Checking In

 Going along doing my thing, One Day At A Time.

Took a pic to share in case anyone is curious about the dialysis:

Because I have a graft (a loop graft) the needle on the right goes in at the top. It takes the blood out and runs it through the machine. Then the clean blood comes back in through the bottom needle and while I DO feel much better doing hemodialysis than I did doing PD dialysis, I'm always tired on dialysis days and I usually nap or at least laze around because standing up sometimes gives me a headache. My body feels achy and sore and really it shouldn't be a surprise because dialysis is like making your heart run a marathon...do I look like a person who WANTS to run a marathon?

I am grateful anyways for every day, even the dialysis days.

Keep breathing and cherish the moments!

So...

I haven't checked in for awhile but I've been going along getting along and dealing with my life day by day...I am going three times a week to dialysis and so far things are on track. Graft works well...needles go in easy...very few alarms go off...I've sorted that I must eat so I have a nepro during treatment and my bp hasn't dropped the last few times so I think that's the trick. So I've gotten to a place where I can breath and endure and I've been reading a lot but I sometimes feel like I want MORE to do but I barely have enough time in a week to do any of the things I DO do...so I'm still sorting my life! But...I am still HERE!

Adventures

Well, I have not checked in here for a long while and I was going along doing my thing for awhile and then...
I had a bowel blockage in a hernia under my belly button and as of Dec 16th 2017 I got sick to my stomach and it only got worse from there! I checked into Bracebridge hospital on the 18th (not by choice but I had to because I was very sick) and I was instructed to bring my cycler in there and do my dialysis there until Orillia could get me transferred. On the 19th I was given a tube in my nose to help suck out the stuff in my belly and help stop the puking all day. Unfortunately the tube bothered me and I still puked a time or two (excessive yuck in my belly :( ) Then on the 20th I was transferred to Orillia hospital . That evening I had emergency surgery to correct the hernia and blockage (they said they were going to take out my PD catheter and I would have to switch to Hemo dialysis) but when they did the surgery it was a simple problem and they did NOT remove the catheter after all. So I had staples in my  belly, a PD catheter still attached and then they installed a permanent access line for Hemo dialysis in my chest and sent me down for 3 hrs of dialysis. At this point I still had the tube in my nose and I still hadn't eaten anything ...I hadn't eaten anything but a few crackers since Sat the 16th. I can't remember if it was the 22nd or the 23 when they started giving me liquids and I had chicken broth, jello, and tea and the chicken broth tasted like heaven! (It was just standard chicken broth you know...hospital chicken broth...) but I hadn't eaten in a LONG time by then so it tasted pretty darn good!!
I think actually they started liquids on the 23 because in the night of the 22nd my nurse let me take the tube out of my nose and I had already had two 3 hr sessions of dialysis by then so having the tube out made me feel a hundred percent better!
So I was there until Xmas eve and I had another session of Dialysis and then they allowed me to go home for Xmas!! I was very weak and didn't do any of the things that I planned for Xmas but I was at HOME with my boys and couldn't have been happier to be anywhere else!
Even pop and Denise came by to see us and say hi!
Since then I have been going back and forth to Orillia for dialysis 3 times a week. I was waiting to be able to go to Huntsville which is closer but they had to know things were all good first before they could send me. My access line was NOT very good though and as of Jan 11, 2018 I had another surgery to replace it. Without checking it I started dialysis in Huntsville on Sat Jan 13, 2018 and...my line worked!! I have been going there Tues, Thurs and Sat every week and hopefully after I see the surgeon again in Feb. I will be able to go back on PD again.
In the meantime this is just a speed bump in the road (or if you like an adventure) and it too will pass!
After ALL of that I must just say that I am grateful to be here, alive and still kicking!!

