Wednesday was the 9th of October. This means it's been over 3 months since Parker and I had our transplant surgeries. Somehow, it both feels like a very long time and like it was just yesterday.
Parker is doing great. Besides a little discomfort sometimes, he's fully back to business, working 2 jobs and going to school.
I'm feeling better and better every week. It's crazy when I think about it. The past 2 weeks or so, I've noticed a huge increase in energy. It's been fantastic. I have a very little amount of nerve pain sometimes but that's basically the only negative effect left over.
Tuesday was my checkup with the doctor at the transplant clinic. I saw a doctor I hadn't seen before, but it happened to be the one that orders my blood work so I was familiar with the name. He went over the medicines I have been taking. He said I could stop taking 4 of the meds, the antiviral, antibacterial, and 2 maintenance/comfort meds. That's awesome! I'm still taking quite a few, but that's a big drop. He answered a few questions I had, all with positive answers. He also said I could go pretty much anywhere, without a mask even, as long as I'm careful to avoid sick people and such. I only have to wear a medical mask when I go to doctor's offices and similar places. The doctor was reading over all of my information and he says "You can eat at restaurants." and continued to go through things. I didn't pick up on it at first, because I thought he had just said I can't. He continued by saying "as long as the food is well cooked." I caught on a second later and asked "Wait, I CAN?!" So I'm free to eat just about anywhere as long as it's cooked, so as of right now, only things like salad and uncooked sushi are off limits. He switched me from once weekly blood work to once every two weeks, probably going to once a month at the end of the year. I don't have to have another checkup until January. I couldn't have asked for a better report. It was so awesome. I wasn't expecting to be cleared for most of those things until January. January came early!
I went by my old dialysis clinic to say hello since I had the okay. Everyone was super excited to see me. It was great to see them too. It must be very rewarding for them to see one of their patients able to improve and move on with their life.
This week has been extremely positive. I guess I have to let it sink in now. It was always January. Now, it's now. Now to just figure out where to go from here. Wow.
Friday, October 11, 2013
Monday, July 29, 2013
Quick thought
Just a short post real quick to share one of the comments the surgeon said to me while I was recovering in the hospital a day or two after the surgery. Dr. Krishnan was discussing how I was doing, that my numbers were all on track and steadily improving. Everything was going great.
The last thing he said to me during that visit was "You are no longer a patient of renal failure."
I can't even describe my thoughts or feelings when he said that. Even thinking about it now, weeks later, and what it means, I don't know how I feel. I guess the best description might be shock. I still can't believe it. It's amazing. I think about that all the time and it still doesn't feel real yet.
Wow, just wow.
The last thing he said to me during that visit was "You are no longer a patient of renal failure."
I can't even describe my thoughts or feelings when he said that. Even thinking about it now, weeks later, and what it means, I don't know how I feel. I guess the best description might be shock. I still can't believe it. It's amazing. I think about that all the time and it still doesn't feel real yet.
Wow, just wow.
Tuesday, July 23, 2013
What's really going on?
Okay, it's about time I said something on here about everything that's happened since my last post, which was a few hours before going to the hospital for surgery.
I guess I'll start that Tuesday morning and work my way forward.
Tuesday, July 9th. We had to be at the hospital in Sacramento at 6:30 AM so we got up pretty early. Parker and I couldn't eat or drink anything of course. We made it to UC Davis Medical Center on time and signed in at the desk. The nurse took Parker back to pre-op before we even sat down. My parents, Julian, and I waited about an hour before we were able to go back to see Parker. We were able to talk to him for a few minutes before they came to get him for surgery at 8:30 on the dot. I had actually looked up at the clock right as it hit 8:30 and when it did, they said it was time to go. We went back to the lobby for a bit before I was called back to start my pre-op. Several different doctors and nurses asked me the same questions. The surgeon that was going to do the procedure, Dr. Krishnan, talked to me. I had an IV put in my hand, and the anesthesiologist discussed his side of the surgery. Then we waited, and waited, and waited... and waited. I was told 20 to 40 minutes over and over. They finally were ready for me to go back to surgery at 1:30 PM. I remember the nurse telling me they were ready to go, and by the time they were moving the bed, I was asleep. My parents said that Parker came out to recovery within 5 or 10 minutes of me going to surgery. They weren't able to see him for an hour or so though. My surgery took about 7 hours. Parker was taken up to a room in the transplant ward on the 8th floor just after I woke up in recovery. Since it was so late, they kept me in the recovery area overnight. Both surgeries went very well.
