5th week, more progress and lots of walking

Another busy week of appointments in and out of the hospital but I am happy to say that Laura continues to progress.

Last week was a tipping point. Over a 5 day period the swelling decreased dramatically. She was dropping 5lbs a day in water weight for multiple days in a row. The multiple daily walks (uphill) as well as the Lasix made the difference. They took her off the Lasix because of the stress it places on the Kidneys. Her Kidney numbers are elevated but with increased fluids and continued walking the numbers should come back to normal ranges.

The days are still consumed with apts and treatments at the flat. Once the Ampho is finished (3 more weeks) that will open up 2 hours a day. Multiple daily doctors apts will also free up massive amounts of time.

We did have some check ups and for the most part all went well. The notable news is that her FEV1 lung function is up to 85%. The technician made her do the test 17 times because early on she had an FEV1 of 90%. I think it is obvious that after 10 times it would be hard to replicate. Not sure the 17th try was going to nail it. Frustrating but they mean well.

Another bronchoscopy was on the fun list this week. To make it even better the anesthesia did not work and Laura was awake for most of it. This time they did take a small biopsy to make sure everything there were no signs of rejection. The results are all good.

There have been moments of normalcy this week. They are few and far between but they are glimmers of what we hope is to come.

Tonight we went for a long walk and had a conversation throughout. We found a hidden gem of Golden Gate Park, The Shakespeare Garden that neither of us knew about. Lining the edges of the garden were memorial benches, we read ever memorial note on every bench, thankful that we were able to do so. After we went out to dinner. Then evening was spectacular!

Cheers,

A shared story

I thought I would share a story that blows my mind about how our journey has reached far beyond anything we could have ever imagined.

Laura was having a conversation with a close friend about one of her friends that lives outside the BayArea.  At a dinner party this week the friend in outside the BayArea was telling another person about how well Laura was doing.  Without mentioning Laura's name another person who did not know the other two interjected herself and asked if they were talking about Laura Zellmer.  She had been given Laura's name from a friend in Texas!  The friend in Texas did not know Laura or any direct friends but had been told about her via an email or a prayer chain.

Thousands of people have watch the documentary Breathe in Life has hand thousands of people watch it.   The Blog has been read over 25,000 times and who know how many people have read the updates on Facebook.   It is truly amazing.  

We have spoken with new friends that are going through a similar journey, we have heard from new friends that have gone through this part of the journey and have the lives back. And we have had great conversations with our old friends about how we will be able to do more together again.

Again this could not have happened without you all.  We live in a small town where most people know too much about each other. ;) In the case we would not have it any other way.  

Today at coffee I was introduced to a women who did not know me but knew our story.  Sort of a weird experience when someone you do not know can ask questions about your life.  In the end it is great and the genuine caring is meaningful.

FYI - +Porsche if you want in on this love, feel free!

Thank you again for the support it really is great.  We would not be doing as well without you all.

Love the 

Z's

What a difference 4 days makes

Since leaving the hospital the wind has been at our back.  Laura has been shedding water weight at the clip of 5 lbs per day for three days in a row.  Absolutely incredible. The decrease is swelling has changed everything. 

The pain has diminished and her mobility is great.  Out in the neighborhood daily walking farther and faster each day.  Today she climbed Belvedere St from Bullah to 17th. 

Her appetite is back for the first time in years.  She has cravings and food sounds and tastes great.  Due the effort that her body had to put into breathing eating was a significant task. To supplement her calories she had to have a G-Tube or gastrostomy tube set years ago. Lots of issue accompany the daily tube feeds and the tube itself can cause rashes and be uncomfortable. The doctors have said in the coming months they will be able to remove the tube from her abdomen.  

As she continues to eat and exercise her numbers are going in the right direction.  Sodium and Iron are improving and her Kidney numbers should improve now that she is off the diuretic. 

As far as pain goes, there still is some pain as expected the Tylenol and Tramadol are effective in minimizing the discomfort.  For the most part the pain is no limited her actions.

We are almost half way through the amphotericin treatment.  This is the treatment for antifungal growth in the lungs.  The treatment is vaporized and takes close to an hour twice a day.  Given that there are three vaporized treatments her throat is raw and sore.  This is a short term issue that will go away soon but still scratchy and uncomfortable.

Thanks to the San Diego crew that flew up for a quick surprise visit.  Lots of effort for a quick visit but well worth it. She had no idea it was happening.

The food is awesome. Thank you all. We are very very fortunate to have so many great friends to help.

Cheers!

Busy week with a tune up

Tune up, it is the coming term used in the hospital when you are readmitted after a recent departure. We found this out on Tuesday when Laura was readmitted.

Over the weekend Laura was not improving and after labs on Monday it was found that her iron, sodium and red blood count were are going in the wrong direction.  When coupled with the vomiting and inability to get nutrients into the system if health begins to spiral downward. That was the impetus for the readmitted. 

On Tuesday they started IVs for iron and sodium as well as did a transfusion.  The transfusion was done to help increase the blood count ASAP but done with caution.  The concern was focused on the proteins in the blood that the immune system could identify and as foreign and then kick start her immune system.  This path of treatment has gone very well and you could see the difference within 24 hours.  Correct these issues will also help the swelling and other issues subside in the coming days and weeks.

