? Ahhhhhhhhhhhhhhhhh!
We arrived at the building in the UC Davis Medical Center complex around 8 AM. The radiology department was right across from the front entrance and was the first place I had to go. I waited about a minute before being called back for a couple of chest x-rays, which may have taken all of 30 seconds total.
Next was getting blood work done down the hall. It was nothing to me since it was a baby needle compared to the railroad spikes I'm used to at dialysis. Parker had to have something like 11 vials drawn though. That was a bit rough for him. I wasn't even sure how many I had since I'm so used to it. He said the person told him I had 4. He felt a little off for a few minutes after having so much blood taken, but he was okay.
After bloodwork, we had meetings with the anesthesiologist. We discussed various concerns dealing with the anesthesia side of the surgery. I got the standard "No food or drink after midnight." I had an EKG, which came out fine. While the nurse and resident was talking to me in one room, Parker was talking to someone else in another room about his part. The nurse and resident that talked to me were very nice and helpful. She answered any questions we had about that part of the process, and gave us her card in case we thought of anything later.
It was then time to leave that building and go over to the Transplant Center, which I'm very familiar with now. There was a short wait (Star Wars: Episode III was on the TV, which helped ease a little bit of the tension.) then Parker was called back. I was called a few minutes later. A nurse took my blood pressure and weight then led me to a room to wait to see one of the doctors. After waiting for a bit, there's a knock on the door and a lady walks in and introduces herself as Sharon Stencil. I was very excited to meet Sharon as she is the Living Donor Coordinator. She has been the person that Parker and I have been in contact with for the past year or so. She's been the go-to person for any questions or concerns that we've had with getting Parker approved and moving along with the surgery process. Neither one of us had met her in person before so it was nice to finally do so. Sharon chatted with my mom and me for a bit, letting us know what the overall plan was for the rest of the day.
Parker was in another room down the hall, and my mom was going back and forth between the rooms the whole time we were there, trying not to miss anything.
We waited a bit more, then the chief resident came in to do a quick physical. Just as he grabbed the paperwork, the surgeon that will be performing my surgery came him. The nurses, doctors, and staff there call him Dr. Krishnan, but his full name is... ready for this? Dr. Chandrasekar Santhanakrishnan. Yeah, I think Dr. Krishnan will work for me too. This was certainly a great introduction though. He was very relaxed and confident. He explained the basics of what is going to happen during my surgery. He listened to all our questions and concerns and helped us understand the best he could. While Dr. Krishnan was talking to me, Dr. Troppman, Parker's surgeon, was talking to him. The chief resident did a quick physical to make sure everything was still ok with me, and that was it with the doctors for the day. The pharmacist came afterwards and discussed the various medications I'll have to be on post transplant. Sharon came back in after the pharmacist was finished and talked to all of us for a few minutes, and that was it. Tons of information and things to process.
I think I actually feel a little better after talking to the people. I'm still very nervous though, of course, but it'll be fine.
Tuesday, wow.
We arrived at the building in the UC Davis Medical Center complex around 8 AM. The radiology department was right across from the front entrance and was the first place I had to go. I waited about a minute before being called back for a couple of chest x-rays, which may have taken all of 30 seconds total.
Next was getting blood work done down the hall. It was nothing to me since it was a baby needle compared to the railroad spikes I'm used to at dialysis. Parker had to have something like 11 vials drawn though. That was a bit rough for him. I wasn't even sure how many I had since I'm so used to it. He said the person told him I had 4. He felt a little off for a few minutes after having so much blood taken, but he was okay.
After bloodwork, we had meetings with the anesthesiologist. We discussed various concerns dealing with the anesthesia side of the surgery. I got the standard "No food or drink after midnight." I had an EKG, which came out fine. While the nurse and resident was talking to me in one room, Parker was talking to someone else in another room about his part. The nurse and resident that talked to me were very nice and helpful. She answered any questions we had about that part of the process, and gave us her card in case we thought of anything later.
It was then time to leave that building and go over to the Transplant Center, which I'm very familiar with now. There was a short wait (Star Wars: Episode III was on the TV, which helped ease a little bit of the tension.) then Parker was called back. I was called a few minutes later. A nurse took my blood pressure and weight then led me to a room to wait to see one of the doctors. After waiting for a bit, there's a knock on the door and a lady walks in and introduces herself as Sharon Stencil. I was very excited to meet Sharon as she is the Living Donor Coordinator. She has been the person that Parker and I have been in contact with for the past year or so. She's been the go-to person for any questions or concerns that we've had with getting Parker approved and moving along with the surgery process. Neither one of us had met her in person before so it was nice to finally do so. Sharon chatted with my mom and me for a bit, letting us know what the overall plan was for the rest of the day.
