Thursday, April 21, 2016

April 2016

A long overdue update! Overall, John is doing very well.

Many people with kidney failure develop issues with the parathyroid gland.The main purpose of the hormone produced by this gland is to keep phosphorous and calcium levels consistent in the blood. Among other things, phosphorous and calcium regulate blood vessels, bones, and heart function.John takes phosphorus binders with every meal, and is taking Sensipar to get his hormone level in check. He has responded well to both of these medications and his recent blood tests show that phosphorous and calcium are within desired levels.

Recently John began passing some urine (which really should NOT happen because he has NO kidney function) At times there was blood in the urine.The urologist checked for bladder cancer and found none. He ordered a CT scan of the abdominal are and the radiologist saw a problem in the transplanted kidney--the one that just failed. He named it 'cancer', which was a surprise for us because kidney cancer has not been on our radar.We went to the Beth Israel Transplant Center in Boston for a second opinion and a treatment plan.They wanted to take the kidney out immediately, so the transplant surgeon removed it on March 16.The pathology report is cancer. John's immune system was attacking the kidney, and it was bleeding and deteriorating.Now he's down to 3 kidneys, none of them working. Hope to add a functioning kidney soon!

The squamous cell carcinoma battle continues, new spots are developing. This respite from immunosuppressant drugs while on dialysis should have slowed the cancer a bit, but he is still checked every few months. He has lesions removed every 3-6 months.

This week brought pneumonia, John thinks it may have been brewing since the March 16 surgery. Hope that the antibiotic kicks in quickly.

Thursday, July 2, 2015

July 2015: A Year In Review

John has been on dialysis for one year this week. Wow, what a year.

In February 2014, we learned that John's transplanted kidney was beginning to fail after 22 years. It is possible to live quite well with minimal kidney function, so we had the idea that John would have one or two years before he would need dialysis. Things changed quickly from there! Kidney function rapidly deteriorated, and John's energy level went down with it.  By March we were 'applying' to the BI Transplant Institute for consideration for another transplant and preparing for a new reality of daily dialysis.  April brought a hospital stay with cellulitis.  May and June brought continued deterioration of John's health in general, and the realization that we would be in a very difficult financial situation if he were unable to work. He had a surgery to insert a port for dialysis, and another surgery to create the fistula for cannulation on hemodialysis.  In July we began full-time training for home hemodialysis at a clinic in Bloomfield, CT.  He cut his hours at his construction work in half, relying on short-term disability insurance. John was at the clinic for 8 hours a day learning the process and having treatment on the machine he would eventually bring home. Last year at this time, he was using a port for hemodialysis, waiting for the fistula to become mature enough to use. By the end of July last year, he had developed a fever, and spent time on and off all through August at St. Francis Hospital trying to determine the source of infection. A few nights his fever hit 104 degrees. We never did determine the exact cause, but a boatload of doctors and tests were involved.  He ended up on IV antibiotics for 6 weeks, and slowly improved.  He was home from work for 12 weeks.

In the meantime, Hepatitis C and hemochromatosis had taken a toll on John's liver, and he was very close to needing a liver transplant in addition to a third kidney transplant. The transplant team informed us that the HepC would need to be cleared before he could be active on the kidney transplant list. The new treatment was just available in the states, under the brand name Harvoni. It had not been tested on dialysis patients, and although it offered almost a sure CURE of the disease, the cost of treatment was roughly $100,000.00.  On New Year's Eve at 4:00pm, we got a call from the pharmacy saying that John had been approved by our insurance for the treatment. An excellent start to 2015!

Home dialysis had become manageable, and he completed the course of Harvoni.  He was back to work full time, and I landed an awesome full-time teaching position here in our town, and although our daily routine was different and hectic, we had found a new normal without an immediate health threat. John shows no sign of HCV. There have been issues with a herniated disc in his neck, and lots of skin cancer. We handle those as they come up. With the help of friends and family through fundraisers, we managed to hold on to our home and keep things 'normal' for our kids. We also have a specific fund set aside to help when it's transplant time!