Night Cycler

Getting ready:

Ready:

Dialysis

Well, it's been a couple of weeks. Every night around 10 I hook up to the machine. Sometimes I have alarms but so far they are from my exit care site and the dressing pinching the tube which means I have to "fix" it and carry on. and other than that it fills, dwells and drains 3 times every night.
I'm handling it but sometimes I'm scared about it. Every day is a new day fraught with worry, stress and trouble but I try hard not to worry about any of it. I'll deal with it when it hits me but I always have to be careful and mindful and pay attention and I think sometimes that is a real difficulty for me. I HOPE that I can stay on top of it. Is it the day when I can look back and say isn't it amazing the care I take of myself? I don't think it's today...I have ideas about what could happen and I freak myself out way too much if I think about them so I try not to. ONE DAY AT A TIME. Sometimes even a moment at a time if that's how you get through it. But...I am still alive and so far am still ok so I have to be grateful for that.
I'll post a couple of pics to show off my machine...and keep on keeping on.

Tube in

On Wed. I had my tube sorted but for now until Mon it is covered up! My tummy is itchy but it's ok otherwise...

Clinic

Well I am home from clinic and trying to digest the latest news.
I know that my kidneys are failing and it will be soon time to start dialysis but I really thought I would have more time. :(
I have dropped to 12% function and over the next 6 weeks will somehow have to get my head ready to handle the reality that I live in.
It's not easy.
I want to wait until hubby is off work to go through this but I don't know if I'm going to make it until then.
We will see.
Whatever will happen will happen. I am sure I can handle this and I'm gonna figure it out. It might be hard sometimes though and I'm sure the monthly appts to dialysis will get stressful but somehow I'm gonna find my way.
In the meantime I am trying to get my head ready!!

Waiting

I'm tired.
I go to clinic on Tues. and we'll see if I have dropped more function but I think maybe I have because even with my shots I'm tired and really have no energy to do much.
Hopefully this weekend we'll go to mom and dad's to see Michelle and have a visit and that will be fun but it will also be tiring.
I just wonder how long it will be until I have to start dialysis and how much time of being tired and without energy I will have to endure? I have so many jobs to do and no energy or desire to do any of them. :(
I really just wish that I can hold on until after hubby is off for the winter because we will have a week of training for dialysis to go through and I need him to be with me and learn how to take care of me :S
It could be that long or longer even and sometimes it gets difficult to deal with.
I am very isolated. Usually this doesn't bother me. I remember back when I used to work and I was forever getting sick with other people's germs. Isolation keeps me healthy. Sometimes though it's frustrating. Sometimes when I have the energy Gib and I go for a walk but even that I avoid...even though I KNOW that I should do it anyway...I look fine. I look good even. The more weight I lose I even look better but it's because I hardly eat and really don't enjoy it much either...How much of it can I endure? I MISS food and I miss things being delicious...I don't really even remember the last time I actually TASTED something good...everything is really pretty blagghhh and that is pretty hard to endure too. I always liked food. I always liked making new goodies for our parties and now I pretty much have no idea. Pretty much don't care much either cause I can't really enjoy it anyway :( but...I will keep on keeping on...
I need NEED need to drink more. My nurse says at least 6 cups a day and I know some days still I just can't do it :( it's very very hard. You would think the pain of gout foot would keep me drinking but instead I forget and then the foot starts again and I have to drink more than 6 cups to straighten me out. I wish I was better at all of this, I wish it was easier than it is. :( But again, I will keep on keeping on...because I have to figure it out. Somehow...
I think I'm supposed to learn something from all of this and I don't really know what that is. Right now all I know is that I'm tired. I have been many kinds of tired in my life and many of them have been much more difficult than this although this is a very slow, draining, long-term process and is so slowly gradual that I don't even really realize how bad I feel. I am just tired. Tomorrow I'm sure I'll feel better...

Clinic~09/19/2013

Regular check up.
Levels all good.
Sugars need a bit of work.
Need a little more exercise.
Making an appt on next clinic appt (Dec.) to have buried catheter put in so I'll be ready for dialysis.
Then IF I crash there will be no worries as I will be ready to dialyse immediately. ;)
NOT there yet!

