Saturday, December 20, 2014

'Tis the Season!

There has been an incredible outpouring of support for our family in the past few weeks. The financial help is wonderful, but the support involves much more than just money. We appreciate each and every gesture:  thoughts, prayers, cards, phone calls, visits, and gifts. Our talented and generous friends spent countless hours organizing and orchestrating fundraising events for us--thank you to all who participated in any part of them. 

On Thanksgiving weekend, some dear musical friends teamed up with LaSalle Market in Canton, CT and sponsored an evening of live music with donations to benefit our fundraiser. Friends, family, and even Santa himself contributed to the evening which raised more than $700.

Transplant:  an art bizarre + fundraiser, the pop-up event organized at ArtSpace on December 14, was a huge success. We loved seeing so many friends and family--that big space was filled to the brim with LOVE. Contributions to the John Toomey Kidney Fund from the event totaled $11,000!  

Wonderful colleagues at my job surprised me this week with some holiday cash. Our little family is feeling the love!

Monday, December 8, 2014

December update

Still no update on the Hepatitis C treatment, we are appealing to the insurance company currently and hope to find out in the next week or so.  We will find treatment somehow--it is urgent that we clear this virus soon before more damage occurs to the liver.

John had his monthly neuphrology appointment today.  His 'numbers' look ok--that is the bloodwork we do monthly to be sure his nutrition and treatments are as supportive as possible to his body's current state.  He can use some tweaking on the nutrition front, and he continues to work on this. Getting 84g of protein a day is challenging, even if you like steak.

Last week John had a chunk of skin cancer removed from his hand.  He has squamous cell carcinoma, a type of skin cancer that can have many causes including taking immunosuppressants.  He has been taking medicines to suppress his immune system for 30+ years, so when the diagnosis came we were not surprised.  Hate to add to his list of diseases, but believe it or not--this cancer is not at the top of our list of worries.  He sees a dermatologist every three months for an exam and biopsies.  She typically 'burns' spots off as well.  When the results come back as cancerous, John sees a surgeon to have it removed.  He has had a mohs procedure on some spots, and other cancers were just cut out.  The surgery last week left him with a 3 inch incision and many stitches on his right hand and wrist.  Next month he has surgery on his left hand.  John strongly suggests that should you ever find yourself in a position to watch the skin cancer surgery...don't do it. And he has a pretty high tolerance for this stuff.  The hand procedures present a bit of a challenge in that he needs to insert the needles into his fistula for dialysis and full use of his hands is critical. 

John is back to work, which is great for many reasons...not the least of which the fact that he likes his job.  After being so sick and immobile for several months this fall, the tendons and ligaments in his foot and ankle are inflamed, making walking difficult.  The tendonitis requires physical therapy and a topical medication.

Some fantastic friends have organized a pop-up art show and fundraiser for this Sunday, December 14 from 12-4pm at ArtSpace in Hartford.  Here is the link to an article that the Hartford Courant published over the weekend.  We'd love to see you there!

ArtSpace to Host Fundraiser

The outpouring of support for our family during this difficult time has been wonderful.  Thanks for keeping up with us here on the blog, and for the dozens of other ways you support us. 

Sunday, November 23, 2014

Save the date! December 14 Fundraiser

For Immediate Release

For more information:
Amy LaBossiere, (860) 543-3244

Artist Friends Create Fundraiser to Help West Hartford Family Who Needs Kidney

Hartford, CT — [November 23, 2014] — John Toomey needs a kidney, and his artist friends want to help. Spearheaded by Amy LaBossiere, Caresse Amenta, Marni Schiffres and Rachel Sclare, the four artists organized this pop-up event to have 100% of the proceeds to go to the John Toomey Kidney Fund. This one-day-only event will be held on Sunday, December 14, 2014 at Hartford ArtSpace Gallery, 555 Asylum Avenue in Hartford, CT, from 12 to 5 pm. A $5 suggested donation will be collected at the door. 100% of all money raised will be donated to the John Toomey Kidney Fund.

