Saturday, August 30, 2014

New complications

Home hemodialysis is going well.  John and I have been doing it at home without nurse support (other than an occasional phone call), and are becoming more confident.  It is more challenging than either of us expected--partly because he is not feeling well.

After the most recent hospitalization, the fever returned for about a week.  Some nights it was over 104!  Although I accused him of just wanting a sponge bath in the middle of the night,  several times it was frightening.  He continues to take the vancomycin (an antibiotic administered intravenously) after dialysis.  He has not had a fever in 7 days.  He is still experiencing a high heart rate (155-140 resting) and a cough.

The high heart rate has been troublesome for many reasons, but practically because it is difficult to be comfortable and to sleep.  This past week it felt more urgent, and our nephrologist sent John for an EKG.  This brought a new diagnosis:  Atrial Fibrillation.  His heart is stuck in an abnormal rhythm.  It is likely because of the whole mystery infection he is fighting, and not a permanent symptom.

Next week he has an appointment for another transesophageal echo, and then they will try and shock his heart back in to sinus rhythm.  In short, they stop his heart with the idea that it will restart in normal rhythm.

He is also being treated for Adrenal Insufficiency, adding an endocrinologist to his list of doctors.  This is a rare disorder probably caused by a lifetime of taking steroids for his kidney disease.  Two of the doctors disagree on this diagnosis, which we will need to sort out after taking care of this more immediate cardiac issue.

John has taken a leave from work to focus on his health.  He is intending to go back as soon as he can--he has never been a person to hold still for very long.  We need to figure out how to make this work financially for now, planning on getting the house on the market as soon as possible. The other three family members are back to school with Lil in grade 8, Dawit in grade 7, and me teaching grade 6. That's a lot of middle school.

The big picture remains the same:  John needs a kidney.  These are some glitches in preparation for a transplant. The last transplant lasted for 22 years.  That is amazing! John was not hospitalized once for any kidney issues during that time.  In fact, many of our friends and neighbors had no idea of his medical history. Our entire married life he has been well.  Feel free to check in--staying connected is really important to regaining health and strength.  It has been lovely to get a couple of cards in the mail and phone calls from family, and visits from friends who feed us.

Gratitude and love for positive thoughts and prayers and many gestures of support.

Sunday, August 17, 2014

Fever of Unknown Origin

John was discharged last night from St. Francis Hospital.   The official diagnosis: 'fever of unknown origin'. Typically this diagnosis results in another diagnosis of the more serious underlying disease that has not yet manifested.

Nephrologists, cardiologists, infectious disease specialists, and gastroenterologists spent the last week running tests to rule out some possibilities.  Although they can't tell us for certain what is causing the fever, they did tell us what it IS NOT:

  • UTI
  • Hepatobiliary infection (or cancer)
  • Endocarditis 
  • Bronchitis / pneumonia 
  • A long list of things ideas from the infections disease doc--most of which I did not understand, and decided not to research unless necessary. Some of those blood tests were based on the fact that he has spent time in Wisconsin!  
A couple of those would be deal-breakers for a kidney transplant, so these past days have been full of concern.  John's rock-star nephrologist was worried, too.  Still not understanding exactly what is going on, but some scary possibilities are ruled out, and he has a couple of theories.

It could be the end-stage of function for the donor kidney that has been working for 22 years.  Or the body's rejection of that kidney now that some of the anti-rejection meds have stopped.  Treatment will include vancomycin (an IV antibiotic) during his dialysis treatments.  

The current goal is to get John healthy enough to receive a kidney transplant.  At this point, there are three steps within that goal:
  1. Get home hemodialysis up and running, and John's numbers stable on that treatment
  2. Resolve the symptoms and fever associated with this last hospitalization
  3. 6-12 weeks course of treatment for the liver disease Hepatitis C
Then we can focus on the next step:  finding a viable kidney donor!

In other words, getting a transplant right NOW is not an option, and would not fix the current issues.  We need to go through the steps in order to have the best chance of a successful transplant. 

We continue to be impressed with John's nephrologist.  He and all involved in John's care at St. Francis were conscientious and professional.  And human.  John amazed much of the staff with his story and the fact that he does his own dialysis.  Many of them had never heard of that concept.  He also pissed off some nurses by insisting on things being done his way.  

Each time the doc says "FUO" (fever of unknown origin), for some reason I think of the RoUS in the Princess Bride.  

Thursday, August 14, 2014

Ongoing fever

Today was supposed to be the very first day of home hemodialysis!  Unfortunately, this situation has priority.

