February 25, 2014

We knew something was brewing over the last couple of days. Sure enough, this evening Dave was once again admitted back into the hospital. He again woke up today with vomiting and belly pain but added a fever today. He blacked out on Sunday in the apartment, scaring me to death as I heard a large crash from another room. He only remembers getting up from the sofa and then me waking him and getting him off the floor. We stayed in touch with the team on Monday (yesterday) as his Blood Pressure was unusually low but he ate and drank normally all day and had no dizziness. The plan was
to make our scheduled clinic appt on Weds. Plans changed late today when he started running a temperature.
I don’t yet know what any of this means but will post an update when we have more information. Don’t have any idea if this is a result of
reducing the anti-rejection drugs to suppress the BK Virus or even related to that issue in any way.

As always, thanks for caring,
Linda and David

Dlmyersinc@gmail.com. 904-327-1492
Linda212@tds.net. 904-610-7352

February 20, 2014

Wednesday was clinic day. We left a bit depressed with the news we received so Dave and I took a 1 1/2 hr drive to Winston Salem and wandered around the streets and shoppes of Old Salem. The buildings date back to the 1700’s.

I will be extending the lease on the apartment thru July. For those keeping track, it will be 1 year on May 29.
The BK Virus diagnosis mentioned earlier in the week is a very big deal. To avoid renal damage, it must be suppressed. The one and only way to do so is with the reduction of Dave’s anti-rejection drugs. It will be a very fine line to find the balance between the level which will suppress the virus without causing Dave’s body to reject any of his new organs. Of particular concern is the small bowel since he has already had 2 rejection episodes while on much higher doses of
meds. This process could take weeks or even months. We literally will
take 1 day at a time. The surgery to reverse his Ostomy has been put off indefinitely. Dave’s instructions are pretty simple. Any physical
changes in his body, no matter how insignificant it may seem to him –
call! Any increase in the amounts of his ostomy output – call! These
could be early signs of rejection and immediate biopsies will be required.

Note of Interest: 80% of population has the BK Virus in their body. It became activated in Dave because he is immunosuppressed. There was nothing he could have done to avoid and nothing he did to cause or contract. The surprise element is it is most often activated in kidney transplant patients, one of the few organs Dave has had no problems with, and we intend to keep that way.

As always, thanks for caring,

Linda and Dave

Dlmyersinc@gmail.com 904-327-1492
Linda212@tds.net 904-610-7352

 

 

 

 

February 17, 2014

 

Dave was released late yesterday from Duke. A couple of days of IV hydration and he feels much better.

We received a phone call a short while ago from Dave’s transplant team. They discovered the reason for blood in his urine. The results of last weeks urinalysis came back with a surprise diagnosis, the BK Virus. This is a virus most often found in kidney transplant patients, but can show up in multi-visceral transplant patients as well. The overall impact of this on David will be explained in more detail to us at his clinic appointment on Wednesday. Apparently, this is dangerous to the renal system if not diagnosed and treated properly. The fact that Dave is immunosuppressed is an issue. Dave’s anti-rejection meds must be reduced because of the virus. Monitoring signs of organ rejection will need to be followed even closer now because of the reduction.

As always, thanks for caring,

Linda and Dave

Dlmyersinc@gmail.com 904-327-1492
Linda212@tds.net 904-610-7352

 

 

February 15, 2014

Dave is not feeling well once again.  He most likely picked up a bug somewhere. He has no appetite and vomiting caused him to become seriously dehydrated again. He was admitted to Duke last night.

Dave feels much better today but the transplant team will run him thru a series of tests to make sure there are no surprises lurking.  At this time, his doctors don’t think this is connected to the bladder infection in any way other than his body struggles with fighting off the smallest of infections.

We will keep everyone updated.

