Anniverary of the first transplant

3 years ago today was Laura’s 1st dbl lung transplant. At this point on that day we had no idea what we were in for. We did know that we were very fortunate to have a donor, the best surgical team in the world and an extremely supportive network of friends and family to support us.

We did send a note to the original donor family. We have not heard from them but cannot thank them enough for their selfless donation at was a difficult time.

We now have multiple lungaversaries to celebrate. As for this adventure we have had a few weeks of check-ups and appointments. In regards to lung function, Laura is at 100%, #CRUSHINGIT!. As always she has be very diligent in her workouts and in all the tasks required to strengthen the new lungs.

The infections are still an issue. We should have results of the bronch this week. Hopefully the mold that was growing out on a suture has died with the months of Ampho. If it is still active, she will continue on the Ampho for another month and we will retest in May.

There were a few more treats in this last visit. The staph infection has come back as has the pseudomonas. There are treatments for both, but both take a great deal out of Laura. The breathing treatments for all three take hours each morning and evening. The side effects are tough as well.

In general all is well. All of the anti-rejection meds are still at very high levels and thus we are not that active. Large groups and small spaces are still to be avoided. Hopefully as we gain control over these current infections and the flu season passes us by the doctors will decrease the levels and Laura can return to her regular routine.

Thank you for the support.

Cheers,

The Z’s

Lost of appointments

It has been a month since arriving at home and all is moving forward in a positive direction.  As we start to exit flu season and the dosages of the anti-rejection meds begin to taper Laura will be able to do more outside our home.  In the meantime the inhome cooking lessons are in full force.  On this occassion everyone making really good home made pizza.

Some work to do on the shaping of the dough.

The past few weeks have been filled with appointments ranging from a minor procedure, check up, consultations and a bronch.

In a prior post I discussed Laura having some liquid in the lung cavity.  Last week they drained that liquid without any difficulty or issue.  A simple outpatience procedure that took less than 30 minutes once they started.  The liquid that was drawn was clear and after testing showed no signs of any infections or other issues.  Great news.

We also completed the monthly check up which was positive.  Laura's FEV1 was at 104% of projected and all other number were trending upward and positive.  These numbers are a direct reflection on the effort that she is putting into her exercise regiment. 

The final procedure was the bronch. The last bronch showed signs of mold on the sutures, unfortunately after a month of treatment the mold was still there.  This means that Laura will continue to do the ampho treatments for 2+ hours a day.  Ugh. She was able to cycle off of other treatments so overall time hooked to a machine will diminish. Hopefully after another month of treatments this too will pass.

Thank you again for all the well wishes and thoughts.  

Cheers

Great Progress

The new year has started off with a very busy couple of weeks.  Laura has had two weeks of almost back to back daily appointments.  These appointments ranged from anything from daily labs to a CT scan, pulmonary tests and another bronch this week.  A grueling couple of weeks.  The outcome of all those test was pretty positive. 

In the past I have discussed the FEV1 test which measures the volume of lung capacity.  The measure is based on the "expected percentage".  Last week Laura had her 2nd test since the transplant and crushed it at 107%.  The attending tech was shocked.  A really great number that is a direct reflection of her determination.  Walking the streets of SF, from the top of Russian Hill to the Top of Coit Tower has paid off.

In a December xray they found a build up of what was possibly water in the lung cavity.  After a recent ct scan, the fluid has partially diminished but appears to be a smaller collection of blood.  In the coming weeks Laura will go into to radiology and they will remove that fluid.  No one seems to be overly worried and rushing to make any appointments which is always a good sign.

The team did complete a bronch this week.  This is one of the most significant test because it can identify infections, stages of rejection and numerous other issues.  The results this week were mostly good, however they did find mold growing. The mold was actually growing on a sugar based wire that poked through.  Some of the wires that were used to close the chest plate and close her up are meant to dissolve and this one poked through.  Due to the fact that it is a sugar based wire mold grew out on it.  They will continue her on the Ampho drug a while longer to treat this.  

The Ampho treatment is 2 hours a day of inhailed medication. This is just one of the many treatments that must happen daily.  For those reading this as you approach you first transplant or are about to leave after your first transplant, set your expectation that you have hours of treatments daily.  Typically in the morning and the evening.  It may seem daunting but you will develop a rhythm.  It does limit your time to do anything else so just keep that in mind.

Laura is working to manage her blood sugar as it has been a bit more erratic. Blood sugars, blood pressure, kidney functions and other levels are consistently  being monitored and tweaked.  As she is on so many drugs there is balancing act that is always in play between her medication and how her body processes those medications. 

With all that having happened the doctors gave Laura the green light to go home! After almost 5 months out of the house Laura is now home.  Everyone is very very excited  Bear, our tiny King Charles Cav first saw Laura and started to growl but after smelling her went absolutely crazy.  Running in circles between her legs, jumping up and down.  So excited to see her again after such a long period of time.

Thank you all for everything.  It was a long haul for everyone.  Everyone was emotionally invested and there were some trying times.  The road ahead will have issues as the second transplant is always more complicated than the first but we know we have the support needed to push through.

I will continue to provide updates.  We are starting the process on establishing a non-profit and will be sure to share the details as they happen. Thank you again.  We could not have made it through this without #TeamLaura.

Cheers to all in the New Year!

Love,

The Zs