There's no place like home

After 2 weeks at rehab, Jim finally gets to go home tomorrow.

He has reached all his goals in both occupational and physical therapy. His walking with the walker is going great and he continues to improve his distance each day. He will continue therapy at home when a home health care therapist will come twice a week.

After being away from home for an entire month, he is beyond words about going home. I'm taking 1 more week of FML next week to keep him on track then hoping to get back to work and some normalcy.

We will contact the transplant team next week and tell them of his improvement with hopes of getting back on track. I have always been a believer that "things happen for a reason". Not quite sure why Jim wasn't suppose to have transplant next week, but that's totally out of our hands. I know this extra time will in the end of it all be good for him.

Jason has appt. with his neurosurgeon on Thursday we hope with a decision for his treatment. Hoping I won't have the both of them in the hospital at the same time as we did in January, but if so...we will get through it.

Jim Update

Finally after 2 weeks in the hospital Jim was released yesterday.  However, homebound we're not.  Mobility in his right knee keeps him from coming home. So our new home this week is the Barnes Jewish extended care facility in Clayton for rehab on his knee. More intensive therapy hopefully will get him moving and capable of walking unassisted again. It's been since November 23 that he was capable of doing that.  Too long. Contacted transplant team to let them know and transplant will most likely be pushed back another week.  That's ok, by then he should be up and walking and in much better shape for surgery.

Jason continues running tests but so far no more seizures have occurred. Thanks to family and his friends, the not driving thing hasn't been much of an issue. 

Again thanks everyone for your prayers and support.

Svoboda Family Update

Today the doctor drained Jim's knee. He had immediate relief. He was able to bend his knee and get up and walk with assistance. His pneumonia is better. Finally on the right track. Tomorrow he can once again start the physical therapy so badly needed to start walking unassisted again.

For now the transplant has been pushed back 1 week. He has to be completely off antibiotics before they can proceed with his preparation. So for now we are shooting for February 20th. Keep thinking good thoughts.

On Jason....today we say Dr. Joshua Dowling at Barnes. He basically said the same thing that Dr. Jaffri at Memorial has said. He has a low grade tumor on the right front lobe of his brain. Dr. Dowling wants to do another MRI on February 3rd to see if there is any change and to get a better idea for surgery. He currently is on anti-seizure meds.

For 6 months he cannot drive, take baths, ride bikes or do anything that may put him in danger. He is feeling fine, worried about Jim but is strong. Keep him in your prayers as well.

My thoughts.....God never gives us more than we can handle. However, I'm just about at my limits. Thanks everyone for your prayers and support. As a family we will get through this....

So Far 2014 Sucks......

33 more days until scheduled transplant.
33 more days to get Jim up and walking
33 more days to get Jim's pneumonia cleared up.
33 more days to get Jim's cysts to stop bursting.
33 more days to get his blood sugar under control.

Seems a lot to do but we WILL get it done. Jim is currently hospitalized with pneumonia in his upper left quadrant. Getting breathing treatments and antibiotics. Tummy pain from bursting cysts. Physical therapy to get him up steady on his feet and walking without a walker.

His first appointment for transplant preparation is next Friday. Doing a stress test, EKG and chest x-ray. Hoping we're still on schedule to get this done.

Only time will tell.

To top off 2014, Jason is also in the hospital after having 2 seizures at home and 1 in the ER. Scheduled for a spinal tap tomorrow.

Oh....and yes we had 13" of snow. Hoping 2014 improves quickly.

February 13th here we come...

We just received confirmation that transplant has been set for Thursday, February 13th!!!

39 days and counting.

Will keep you posted as developments occur.

All we know now is that Jim has to be on anti-rejection medication for 4 weeks prior to surgery.

Thanks to all for love, prayers and support.

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.