Our 1st Kidney Walk

Today was the National Kidney Foundation walk in St. Louis.  It was our 1st time walking, and hopefully will not be our last. It amazes me the number of people who came out to walk for someone who has had kidney disease touch their lives. It rained the entire day, but people still were so happy to be there.

Except for Jim...he was feeling miserable and cold in the rain. His back hurt because of the extra fluids he is carrying, He was able to walk a little bit of the mile walk but then seemed happier to go to lunch.

His last appointment on Thursday the doctor told him (as I have also been telling him) he needs to start walking or at least have more movement during the day. With that in mind, he has started walking around our circle drive with a little detour of heading into the woods to look for mushrooms. It seems though when he starts more movement, then somehow gout sets in. Even with him drinking his tart cherry juice all week, he came home with pain in his left ankle after the walk and is now sitting with ice on it. Such a vicious cycle we just are not able to figure out.

Here are some pictures from the walk. Hopefully when we attend next year, our "Team Jim" will be much larger and he will be able to wear a yellow lei that designates him as a "kidney transplant recipient".

P.S. Thanks Joyce for walking with us along with "Jill's Kidney Beans".

Keeping the Faith

Things for Jim have gotten a lot better. He continues to do well on his dialysis. He has been lucky enough not to have a gout flare up for the past couple weeks. This seems to get him down more than his dialysis does. Since his catheter has been repaired, he gets good drains and fills at night.

Someone recently posted this picture on one of the many Facebook kidney sites that I follow. When you see something like this, it really puts a lot in perspective. No one deserves to have this growing inside them.

A Polycystic Kidney - about the size of a football.

I continue to do searches every day and we continue to get people with questions about donating. We have some friends who are being tested and we continue to keep our fingers crossed that we will someday very soon get that call that will make Jim’s life much easier.

While I was in the waiting room a couple of weeks ago at Barnes, I ran into some friends of mine that were waiting with their family members going through a kidney transplant. Marcia was the mom giving her son Evan her kidney. I knew Marcia from grade school. After witnessing their excitement and actually being able to say hi to Marcia post-op (she looked great by the way), my excitement and faith that this WILL happen is what keeps us going. It may not be as far fetched as we thought…..in fact, hopefully it will be just around the corner.

What a Flipping Pain

Dialysis for Jim has been going really well. That is until last night. While Jim some times has pain during the initial draining process, last night he was experiencing excruciating pain with both the fills and the drains. So bad it brought tears to his eyes. Knowing something wasn't right, when his cycle ended at 6:00 am we immediately called his PD nurse. She wanted him to do a manual exchange to see if the drain fluid was cloudy. If so, this meant he had peritonitis (an infection in the peritoneal cavity-not a good thing). Fluid was clear which is good. Peritonitis was ruled out.

She wanted to see him at the clinic.Upon examining him, their 2nd option was that his catheter had flipped. To confirm this an x-ray was done at the hospital. Yes indeed, his catheter had flipped which was the cause of the pain. Not sure why or what caused this, but is fairly common in PD patients. Solution - go in with a wire through the catheter and reposition it.

So tomorrow, Jim will have outpatient surgery to correct his catheter. No dialysis until maybe Sunday or Monday night. Since his potassium is good and he is still able to pee, he should be fine with no dialysis for a couple days.

In the meantime for the next few nights, Jim can sit in his chair and fall asleep watching TV, he can sleep without having a tube extending from his belly, he can sleep without the humming of  a machine, he can sleep without having an electric blanket to keep him warm, he can sleep without the beeping of alarms going off, he can get up and go to the bathroom without gathering up his 10 ft. of tubing, and he can sleep with the comfort of both dogs lying next to him . I think he will sleep well....

Our New Normal

Many years ago I remember hearing a saying for the first time “nothing is as constant as change”. Boy is this true when you begin dialysis. While Jim is stilling doing good on his dialysis, a lot of changes has occurred during the past 2 months. Here are a few ways in which our lives have changed…..