The next morning/afternoon I was moved up to the Transplant ward, 2 rooms away from Parker. We were put in separate rooms because if one brother is having a harder time recovering or is in pain, the other one usually worries or something to that effect and doesn't recover as well or as quickly either. A friend of mine said it's to stop pillow fights also. By the time I'm alert enough to realize what's really going on, Parker's walking into the room, slowly and unsteadily of course, but he's up on his feet and moving around, which is very good. I was still quite out of it because of all the meds from surgery. I couldn't sleep either because all the nurses kept coming into my room and messing with me. One of the worst examples of this would be at 3:30 AM each morning when they would come in, make me get up (I could barely move as it is), and take my weight. At 3:30! Isn't it early enough when blood work is done at 6:30? Oh well. During the first day and a half or so, you couldn't touch anywhere on the bed without my side going into severe cramps/spasms around the incision. It was rough. The nurses would say "But I haven't even touched you!" and I said that I know but it's just that sensitive. The surgeon had to cut through nerves and lots of muscle to get to where they needed and that's what causes the cramping/spasming. I started feeling much better Thursday, the second day after surgery. Parker came into the room 3 or 4 times. The nurses wanted me to get up and walk around on Wednesday but I just wasn't ready yet. I was able to on Thursday, just not as much as Parker yet. Parker actually got to go home on Thursday. Wow, that seemed very quick, but he was certainly ready! Our mom was running back and forth between our two rooms all the time. I was really glad Parker was being able to go home. Hopefully he could get some much needed rest. The doctors came to talk to me at various times, all saying that everything looked like it was going very well. My numbers were improving already. I talked to the pharmacist and dietician several times also.
Friday morning held an early surprise as I was told I was probably going home sometime that day. Honestly, I wasn't very keen on the idea of going home whatsoever. I was still in a good amount of pain, and it had really only been a short bit of time since a very major surgery. It was Friday and morning and the surgery was Tuesday afternoon/evening. I had been told I would be staying in the hospital a minimum of 5 days, and here it hasn't even been 3 yet and they're talking about me going home. Wow. I would really like to be home, but I wanted to make sure that everything was perfectly well and as it was supposed to be. I didn't feel like I was ready to go.. They assured me that everything was excellent and that I was doing great. I was finally allowed to eat solid food that day, that was nice. Later in the afternoon, the nurse on duty told me that they were highly considering giving me a blood transfusion since my blood count was 7.7, which is low. With everything I've been through the past almost 3 years, everyone had always been very steadfast against blood transfusion as it messes with the numbers for transplant, antibodies and everything dealing with that. Therefore, I was very set against having a transfusion. I asked to speak to the surgeon and found out he was in the OR. The nurse said that they could send the blood back, wait for the doctor, and also recheck my blood cell count. The nurse drew blood from a small poke in my arm and sent it off for testing. While I was waiting for the results to come back, I had to get out of the room. I was just alsdf;laj;sdlfalsdjakld;lajsdl;alfd. I ended up walking around the transplant ward block 8 times. The most I had been around before had been 3 or 4. Luckily, the social worker that I had been dealing with at the transplant center for the past 3 years was at the nurse's station. I let her know what was going on, what I was nervous/worried about, etc. She listened and helped explain things more clearly. Shortly after returning to the room, the blood work results were back. There wasn't a need for a transfusion. My count was 8.6 instead of 7.7. They had taken the previous sample from the central line in my neck, which probably threw the reading off a bit. Whew. I spent the rest of the day talking to doctors, nurses, the pharmacist, the dietician, and any other person that would have anything to do with me. I finally was discharged late Friday night and made it home 5 minutes before midnight. Talk about a long, stressful day.
After reading all that, it sounds like I had an awful time in the hospital. That's definitely not true. The hospital was actually very nice. Everyone on staff, nurses, residents, doctors, nurses, pharmacists,etc. were all extremely professional and everyone double checked each other and made sure I knew what was going on, what I needed to do, and that I understood everything. I had things explained to me a thousand times before I left. It felt like everyone knew what they were doing and did their very best. I couldn't have asked for more. Okay, I admit, the food could certainly have been better lol.