The Toomey’s are grateful for the community support. A relative created an online fundraiser that has allowed them to hold onto their mortgage while John Toomey has been out of work on disability. In addition to the normal bills, the co-pays from multi-ple office visits and medications are stacking up, and insurance covers only part of some services. Toomey’s wife, Dawn Manogue, has been close to the Hartford art scene for many years, organizing The Oracles, a community tarot art show of 22 artists in 2012 and other art shows. Read more about their family and their medical struggles here:

Manogue said, “Our family is grateful not only for the financial support but also for being surrounded by a creative and giving community that looks to help one another.”

LaBossiere said, “When I learned about what our friends were going through, I was moved to help in some way. I thought if I rallied some mutual friends, we could create a pop-up event, raise money for the family and give artists and local vendors a chance to sell their wares for the holidays. It’s a win-win for everyone involved.”

To learn more about the cause or make an immediate donation, please visit:

Tuesday, November 11, 2014

14 year Health Anniversary

So, John isn’t the only family member with a complicated medical history.  This is our family’s cardiac story, which started 14 years ago this week.

On November 3, 2000 Elizabeth Cogswell Toomey arrived after several days of labor.  She was due to arrive on Halloween, but took her time.  (Not much has changed there--she still makes us wait for her and does things on her own terms)

I delivered at a well-known women’s hospital in Boston with the help of a birth doula.  I was understandably weak and tired after the birth--42 hours of labor is intense. This was my first baby, I had no idea what was ‘normal’. Lily was in the NICU for a couple of days, so I had to walk there to visit her. I remember having to hold onto the hospital wall for support as I walked.   I felt exhausted and short of breath.  I was retaining so much water that I weighed more than I did before the birth.  The nurses assured me that my symptoms were normal post-partum experiences. Lily’s issues resolved, and we were discharged together. I was anxious to get out of there and begin to feel ‘normal’ again. I didn’t sleep well at the hospital, each time I would lay down in bed I became anxious and had trouble breathing.  I thought being at home would help my healing process along and take me out of the thick brain fog I felt since being hospitalized.

Once home, I continued to have strange symptoms.  I was still retaining fluid, didn’t have the strength to lift my daughter, and still couldn’t lay down.  I called my OB/GYN, and she insisted that I had ‘new mom anxiety’. It was an overall feeling of dread and helplessness with the physical symptoms worsening each day.  Thankfully John was home for one week with me, and did all of the lifting and household stuff that needed to be done.  I called my doctor again and again, as the symptoms worsened.  Seven days post-partum I started to lose my eyesight. It was as I were seeing things through a tunnel.  Breathing was difficult all the time, not just when trying to sleep.  Again my OB/GYN was sure I was suffering from anxiety. I couldn’t seem to convince anyone that something was wrong.  I was too exhausted to even cry at this point, and I asked her if she would please see me.  She refused, and said “if you really think something is wrong, take yourself to your regular doctor.  And he will tell you it’s anxiety.  Classic anxiety.”  So I did.

Still unable to sleep, I propped myself up on pillows all night, counting the minutes until my 9am appointment with the general care practicioner down the street.  I had never been to the office before.  The nurse did an EKG, and it was apparent that something was wrong.  They calmly told us to get to the ER in the next town.  Once we got there, a chest xray and EKG were ordered. John took Lily back to our home.  Nurses took blood for many tests and got me a nebulizer treatment to ease the breathing problem.  The chest xray and EKG revealed problems:  2 clots in the lung, and Stage IV heart failure.  My lungs were half full of fluid.  I was not scared at that point, I simply felt like shouting from the rooftop “I told you something was wrong!”  But as the ER became more hectic and the my doctor was heard raising his voice on the phone, it slowly occurred to me that all of this activity was about me.  The doctor explained that the origin of the clots was unknown.  They could be a pulmonary embolism, in which case I was lucky to have made it to the ER for treatment.  They could be an amniotic embolism, which would mean death soon.  They had no idea why my heart was failing, and needed to send me to a bigger hospital that would be better equipped to deal with these issues.  They called a helicopter to take me from Plymouth to Boston.  The helicopter arrived to Plymouth, but was not able to fly further because of an electrical storm.  There was no choice but to send me by ambulance.  I said goodbye to Lily and John, consciously determined to survive the transport.  

