3 years post-transplant

I've been wanting to write something to update this blog for over a year. I seemingly haven't been able to get into what I've felt was the right mindset to properly express my thoughts. I've also thought that I couldn't word everything as I wanted it just so. It may be forever if I try to word everything perfectly, so I might as well just go for it. It's been almost 3 years since the last update here anyway.

August 31st will be six years since life, more so my body, told me to stop for a while.  Spending a month in the hospital and three years on dialysis was certainly not in my plan for that time in my life. We don't get to plan out everything about our lives however and that's a good thing.  My brother Parker selflessly and heroically donated one of his kidneys to me in July 2013. I know I've written about these things before but I'm still amazed and so thankful. I always will be.

The beginning of this month held my checkup marking 3 years since the transplant. I still get somewhat worried from time to time that something might be going wrong.  There's no reason for that however as all the blood work tests and such are still great. My doctor is very happy with everything and the visits, which are now basically yearly, have become mostly the doctor catching up with what's going on in my life in addition to a couple of minutes of chart review. The transplant center staff is still fantastic even this long after the transplant.

It took quite a while for me to adjust to normal life after living the dialysis lifestyle, and especially the diet, for so long.  I slowly worked myself back into going out and about, back into a "normal" lifestyle with the only catch being taking meds twice a day. No problem there at all.  I finished the last semester I needed to get my degree the next spring.  I started work in a retail store a little over a year after the transplant. I've gladly returned to one of my favorite hobbies, attending concerts, with no drawbacks. I've met some incredible people in the last 3 years that have become some of my best friends. You know who you are. Thank you so much. I love you all.

I've been trying to get better with people slowly, and I think I have at least a little bit. Unfortunately I haven't gotten much better with myself. I am still having a hard time finding the ability to believe in myself.  This is certainly one of the biggest issues I need to work on in addition to continuing to improve socially.

It has been difficult to figure out how to move forward after being stuck for so long. Getting back to a normal life was somewhat of a challenge in itself.  Figuring out where to go post transplant and reassimilation into the world has been rough. I'm not sure where to go from here and it's been on my mind very often over the last year or so.  I was stuck on that middle section of the road on that sign for so long that finding the proper direction to continue forward is challenging. I definitely know it is past time to begin moving forward again however.  I felt stuck for far too long and I'm ready to begin changing that positively. I need to find a new direction and hope to begin doing so soon.

Those 3 years and the 3 years since have certainly taught me a great deal about life.  I'm trying to learn more every day from here. What's life if not opportunities to learn? I need to find what excites me, what makes me tick. I'll never be able to show or tell Parker how much what he did for me means and how thankful I am. The same goes for my parents, my brother Julian, other family, friends, medical staff, and everyone else who helped me through that arduous time. I think the best way to show that right now is just to live life now.  I just have to go live it.

3 months (?!?!?!)

 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.

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.

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.
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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.

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.

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.

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.