We're Back!

It has been some time since we last made a post.  The last post was Laura’s first Lungaversary in March of ’17 and that seems like a long time ago.  We celebrated year number two a few months ago and all has been very good until recently.

The backstory. In January Laura’s lung function decreased a little bit but was still at incredible levels. Since then she spent time being very active, snow skiing and paddle boarding in Tahoe with no issues.

At her June checkup, her Lung function was at 90% and her doctors were concerned with the decrease from her previous levels.  At this point we started testing to identify the cause(s) of that decrease. In August, the number had decreased to 56% and it was apparent that something was very wrong.  Spending time at elevation at Lake Tahoe was not a significant problem in June and July but when back in Tahoe for Labor Day weekend and she had to have oxygen 24/7 and was not able to be active.

One week later while at a checkup we found out her lung capacity was at 30%.  At this point she were admitted in to UCSF and placed on 24/7 oxygen.  Here resting oxygen saturation levels were below 90 without any supplemental air. The doctors were very concerned.

The doctors have been trying to understand what was going on for the past couple of months.  Was it an infection, chronic rejection, acute rejection a combination of these or something else?  Two weeks ago, while in the hospital we were told that it was chronic rejection.  Acute rejection has the possibility of being treated and possibilities of either maintaining or regaining lost lung function.  Chronic rejection means that the lungs are failing and there is no cure.

Over the past 4 weeks we have been doing a procedure call Photopheresis two times a week.  The short, no clinical, description is that twice a week Laura has a significant amount of her blood removed and that blood is chemical treated, irradiated with light and then placed back into her system. All in hopes of the body not rejecting the lungs. It is a 4-hour+ process which takes its toll.

Photopheresis was the only possible treatment for rejection.  The goal was not to reverse the decline, that is not possible, but to diminish the rate at which she is declining.  Given the results thus far it does not appear to have the desired effect.

All of that coupled with a blood transfusion and dozens of other tests brings us up to date on the past 4 weeks or so.

On Tuesday we will meet with the transplant surgical team.  This meeting coupled with some signatures will be the last steps toward placement on the list for re-transplant.  It is not what we expected and if ask in April or May was this in our minds we would have thought nothing is further away. 

The decline has been brutal. Her mobility is very limited and will be in a wheelchair going forward. The pace at which this has happened and to the degree has been tough.  Last time we had years of a gradual decline and that time allowed us to mentally prepare, this has come as a shock.  Based on her quality of life and the difficulty to breath, we know now need to be on the list.

For some this is all new news. I apologize for not making in more personal with a call or email. For those who have known, thank you for all the support.  As I have said before, we would never have made it through the first time without our tribe and you are all loved and appreciated. 

As news happens I will keep the blog updated.

Cheers,

The Z’s