Parker was in another room down the hall, and my mom was going back and forth between the rooms the whole time we were there, trying not to miss anything.
We waited a bit more, then the chief resident came in to do a quick physical. Just as he grabbed the paperwork, the surgeon that will be performing my surgery came him. The nurses, doctors, and staff there call him Dr. Krishnan, but his full name is... ready for this? Dr. Chandrasekar Santhanakrishnan. Yeah, I think Dr. Krishnan will work for me too. This was certainly a great introduction though. He was very relaxed and confident. He explained the basics of what is going to happen during my surgery. He listened to all our questions and concerns and helped us understand the best he could. While Dr. Krishnan was talking to me, Dr. Troppman, Parker's surgeon, was talking to him. The chief resident did a quick physical to make sure everything was still ok with me, and that was it with the doctors for the day. The pharmacist came afterwards and discussed the various medications I'll have to be on post transplant. Sharon came back in after the pharmacist was finished and talked to all of us for a few minutes, and that was it. Tons of information and things to process.
I think I actually feel a little better after talking to the people. I'm still very nervous though, of course, but it'll be fine.
Tuesday, wow.
Saturday, June 15, 2013
Not late, but still a very important date.
I've know for around 4 months that my tests that were called for after the checkup in December came back clear. The people told me that the surgery would probably happen sometime this summer, so both my brother and I could finish the school semester. Summer came, I had another checkup, fully cleared, more waiting.
Today, Parker's Living Donor Coordinator called me told me she was trying to get in contact with him, and that she had everything set up.
Transplant surgery scheduled for July 9th. Pre-Op meeting/check on July 3rd.
Whoa. I really didn't expect it to be so sudden. I'll certainly take it though! I don't even know what I'm feeling. It's a whole mix of emotions. Mostly nervousness and excitement.
I'll post more when I know more. Almost there.
Today, Parker's Living Donor Coordinator called me told me she was trying to get in contact with him, and that she had everything set up.
Transplant surgery scheduled for July 9th. Pre-Op meeting/check on July 3rd.
Whoa. I really didn't expect it to be so sudden. I'll certainly take it though! I don't even know what I'm feeling. It's a whole mix of emotions. Mostly nervousness and excitement.
I'll post more when I know more. Almost there.
Thursday, May 30, 2013
What's really going on?
Okay, time to update this thing since I can breathe a bit now. There's a bunch to cover so guess I'll get to it.
School's out for summer. Finally. It was a good semester, but with all health stuff thrown in, it was also one of the most stressful I've had. I made it through though.
It's been about a month and a half since I had the original fistula removed. My arm is healing well and looks much better than I thought it would. Dialysis started using my new fistula last Wednesday. It's working well, but it's still relatively small so there's been problems with it infiltrating. Infiltrating is when the tech sticks me with the needle and it nicks the wall of the blood vessel. It immediately starts clotting to heal so it can't be used for dialysis during that treatment. From the outside, it's basically a bruise. Luckily, there's nothing wrong with the fistula itself though. The original one had the same problem quite a few times when it was newer also. I still have the ASH catheter in, so we're using that when the fistula infiltrates. Hopefully I'll be able to get that stupid thing out soon.
Although it's not about me, this week I received some of the worst news of this entire ordeal. Dr. Matthew Mezger, my nephrologist, and his wife, died in a private plane crash in Arizona on Tuesday. I've been seeing Dr. Mezger every week at dialysis and he's the one that keeps up with all my information, meds, and decides what needs to be done overall. He and his wife were on vacation and the plane was having trouble gaining altitude after takeoff. I don't think I've begun processing it yet. They still haven't made an official announcement at dialysis, so I think that will probably happen tomorrow. I certainly don't know what this means for me health wise. Dr. Mezger was a very good doctor and definitely knew what he was talking about. Thoughts and prayers for his family please.