In Boston, after some dramatic ER situations (I remember thinking in my morphine state: “hey, this is JUST like the movies!”), I was diagnosed with Peripartum Cardiomyopathy and given a grim prognosis:  I would not l survive more than 5 years without a heart transplant.  I was hospitalized for just one day before they gave me a private room and moved John and Lily in with me.  I was feeling better as the fluid I was carrying was reduced.  I decided to ignore the prognosis--I didn’t even tell John--and focused on getting well enough to take care of the baby.  

My heart was severely compromised then, and I had to limit walking to 5 minutes TOTAL per day.  In other words, the only walking I could do was to the bathroom.  The cardiac staff treated me like a rock star--it was not often that they had a 32 year old female on the floor with an adorable newborn.  We spent several days there preparing to go home with not only a newborn, but a mom with a giant pill organizer to keep track of all the meds, and an injectable blood thinner.  I was forbidden from walking more than 5 minutes, and had to wear a holter monitor.  I was not allowed to climb stairs, and had to stop breast feeding. Once we were home, we had a post partum doula come in daily to assist me with everyday things--I couldn’t go downstairs to make lunch or do laundry.   

Slowly, I began to feel better and gain strength to walk.  We celebrated the little things: Walking to the end of the driveway to grab the mail, visits from friends, watching our adorable kid sleep.  

At Lily’s 3-month ‘well baby’ check up, the same primary care doctor that heard something wrong with my heart also heard something wrong with Lily’s heart.  A murmur was present that was not there previously.  We went for a consult with a pediatric cardiologist who said that she needed open heart surgery to repair a congenital heart defect.  I asked my cardiologist for a recommendation for a second opinion, and we ended up at Boston Children’s hospital.  Lily had open heart surgery at 18 weeks old.  There are only a handful of cases ever recorded with a similar defect. It was one of the most stressful events of my life.  She did very well, and we were home just under a week past surgery. We had mother-daughter cardiac meds for awhile.  

This was not a typical initiation into parenthood.

Within a few months, my heart improved enough that I didn’t need a transplant.  Gradually, the function returned to within ‘normal’ range.  My normal is comparable to someone much older than me, but with a normal life expectancy.  The way my cardiologist put it:  “you’ll never run a marathon, but you’ll be around for a long time.”  

Normal heart function and a bonus:  an excuse not to run a marathon!  The experience was very challenging and working through it over the years it has spurred some new and wonderful experiences:  adopting from Ethiopia, return to teaching, earning a second Master’s degree in Integrated Medicine, becoming a national spokeswoman for heart health, and a lot more compassion.  

Wednesday, November 5, 2014

Waiting for approval!

John went to Boston today to meet with his liver specialist. If you are just catching up, John has 2 liver diseases:  hemochromatosis and hepatitis C (HCV).  Because of the damage to his liver from these diseases and the damage from the multiple medications he has taken to treat kidney disease and kidney transplant, his liver is fairly damaged. Not damaged enough to need a liver transplant, but too damaged to receive the kidney transplant he needs to live. Limbo.

The good news:  hemochromatosis is fairly easy to treat, in involves bloodletting.  That disease is under control, and does not require further treatment.  There is now a treatment for the HCV which CURES patients.  It has been approved by the FDA.  This is a miracle treatment, it has the potential to save many lives.  The best sustained results are within the group of people with Genotype I HVC, which is John. Also, John started back at work this week. Hooray for good news!

The unknowns:  The HVC treatment has not been studied widely with patients on dialysis. The meds used to treat the HVC are filtered through the kidneys, so we are not sure how treatment will progress with the dialysis, which is an artificial kidney. Will too much medication be filtered out? Not enough?

John's doctor submitted his case to insurance today for the approval of the $84,000 treatment. He expects that we will be denied at first, and we'll have to fight. I am ready. 

We are so grateful for the ongoing support. The financial support from the online fundraiser has allowed us to hold onto our mortgage while John has been out of work on disability. In addition to the normal bills, the copays from multiple office visits and medications are stacking up, and the insurance covers only part of some services.  It takes a while to sort it all out and sometimes pushing back on insurance, but we end up with part of most bills. 

