Good Bye 2014

While 2014 started out quite rough, I must say it is ending on a very good note.

January 9^th was when Jason first experienced seizures at home. While at the emergency room I called home to check on Jim and he was having difficulty breathing. Called for an ambulance and he too was in the ER.

Thus began our trek of many difficult months of pneumonia, crippling gout, blood clot on lungs, peritonitis, rehabilitation, food poisoning, bursting cysts, uremia, hemo–dialysis, and then finally on September 4^th....Jim’s kidney transplant.

Since then Jim has been feeling amazing. He is a totally different person than he was this time last year. While 2014 was a rough year, it’s ending on a high note.

2015 will be amazing. We no longer will take for granted the simple things we liked to do before like traveling, going to the lake, fishing, hunting.... just normal things. Jason is feeling fine. Had additional tests and he will continue to be on his anti-seizure medicine for now.

Once again we thank everyone for all the support and prayers we had last year, for everyone who participated in the kidney walk which we raised over $3,000, for all the encouragement we needed when things looked so glum.  For all who came and celebrated Lindsay and Matt’s wedding. Something that was so special to see Jim walk Lindsay down the aisle.

Here’s to 2015.....

Free at Last!!!

For the past 2 years, Jim has had some kind of appendage sticking out of his chest, belly or back.

December or 2012 he had his PD catheter placed in his belly. When that was removed March of 2014 he was then given a hemo dialysis port in the left side of his chest. When blood drawers became difficult he was given a Hohn catheter in the right side of his chest. When he came home from the transplant he had a drain coming out of his back.

As of last Thursday, he is officially free of any devices dangling from his body. Both the dialysis catheter and the Hohn catheter were removed.

What exactly does this mean....it means that he can now sleep on his belly, shower without taping plastic bags on the ports, no more dressing changes and no more bulges coming from his shirts.

Just another exciting step in the miracle of getting Joe. What else can we say but....Free at Last!!

 

A Day to Remember....

October 25, 2014 has come and gone so quickly.  It seemed it would never get here and yet it was over in a blink of an eye.  It was a great day for a wedding.....a wedding we were never sure how would end up. Would Jim feel up to walking Lindsay down the aisle?  Would Jim feel good enough to spend the entire day visiting with people?  Would Jim be in the hospital?  Would Jim feel like crap because of dialysis?  But it was the best day ever!!!

Jim felt good. Good enough to walk Lindsay down the aisle to a room full of people with not a dry eye in the house. Jim felt good enough to give a speech about the adventures of Lindsay throughout the years.  Jim felt good enough to thank everyone in the room for the many thoughts and prayers through his journey. Jim felt good enough to give a toast to Al, his donor, and had him stand up to a standing ovation of the crowd in the room. Jim felt good enough for his father/daughter dance. Jim felt great.

Amazing!!!

That is the very best way to describe how Jim is doing.
It’s been almost 7 weeks since the transplant. The way Jim feels is truly incredible.

No more being tired, no more headaches from dialysis, no more overall yucky feeling.

Best of all no more gout!! Jim has eaten and enjoyed many things these past weeks which in the past would have caused him gout. No more....

He’s cooking again and has even started going to the gym. Part of his agreement with Al was that he must take care of “Joe”. Jim has also gone to Al’s nutrionist and has been giving him advice on eating habits. So far Jim is abiding by all the rules but he sure looks forward to his “cheat meals” once a week.

We are beyond thankful for this precious gift Al has given us. It is truly remarkable. Al, too, is doing great....and no regrets.

It will be amazing and so joyful to actually see Jim walk Lindsay down the aisle this weekend. Who knows....he may even dance up a storm!!!

Jim Update

It has been 25 days since Jim's transplant. Joe continues to work great!!

Jim's been quite busy the last 3 weeks. He has:

* got his drain removed

* got his stent removed....Ouch!!!

* got most of his staples removed

* been hospitalized for severe pain from the cysts on his old kidneys rupturing

* had a plasmapheresis treatment done due to high titer levels. Should be below 64, his had gone up to 256. We were told prior to transplant he may need some additional treatments post-transplant. It was down to 16 when he left
* had an IVIG treatment which helps with the antibiodies and helps keep the titer levels down.

This is how we spent most of our time in the hospital over the weekend just sitting around waiting....

Check up today with the transplant team was good. Other than his blood pressure being higher than normal, everything else checked out great. Creatinine level is down to 1.2 which is awesome!!!.

Keep up the good work....