• We now sleep upstairs in the spare bedroom (a.k.a. Lindsay’s old room) because it is much more accommodating for the cylcer and many boxes of solution and supplies we have.
• Our dogs now sleep in Jason’s room. At first a little confusing to them, but they have adjusted well to this change (plus the treat they get each night at bedtime probably helps).
• It now takes us 2 days to take out the accumulation of trash we have Thursday mornings. This consist of trash bags of cycler tubes, fluid bags, supplies, etc. And oh yea…who can forget the weeks worth of broken down boxes the bags come in.
• At 6:00 p.m. every night we prepare the cyler for bedtime. We do this a couple hours prior to going to bed so that the bags of solution are heated up.
• At 9:00 p.m. on the dot we are ready for bed. After Jim “connects” we wait to listen for the 3 beeps telling us of his “low drain volume” and bypass the initial drain. This is the most painful time during the whole process. If there are not a lot of fluids in his belly to drain, he says it feels like a vacuum sucking out his insides. He pushes the bypass bottom and we sleep.
• At 6:00 a.m. everyday I wake Jim up to “disconnect”. He then goes downstairs to continue to sleep 2-3 more hours in our bedroom, which he describes as the best sleep he gets….”heaven”.
• Jim was not able to hunt at all this year. If anyone knows Jim, they know how he loves to hunt. Every weekend, every week as much as he can. Maybe next year.
• We cook a lot more. On Saturdays and Sundays we try new things and experiment with new recipes. Not sure why. My theory is that it’s the one thing we have total control over and that is a good feeling.
• We no longer travel. At least not Jim. Hopefully when the weather turns nice we will be able to go out to our lake. We will pack up his cycler and his many boxes and see how that goes. For now it is “home sweet home”.
• Jim has not been able to work since November. Most likely he will never be able to go back to his job as a pressman. As long as he has a tube and extra fluids in his belly and continues to get leg cramps, this makes it almost impossible for him to do his work.

Some things haven’t changed. We continue to laugh at each other and support each other. We go to sleep each night not knowing what the next day brings, but know that we will be there for each other. For now…. this is our “New Normal”.

Worst Day Yet

I have seen Jim cry only a couple times in his life. Yesterday was one of them. After attempting to go back to work on Tuesday, Wednesday he started with joint pain in his right knee. Thinking it was just from moving around more at work, we thought nothing of it. By Wednesday evening he was now feeling joint pain in his left ankle. Hum...that's weird. By Thursday morning he was in so much pain we finally realized it must be a gout attack.

While he has had attacks in only one leg at a time, when it is in both legs, it is almost impossible to move, let alone walk. Up comes the walker from the basement and we attempt to move around. We started on the gout medication which seems to help but it also comes with nausea. The real attempt came when trying to climb upstairs where his cycler is for dialysis. This is where it got painful and the tears came. Knowing we had no other option....we had to climb the stairs and God knows I'm not able to carry him, he fought his way upstairs while I stood behind him hoping this 240 lb. man wouldn't take us both out.

Friday I called his PD nurse and she was able to call a prescription in for some steroids hoping to relieve the inflamation in the joints. After taking a couple doses of Prednisone, he woke up this morning feeling much, much better. I know Jim is always feeling better when he asks..."What's for dinner tonight?"

Work...not working out so much

Tuesday, January 15th was Jim's first day back to work since November. In order to make it to his shift starting at 6:00 am on time, and to make sure he had his 8 hour of dialysis, he must be "hooked up" and dialyzing by 8:00 pm the night before for his 4:00 am wakeup call. This actually was no problem. His workday, however, did not go quite as well.

Making sure he had all his protective gear in place, (catheter securely taped and his large brace securely on) he was off to work. While this was a more easy day at work, Jim's body was not quite up for it yet. He was very sore from the bending and squatting and was feeling alot of pressure in his stomach (not a good thing). Getting a hernia is not good with a catheter in you belly.

After talking with his nurse and doctor, they decided he needs additional time to heal and put him on an additional 8 weeks of disability. Hopefully this will give him enough time to either heal more or better determine if he will ever be able to return to his work.

Don't be surprised if you someday see Jim greeting you at your local Wal-Mart. Hopefully he will be kind.

My thoughts... This has been a trying couple of months. Hopefully once he gets his transplant, he will not have these issues with soreness or having to worry about his catheter. We are still optimistic and praying for that to happen....we know it will.

That’s Not So Bad

Last night was Jim’s first night on the cycler. His training this week went well. He seemed to pick up everything on day one of training. Janet, his PD, nurse came and watched him set the machine up. The whole setup process takes about 10 minutes. She left with him ready to “hook up” when he was ready for bed. 9:00 pm was the anticipated bedtime, giving him the 8 hours needed to dialyze. That way I could help him at 5:00 am when I wake up.

Connecting went fine. At first Jim slept like a mummy on his back not moving. After about 30 minutes and feeling more comfortable he attempted to lie on his side and move around. Initially there was a small amount of “drain pain” which Janet told him he would most likely experience. That lasted about 5 minutes until the fill portion began. We both seemed to wake up every couple hours to check the status on the machine. Drain, fill, dwell, drain, fill, dwell, 4 times a night. Although Jim said he slept terrible, I recall hearing snores, which he probably will say he also heard (from me). At 5:00 am as scheduled, process was complete. Jim disconnected and went back to bed for a more sound sleep.

All in all in went well. It was nice to hear Jim say when all was done….”that’s not so bad”.

My thoughts. 12/12/12 was the day Jim first started dialysis. 1/3/13 was the day Jim first started on the cycler.  While both these days will forever be engrained in our memory, I am thankful that things have gone so well for him. This was something we always hoped would never happen, but it has and we are dealing with it. His next big step will be attempting to go back to work on 1/14/13. We still are hoping and praying for a transplant, but for now, this is our new normal.