If when insurance approves the HVC treatment, and they cover the typical prescription benefit, our portion will still be about $17,000.  After that hurdle, we are planning for transplant.  That will involve missed work again, and potentially travel.  More on that later.

Thank you for keeping up with us here, that support is appreciated, as well.  Along with the snacks, texts, driving the kids, checking in, and the millions of other ways it shows up.  Thank you! 

Experiences like this have a way of bringing friendship and community into focus.

Friday, October 24, 2014

Big Pharma

John had an appointment with his transplant neuphrologist in Boston today, the first one in six months.  When we had the last appointment, we were thinking it could be 1-2 years before he started dialysis. It took only 3 months for the kidney to fail completely, and then we spent the summer dealing with the complications from infection.

Dr. P believes that John is doing well, especially given all he's been through in the past six months.  They discussed the next phase of treatment before he can be listed for a kidney transplant:  clearing his body of Hepatitis C (HCV).  There are some treatments available now, but they can not be used in transplant patients.  The HCV load has remained fairly low for the past 22 years, and recently started progressing.  There is some urgency to getting treatment underway, as John's liver damage is severe enough that he is close to needing a liver transplant.  One of the theories as to why the HCV did not become a problem until recently is that the immunosuppressants he was taking to ensure his immune system would not reject the transplanted kidney also kept the HCV in check.  He is no longer taking the immunosuppressants.  

There is a new oral drug regimen that clears most HepC patients of the virus.  Cures them.  The medical professionals are excited about this, and the trials a few years ago were hugely successful.  The problem is that the insurance companies don't want to pay for this very expensive treatment. Also, dialysis/transplant patients have some restrictions.

In the meantime, a trial was done with the new meds on dialysis patients.  It worked!  The gastrointerologists and neuphrologists are thrilled.  Now they wait for the NIH to finish 'reviewing' the trials, and for the FDA to approve the meds for use in dialysis patients.  THEN the insurance companies get to decide if they will pay for it.  Click on the articles above to see how well that went in other countries.  

So the battle becomes fighting Big Pharma before we can fight the HCV.  John's docs were hopeful about having treatment in December, but it could be longer.  

Modern medicine has saved John's life several times.  It is maddening that we have a cure in sight, and it is up to insurance and the pharmaceutical company to decide if he gets it.  

Next Boston appointment:  November 4.  Hoping for some good news about available treatment for HCV so that we can work on the end goal:  transplant #3.  

Monday, October 13, 2014

The New Normal

I am happy to share that home hemodialysis continues to go well.  Getting on and off the machine has become more routine, and the alarms on the machine less frequent.  Well, we are less panicked about the alarms, as well.

John puts two needles into the fistula in his arm for each treatment.  He has created 'buttonholes' in his arm for easier access.  The fistula is in his right arm, which means he has to insert those needles with his left (non-dominant) hand.

The entire set-up for treatment is in one area, meant to be accessible to John using his left hand to grab anything he needs and to run the machine.  Typically I help get him set up, and then can leave the room and do other things around the house during treatment.  

Once a month, John pulls 6 vials of blood to send for tests.  We have a centrifuge in the dialysis room, so we spin and stabilize the samples before they are sent out via FedEx.  He also administers heparin and epogen during his treatment.

John has not returned to work, but hopes to go back in November.  His energy has been better for about a week now, and we are finding 'the new normal'.  After the complications and severe illness this summer, 'only' doing dialysis seems relatively easy.  

Friends and family continue to help up raise funds to keep up with living and medical costs.  Here is the link to the fundraiser on YouCaring:

Kidney Quest for John

This winter there will be an art show fundraiser attached to  the YouCaring page.  Will share the details as they develop.  We have amazing friends and family!

Next up:  Hepatitis C treatment in December.

We are overwhelmed by the support from friends and family near and far. We are so grateful!

Sunday, September 21, 2014

September update

The antibiotics are done, and the fevers have not returned.  John's heart rhythm continues to be normal as well, but the rate is fluctuating.  It was in the 80s for a couple of days, but back up near 100 again today.  He is feeling OK enough to get out last night for a couple of hours at a birthday celebration.  It's good for him to see friends and hear encouraging words.