_______________________________________________________________________________________________________________
Home.
It was so nice to be home, even if it was only 3 days in the hospital. Eating real food that tastes good and being able to sleep without being interrupted all the time is great. I was still in a lot of pain for a few days. I didn't really feel like doing anything but lying in the recliner and trying to sleep. I worried quite a bit as I still felt like I might have been sent home too soon and didn't know how I should feel exactly with the different aches and pains.
I have blood work twice a week to follow everything and make sure my numbers are on track and where they're supposed to be. My first "clinic" meeting/checkup was on Tuesday, 1 week after the surgery. I met with the pharmacist to double check everything was going well with all the meds I was supposed to take and to make sure I understood everything involved with that. I have a huge amount of medicine to take right now, it'll taper off around 3 months, and then probably further around 6 months until I probably get down to 2. Not bad. Next, I talked to a social worker who asked how I was feeling and got an idea of how I was handling everything, making sure I was dealing with it well. The doctor was next, he went over all the numbers from the blood work with me, checked me out, making sure everything was progressing as it should be and that I was in good condition. The dietician spoke with me last, going over the adjustments to my diet I could make and describing how things would get better with that week by week. Each of these people were very encouraging and gave extremely great reports on how I was doing. My numbers all looked amazing and will continue to improve for the next few months. After this set of meetings, I took a huge breath of relief, as I didn't really have anything to worry about and everything was going well. I definitely needed this. I could finally relax and be more at ease.
Over the next week, I noticed major improvements every day. I felt better, have been able to sit up more, felt like doing more, have been able to move around better, etc. The transplant staff say things should continue to improve like this for months. That's pretty exciting.
I had my two week checkup today. This time I only saw a doctor. He went over all the numbers with me. Everything is still great and still improving. Awesome. The doctor also said I can expand my diet a little bit since the numbers are improving. When I got home today, I had my first piece of "allowed" chocolate I've had in almost 3 years. Mmmmmm, so good.
Parker is doing well. He actually went back to his apartment a couple of days ago. He's been walking around a bunch. He's still a little slower than normal, but recovering very quickly. He's here at home tonight visiting and resting.
Well, it's done. I've had a kidney transplant. Wow, I can't even believe that as I'm typing it. It still hasn't sunk in for me yet. I guess it will sometime. Right now, it's still hard to believe. Especially since it was my brother that donated it. I can't even begin to figure out what to say to him besides thank you. I'll find a way to express how I feel sometime. I need to figure that out first though.
Thank you to everyone over the past few years that has asked about how I was doing, wished me luck, encouraged me, talked with me, and prayed for me. Thanks so much. I'll keep everyone updated on my progress.
I guess I'll start that Tuesday morning and work my way forward.
Tuesday, July 9th. We had to be at the hospital in Sacramento at 6:30 AM so we got up pretty early. Parker and I couldn't eat or drink anything of course. We made it to UC Davis Medical Center on time and signed in at the desk. The nurse took Parker back to pre-op before we even sat down. My parents, Julian, and I waited about an hour before we were able to go back to see Parker. We were able to talk to him for a few minutes before they came to get him for surgery at 8:30 on the dot. I had actually looked up at the clock right as it hit 8:30 and when it did, they said it was time to go. We went back to the lobby for a bit before I was called back to start my pre-op. Several different doctors and nurses asked me the same questions. The surgeon that was going to do the procedure, Dr. Krishnan, talked to me. I had an IV put in my hand, and the anesthesiologist discussed his side of the surgery. Then we waited, and waited, and waited... and waited. I was told 20 to 40 minutes over and over. They finally were ready for me to go back to surgery at 1:30 PM. I remember the nurse telling me they were ready to go, and by the time they were moving the bed, I was asleep. My parents said that Parker came out to recovery within 5 or 10 minutes of me going to surgery. They weren't able to see him for an hour or so though. My surgery took about 7 hours. Parker was taken up to a room in the transplant ward on the 8th floor just after I woke up in recovery. Since it was so late, they kept me in the recovery area overnight. Both surgeries went very well.
