March 31, 2014

After 15 days as a resident of Duke Hospital, Dave is once again home at our apartment. Why such a long stay? Primarily the diagnosis of Hyperkalemia is the issue. Too much potassium in his blood caused by what seems to be a constant state of dehydration. We are still waiting on one last test relating to his adrenal gland. This was sent off to Rochester, MN, to be run at Mayo Clinic, but several other things did surface.

It was discovered Dave also had Metabolic Acidosis, meaning, his body is producing too much acid, resulting in a loss of important elements. In Dave’s case, he was suffering from loss of bicarbonate, despite taking daily sodium bicarbonate supplements. This was yet another deficiency that can cause increased potassium. Symptoms include headaches, nausea, fatigue, etc.

So the identified list of items causing high levels of potassium and constant state of dehydration are: his primary anti-rejection medication, not enough daily fluid intake, body not absorbing fluids due to short absorption time caused by his Ostomy. Everything runs quickly thru his intestine, not allowing time to actually absorb into his system, Acidosis diagnosis. Still under review is the final adrenal glad test.

And let us not forget that darned BK virus. Is it really something to be concerned about or not? The most recent test showed his values jumped up to 10,800 (we were trying to get back to 0!). Both the nephrologist and infectious disease communities have now weighed in. They all agree its extremely rare that it activated in a patient with a healthy kidney. There is very little documentation or research to refer to on the subject. That said, the ID team will follow closely, with the goal being not to damage his healthy kidney. They do say while 10,800 sounds high, there is a significant higher number to be reached before we should be concerned. The plan is to not reach it. The surgical team has agreed to eliminate 1 of Dave’s anti-rejection meds, but if any of his liver or small intestine numbers start to get out of line, they will want him back on it.

Back to the question of why such a long stay. It takes a very long time to get so much in balance and David’s physiology continues to perplex and fascinate the doctors. Every thing gets changed in very small increments to get the balance right. Change one thing too much and another goes out of whack! Example: Remember all the dramatic low blood pressure drops we recently were dealing with? When the Doctors treated Dave for that, he soon started running very high. So he is now back on blood pressure meds.

These are the changes.
1. The Prograf anti-rejection medicine dose changes weekly based on labs. This won’t be changed based on BK levels or potassium. It is the critical anti-rejection medicine he will take rest of his life.
2. Eliminated cellcepht anti-rejection medicine. He is still on prednisone.
3. Acidosis – administered bicarbonate via IV in the hospital to get levels up to normal range and will continue oral meds daily.
4. Magnesium – IV boluses in the hospital and daily supplements but this has continued to stay low since surgery.
5. IV Therapy at home – Dave will hook himself up via his chest port daily to take 1 or 2 liter boluses as needed to keep himself hydrated.

As always, thanks for caring.

Linda and David

dlmyers@gmail.com 904-327-1492
linda212@tds.net 904-610-7352

 

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March 16, 2014

Dave greets his brother Steve at the airport.

Dave greets his brother Steve at the airport.

 

Crazy, crazy week. At the end of the week, as I write this update, David is once again, for the 2nd time this week, a resident of Duke University Hospital.

As the attached pictures show we had some fun times this week. David got a surprise visit from his brother, Steve. Steve arranged the surprise weeks in advance, with some specific, fun activities for Dave in mind. My job, was to keep the secret of Steve’s visit and work with Dave’s team to keep Dave’s schedule open. They were very happy to do so. Having visitors is a huge deal to the transplant team for Dave, since he is so far from home.

Dave often mentions visiting the NASCAR Hall of Fame in Charlotte, along with Hendricks Motor Sports. Home of several great racing teams, where you can tour their garages’, including Dale Earnhart, Jr’s. This was one of Steve’s surprises. So Dave’s labs were run early Monday morning instead of Wednesday, as we needed Wednesday open for the trip to Charlotte.

Since I couldn’t leave Dave home alone, due to his recent falling episodes, I did finally tell him about Steve’s visit just prior to leaving for the airport.

On the way to the airport we get a call from Dave’s team, “get Dave to the ER ASAP!”

His potassium level was close to 7 and he is a high risk for cardiac issues, as he is severely dehydrated and needs fluids.
Dave replied, “not until we pick up Steve from the airport. We are just pulling in.”

So we grabbed Steve and ran to the ER.

Waiting in the ER once again.

Waiting in the ER once again.

Seems we are now dealing with Hyperkalemia – excessive potassium in
bloodstream. In Dave’s case, his potassium was 6.8, which put him in the severe category and a high risk for cardiac problems. Which was the reason for the urgent call. After 7 hours in the ER, the 3 EKG’s apparently supported these concerns, and Dave was once again admitted to get re-hydrated and bring his potassium levels within a normal range. Apparently, high potassium causes low blood pressure. This is the reason for Dave’s recent bouts of BP drops and blackouts.

Lt. Steve, a Rescue Paramedic, knows how to catch sleep where he can.

Lt. Steve, a Rescue Paramedic, knows how to catch sleep where he can.

Understanding the huge importance Steve’s visit was to Dave, his team made every effort to get him to a point they could comfortably release him. And they did by 5:00 pm on Tuesday. Steve had great seats waiting for the 2 of them at the Carolina Hurricanes Hockey Game. They made it with 10 minutes to spare before the puck dropped.