 

Jim and "Joe" heading home

Tuesday was a good day to go home!!  Jim was up every couple of hours during the night. Joe was keeping him busy peeing. Drs. came in and said everything was still looking good. Creatinine was down to 2.0, titers were still 1-16 (if these go higher than 64 he may have to do plasmapheresis again) but so far everything looks great. Still some pain in incision area, a small BM too helped with his pain, but otherwise feeling pretty good. Coming home with a drain in the incision area.  

Got home and started preparing his pills. Here is what a weeks work of meds look like.

Today a home health nurse will come out and do blood draws. He will have blood draws 3 times a week for the first 2 weeks. Then blood draws twice weekly for the next 2 weeks, then once a week for the next 3 months, every other week for the next 9 months then at 1 year it will be monthly. This is how they keep a close watch on levels for possible rejection. Small price to pay to be dialysis free.

Monday

Jim had a great night. Seems to have slept better than he has in years. Actually had to wake him up at 7:00 to start his busy day.

The plan today is to start walking. He will have occupational and physical therapy. They will remove his catheter and wean him off his push pump pain meds. He is feeling really good. Creatinine levels are going down. Output is still good.

Happy birthday to Lindsay. What an awesome birthday present we both got.

Sunday....3 days post op

It's Sunday and everything is going well. Jim had a pretty good night the last 2 nights. He's been sitting up in the chair for long periods of time. Not much walking yet but that should come today. His pain is in control but still hurts terribly when moving. His belly is gurgling and a good BM should take care of that. That is on our agenda today too. He should be moving down the hall to a regular room also.

Here are some of the great gifts he has been getting.

Lucky Al, a.k.a. Chuck Norris, got to go home on Saturday. How incredible is that!!!
We promise to take great care of "Joe".

Finally Together..

This morning Jim was running a temperature. It could be because of the medicine but they took blood cultures of his 2 ports in his chest to rule out infection. His pee output has declined a bit, but again that's normal. Had a bad night when he started to get fever, then got anxious and needed his xanax. Didn't sleep too good. He's now getting oral pain meds along with his 10 minute push pump.

Feeling better by noon time. Fever gone. Got up and sat in the chair and washed off.  His buddy Al came to see him. Both are looking good.

Resting

Jiim is resting comfortably and will be in the ICU tonight. Currently he is peeing about a cup every hour which is fantastic. They are giving him lots of fluids to keep the kidney active. They will check it every hour during the night. Morning plan is to sit him in a chair and have a liquid diet for lunch and get him to a regular room. His pain button is currently his best friend. He's been using it every ten minutes.

Al is feeling better. He was quite sleepy  when he was in recovery and still up in his room. His morning plan is to get up and walk. I know you can do it "Chuck Norris"!!!

No pictures of Jim yet, but here's one of Al looking like himself with his ball cap.

Here's the happiness we were having in Jim's room.

Feeling relief, happiness and utter joy tonight. Sleep good....

We Did it....

That's what I told Jim this morning when I seen him.  Took him early to pre-op. Feeling anxious and excited. Al in his usual fashion was cracking up the nurses. Al went to OR at 7:20. Took Jim up at 8:20.

10:20...Al's kidney out.
11:00....Jim's vitals are good. Kidney in room ready to put in.
11:45....Closing up Al. Will be going to recovery soon.
12:00.....Kidney in Jim...one more connection. Good blood flow.
1:00.....Kidney in and making pee!!!  Used a cadaver vein for one connection. Everything went well.
Thanks to everyone for your prayers. They worked. God is good.

Wednesday.....1 more day.

Wow....hard to believe it's finally almost here. Busy day today for Jim. Port put in early this morning, plasmapheresis starting at 1:00, visit with Mom, Norm, Diane and Chrissy, dialysis until 8:00. Chouch and Japs are here from Florida. Late night visit until 10:00 catching up.

Hoping we all get some rest tonight. Not thinking that's going to happen. Jim's being taken around 7:00 so we will be there early. Surgery at 8.

Tuesday....2 More Days

Today was a pretty quiet day.  Jim had the plasmapheresis done today at 3 o'clock. He wasn't happy with one of the nurses doing this today. In fact, he was quite angry. Hoping he gets another nurse tomorrow.
Tomorrow he is having a port put in his chest for blood draws. They are having problems sticking him for blood so this will make it easier for blood and IV meds. He had this once before when hospitalized.

He will also have another plasmapheresis treatment and then.....his last dialysis!!!  Glad it's a busy day, will have lots to do before the big day. 

The halls on this floor are filled with inspriring quotes.  This one I found today reminded me of Al Kreke.

Jim's still feeling good. He is quite anxious, excited and a tad bit worried. But mostly he's tired of me beating him at gin rummy!!  Surgery is scheduled for 8 a.m. on Thursday.  Almost there....