The next morning/afternoon I was moved up to the Transplant ward, 2 rooms away from Parker. We were put in separate rooms because if one brother is having a harder time recovering or is in pain, the other one usually worries or something to that effect and doesn't recover as well or as quickly either. A friend of mine said it's to stop pillow fights also. By the time I'm alert enough to realize what's really going on, Parker's walking into the room, slowly and unsteadily of course, but he's up on his feet and moving around, which is very good. I was still quite out of it because of all the meds from surgery. I couldn't sleep either because all the nurses kept coming into my room and messing with me. One of the worst examples of this would be at 3:30 AM each morning when they would come in, make me get up (I could barely move as it is), and take my weight. At 3:30! Isn't it early enough when blood work is done at 6:30? Oh well. During the first day and a half or so, you couldn't touch anywhere on the bed without my side going into severe cramps/spasms around the incision. It was rough. The nurses would say "But I haven't even touched you!" and I said that I know but it's just that sensitive. The surgeon had to cut through nerves and lots of muscle to get to where they needed and that's what causes the cramping/spasming. I started feeling much better Thursday, the second day after surgery. Parker came into the room 3 or 4 times. The nurses wanted me to get up and walk around on Wednesday but I just wasn't ready yet. I was able to on Thursday, just not as much as Parker yet. Parker actually got to go home on Thursday. Wow, that seemed very quick, but he was certainly ready! Our mom was running back and forth between our two rooms all the time. I was really glad Parker was being able to go home. Hopefully he could get some much needed rest. The doctors came to talk to me at various times, all saying that everything looked like it was going very well. My numbers were improving already. I talked to the pharmacist and dietician several times also.
Friday morning held an early surprise as I was told I was probably going home sometime that day. Honestly, I wasn't very keen on the idea of going home whatsoever. I was still in a good amount of pain, and it had really only been a short bit of time since a very major surgery. It was Friday and morning and the surgery was Tuesday afternoon/evening. I had been told I would be staying in the hospital a minimum of 5 days, and here it hasn't even been 3 yet and they're talking about me going home. Wow. I would really like to be home, but I wanted to make sure that everything was perfectly well and as it was supposed to be. I didn't feel like I was ready to go.. They assured me that everything was excellent and that I was doing great. I was finally allowed to eat solid food that day, that was nice. Later in the afternoon, the nurse on duty told me that they were highly considering giving me a blood transfusion since my blood count was 7.7, which is low. With everything I've been through the past almost 3 years, everyone had always been very steadfast against blood transfusion as it messes with the numbers for transplant, antibodies and everything dealing with that. Therefore, I was very set against having a transfusion. I asked to speak to the surgeon and found out he was in the OR. The nurse said that they could send the blood back, wait for the doctor, and also recheck my blood cell count. The nurse drew blood from a small poke in my arm and sent it off for testing. While I was waiting for the results to come back, I had to get out of the room. I was just alsdf;laj;sdlfalsdjakld;lajsdl;alfd. I ended up walking around the transplant ward block 8 times. The most I had been around before had been 3 or 4. Luckily, the social worker that I had been dealing with at the transplant center for the past 3 years was at the nurse's station. I let her know what was going on, what I was nervous/worried about, etc. She listened and helped explain things more clearly. Shortly after returning to the room, the blood work results were back. There wasn't a need for a transfusion. My count was 8.6 instead of 7.7. They had taken the previous sample from the central line in my neck, which probably threw the reading off a bit. Whew. I spent the rest of the day talking to doctors, nurses, the pharmacist, the dietician, and any other person that would have anything to do with me. I finally was discharged late Friday night and made it home 5 minutes before midnight. Talk about a long, stressful day.
After reading all that, it sounds like I had an awful time in the hospital. That's definitely not true. The hospital was actually very nice. Everyone on staff, nurses, residents, doctors, nurses, pharmacists,etc. were all extremely professional and everyone double checked each other and made sure I knew what was going on, what I needed to do, and that I understood everything. I had things explained to me a thousand times before I left. It felt like everyone knew what they were doing and did their very best. I couldn't have asked for more. Okay, I admit, the food could certainly have been better lol.
_______________________________________________________________________________________________________________
Home.
It was so nice to be home, even if it was only 3 days in the hospital. Eating real food that tastes good and being able to sleep without being interrupted all the time is great. I was still in a lot of pain for a few days. I didn't really feel like doing anything but lying in the recliner and trying to sleep. I worried quite a bit as I still felt like I might have been sent home too soon and didn't know how I should feel exactly with the different aches and pains.