I Have Decided...

I have had some weeks of stress and worry and indecision about what to do.
Today hubby and I had an appt in home dialysis at Orillia Soldier's Memorial Hospital to be educated about PD dialysis. Originally I told mom and thought to myself that I would choose to use the night time cycler because it seems to be the least intrusive choice for my life and the way in which I prefer to live it. My diabetic nurse suggested Hemo might be better and wanted me to get a prepared by getting a fistula and asking the doctor about this. I didn't want a fistula...still don't actually but, immediately freaked out about it and did have a convo with Dr. where he suggested I lose 10 pounds and have a PD catheter buried so it would be ready for use when I get closer to the time of failure and dialysis. So I said ok and did manage to lose the weight but then expressed that I wanted more information so I could be sure  was making the correct choice for me at my last clinic appt. So we made today's appt. and went to speak to Jodi and learn about manual PD, connections, and the night time cycler machine. I could also learn about Hemo as well but after today I don't believe it is necessary. I'm pretty sure I can handle this. I'm pretty sure eventually it will become just as much a part of life and second hat to me as taking my insulin or aranesp shots (which I freaked out about and hated in the beginning as well) and I will do as I have always done. I will HANDLE it!
So next clinic appt. in June I will request appt for buried catheter and get prepared for kidney failure.
HOPEFULLY it will still be a long way off yet! ;) But, I will be READY and I feel much better about it.

Feel Better

I have three months till next visit to try and lose 10 pounds so I can have a buried tube put in for PD dialysis and then will be ready for it when it is needed or if I crash from sickness and lose my kidneys all of a sudden.
I'm happier knowing that I CAN do PD because I think it will be the least intrusive and easier to manage once I know what I have to do and get everything figured out.
I didn't really realize how much I DON'T want a fistula and hemo dialysis until I was sure that I don't HAVE to have it. WOW!
I hope it is still a long way away from me but I'm ready to face the journey if it is not.
Dialysis will be ok.
I CAN do this!!

From now on Aranesp will be taken every 2 weeks. ;)

Tuesday

Tuesday hubby and I have an appointment...FINALLY.
I've only been waiting two and a half months now. :S
I didn't want to even do it. I tried to avoid it as long as possible but, the facts are the facts.
I need help.
So, cross fingers the appt. goes well and everything goes forward for me to receive disability help.
My medications just get more and more added trying to keep me in line and more and more expensive. Also, more dosages of insulin, and sooner or later I will also have to deal with dialysis of some sort.
I am trying hard not to be scared and worry about what's coming later.
What will be, will be.
I will face my decisions when they come and in the meantime try to stay positive and keep working on the things that I CAN do. No matter how difficult, no matter how frustrating, no matter how depressing, no matter whether or not I want to give up or not....just KEEP ON!
KEEP trying.

Trying to Stay Positive

Things are getting out of whack...obviously the disease is progressing...my blood count is low so I have begun taking a hormone shot in addition to insulin to help with anemia...at least it is only once every 3 weeks...I begin a new BP med because my BP is elevated and has been for awhile now...my sugars are high so I have promised to KEEP trying to eat right and get more exercise and see in 2 months if it is helping at all otherwise I'll be beginning meal time insulin 4 times a day as well! :(
My gout meds have been lowered again so I MUST keep on track with fluid intake or that is going to HURT me...
I have a NEW Dr. he seems pleasant and competent but now I'll have to get used to him!

My creatinine is high and my kidney function has dropped again...when this started I was at 37% I believe and now I am at 22%...no wonder I get tired so fast!

What worries me quite a lot is that at 15% usually it's time for dialysis. :(

Yesterday I was in shock and VERY blue and distressed but today I am trying to remember that i DID lose 5 pounds so the diet changes and beginning exercises ARE working even if it is SLOW.
So I MUST and WILL keep on trying to eat right and get more active and keep dialysis at bay for as long as possible.

I want to TRAVEL! So I better get my butt in gear and make that happen SOON!!