Dialysis is getting easier--less alarms and less stress.  Our garage is full of supplies, and we have one room dedicated to the process.  The machine itself is not very big:
Dialysis machine--the 'kidney' is the cylinder on the left

There are to points of entry on John's arm:  the arterial and venous lines

We have to monitor his blood pressure and the pressure in both circuits through each treatment.  John records numbers every half hour or so.  He also records his vitals and his weight pre and post treatment.  One of the functions of dialysis is to take fluid off of his body, as his kidney can no longer do this.  He has to watch his food and fluid intake, as they can affect his heart and fluid retention.  

So, we are hoping that we can focus on just dialysis over the next couple of weeks, and that John is able to regain some strength and muscle mass lost over the past couple of months.  He is supposed to take in 81g of protein a day, and that is not easy!

Right now, John is with four 12-year olds at a trampoline park to celebrate our son's birthday.  I assume John is not bouncing, but it is thrilling that he is well enough to take them for 2 hours because one month ago he could barely climb the stairs in our home.

One of John's cousins set up a fundraiser online for us.  We are grateful, as John is not working and we are not sure when he will return.  Of course the house continues to need repair, and the medical bills are mounting...  but we try and stay focused on the important stuff:  health and family.  We still trust that this will all work out, and try not to spend time worrying about the things we can't control.  Fundraiser link:

To all our wonderful friends and family-- thank you for all the support in the many forms it arrives in--snacks, heat, visits, dialysis-helpers so I can go to school functions, silly texts, enthusiasm in seeing John out and about, driving my kids around, listening to me complain as I mis-direct stress, piles of new school clothes for the kids, checking in here,on the blog,  getting tested to see about donating a kidney, sending thoughts and prayers, and all those offers of help that I am not organized enough to make use of yet....thank you.  

Looking forward to the fall foliage!

Saturday, September 13, 2014

Last dose of vancomycin

John is just finishing his last dose of the IV antibiotic vancyomycin right now.  He has been on the medicine for just over one month, and the symptoms of the mystery infection have disappeared. His heart rhythm and rate are within normal range again as well.

Now back to the regular business of getting the hang of home dialysis and focusing on the next step:  treating the Hepatitis C.  That treatment is scheduled for December.  It will be a nice break to have 'only' have to focus on dialysis.  

He had a rough few days with gout in his feet and hands, but that is also resolved with some extra steroids.  Overall, baby steps forward recently.  

After the HepC is gone, we will concentrate on the end goal:  finding a viable kidney donor!

Thanks for all the thoughts, prayers and well wishes.  And the muffins and sauces and crisps.  ;-)  Keep them coming!  

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?  

Wednesday, July 30, 2014


July has come and gone--dialysis training is almost done.  John has passed all the exams in order to start home treatments.  His fistula is mature enough to use, so he needs to practice with it and it will become bigger and easier to use.  Monday was the first run with the fistula, and he was severely bruised.  He will be doing treatments exclusively at home within the next couple of weeks.

The treatments are working well.  John pulls his own blood and sends it for analysis each week.  There are five pages of results, measuring all aspects of kidney and dialysis function.  All of his bloodwork is now showing 'normal' --or expected-- range for his goals.

One of the nutritional goals for John is to consume 81g of protein each day.  Doctor's orders: eat steak.  I don't think this part of the treatment bothers him.  Shrimp and salmon, too.

The home machine was delivered yesterday, and next week we expect a supply for one month of dialysis to be delivered.  78 boxes.  Each of John's treatments use 20L of dialysate.  He does 6 treatments per week, each treatment takes 5-6 hours.  It's like having a full-time job!

Once we have the home treatments as routine, we will begin the protocol for the HepC.  I believe that will take about 12 weeks, at which point John will be placed on the transplant list as 'active'.  The transplant list is slow-moving, he will probably wait for 5-7 years for a deceased donor match.  A living donor is a far better option, I will post more about that later.

We have done some normal family things this month, as well:  family reunions, beach days, and watching good friends complete an Ironman event in Lake Placid.  John has not had energy for this type of activity in a long time, so this is great!

Happy summer!  And as always--thanks for the positive thoughts and prayers.