Dave and Steve at the Hurricane's game

Dave and Steve at the Hurricane’s game

Wednesday found the 3 of us in Charlotte enjoying the racing venues Dave wanted to see the most. It has been a long time since I spent a
day with just my 2 boys. What a great time we had!

Linda and her boys

Linda and her boys

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Steve left for home and Dave, worn out from all the fun, slept almost the entire day away. Yesterday we went back for labs in the morning. No surprise, his potassium is again high. We went to the Infusion Center for 2 bags of fluid hoping it would do the trick. By evening his potassium level was again 6.1 and again his EKG was showing the peaked T waves so he was admitted to Duke again, where he will most likely stay until this is all figured out. We know he obviously isn’t flushing out potassium. We just don’t know why.

Saturday morning, Dave’s potassium level fell within normal limits. Although, instead of sending home, he is staying in the hospital. His Drs want to see if after receiving such large quantities of IV fluids how long before, or if, his potassium levels will increase. If there isn’t any increase, then a couple believe it may be happening because Dave is not taking in enough fluids and he is eating foods with high potassium when at home. In other words his own fault (trust me
it’s not!)

Saturday evening, Dave’s potassium level rose higher than when he was admitted despite all the hydration. It was now 6.4. It is clear his body is not excreting potassium, but why?

Apparently Dave’s liver specialist had an “ah ha” moment around 11:00 last night at home while going over all Dave’s notes. He then made a call early this morning to the Renal Specialist. This morning the Renal Specialist has been consulted and showed up bright and early. Dave’s kidneys appear to still be functioning properly so why is potassium not being excreted properly? Going to start running tests tomorrow looking at his adrenal glands. They are located next to the kidneys. Fingers crossed he will find an answer and there will be another magic pill to fix it.

FYI – Dave’s primary anti-rejection medicine increases potassium levels. So the medicine keeping his organs from rejecting could be a major cause of this And the BK Virus. What a frustrating situation!!!
Hope you enjoy the pictures.

As always, thanks for caring.

Linda and Dave

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

 

March 8, 2014

Dave was released from the hospital, again, late yesterday Thursday. His blood pressure stabilized and everything else seemed under control. Although, he apparently also picked up a 24 hour flu bug while there, since he woke during the night on Tuesday vomiting and was sick all day Wednesday. That was the only explanation doctors could come up with.

Dave was on a very low dose of Blood pressure medicine but that has now been discontinued. He was also on low doses of insulin 4 times a day. That too has been discontinued. We ‘ll see if this works.

BK Virus update – not good news I am disappointed to report. The blood test used is PCR. When the virus was detected Dave’s PCR was 1800. The most recent test dated 2/28 came back at 4700. Going in the wrong direction as 0 is where he needs to be. This means another reduction in his anti-rejection meds is necessary. The test is repeated every 2 weeks.

Dave’s GFR rate (the test to check how well his kidneys are functioning) is now also being monitored very closely as it has fallen below the normal function limits several times. Very worrisome.

While walking out of his bedroom at our apartment Friday afternoon, I once again heard what appears will become a familiar sound – a crashing sound. So if you refer back to paragraph 2, last sentence, about his BP medicine being changed and hoping it works, not so much. Dave’s BP again dropped low and he went down. I got him up, we got a few steps and down he went again. He did not lose consciousness so that, at least, is an improvement. The thinking is he may not be taking in sufficient amount of hydration to offset the amount of fluid he loses thru his ostomy, so he must increase his fluid intake. He gets dehydrated so quickly, which can affect blood pressure.

Until this latest mystery is resolved I will be listening for crashes in the night, hoping not to hear Dave getting up for a bathroom visit and hearing him land on the floor. Most important, I worry about him hitting his head.

Several people have recently inquired about Dave’s medical bills. To date, his medical bills here at Duke have exceeded $2 million. Information on how to make donations to the dlmyerstransplant fund can be found under the donations tab.

As always, thanks for caring.

Linda and Dave

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

 

March 4, 2014

Another exciting day. Took Dave to his scheduled urologist appointment to follow up on the status of the BK Virus. We almost made the appointment. While walking across the waiting room, Dave blacked out.
We got him up, into a wheel chair, and into an exam room where his BP was recorded at 78/45 and before too long we found ourselves back in the ER, missing his urologist appointment altogether.
Dave is once again a guest of Duke University Hospital, room 2330. He was home for less than 48 hrs. They are looking very hard for some sort of infection. 2 blackout episodes with sudden BP drops have their attention!

As always, thanks for caring.
Linda and Dave

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

 

February 28, 2014

Sorry for the delayed update. I was waiting for some test confirmations, which we received today. First and most importantly, Dave is feeling much better. The bug that got ahold of him this time, was pneumonia in his right lung. We got confirmation today that it is bacterial, thankfully, and not viral. Based on his symptoms, Dave’s team treated him very aggressively from the onset. They started him on multiple antibiotics (I counted 6 different IV bags of various kinds) in the ER to cover most anything, so he is already well on his way to recovery and will most likely be home tomorrow evening or Sunday as, he can finish taking the antibiotics at home.

The transplant team took the opportunity to run a few additional tests and were able to report the good news that there is no sign of any kind of rejection in any of the three new organs, despite having cut down the dosage of anti-rejection drugs due to the BK Virus. There was some inflammation around the pancreas, which was most likely responsible for Dave’s abdominal pain, coupled with the pneumonia.

There are still a couple of cultures we are waiting on but are expecting no new surprises.

As always, thanks for caring,
Linda and David

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