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!!!

September 4....

....sounds like a good day for a transplant!!!!


Finally...confirmation THAT will be the day. It hasn’t been an easy road even these last few months. The doctors didn’t like some numbers on his last stress test so Jim had to go see a cardiologist a couple weeks ago. He confirmed there was no blockage in his heart and signed off for the transplant.

Not sure Jim was prepared to take any more tests so the relief of this was overwhelming.

Waiting for the papers to come in the mail to see what his schedule will be for the next 54 days. Only 22 more dialysis.....we can hardly wait.

Keep prayers and good thoughts coming.

They Just Aren't Making this Easy!!!

Jim had his testing done last Thursday (6/19). While he was supposed to do a chemical stress test, he ended up walking on a treadmill due to the fact they could not get a good vein for the IV solution for the chemical test. It was tough on him but he walked the treadmill (uphill) for 8 minutes.


Because one of the numbers was low, they want him to have a cardiologist just sign off that his heart is ok to undergo the surgery. Just can’t catch a break. While we know this is routine for such a major surgery, we feel quite certain Jim’s heart is just fine and just sets us back another week or so. His cardiologist appointment is next Tuesday (7/1).

Dialysis is really starting to take a toll on him. While he has good days and bad days, it seems it takes him longer to feel ok after each dialysis. Gout continues to be a problem in his knees and feet. It seems like a constant ending circle. He walks to build up his strength, but then that seems to activate the gout in his legs, he takes medicine for the gout and it upsets his stomach, he takes medicine for his upset stomach that gives him diarrhea, he takes medicine for diarrhea and it makes him nauseated, he takes medicine for nausea and that upsets his stomach, he takes pain meds for the pain in his knees and that constipates him. It never seems to end.....

Hopefully “Joe”, his new kidney, will help make all of this go away.

Just can't catch a break.....

Jim’s detour in his journey for a new kidney had yet another detour last week. After eating dinner last Saturday night (no more eating at Sybergs), Jim started experience food poisoning like symptoms and severe pain in his belly. About 10:30 that night we went to the ER at Memorial. They agreed it looked to be something he may have eaten, but wanted keep him to make sure he wasn’t dehydrated from the nausea. Assured us it was clearly for observation and would most likely go home the next day.


He started feeling better Sunday but then found out his INR (blood levels) was too low which meant his blood was too thick and could start clotting. He has been on Coumadin for the past several months ever since they found a blood clot in his lung in March. Neither his primary doctor nor his nephrologist had been monitoring it. He was started on a heparin drip immediately. After 2 days in the hospital, the level was pretty close to where it should be and he could go home. His nephrologist will continue to monitor it at dialysis while he is there.

While this is just another detour in his journey, it was probably for the best we postponed his 6-minute walk until the next week. He started with gout in his knee as soon as he came home from the hospital. This poor guy just can’t catch a break....

He has been feeling pretty good being home and we are once again gearing up for the walk this Thursday. I’m confident he will do well. After all.....what else could happen????

What a Great Day for a Walk

Saturday was the annual National Kidney Foundation walk at SLU campus. Last year Jim, Joyce and I walked in the cold and rain. This year was 75 degrees, bright sunshine and 35 of our best friends and family.

 

We were also lucky enough to have raised over $3,500. Jim was quite overwhelmed by the amount of generousity from everyone.

Thanks to all who participated and donated!!

We love you!

Getting His Head in the Game

Last Wednesday after dialysis, Jim had an episode that has proven to be unexplainable. His speech was garbly and all symptoms pointed to a stroke. I immediately took him to Barnes ER and after a grueling 21 hours there, MRI's taken, CT scans taken, blood work taken, there seems to be no explanation. They say it may have been a "mini stroke" that would not appear on the MRI, or perhaps it was delirium. He was hospitalized for 2 days with no further test. His speech has improved and his cognitive senses seem ok now.

While this was terribly disturbing and scary, I think it has taught Jim he has to have his head in the game. He worries a lot and tends to keep things inside. Perhaps it was an overload of worrying and depression from all that he has gone through these past several months. Needless to say he has been very apprehensive about dialysis since this all seemed to occur right afterwards, but the doctor tried to assure him it was merely a coincidence.  Having just dropped him off, I took am anxious to see how he is reacting.....ok I hope.

Once again Jim seems to be on track. He had the drain bag removed last Wednesday prior to this episode and things we thought were looking up. His appetite has improved the last few days. He is eating (and enjoying) it much better. His nutrition has been so poor with all he has gone through. Once weighing as much as 260 lbs., he is now down to 211.

After my talk with him and the doctors telling him so much of his recovery is psychological, I think his head is finally starting to get into the game.and he is starting to realize he must be in a better frame of mind. He has a lot to be thankful for whether he realizes it or not. I remind him that everyone has problems and some are a lot bigger than his. Let's hope things improve. Like I said before...enough is enough.