Now for the other side of the spectrum. Today I had my appointment with the nephrologist at UC Davis Transplant Center for an overall status check. I had been dreading and stressing out about this appointment so so much for the past few weeks (on top of finals, that's a ton of stress). They didn't know about the surgeries I've had in the past few months so I was very worried that those would have a negative impact on the transplant situation. The doctor said there would be no problem there whatsoever and that everything else checked out and looked good. All the tests and such are done. He needed to talk to a few people, and then he'll give me a call sometime to let me know when everything will be. So... I'm cleared for the transplant this summer, as far as we know. It's looking possibly like July, but to be honest, we really have no clue whatsoever until he calls. It's kinda hard to get too excited after all I've gone through because of things continually popping up to get in the way, but this is a very good sign. The doctor was extremely positive and encouraging today, something I really could use. Definitely much needed good news finally.
I'm full of a huge mix of emotions. Happy, sad, nervous, excited, curious. Not sure how to feel with all of this. Overall though, hopefully everything is about to take a huge positive step forward, barring any more speed bumps.
School's out for summer. Finally. It was a good semester, but with all health stuff thrown in, it was also one of the most stressful I've had. I made it through though.
It's been about a month and a half since I had the original fistula removed. My arm is healing well and looks much better than I thought it would. Dialysis started using my new fistula last Wednesday. It's working well, but it's still relatively small so there's been problems with it infiltrating. Infiltrating is when the tech sticks me with the needle and it nicks the wall of the blood vessel. It immediately starts clotting to heal so it can't be used for dialysis during that treatment. From the outside, it's basically a bruise. Luckily, there's nothing wrong with the fistula itself though. The original one had the same problem quite a few times when it was newer also. I still have the ASH catheter in, so we're using that when the fistula infiltrates. Hopefully I'll be able to get that stupid thing out soon.
Although it's not about me, this week I received some of the worst news of this entire ordeal. Dr. Matthew Mezger, my nephrologist, and his wife, died in a private plane crash in Arizona on Tuesday. I've been seeing Dr. Mezger every week at dialysis and he's the one that keeps up with all my information, meds, and decides what needs to be done overall. He and his wife were on vacation and the plane was having trouble gaining altitude after takeoff. I don't think I've begun processing it yet. They still haven't made an official announcement at dialysis, so I think that will probably happen tomorrow. I certainly don't know what this means for me health wise. Dr. Mezger was a very good doctor and definitely knew what he was talking about. Thoughts and prayers for his family please.
Now for the other side of the spectrum. Today I had my appointment with the nephrologist at UC Davis Transplant Center for an overall status check. I had been dreading and stressing out about this appointment so so much for the past few weeks (on top of finals, that's a ton of stress). They didn't know about the surgeries I've had in the past few months so I was very worried that those would have a negative impact on the transplant situation. The doctor said there would be no problem there whatsoever and that everything else checked out and looked good. All the tests and such are done. He needed to talk to a few people, and then he'll give me a call sometime to let me know when everything will be. So... I'm cleared for the transplant this summer, as far as we know. It's looking possibly like July, but to be honest, we really have no clue whatsoever until he calls. It's kinda hard to get too excited after all I've gone through because of things continually popping up to get in the way, but this is a very good sign. The doctor was extremely positive and encouraging today, something I really could use. Definitely much needed good news finally.
I'm full of a huge mix of emotions. Happy, sad, nervous, excited, curious. Not sure how to feel with all of this. Overall though, hopefully everything is about to take a huge positive step forward, barring any more speed bumps.
Monday, April 15, 2013
SAFBSDgadbs gfsnbd s fnhb sjfdfsbghfsgsbdv vddgvbs s
I just can't get a break.
When the nurse took the ASH catheter bandage off my shoulder today at dialysis, it pulled part of the bandage for the top part of my other incision. This made it start bleeding profusely. The nurse thought it stopped 3 separate times and had to change out a bandage 3 different times. It was ok for a few minutes, then randomly started up all over again. Finally got it cleaned up again and I kept pressure on it for 15 minutes. Towards the end of treatment, my arm started hurting quite a bit as I hadn't brought the pillows to hold it up. That couldn't be enough. When I stood up for the blood pressure check at the end, I felt dizzy and weak. Things are mostly better now, although I'm still not feeling the best.
Just the day I needed after this week. I see the doctor tomorrow for the post-surgery checkup, I have no idea why he wanted to wait a week to check things out. Hopefully I get good news and things can calm down.
