Everything hurts but my nose...

The last 3 weeks have really been tough on Jim. While he was lucky enough to go about 6 weeks with no gout attack, one Sunday morning 3 weeks ago it hit him with the vengeance. The night before we had gone out to dinner with friends. For the first time I actually thought to myself how normal that was. It felt good.

It was, however, short lived. Jim woke up with gout in both his feet and knees. Walking was impossible so the wheel chair came in handy. We started on Predisone and his usual regimine. This seemed different though. He never really had it in his feet and it was more painful than normal. After a week there seemed little improvement. We happened to have an appointment with his rheumatologist. She increased his prednisone and sent him home. Things were starting to look up until he took a fall.

Losing his balance and the pain still in his feet prohibited him from making his way up a step and he fell backwards on his right side. My mom and I were not able to get him up so we called 911. Three of them were able to get him on his feet but he complained of pain in his right elbow and we wanted to make sure his belly (catheter) were ok. At 11:00 am off to the ER we went. After x-rays nothing was broken or fractured. His blood sugar was very high (581) which concerned them. We knew his blood sugar was high from his last visit to the clinic. It seems the high doses of Prednisone he was taking played havoc with his blood sugar. While they wanted to keep him overnight, we insisted we would prefer to follow up with his renal team and have them deal with it. At 6:45 pm we were able to come home.

I asked Jim the next day what hurt. In his usual humor he said everything but his nose hurt. Sad...but funny.

Yesterday his PD nurse was able to get us into an endocrinologist about his high blood sugar. While they don't think it is the start of diabetes, they are pretty sure it is Prednisone induced. He started on insulin 4 times a day and we have to take his blood sugar 4 times a day as well. While it's slowly coming down, we had to start up the Prednisone again today because now the gout has gone from his foot to his knee.

I keep telling Jim his transplant is going to be a piece of cake after all this. Once he gets his new kidney, the gout problems hopefully will go away never to return. We can only hope....

For the good news....we find out a week from today the date for the transplant. Can't come soon enough for us.

Almost there...

Got great news this week. Al, Jim's donor, completed his last procedure and got confirmation everything is a go. He said the doctor informed him that the transplant will take place early to mid January. Jim's transplant team will be getting in touch with him to start his preparation which includes taking anti-rejection drugs.

In the big scheme of things, mid January is really not that far off. To be exact it is 60 days, 8 weeks, 2,460 hours... you get the point, we're not counting or anything. We will enjoy the holidays (as best we can this year) and anticipate a great new year.

Jim's recent visit to the clinic went good. His parathyroid hormone was a little high, but all other blood work was good. Shoulder pain has improved and for the first time in months he has been "gout free" this past month.

Now our goal is to keep him healthy for the next 60 days in preparation of the beautiful, new healthy kidney he will be getting from Al.

It is so nice to see the light at the end of the tunnel on Jim's Journey. It's been a hard past year since Jim has been on dialysis. While we know it helps him to survive....it does take a toll on him. It will be nice to see him get back to the things he loves to do and to feel good. Something he hasn't had in a very long time.

Good Things Come to Those Who Wait

Still waiting…..Al has some procedures to do and then hopefully Jim’s transplant will be scheduled. We have learned through all of this to “take it one day at a time”.

The infection from the ruptured cysts has cleared up after 2 weeks of antibiotics. A bad head cold is his recent obstacle.  Of course Jim never just gets a cold…it’s always a “bad” cold. Dr. Karen prescribed plenty of orange juice and rest. Lots of sneezing and coughing accompanied the cold. One sneeze in particular left its mark. Jim sneezed so hard he felt something happen under his rib cage. This also caused labored breathing throughout the next couple of days. Hoping this was not pneumonia, Jim went to the doctor yesterday (Monday) and found out he has a torn cartilage under his rib cage from the sneeze. The doctor gave him some medicated patches to put on the spot with the advice that it will just take time to heal itself.

On the bright side….Jim’s recent visit to the kidney doctor was good. She continues to change his blood pressure medications. It’s been high the last few months. He was also given an iron shot. Hopefully he will be in tip top shape and ready for that transplant.

Thank you for all your prayers and good thoughts. Oh….and about that sneeze….gesundheit!!!