Monday......3 days left

Today was a good day. Fr. Flach came and gave Jim a blessing and anointing of the sick. Fr. Flach has been a dear friend of the family for many years. It was nice to reminisce about the "old days". 

Lindsay was off school today and spent the day too with her dad. The following photos are courtesy of her.

 Hopefully next Labor Day we will be out at our lake in Coulterville like we have done for the past 30 years. We miss it....but soon we will be back out there.

Happy Labor Day.

Sunday....4 more days

Sunday was a very quiet day. Nothing really to do. We spent most of our time eating then waiting until we ate again. Sorry Al....Jim DID get that hot dog that he wanted so bad!!

It's hard to belive it's almost here....4 days and counting.

Love this floor. It's so inspirational.

Thanks for being on this journey with us.

Saturday.....5 more days

Saturday was another busy day. The 2 hour plasmapheresis turned into a 5 hour ordeal. The machine used for this process was not cooperating with Sharon the nurse. Each time they would have to wait 15 minutes for the machine to restart. With this treatment he felt one of the side affects, tingling around his lips. This was from the loss of calcium so he was given some tums to chew on. The process too makes him very cold so he has heated blankets on top of him during the process.

It was a little more involved with this treatment as they gave him type A blood (which is AL's blood type). Earlier in the day the doctor said this process was working well and he might now have to have as any treatments as initially thought.

Finally Jim was back in his room about 7:00 pm. He was feeling belly pain like he does after dialysis. Hoping he sleeps better tonight. Tomorrow (Sunday) nothing going on. Will spend it trying to keep Jim away from the hot dog he saw in the cafeteria he wants so bad. Gotta love his appetite!!!

So far so good...

Today Jim was admitted to Barnes Hospital for some pre-op work prior to the transplant. He is having 5 days of plasmapheresis done. This is a processing of removing some of the bad antibiodies in his blood so it will help with rejection of his new kidney. The "titer" levels need to be between 1 and 8 and with each of these treatments it will bring it down to this. This is a 2 hour process similar to dialysis.

After that he had his 3 and 1/2 hours of dialysis. He was brought back to his room around 7:00 pm tonight. He has stomach pain and headaches now with dialysis. Nothing his oxycodone won't heal.

He was also given IV medicine to put back in some of the good antibiotics that were taken out during the plasmapheresis.

Tomorrow he will have the plasmapheresis again. Nothing happening on Sunday. 

Tomorrow....5 more days.....2 more dialysis.  Almost there :)

Into Single Digits

We are now officially into single digits......9 more days. It sounds so nice to say it will happen “next week”.

Jim has been feeling good on non-dialysis days. Dialysis days have been getting really hard on him. He gets terrible headaches and stomach pain after dialysis now. Our countdown to dialysis treatments is now 4. Can’t come soon enough.

Jim was in the hospital last Thursday for an infusion treatment. He will probably go into the hospital this Friday. He has to have 5 rounds of plasmapheresis treatments. This is where they remove plasma from his blood. Since Al and him are not the same blood type, this will help in treating his blood and getting it ready for the new kidney. It is similar to dialysis so he should be ok with it. Tomorrow will be his last dialysis at Davita. While the people there are very nice and he has grown to really depend on them, we won’t miss it. So depressing on the many lives touched by dialysis....some no hope. They are all so happy for Jim!!!

Al has been behaving himself. He was cleared by the surgeon yesterday. His blood pressure is good and his broken foot (.....don’t ask) is healing fine. We had dinner with him and Sandi on Sandi and hopefully the next time we see him he will be prepping for surgery.

I will be posting Jim’s progress next week so stay tuned..... and thanks once again for all your good thoughts and many prayers.

29 More Days!!!

Things are starting to be real.

Tomorrow (8/7) Jim is admitted to Barnes for the day to start a Rituximab infusion. His blood will be desensitized which helps with organ rejection. Then on Friday he starts his anti-rejection meds.

10 days later is when we meet with the surgeon (Dr. Wellen) and go for Preoperative Planning, an EKG and a chest x-ray. Blood work for the final cross match will also be drawn at this appointment.

Wow...it seems so real. I’m certain it will be here in no time.

Jim has been feeling pretty good. Although after each dialysis, it seems to totally wipe him out more and more, has headaches and neck pain. Feels much better in the morning, but the yo-yo affect is starting to take a toll on him.

This is one of several signs we have throughout the house. Al made this for Jim, although I get the sheer pleasure of ripping of each page daily.

Now only 29 days....and 13 more dialysis.

Keep praying!!!