The whole situation has revealed relationships all around--not just within our family but also with our extended circle of family and friends. It has been completely unpredictable.  Family and friends have rallied and created opportunities for fundraisers. Near strangers (and celebrities) have stepped in to help, friends have consistently shown up, put up with our new 'normal', and helped with our kids.

John and his cousin Christian Zucconi of Grouplove and Aloke
Others have retreated and disappeared. We understand.

Now we find ourselves in July 2015. Still here! Kids busy doing teenager things, John working at a new job and feeling healthier than he has in years, and doing dialysis in addition to working full time. The skin cancer is a real hassle, he is having surgery on 7/15 to remove 3 cancerous spots, and had multiple pre-cancerous spots 'burned' off a few weeks ago. So our daily life may appear stressful to most families...we are in a much better place than we were a year ago. We plan on building on that and not dwelling on the difficulties. We are grateful to have a relatively normal family life.

This month brings a big appointment at BI Liver Center, when we hope to get the official news that John is HCV-free and he can be placed on the ACTIVE list for a transplant.  This means that he can get a transplant from a deceased donor (the wait is 5-7 years) or a living donor.  A living donor is best for many reasons.

We are hopeful about a living donor, and several individuals have come forward to be tested.  This is a humbling experience. Hopefully more on that soon.

John would not be here at this point if we didn't have the guidance of his local nephrologist. Dr. M is very local--about 5 houses from us. We first met at a block party about 8 years ago (hosted by a neighbor who has connected us with a potential living donor!). He is the best of the best. Seriously, we have had many doctors between John's kidney/liver disease, my heart disease and failure, and Lily's open heart surgery.  You might say that we are professional patients. This doc has the balance of being extraordinarily bright, experienced, an excellent listener, and having outstanding interpersonal skills. He sees the big picture. He puts up with me. I have his cell phone number, and he meets us at the ER, even at midnight in the aftermath of a Lil Wayne concert in Hartford.

Thanks to all of you. The next chapter is looking toward a kidney transplant. We are ready!



Friday, March 27, 2015

March Update

John is finishing his Harvoni treatment for Hepatitis C, he has just over a week left. The doctors will check his blood for the viral load over the next few months to see if there is a recurrence.  This happens, and a second round of Harvoni has a 100% cure rate. And another $90,000.00 price tag.  The sooner he is rid of the virus, the sooner we can get to the end game:  kidney transplant. 

Other health happenings: the squamous cell skin cancer will be an ongoing battle. John sees a dermatologist every few months for evaluation, and has surgery to remove any spots. The cancer was caused by an anti-rejection medication he took for many years to hold on to the transplanted kidney. 

A few weeks ago we went to the ER for severe chest pain. John was confident that it was not cardiac, but that had to be ruled out. He eventually got a diagnosis of a herniated disc, which can cause pain in places not even close to the disc. In John's case it was chest/shoulder and the tops of his feet. He has responded to physical therapy very well, and no longer has pain. 

Dialysis is still OK. Occasionally we learn some new issues with various alarms on the machine, but it doesn't invoke the urgency or panic that it did last summer. Most of his 'numbers'--the values they test monthly- are good. He is careful with protein intake, phosphorus, and iron.  His hemoglobin count is very low, making him severely anemic. He is tired, but still working and doing dialysis daily. He had an infusion of iron last week in an effort to bring up his hemoglobin. This is counterintuitive to me as he has a disease called hemochromatosis--an excess of iron that he is treated for by removing blood. At any rate, hope to get that red blood cell count up and avoid a blood transfusion because that will make transplant even more challenging. 

The benefit concert put on by GROUPLOVE and fans raised close to $23,000. It is amazing to be part of such a giving community!  The funds are set aside to help when it is transplant time.  More on those options in another post. 

Overall, we are feeling very positive and hopeful about the future!  This wouldn't be true without all of your support.  We are grateful.  Love and blessings to you all.