I have blood work twice a week to follow everything and make sure my numbers are on track and where they're supposed to be. My first "clinic" meeting/checkup was on Tuesday, 1 week after the surgery. I met with the pharmacist to double check everything was going well with all the meds I was supposed to take and to make sure I understood everything involved with that. I have a huge amount of medicine to take right now, it'll taper off around 3 months, and then probably further around 6 months until I probably get down to 2. Not bad. Next, I talked to a social worker who asked how I was feeling and got an idea of how I was handling everything, making sure I was dealing with it well. The doctor was next, he went over all the numbers from the blood work with me, checked me out, making sure everything was progressing as it should be and that I was in good condition. The dietician spoke with me last, going over the adjustments to my diet I could make and describing how things would get better with that week by week. Each of these people were very encouraging and gave extremely great reports on how I was doing. My numbers all looked amazing and will continue to improve for the next few months. After this set of meetings, I took a huge breath of relief, as I didn't really have anything to worry about and everything was going well. I definitely needed this. I could finally relax and be more at ease.
Over the next week, I noticed major improvements every day. I felt better, have been able to sit up more, felt like doing more, have been able to move around better, etc. The transplant staff say things should continue to improve like this for months. That's pretty exciting.
I had my two week checkup today. This time I only saw a doctor. He went over all the numbers with me. Everything is still great and still improving. Awesome. The doctor also said I can expand my diet a little bit since the numbers are improving. When I got home today, I had my first piece of "allowed" chocolate I've had in almost 3 years. Mmmmmm, so good.
Parker is doing well. He actually went back to his apartment a couple of days ago. He's been walking around a bunch. He's still a little slower than normal, but recovering very quickly. He's here at home tonight visiting and resting.
Well, it's done. I've had a kidney transplant. Wow, I can't even believe that as I'm typing it. It still hasn't sunk in for me yet. I guess it will sometime. Right now, it's still hard to believe. Especially since it was my brother that donated it. I can't even begin to figure out what to say to him besides thank you. I'll find a way to express how I feel sometime. I need to figure that out first though.
Thank you to everyone over the past few years that has asked about how I was doing, wished me luck, encouraged me, talked with me, and prayed for me. Thanks so much. I'll keep everyone updated on my progress.
Tuesday, July 9, 2013
Today
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.
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.
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.
Sunday, April 7, 2013
Friday, April 5, 2013
Fistula surgery
I'm scheduled to have surgery to remove my original fistula at 1:30 Monday afternoon.
I called the doctor's office today to tell them about the pain I've had in my arm for the past couple of days. I was told that I should go to the office immediately. The doctor had surgeries all day, but the nurse that I usually see was very concerned. She paged the doctor and asked him to come to the office to go over the information whenever he had a chance. She thought that something needed to be done very soon. It turns out she was right. I was called later and told that the doctor set up a surgery to remove the original fistula on this coming Monday and that I was to start using the new fistula tomorrow.
Hopefully everything with the new fistula works how it's supposed to work. I'm nervous about the surgery, but very excited to have this crazy thing out of my arm.
I called the doctor's office today to tell them about the pain I've had in my arm for the past couple of days. I was told that I should go to the office immediately. The doctor had surgeries all day, but the nurse that I usually see was very concerned. She paged the doctor and asked him to come to the office to go over the information whenever he had a chance. She thought that something needed to be done very soon. It turns out she was right. I was called later and told that the doctor set up a surgery to remove the original fistula on this coming Monday and that I was to start using the new fistula tomorrow.
Hopefully everything with the new fistula works how it's supposed to work. I'm nervous about the surgery, but very excited to have this crazy thing out of my arm.
Thursday, April 4, 2013
Blah
Blah.
I can sum up my feelings over the past month with just that. Blah.
Late February, I had surgery on my forearm to create a new fistula since the original one in my upper arm grew out of control (See previous post for a pic - Hulk Smash!) due to me being too healthy or something crazy like that besides the kidney nonsense. I knew I'd have to take some time to recover but I really don't like not having everything working properly all the time. Having one kidney that doesn't work and another that's not even there is bad enough. For a few days after the surgery, I couldn't use much of my right hand or arm. Over a couple of weeks, I was able to move it again, although my wrist still feels like it's been in a cast or something when I rotate it.
