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.

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.

More!

Okay, evidently everything that has been going on hasn't been enough, so things need to be more complicated. Although they say it's working fine, my new fistula isn't ready to be used for dialysis yet. The doctor thinks it's still very important to remove the old one ASAP, but I need a way to have dialysis. The surgery tomorrow has been changed to the doctor putting a central line catheter into my shoulder for dialysis. I had one of those when I first started all this. This means that the surgery to take out the original fistula is probably going to be on Tuesday. There's a possibility it will happen Monday, but the doctor isn't sure yet.

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.

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.