Happy Anniversay

Today Jim and I celebrate 34 years of marriage. Our hope was to spend the day with family and friends at the Weingarten in Belleville. Jim has had a rough week. Last Saturday he "just didn't feel right". Had stomach pain and nausea. It didn't take us long to figure out that a cyst on his kidney had ruptured. This is the first time though it was accompanied with blood in his urine. Having called the PD nurse, she didn't seem concern with the blood but had him come in for a urine test. Lo and behold yes he did have an infection and antibiotics were started immediately. Having been on antibiotics for the past 3 days, his pain is still there. Hoping he would wake up this morning feeling better instead he wakes up with another surprise....GOUT in is foot. His patience is dwindling along with his pain tolerance. A new kidney can't some soon enough!!!

On that note...Al went in Monday to wear a heart monitor for 8 hours. Normal procedure they tell him before surgery. Jim's transplant coordinator says as soon as they get the go ahead from the donor transplant team, things will be moving. But like I said....just not fast enough. Al (along with Jason) left this morning for a hunting trip to Canada. Probably nothing will happen this week which is ok. Jim needs to get well and be in tip top shape. We'll work on getting this infection cleared up as well as the gout. Our patience is wearing thin....Oh....and Happy Anniversary.....we WILL get through this. XOXO

Good News!!!

Finally....after months of testing, Al was approved today to be a donor for Jim!!! Words cannot express how excited we are. Jim will have some testing to go through and hopefully he will be able to have the transplant by the end of next month. 

Right now Jim is having some issues with his blood pressure. Ever since he was dehydrated, it's been tough to get back on track. The doctor is trying to wean him off of some of his blood pressure medicines. It fluctuates from really low to really high. That on top of still getting gout has made for a bad last few months.

Hopefully his journey will soon reach the end. I can't help but think my brother is up there working overtime to make sure this happens. Thanks Lar...xoxo

Dehydration 101

For the past 3 or 4 days Jim hasn't been feeling well. It started Saturday while at the lake. He was on the riding mower cutting grass and the next thing I know he is sitting in his truck with the air conditioning running. He had gotten really light headed and sweaty. Sitting in the cool helped and after a few minutes he was better.

It happened again on Sunday and Monday and again today, He called his dialysis nurse at the clinic and she told him to check his blood pressure. It was very low....75/60. She wanted to see him right away but that he shouldn't drive. He call Bill G. and asked him to take him to the clinic. It turns out by the time he had gotten there he was experiencing shortness of breath and was hyperventilating.. They determined that he was dehydrated. After taking his weight, he had dropped 7 lbs (fluid) over the last few days. Apparently his cycler has been taking too much fluid off together with the increase in his water pill was a sure cause for dehydration.

After giving him some IV fluids, his blood pressure was steadily going up. His fluids tonight on the cycler will be 1.5% not the 4.5% dextrose he normally uses. No more blood pressure meds until his BP is back to normal.  No more dark colored soda (too much phosphorus),  No more Gatorade. No more orange juice. 

This is what we learned today in Dehydration 101.

A True Friend

Testing for Jim's potential donor is still ongoing. When asked how things are progressing, I always respond, this sure isn't a fast process.

Last week I finally got a chance to talk to Jim's potential donor. His first words were, "Karen, they said this is all going really well. It's really going to happen". Such enthusiasm in his voice. It made me cry to actually hear these words. This has been the first positive statement I have heard in almost 2 years. It really seems that this will happen.

My sister-in-law Chrissy asked Jim's potential donor why he would consider being a donor. His quick response was...."the real question is, why wouldn't I".  Now that's a true friend. Thank you Al!!!

Back on Track...Once Again

After Jim's post-op visit on Tuesday, He started back on dialysis. While they decreased the number of bags he does nightly from 3 to 2, they will gradually increase over the next few week. So far it seems to be going good.

His blood work showed that his phosphate was high and he was given medication for that. Otherwise, he once again got a goo report card.

His next doctor appointment is with a rheumatologist on Thursday. Hopefully she will be able to give us some good advice on treating his gout. We are experimenting with not eating hamburger for the next couple of weeks to see if that would help with gout. He also has cut out drinking soda during the week and cut out all high fructose corn syrup which I read also contributes to gout attacks.