Thursday, July 3, 2014

Busy week!

We started home dialysis training on Monday, and completed the fourth session this afternoon.  We have the 3-day weekend off, and back to daily training on Monday.

During each treatment, 60-70 liters of blood are filtered.  Because John's renal function has been poor for many months now, there is an extensive build-up of toxins in his blood.  Once they are partially cleared from his blood, some of the toxins residing in organs moved into his blood, making him feel worse than before he started.  This 'healing crisis' should subside by the end of next week.

Today was a bumpy run on dialysis with cramping and a sudden drop in blood pressure.  These are both common occurrences during treatment, so we got some tips on how to handle those situations.

The training is at DaVita, with a fantastic dialysis nurse named Justina.  She is a strong teacher and experienced nurse.  And she doesn't stand for John not completing his homework.  She has made us both feel confident that we can handle treatments at home.  I have not fainted yet, and feel vaguely accustomed to the idea of removing blood, filtering it, and putting it back in.

While doing the HHD, John will still check in at the clinic for bloodwork and other monitoring.  We have a 5-page printout of bloodwork results from this week.  Potassium dropped low again, hoping to correct it without hospitalization.

In liver news:  our appointment in Boston went well.  John has two diseases that affect his liver:  hemochromatosis and Hep C.  His liver is moderately damaged from this diseases and all of the anti-rejection drugs for his kidney transplants.  The doc feels that the damage can be reversed, and that John does NOT need a liver transplant.  That is some good news.

The hemochromatosis is controlled by removing units of blood.  This is almost under control, and as soon as he is stabilized on dialysis, we will begin treatment for HepC.  He contracted HepC on dialysis in 1989 before there was a test for it.  The hygiene standards have changed dramatically since then.  The treatment is new, not yet FDA approved, and never been tried with a patient in renal failure.  Yet, it is our best option--so we plan to move forward with it and wipe out the HepC so that a kidney transplant can be the focus.  Overall, a good week.

Much love to you all--


Friday, June 27, 2014

Procedure today

This morning we are off to St. Francis Hospital for a temporary catheter placement.  John starts dialysis on Monday, and the fistula is not yet mature enough to use.  Not expecting a hospital stay this time.

Next week is busy with appointments:  dialysis treatments and training everyday for 5-6 hours, and one appointment in Boston for liver issues.

The dialysis should give some relief from the extreme fatigue and edema John is experiencing.  He is still at his job full time, we are working out the details on short-term disability and/or working part time.  In one sense, the timing is good because I am able to do the dialysis training along with him--I am on summer vacation from teaching. This will be a crash course of aversion therapy for me... I typically faint when having blood drawn.  Since this is basically a 2.5 hour daily blood draw, I can only assume I will get used to it.  Right?

As always, thanks for the positive thoughts and prayers.

Sunday, June 8, 2014

Potassium and a hospital stay

John is back in the hospital, docs are working on getting his potassium levels within range.  Too much or too little potassium is problematic. We got a call at 6:30 this morning from the nephrologist on call who checked his bloodwork, urging him to check in right away, as his level was very low at 2.9.  Low potassium is rare for end stage renal failure, typically patients have to severely restrict their intake.  John took full advantage of the situation and asked for a banana and chocolate covered almonds--high in potassium snacks--as he received potassium in an IV drip.

I love his local kidney doc.  I called him (on his personal cell) this morning, to let him know about the treatment plan and get his input.  He came right down to the ER and checked on John himself.  He has a lot of experience, and the best part of the medical experience today was when he said "I treat patients, not numbers." All of the bloodwork numbers used to measure kidney function are off.  Way off.  Either the kidney is shutting down completely, or the potassium issue has caused a domino effect in many systems.  More bloodwork being done as we left this evening.

He is finally out of  the ER and in a private room.

Surgery is scheduled for Tuesday to put a graft in his arm for dialysis.  We'll know tomorrow if this hospitalization will affect the timing of the surgery.

Many thanks to friends and family helping out in so many ways!

Friday, May 30, 2014


On Saturday, John had a treatment for hemochromatosis, a genetic disease which causes an iron overload in the blood. The treatment is phlebotomy, or removal of blood, to reduce the iron load.  The treatment wiped out his energy completely. 