Overall, the recovery process from that surgery was the roughest since I've been out of the hospital when all this started. I'm used to jumping back into things and when I haven't been able to do that, it's been extremely frustrating.
This is compounded by the fact that I may only use this new fistula for a month or so if I'm able to go through with the transplant. Yeah, that'll be great, but it's just annoying right now, knowing I went through this when I might not even have to be on dialysis much longer. (Thank God.) Some of the technicians at dialysis were even questioning if I should have the procedure done so close to the possible transplant. Those were the doctor's orders however.
He couldn't let me go with just the surgery though. I've had dialysis through something called a buttonhole for the past year and a half or so. It's similar to an earring hole. One technician sticks my arm in the same place for something like a week and a half of treatments (5 times or so), creating a small tract where it's easier for the needles to go through. Once this buttonhole is made, they can switch to a type of needle that is not quite as sharp, which is safer and easier for the process and the technician. It's much better for me too as I only had to get stuck in the same two spots and it didn't hurt whatsoever. The doctor seemingly randomly decided (after a year and a half of using the buttonhole, mind you) that he didn't like buttonholes whatsoever and that they were terrible so he made me stop using it. So now I'm back using the regular sharp needles and being poked all over my upper arm. Yay. The regular needles aren't bad, I barely even notice the stick anymore but the buttonhole was still far better.
My forearm is feeling much better, besides the weird wrist cast feeling, but now my upper arm is starting to seriously bug me. Part of it is now pushing on the stent that was put in last year when I move my arm certain directions. Owwwwwwwwwwwww, super sharp pain. To add to the fun, today, the main part of the original fistula decided to expand a little more so my arm is aching from the elbow to my shoulder. Bah, I can't stand complaining but if I'm typing all this up anyway, I might as well get it out there.
The new fistula needed around 6 weeks to mature enough so it could be used at dialysis, so they should be able to start with it next week. As long as it works properly(prayers please!), this annoying original fistula can hopefully be taken out soon afterwards. The dialysis technicians are saying that the new one shouldn't act like the original since I hopefully won't be using it for very long. I can't wait to get this stupid thing out of my arm so I can move/sleep/just be somewhat comfortable in general again. The vascular surgeon certainly knows his stuff, but he's far from a pro when it comes to the aesthetics of the incisions. I have two nice large scars on my upper arm. I was hoping that when he takes the original fistula out, he would make the same type of incision just above the other two so I could have like Wolverine claws marks or something. No luck there, he says it'll probably be a big incision going up my arm. Oh well, guess I could always say I was bitten by a shark or something if it's bad enough.
The rough recovery has been frustrating because of more reasons than just taking longer to get back to what stands for normal at the moment too. I haven't really felt like doing anything which just makes things worse when I need to do things or when I just feel like getting out and doing something. It's rough enough to do things as a dialysis patient but it's been worse this past month. Everything just compounds in on itself when I want/need to do things but I just don't feel like it whatsoever.
For maybe the first time ever, I'm behind in some of my classes in school. I've always been just right with all my schoolwork. I might procrastinate and wait until the last minute but I've always gotten it done and kept up. I've fallen behind a bit this month and it bugs me so much. I've never let me myself turn in things late even with instructor permission, but I'm having to now and I still can't make myself be able to do some of the work. It's so aggravating.
I'm taking the capstone class of my major this semester, even though I'm not graduating this semester. It feels like I've got another major problem with this class. Even though I think I have a great group for this project, I feel like I'm not doing anywhere near what I should be for my part. I don't have the energy or focus to do what I think I should be doing and my arm is also a physical hindrance with the project. I know I might have a lot on my plate but I don't think it's fair to the other people in the group. They shouldn't have to do extra to make up for what I should be doing for my part. Blah, again. Granted, I don't know what I want to exactly do with my major after I graduate (besides work on films somehow) so I wouldn't exactly be specializing in anything directly on this project from my skill set (most of the time, I'm not even sure what that is). Still, I want to be able to do my part and not have to have the other people do more work because of me.