John is at St. Francis again, with the same symptoms he has been experiencing for the past two weeks:  fatigue, fever, sweats, tachycardia, cough and generally feeling cruddy.  Now his blood pressure is dangerously low as well.  He has always used medicines to control his high blood pressure.

We have an amazing nephrologist leading the search for the cause of the infection.  An infectious disease doc and a cardiologist are both running tests as well.  He had an echocardiogram today, and will have a trans-esophageal echocardiogram tomorrow.  These docs are sorting through the complexity of John's situation and making connections between symptoms and test results, and ruling things out.

So far, likely not a bronchial infection and likely not pneumonia.  Hope to cross all cardiac issues off the list tomorrow.

It could be any number of issues causing these symptoms:

  • bacterial endocarditis
  • staph infection in the blood which is now 'masked' because of antibiotics
  • bronchial infection
  • final stages of rejection / death of the donor kidney he's had for 22 years 
  • mystery fever (I don't remember the medical term, but apparently some fevers resolve without presenting their source)
John's nephrologist is a fantastic doctor and all-around decent human.  We got to the ER last night, and he came in immediately.  He was still there at midnight, making careful notes and orders for today.  The doctors he brings in on the case are fantastic as well.  He is in great care there.  Currently he is in an 'intermediate care' floor--a level of care between ICU and a regular floor.  

The hospital room is lovely, and as I left this afternoon John was happily watching Shark Week.  

As always, thanks for positive thoughts and prayers and kind words!  Also to friends for taking our kids last-minute and all the check-ins and for listening....  love to you all....

Monday, August 11, 2014

Home Dialysis, unknown infection, lots of fever

First, it looks like John will be doing his dialysis treatments at home by the end of this week.  We have dedicated a room for this, as the equipment takes up more space than we anticipated.  The little office now has the title of 'dialysis room'.  Deliveries have arrived from many sources, most notably one ton of dialysate solution.  Yes, 2,000 pounds.  This is one month's supply.  Each treatment requires 20 liters of dialysate.  Does this give you a new appreciation for what your kidneys do for you?  Healthy kidneys filter about 180 liters a day. 

He is also still battling some unknown infection.  This took him to the ER several times last week with a high fever.  John needs to be more careful than an average healthy person with fever, he is immunosuppressed with medication so that his body does not reject the donor kidney.  Also, the catheter that he started dialysis with goes straight to his heart, so if an infection invades can be serious quickly.  Tomorrow he will have the catheter removed!  His fistula is working great, and his doc wants to eliminate the cath as a possible source of infection.

He is suffering with horrible chills and fever mostly at night.  The nephrologist is AWESOME and taking this seriously.  John had a chest xray today, is on a new antibiotic, and having the cath removed tomorrow.  Have I mentioned how much we like this doc?  Bonus:  he lives 4 houses away, and takes my calls on his personal cell.  Each time John has been in the ER or admitted to the hospital, he comes to confer with the ER docs, whether he is on call or not.  He is calm and reasonable, and takes our opinions and ideas as valuable input.  

Here's hoping for a smooth transition to the home dialysis, and no more fevers.  We are hoping to get into a new normal with this routine, but it has been a bumpy ride as this kidney fails.  

We are squeezing in summer fun sometimes, and were lucky to see some of John's family in the city he grew up in and loves over the weekend.  That's Scituate,  MA in the background.

Thank you to all for your gestures of support, big and small--they mean the world to us.  

Sunday, August 3, 2014

Eventful weekend

On Friday, John had his fistula evaluated through Interventional Radiology at St. Francis Hospital.  He used it for the first time to dialyize the Monday before, and was severely bruised.  The photo here was taken today, 6 days after the injury occurred.  As you can see, it warranted investigation.

They did a contrast dye study, and it's a fabulous fistula.  He has a couple of stitches from the procedure, and a bit of soreness.  We left the hospital remarking on what an easy, good-news appointment we had.  The discharge papers included strict orders to call if a fever beyond 100 was present.  On Saturday afternoon, he started feeling feverish, and his temperature slowly climbed.  He spent the afternoon and almost overnight in the ER, at St. Francis again.  Immediate blood tests came back ok, and he received some intravenous antibiotics and came home--with instructions to call about the blood culture test results.

Today he was still not feeling well, and he got the news that he indeed has a staph infection in his bloodstream.  He has been admitted, again, to St. Francis.  This is complicated because of his immunosuppression, and having daily dialysis.  How can you take antibiotics when they will be dialyized out of your bloodstream with the next treatment?  I hope to understand that before I leave tonight.  Always grateful for prayers and positive thoughts.  

Thankfully, St. Francis is just a couple of miles from our home.  We are wondering about some type of frequent-visitor program.  Buy 4 ER visits in one month, get 1 free?