Movin on Up

A quick late update.  After a day of testing we moved up again on the list. 

Laura did the walking test and spirometry and we do not know the exact numbers of those tests the fact that we now know we have the number 57 means they did decline.

At 57 we are in the mix for a donor.  It now becomes a matter of time.

Cheers,
Kevin

Progress?

Today was a day that in all was one of progress but in a declining manner.

In the morning one of Laura's team of doctors noticed, and was alarmed by, the difficulty she was showing when she ate, went to the restroom or simply moved. After asking is this normal and she said yes, he had asked for another string of test to see if they could understand WTF was going on.

There was then some answers as well as more questions.  It appeared that she did not have a fungus, common in CF patience, and was most likely combination of chronic rejection and pneumonia. Another ultra-sound did show a DVT (deep vein thrombosis = blood clot) in her calf.  She is now on blood thinners to treat this.  This was much better then the pulmonary embolism that could have been.

Another result of all of this was her being place on high flow oxygen.  This was new to us.  This is a machine that warms the air, humidifies it and them runs it through a hose that is 3/8+ wide. Significantly wider than a normal cannula.  This seems to be helping. Eating, resting and simple movements do not cause major coughing attacks.

Given all of these issues, we were told that they placed Laura higher on the list.  The algorithm is not shared and the doctors don't really understand it. The larger the number the higher you are.  We stated at 41 yesterday and are now at 46.  Progress? Yes.

We will be at at Chateau Parnassus (UCSF) until next week.  If we can stabilize functions then we should be able to go home on IV antibiotics.  If not we will continue to figure out how we can slow the progression.

For those reading this that are going through this process at UCSF for the first time, the team is AWESOME.  They are the best of the best.  Our confidence in them has never wavered.  We are all participating in the most complicated transplant done.  It is crazy to think that a heart transplant is easier than a lung transplant.  Be assured your team is doing everything possible ALL of the time, 24/7.

To our friends and family.  Thank you for the cards, comments, texts...etc.  They do help, they mean the world to us.

We love you all.

Cheers,

The Z's

We Made the List! Again

It was August 16, 2015 that we first made the list for a lung transplant.  Today, Laura was placed back on the list for re-transplant.

The first journey allowed for a slow decline that enabled us to really prepare for what it meant to have a double lung transplant.  The last 80 days have not prepared us.  We know it HAS to be done but the speed at which this all changed is still stunning but we are now in the midst of it.  We will start looking to rent a place, get all the details in order so that when the call comes we are ready.

As for the events of today. Today's bronch showed lots of issues, as expected.  The Dr did say it wasn't terrible, so we will take that as good.  The fact that there was issues lead to three IV antibiotic drips and a new drip for fungus (not uncommon in CF patients).   This will go on for multiple days.  Hopefully we will see some beginning changes in the next 24 hours. 

Laura will remain in the hospital until early next week.  If the IVs are working she could go home on IV antibiotics to continue the treatments. We will just wait.

Long day, short post.

Thanks for all the love and support.

The Z's

A day of testing!

First off, thank you all for the amazing thoughts, actions, prayers... we accept it all with massive appreciation.  It really does make a difference.

Today we had appointments with our normal transplant team as well as a meeting with the transplant surgical team. 

The meeting with the surgeon was a review of Laura's medical history since the first transplant.  This is the final step to hopefully being on the list.  Since Laura was a stellar patient in the first go around the doctors saw no reason that she should not be placed on the list.  Hopefully by weeks end we will be back on the list for re-transplant.

The first meeting with the transplant team discussed her current condition and the continued drop in lung function.  Today she was at 26%, a 4% drop in less than two weeks.  This is very concerning because she needs to be stable to receive a transplant.  After another CT scan today showed pictures that were not good, they admitted Laura into UCSF.  Tonight will be a sleepless night for her as they start her on new IV antibiotics to address the current lung infection and try to control the continued decline.

Tomorrow will entail another Bronchoscopy and biopsies of the nodules that they saw in the scan.  Her last biopsy showed pseudomonas and they have been treating her for that but it is obviously not effective enough.

As we learn more we will keep you informed. 

Thank you again for all the well wishes.

Cheers,

The Z's

A surprise happening

I have said this before but it really can't be reiterated enough.  We have the most amazing support network.  NOTHING is too much to ask and when we don't ask people take it upon themselves to do amazing things.

Here is the image and link to retail store for #teamlaura. A friend new we had discussed starting a foundation to help other transplant patients that are not as fortunate as we are.  They went on their own to design t-shirts for all sizes and sell them to raise money. AMAZING! 

We can't thank them enough.  We are excited to help other as they move through their journeys.

Cheers,

The Z's

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