That's another thing that seriously frustrates me. I don't know what I want to do with the major when I graduate. I've changed majors twice already and I've been in school far too long, even with a break. I think I'm in the right major, it feels much better than anything else has, but I just don't have any idea what I want to focus on with it. I just feel like I've wasted so much time just doing nothing. Grr. Just ready to figure out a direction I guess.
I do know that whatever I do with the major, it's probably going to deal with people. Certainly not my strong point. Sometimes I think I should have just started originally with something I knew I could do easily, instead of trying to find something I knew I would enjoy. I just couldn't see the point of going into a career that I'm going to spend most of my time in if I couldn't stand my job. I'm seeing that might have been a faulty viewpoint now but oh well. I seriously wish I was better in dealing with people. I know I'm never going to be extroverted, but I would like to be able to be able to talk to people. It's so hard for me to just start a conversation, or even keep one going sometimes. I'm really trying to talk to other students at school, but it's really tough for me. At times, I don't know what to say, or sometimes, I don't even feel like it. I wish it wasn't so damn hard for me to just be social.
I know it would probably help me feel better about my whole situation with dialysis, school, and just day to day altogether if I had some friends to hang out with in the area. I know I'm probably one of the people that stick with the "a few good/close friends instead of many general friends" but in my case, the distance definition of close is certainly not in the picture. My best friend lives on the other side of the country, and the friends I do have in California live hundreds of miles away. Blah, again. I know it's probably my fault for not being able to deal with people well, but that doesn't make it any easier. I know I should probably try a college/20/30 somethings youth group or Bible group to try to meet people but I don't know, big groups seem like they'd make the problem even worse. Whatever, guess I'll figure it out someday.
I can't wait until summer. I could say that's because of the normal reasons, like school, but it's certainly 100% because of the looming possibility of getting a transplant. I so can't wait to have energy again. It's weird, through all this time with dialysis, I've stopped bouncing my feet or flicking pens or whatever random things I used to do, just because I simply don't have the energy to keep up things like that and make it through a normal day without being exhausted at various times throughout the day. I'd love to be able to do whatever I felt like without worrying about feeling tired. I think the lack of energy has been one of the hardest things to adapt to. I've gotten used to the crappy feeling during the day after dialysis, the dehydration headaches that come and go, the absolutely ridiculously crazy diet that cuts out both bad and normally healthy things, staying up even later than I normally would as a night owl (if I sleep for too long, I feel awful in the morning, another crazy dialysis thing I guess), even having to spend hours out of the day 3 times a week on dialysis treatments. Another thing to get used to, which I think may be the hardest is the difficulty concentrating / lack of focus / trouble reading. I love to read. I used to read all the time. News, websites, books, comics, whatever I could find. I'd absorb it. Since I've been on dialysis, I've only really been able to read things broken up into small amounts. Anything with large paragraph structures make my head go all wobbly and I lose focus and have to read things over and over. IT'S SO FRUSTRATING. Luckily many things online are broken up into smaller bits so I spend a lot of time reading various websites. I also dived back into collecting comic books, as they're cool to look at the art, and easier to read through dialysis. I can't wait to be able to read normal books again though, I have a huge stash of books waiting. It certainly doesn't help with school assignments either. Ugh, it takes so long to get through school books now. Just let me read it normally.
My family has been so great. I will never be able to thank them enough for everything they've done for me and do for me on a day-to-day basis. I can move around fine, drive, take care of myself, whatever you want to call it, but there's still so much they do for me that helps an incredible amount. Just one example out of so many things: My family changes the meals they cook at home to work for my renal diet and try their best to go places that fit my diet the best when eating at restaurants. This might not sound like a big issue, but when the diet is as crazy as this one, it's a huge issue. I have to fuss at them to eat somewhere they want to eat sometimes. There's so much else each of them do for me, I can't even begin to describe it all or thank them. My parents and brothers have been so incredibly supportive. I feel especially bad that my youngest brother Julian has had to basically grow up for the past 3 years dealing with me going through all this. Middle school is rough enough without adding that into the mix. I know I'm not completely disabled by a long shot, but it still has to be rough on him. I don't even know what to do about Parker, my brother that is going through the transplant ordeal with/for me. What do you even say about that? It's not even possible to even say thank you properly for something like that. I'm so blessed to have such a wonderful, supportive family. I don't know how I would ever have made it through all of this without them. I have to also thank everyone for their thoughts and prayers. I appreciate them more than you can know. Keep them coming, not out of this yet.