February 13, 2014

Duke campus when snow began

Duke campus when snow began

 

We arrived back in NC on Monday evening, just in time for the beginning of the storms blanketing the south. Dave asked that I turn the car around. It was 72 when we left Florida. It was 34 when we arrived at our apartment. More on our snow adventure later.
We had a great 8 day visit home in Florida, not without some drama and Dave’s first visit back to the Mayo Clinic ER since the night he was medevac’d out back on May 29.
We arrived in Florida on Sunday February 3. Mackenzie and Skye picked Dave up from my house. It was all Kenzie could do to stay for a 15 minute visit. She had ahold of her daddy by the hand, practically dragging him out the door. It was time to go home she said. She made him sit in the back seat next next to her. She was one very happy little girl.

Monday brought another exciting milestone for Dave. He was able to start driving again. It had been almost a year. Things were beginning to feel pretty normal.
We did have some fun family time along the way. Attached is a picture of Dave and Steve at the drag raceway where Steve frequently races. Yes, Dave did take a few turns as a passenger in the car. Something he has been talking about doing for months. Steve was happy to oblige I too hopped in the passenger seat for a few runs!

Dave and Steve

Dave and Steve

Dave and Steve

Dave and Steve

Steve, Dave, Linda & Riley at track

Steve, Dave, Linda & Riley at track

So by now you all are wondering about the ER visit I suppose. Out of
the blue Dave started noticing blood in his urine periodically. Started on Thursday. He did not mention it to either Skye or me until Saturday when he started vomiting. Neither did he pick up the phone and report this unusual happening to the transplant team. We did call the team Saturday. They wanted him evaluated immediately before we drove back, assuming it was kidney stone, but he wasn’t in pain. We had an 8 hour drive back to NC and his team did not want to risk that before ruling out any critical problems, which they were able to do. Skye and Dave spent about 6 hours at Mayo, while I enjoyed a day with Kenzie and Riley. The vomiting stopped. No explanation for that. No stones showed up, no leaks, or tears, but the bleeding continues. Not a significant amount to cause drop in BP but something definitely wrong. He feels fine! He was cleared for our drive back to Duke and his team who were very anxiously awaiting his return. They may never let us go home again. I think him having an issue was harder on them than us!

After 2 long days of clinic visits, tests and specialists at this point (and it turns out what was apparently the teams biggest fear unbeknownst to us until after the fact because he had so many of the symptoms) he does not have bladder cancer. It turns out his anti-rejection meds, if any cancerous cells are present, cause fast growth. We did not know that. Based on the phone calls and how we were being run around in the midst of an oncoming major storm when every thing was being shut down around us I was not without my suspicions. It would appear he does have a bladder infection. We do not know yet if it is virile or bacterial. We don’t have all cultures back yet. It does reinforce the fact that Dave is and will always be immunosuppressed. His body cannot fight off infections. He did let this go too long before telling anyone of symptoms. He won’t do that again. A minor infection could very quickly overtake his whole body. I think he understands that, now. We are back on weekly clinic visits with the next one scheduled for next Wednesday.

Dave 2 1/2 hours and 6 inches later

Dave 2 1/2 hours and 6 inches later

The storm. I included a couple of pictures. First picture is the Duke
clinic campus as snow beginning. Coming down thick and fast. We were
walking to garage. It took us 40 minutes to exit the garage. What a mess on roads. All non essential employees were released from all the clinics at once. This caused total gridlock. Our normal 12-15 min drive took 2 1/2 hrs. The dusting of snow turned into 6″ by time we arrived at our apartment. The roadways looked like Atlanta last week, with cars abandoned everywhere. Cars with no traction were not able to continue on major highways, mostly due to lack of experience in driving in the snow and ice. I think Dave was proud of mom.
The little ole lady with the Florida car tags that kept us moving and made it safely, not without a few dirty looks. All those years of
experience in Chicago winters gave me a huge advantage I am sure. Today we are expecting another 1-3″ of snow, but despite icy rain last night we did not lose our power. Keep in mind we were told it rarely ever snows in Durham, NC when we got here!

As you can see, adventures with Dave continues ……………..

As always, thanks for caring!

Linda and Dave
Dlmyers@gmail.com 904-327-1492
Linda212@tds.net. 904-610-7352