So in the meantime, we are back on track....hoping that sometime soon we'll get the good news that a transplant is just around the corner.

Shhhhh....

I don't want to say this too loud. I'm afraid I will jinx it if I post about it too much. But here goes....
A friend of ours, Al, continues to be tested as a possible kidney donor for Jim. So far things are looking pretty good. Jim talked to his tranplant coordinator last week and said there was still some testing to do, but it could possibly happen in another 3-4 months.

After witnessing the pain Jim had to endure today, a transplant would truly be a gift. While dialysis certainly helps, it does take quite a toll on your body. I'm not sure how much more Jim can endure. It seems each setback makes it harder to recover.

So in the meantime, keep your fingers crossed that in another few months, our next trip to the hospital will be for a transplant. Our prayers will hopefully be answered.

The Eyes Say it All

Today Jim had his catheter "tacked" down again. A different doctor at Mercy Hospital did the procedure this time around. He said that the last doctor used a type of suture that was "absorbable'. This time he used a different type. While the procedure is short, Jim's recovery time seems to take longer and longer each time. This is his 4th surgery in the last 15 months. Alot for a healthy body to endure. Even harder when you have little kidney function, bloated with excess fluids, a pain in your shoulder from the dialysis, gout in your left foot and a sore right toe from being clipped too close (sorry honey).

Hopefully he will be up and about in a couple of days. His pain meds are close by and his pillow covers his belly to ease the pain when he moves. He sees his nephrologist on Thursday to see when he can resume dialysis. In the meantime, he must watch his fluid intake as well as his potassium.

I vividly remember that far away look in his grandma's eyes and her big bloated belly while visiting her in the hospital.
I vividly remember that far away look in his mom's eyes and her big bloated belly while visiting her in the hospital.
I saw that same far away look today in Jim's eyes and his big bloated belly while seeing him come out of recovery.
The eyes say it all....I hope I never have to see that look in my kids' eyes.

Third Time is a Charm

Jim is scheduled to have his catheter repaired next Friday, July 5^th. Apparently the last tacking done in March some how came loose. The good news is that the entire catheter does not have to be replaced. The bad news, is that he usually has a lot of post-op pain and won’t be able to do dialysis for a week.

Let's hope this third time is a charm.

I think I will ask them to use “super glue” this time!!

Not Again!!

For the past 3 nights Jim's drains have not gone well. They have been painful. That is usually a sign something is wrong with his catheter. We went this morning to get an x-ray and lo and behold, yes, his catheter has flipped again. Not sure why, especially since it was "tacked" down the last time and he does not do anything at all strenuous. We're told "it's just one of those things". 

They decided to use a doctor from Belleville (Craig Smith) who has a good track record with pd caths. We hopefully will find out tomorrow how soon we can get this done and  most likely will be removing his current cath and replacing with an all new one. This means no dialysis for a while and his nephrologist will determine if he can tolerate this.  If not, most likely he will have to do hemo dialysis for a while. Let's hope for a speedy surgery, recovery and time to get back on track.

Oh yes.... all of this plus gout in both knees. We are heading to the dr. in the morning to hopefully get them drained. Wish us luck.

On The Road Again

When Jim started his dialysis, one of the things we wondered about was how or if we would be able to travel and go to our lake with his cycler. This past weekend was our 1^st attempt and it was a success!!

We loaded the cycler into a suitcase, toted 3 boxes of dialyzing solution and a bag full of clamps, hoses, gauzes, tapes, caps and the pee bottle (yes, let’s not forget the pee bottle) into the back of the truck. We had a wonderful couple days at the lake and had no problems whatsoever.

This month Jim’s clinic visit continued on the good side. He was, however, retaining some fluids causing his blood pressure to go up. His cycler time was increased to 8.5 hours a night. In order to pull more fluids out, they substituted one of his 2.5% bags to a 4.25% bag for one night. Jim did notice the difference the next morning and said “it was the best he felt in a long time.” He was even able to bend over and ties his shoes, something he had not been able to do carrying that extra fluid.

All in all he is still feeling good. While still not able to return to work, he is finding things to occupy his time at home. We continue to pray that some of the people being tested as a possible donor will work out. But in the meantime, we continue with our new normal and are extremely happy that we will be able to travel to our lake. Someday….maybe we will venture out even further.

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.