So... as it stands now, I start using the new fistula next Wednesday or so. We use that for about 2 weeks, make sure it's working properly, then I probably get the original fistula taken out (wow, there actually is a normal arm under there?). I'm thinking that after that incision/recovery process is finished, then we can go ahead with the transplant surgery. No set date for either surgery at this time, still looking at sometime during the summer for the transplant.
I guess typing this up helped a bit, just getting it out. That's pretty difficult sometimes. Dialysis and everything that goes with it can be quite complicated and frustrating. I know this post has been pretty scatterbrained and has jumped back and forth. Oops. I've talked about a bunch of things I had no intention of bringing up that have no connection to dialysis and what this blog is usually about, but oh well, it just helps getting it out of my head. My dialysis-fried brain's working well enough that I can pick out tons of run-on sentences and improper preposition usage, but I can't think well enough to fix them all. Oh well.
I'll try to keep this up to date on what's going on. Hopefully getting close to resolving all of this. I just pray that God gives me (and my family) the strength to keep pushing through, that the surgeries and recoveries go well, and thanks for allowing me to get through everything that I have, even if it's been tough. Almost there.
Saturday, March 16, 2013
Pictures
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| This is my original fistula. The actual fistula place itself is on the inner side of my elbow area. This goes all the way up into my shoulder. That's just from having great blood flow through the fistula. My arm looks pretty messed up to say the least. Hulk smash! |
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| This is where the new fistula was created. Hopefully it doesn't do the same as the first one. |
I haven't put up any pictures dealing with any of this in a very long time. Here you go. Wahoo.
Saturday, March 2, 2013
Long awaited update
I know I said I'd try to update this more and I completely failed at doing that. Oops. I'm going to try to make up for that with a major update right now.
The past two weeks or so have been incredibly stressful. I've had 4 or 5 doctor appointments and a surgery. Back in December, I was told that I needed two tests done before I could be put back on active status for a transplant. I had both of these tests in the past two weeks.
The first one came out fine without any issues whatsoever. The second one was the one I was very worried about. After a dreadful couple of hours, I found out there were a few minor issues, but nothing to worry about at the moment. Everything overall seemed okay. The doctor said that he sent a message to the transplant center giving his okay. That's those two issues/worries out of the way.
This Tuesday I had a new fistula put in my arm because the one I've had is actually too strong. The flow rate of the blood through the original fistula is something like 8 times what it should be. The doctor said the new fistula has to mature for 6 weeks or so before I can start using it for dialysis. If everything is fine with it through dialysis, then he will take out the original fistula. Woohoo.
But wait, there's more!
I was called by the coordinator of the transplant program on Thursday. He said that everything was clear for me to be put back on active status on the transplant list. He said that a living donor, especially one closely related, would be much better than any from the list, so we should go ahead with our plan but that he would keep me on the list just in case something came up between now and summer.
This means that basically everything is good to go to have the transplant surgery this summer, just need to schedule it. Oh my.
The past two weeks or so have been incredibly stressful. I've had 4 or 5 doctor appointments and a surgery. Back in December, I was told that I needed two tests done before I could be put back on active status for a transplant. I had both of these tests in the past two weeks.
The first one came out fine without any issues whatsoever. The second one was the one I was very worried about. After a dreadful couple of hours, I found out there were a few minor issues, but nothing to worry about at the moment. Everything overall seemed okay. The doctor said that he sent a message to the transplant center giving his okay. That's those two issues/worries out of the way.
This Tuesday I had a new fistula put in my arm because the one I've had is actually too strong. The flow rate of the blood through the original fistula is something like 8 times what it should be. The doctor said the new fistula has to mature for 6 weeks or so before I can start using it for dialysis. If everything is fine with it through dialysis, then he will take out the original fistula. Woohoo.
But wait, there's more!
I was called by the coordinator of the transplant program on Thursday. He said that everything was clear for me to be put back on active status on the transplant list. He said that a living donor, especially one closely related, would be much better than any from the list, so we should go ahead with our plan but that he would keep me on the list just in case something came up between now and summer.
This means that basically everything is good to go to have the transplant surgery this summer, just need to schedule it. Oh my.
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