Friday, February 6, 2015

Harvoni / Hepatitis C

John has been taking the new Hepatitis C treatment, Harvoni, for one month.  The only side effect he has experienced is an occasional mild headache.  Managing this drug while on dialysis has been a bit confusing, as it is new territory for all involved--both John and the medical professionals.  HCV is a blood disease that affects the liver, so the prescribing doctor and manager of this treatment is in the Liver Center at BIDMC in Boston.  This medication is new, and they focus on the liver, which makes the complication of no kidney function and artificial filtration through dialysis a bit of a mystery to them.While taking Harvoni, blood work is done to monitor several variables.  One of them is kidney function.This measurement is horrifically bad for John.  This is not surprising, as he has no kidney function at all--but we had trouble communicating this to the liver center.  It's not as if he would lose any kidney function.  HE HAS NONE. They wanted him to stop taking the medication!

After a visit to Boston this week and some 'big picture' advice from our local nephrologist, we do have a plan of action. I have mentioned him before, but I don't know what we would do without this nephrologist.  He is brilliant.  John will continue to take the Harvoni.

The best news this week:  the blood work indicating how much of the HCV is active came back today.  The viral level is down to a trace:  barely detectable.  The medication is working!!

Happy weekend everyone!  Love to all!

Sunday, February 1, 2015


You know how when you listen to Grouplove you get the idea that the fantastic energy you feel comes not only from the notes being played but also the people playing it?  That somehow the sincerity, playfulness and intensity translates--even into the recorded version? At a Grouplove live show, that feeling is 10-fold!

We travelled to LA to attend the Grouplove benefit show for John last weekend. Other family members went for the weekend as well, and we got to spend time with Christian and Hannah outside of a concert venue. So many people came together to make this happen--all of Grouplove: Christian, Hannah, Ryan, Andrew, Dan and their manager Nicky; the Troubador, John's family, my mom who came to Connecticut from Wisconsin to take care of our kids and the house, and all those incredible Grouplove fans!

The show was created to raise money for the John Toomey Kidney Fund. The feeling of community and support is equally sustaining--so grateful to be a part of it.

Here are a few of my photos from the evening, better shots are coming from beautiful photographer Anna Lee.

Sunday, January 11, 2015

Many appointments

Dialysis has been fine.  We blew an electrical fuse one day last week and had to learn how to do an 'emergency manual rinseback' with the machine off.  It was fairly dramatic. We also did bloodwork and sent that out to check levels that can vary due to the dialysis process.  Anemia is creeping up again, so we are waiting to up his dosage of Epogen that should help with energy levels.

More on Harvoni: click here to read an article from this week about the deal made between the maker of the drug and our insurance company.  We were very lucky with that timing.

For those of you who have ever wondered what a pill that costs $1,125.00 might look like, here you are:

This week brought many appointments.  Here are the basic updates:
1/5 and 1/9-Cardiology

Overall, everything is fine.  He continues to be in sinus rhythm, and his heart rate is a bit high.  The cardiologist heard a strange aortic valve sound, which is likely from the fistula in place for dialysis, but he ordered an echocardiogram for Friday to be sure. Waiting for reults on the echo.

1/6:  Physical Therapy and Podiatrist
The tendonitis is healing well.  Only a few more PT appointments, hopefully that painful injury will resolve.

1/7:  The Liver Center in Boston
John went to Boston to pick up the Harvoni to treat the HCV.  This is the expensive new treatment that will likely cure the disease.  He took his first pill last night!

1/8:  MOHS surgery
The most painful appointment of the week was the removal of skin cancer on his left hand.  He is very sore, and can't take anything for pain because of his liver disease.  He puts his needles in for dialysis with his left hand, so he needs to use it. 

Sunday, January 4, 2015

Fantastic New Year Update

On December 31, 2014 at 4:30pm, we got word that John was APPROVED for the HVC medication by our medical insurance company.  The approval covers Harvoni, the newly approved combo pill used to treat hep C.  This will be 12 weeks of treatment, which will potentially cure John of the virus.

This is some awesome news.

John will be the only patient (anywhere ever) to use this medication while on dialysis, so it will certainly take some tweaking and monitoring to get the dosage correct.  Also not sure about side effects and the potential need for a second course of treatment...but we'll handle those if they come up.

We are thrilled to be starting 2015 with this news!  Feeling lighter and even more hopeful...

Some details on Harvoni:

Much love to you all.  xo