When the nurse took the ASH catheter bandage off my shoulder today at dialysis, it pulled part of the bandage for the top part of my other incision. This made it start bleeding profusely. The nurse thought it stopped 3 separate times and had to change out a bandage 3 different times. It was ok for a few minutes, then randomly started up all over again. Finally got it cleaned up again and I kept pressure on it for 15 minutes. Towards the end of treatment, my arm started hurting quite a bit as I hadn't brought the pillows to hold it up. That couldn't be enough. When I stood up for the blood pressure check at the end, I felt dizzy and weak. Things are mostly better now, although I'm still not feeling the best.
Just the day I needed after this week. I see the doctor tomorrow for the post-surgery checkup, I have no idea why he wanted to wait a week to check things out. Hopefully I get good news and things can calm down.
Sunday, April 14, 2013
Goodbye giant fistula
Monday, the new ASH catheter was put into my shoulder. Since I hadn't had a proper dialysis treatment in almost a week because of the problems with the new fistula infiltrating, my potassium levels were too high to have the fistula removal surgery. I went home a bit later. I had a dialysis treatment Monday night with the ASH catheter to lower the potassium. Treatment went fine. I didn't get much sleep at all as I couldn't move my shoulder/neck whatsoever.
I went into dialysis Tuesday morning to have bloodwork done to make sure the potassium was down. They were supposed to send the bloodwork to the hospital when ready. I went to the hospital around 11 like the doctor told me. I wasn't on the chart for surgery preparation so they had to clear a room for me. After I finally get into a room, we find out that I'm not on the surgery schedule. Great. We wait in the room for a few hours and are finally told that I'm on the schedule. The nurse sets up an IV, the doctor talks to me for a minute, the anesthesiologist talks to me also. It's finally time to go. I'm wheeled to the operating room and I'm out within a minute or two.
The surgery evidently took an hour and 45 minutes or so when the doctor expected like 50 minutes. I was in the recovery room before being moved back to the normal room for two hours or so according to my parents. The surgery went fine though. My blood pressure was high after moving back to the normal room so I had to wait a while for the anesthesiologist to finish a surgery so he could give me the ok to go home. We finally got home around 10PM.
The incision goes from my elbow to my shoulder and is quite painful so I'm on this crazy pain medication that makes my head get all woozy, dizzy, and makes me feel awful in general. Yesterday and today, the pain has receded enough so that I can stop taking that medicine and just take regular tylenol. I did have to unwrap the ace bandage from my elbow and extend it all the way from my hand to my shoulder since my hand and arm were severely swelling from the surgical trauma. The swelling has gone down some but my arm is still wrapped up. I'm getting pretty tired of having to hold it up also.Not to mention not being able to use my right arm, or leave the house . It's kinda difficult to type all this with one hand.
I see the doctor again for a checkup on Tuesday. Hopefully this will be the last set of issues I'll have to deal with and that the transplant can happen this summer without any problems.
I went into dialysis Tuesday morning to have bloodwork done to make sure the potassium was down. They were supposed to send the bloodwork to the hospital when ready. I went to the hospital around 11 like the doctor told me. I wasn't on the chart for surgery preparation so they had to clear a room for me. After I finally get into a room, we find out that I'm not on the surgery schedule. Great. We wait in the room for a few hours and are finally told that I'm on the schedule. The nurse sets up an IV, the doctor talks to me for a minute, the anesthesiologist talks to me also. It's finally time to go. I'm wheeled to the operating room and I'm out within a minute or two.
The surgery evidently took an hour and 45 minutes or so when the doctor expected like 50 minutes. I was in the recovery room before being moved back to the normal room for two hours or so according to my parents. The surgery went fine though. My blood pressure was high after moving back to the normal room so I had to wait a while for the anesthesiologist to finish a surgery so he could give me the ok to go home. We finally got home around 10PM.
The incision goes from my elbow to my shoulder and is quite painful so I'm on this crazy pain medication that makes my head get all woozy, dizzy, and makes me feel awful in general. Yesterday and today, the pain has receded enough so that I can stop taking that medicine and just take regular tylenol. I did have to unwrap the ace bandage from my elbow and extend it all the way from my hand to my shoulder since my hand and arm were severely swelling from the surgical trauma. The swelling has gone down some but my arm is still wrapped up. I'm getting pretty tired of having to hold it up also.Not to mention not being able to use my right arm, or leave the house . It's kinda difficult to type all this with one hand.
I see the doctor again for a checkup on Tuesday. Hopefully this will be the last set of issues I'll have to deal with and that the transplant can happen this summer without any problems.
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