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.