He saw the local nephrologist on Wednesday, and it is clear to the doctor that John needs to be on dialysis right away.  There are several types of dialysis available, and we are going to try completing the treatments at home.  Dialysis is a process that 'cleans' the blood--an artificial kidney process.  This process allows patients better quality of life when the kidneys fail, however it is meant to be temporary.  This chart on patient longevity includes first transplants only. 

In-home dialysis will require many hours of training for both of us, but will allow many benefits including a more flexible schedule for treatments.  He will need dialysis 6 times per week, and each treatment will take 4-5 hours with set-up and clean-up. 

John will have a surgery to create a vascular access for the dialysis treatments in the next few weeks.  Hopefully it will be a fistula, but it could be a graft.  He will also have a catheter which will allow him to be dialized (yes, it's a verb, too!)  immediately.

The home dialysis kit weighs about 75 pounds, and is portable.  In case you want to take it camping.

Thanks to everyone for the kind words and especially those who made time to help us out at home this week.  You are very much appreciated!

Sunday, May 25, 2014

Hey local friends!

In medical news this week: one of the sites of the skin cancer biopsies is cancerous, so we will schedule an appointment to have the spot removed.  This week we will also schedule the surgery to put the fistula in for dialysis.  We are anxious to have that in place.

The last time John went on dialysis, he was in his early 20's.  He felt physically the same before and after transplant--the difficulties of renal failure and dialysis were minimal.  This time is different.  His energy is very low, and some of the treatments and medicines he receives leave him unable to do much of anything.  Many people with John's renal function are bedridden and / or wheelchair bound.  He is still working full time, but anything outside of those responsibilities is a struggle.  The diet required for end-stage renal failure is not at all nutritious, leaving him with severe fatigue.

We are getting our home ready to sell, putting our focus on John's health and keeping things as normal as possible for the kids.  John is a carpenter, and he has been working on several projects in our home that we need to finish as soon as possible.

If any local friends and family have an hour or two to spare, we could really use some help!  We want to get the house on the market this summer.  There are a variety of things that need to be done--yard work to electrical work.  Message me on the FB, or email:

Friday, May 16, 2014

Still waiting to be listed...

This week's appointments included a liver test called Fibroscan, a non-invasive exam which is able to determine liver health with better accuracy than a liver biopsy.  John has had liver biopsies before, and like most people who have had them, was not looking forward to another.  Luckily we are just 2 hours from Boston where they offer this newer technology--and no pain!

Also saw the dermatologist who did take two biopsies.  John has had several spots of cancer removed from his skin over the past two years,  a squamous cell carcinoma resulting from the anti-rejection medications used after organ transplant.  Cancer is a frightening word for most, but this cancer is one of the more manageable diseases on our list.

Today he saw a vascular surgeon who did an extensive ultrasound of his veins to map out a place to  create a permanent access for dialysis treatments.  We are waiting for the results from all of this week's tests.

Will update here as soon as he is officially on the transplant list--there is a committee which will review John's case and determine if he is eligible.  It will be a big relief to arrive at that point!

Monday, May 12, 2014

Back on The List

So, we are working on getting John back on the kidney transplant list.

John has had FSGS since he was a child, diagnosed at age 7.  Eventually the disease took over both kidneys, and he had a transplant in 1986 from a living donor--his brother.  That transplant lasted several years.. but infection, rejection, and the disease overtook the donor kidney as well.  One theory is that the match was too good.  John was on dialysis* for a couple of years, and had a second transplant in 1992 from a deceased donor. 

*edited:  John was on dialysis for 3 years and 3 months!

We are lucky and grateful that transplant lasted for 22 years, with no complications! 

Over this past year, John's kidney function has declined and he is now in end-stage renal failure. The symptoms are hitting him a bit harder at age 46 than the last time he experienced it in his 20s. 

His best chance is a living donor transplant, as soon as possible.  His blood type is O+, but there is more to the matching process than just blood type.  We are looking in to a program called paired donation where multiple donors and recipients are matched.

He is being followed by the Transplant Institute in Boston, as well as a local nephrologist. We will update this blog with events and progress.