Laura has had pain in her arms while having her blood pressure check and to be safe the doctors had started ultrasounds to check for blood clots.  They have not found any in her arms and legs over the past three weeks but they did find one in her neck.  They have continued treatment of IV heparin to thin the blood and hopefully prevent any issues.  They will continue to monitor over the next few days prior to making a final decision on next steps. They may chose to a program of heparin shots at home for a extended period of time.  This is a VERY painful injection that Laura would have to do on a daily basis.  

The past two days have been better.  The iron, sodium and transfusion has made the difference that was hoped for.  Yesterday Laura was eating solid food and walking the floor. Today she walked the floor pushing the IV tree by herself and did so at a great pace. Hopefully after a few more days on IV we will be on the right track.

Hope you all enjoy your weekend.

Thank you for the kind cards and notes.

The Zs'

2 weeks from transplant

It is hard to image that just two weeks ago Laura went through a life changing experience. Two weeks later we are adjusting to our new lives and we have started a new journey.  

As we entered into the transplant process we were told that you are trading one disease for another. In the case of CF the trade is welcomed compared to the alternative.  The complexities of the new disease especially in the first weeks are tough.  For those who read the blog and have CF or are on the list prepare yourself.  We understood it would be hard but then again we thought life was hard already.  Air tanks, air compressors, wheelchairs, pills, needles and inhalers didn't make the old life that easy.

The first weeks of the journey are harder due to the edema, pain and nausea.  I am sure in ALL of the possible side effects they were each mentioned dozens of times but after the first few paragraphs of grave side effects we ignored them and tried to stay optimistic.  Optimism is what got us this far.  

Each pain causes the other to seem worse or has another side effect and all make sleep near impossible.  The first 60 days are full of new inhaled meds that require you to be alone in a room for hours since they are toxic to anyone healthy. (We'll see how well the iPad works in 60 days.) 

The funny thing about all of this. Is that there is no conversation about breathing. Like the rest of us it just happens.  Of course there are a number of exercises that Laura has to do to get the lungs into shape but none of our conversations are the lack of air.  So even though this part is hard we know the end result will be worth the effort.

As for effort of others we can not thank you all enough for everything that you have done. We appreciate the food and Munchery deliveries and cards.  A friend came over to the new place with bleach and a tooth brush to scrub the old window sills to make sure there was no mold. Who dies that? Amazing! We know that this support is not the norm and that we are blessed to have such a great group of friends that regardless of their location on the planet are making their thoughts and wishes known. 

A number of you in SF have offered to make meals. Thank you, we happily accept.  I am working on responding and creating a calendar.

More to come.  Thanks again for the encouragement it really does help.

Love,

The Zs

First Days Out

As good as it is not to be in the hospital we are now realizing how good our team was. While in the hospital Laura's pain was minimal as was the nausea and swelling.  Those are fond memories and are no longer the case.  

To say Laura is swollen is an understatement. The fact that she is so swollen and the skin is so tight is the cause of significant pain.  The doctors have prescribed a diuretic called Lasix that will hopefully start working soon. This should increase the amount of fluid that exits her body. If this edema continues and is not showing significant signs of diminishing by Tuesday they will readmit her and insert new chest tubes (smaller than before) to relieve the fluid.  

This morning was our first day of out patient doctor appointments. Today we had a CT scan which was the fastest appointment EVER as well as appointments with the lung function team and the pulmonologist.  The pulmonologist assisted with the change in meds to decrease the edema and was super supportive of where we are in the recovery process. Given the difficulty over the past 3 days it was good to have positive reinforcement.

We did receive some really exciting news today.  2 weeks ago today Laura had a FEV1 of 22%. The FEV1 is the measure of volume exhaled during the first second of forced expiratory maneuver started from the level of total lung capacity.  In short, deep breath and blow hard.  More technical information linked here.   Today in Spirometry her FEV1 was 72%. 72%! Amazing and it should continue to increase over the next 3-6 months as she starts to do more.  

Today we had our first home nurse visit to discuss some of the more complex medications that must be reconstituted.  Again, the UCSF team was excellent and made the learning simple.  Thank you again.

Thanks for the help from all of our SF friends.  Good to be back in the city.  First parking ticket already happened.  Totally blanked on street cleaning - #%$@ !  After 12 years in the city and 11+ in the burbs you forget the basics.  

Cheers,

The Z's

We are out!!

We are out!!..   

Amazing that 9 days after the surgery Laura is out of the hospital.   

Progress has been mostly good with some of the expected ups and downs.  With no chest tubes the pain should diminish in the coming days but she will still have to learn to manage the pain from the incision and broken chest plate. 

It will take a few days to get situated and overcome some of the fears and concerns about being out but everyone is excited to be out.  I am sure we will see some of you in the neighborhood.

Thank you all for the great support.  

Two less tubes

Good evening all,

A pretty good end to a full week post transplant.  It is amazing to think that at this time last week Laura was knocked out after an almost 7 hour surgery.  Today we took a couple of walks and chatted throughout.  Thanks again to the amazing team at UCSF.

As far as milestones go today was not only the 1 week mark but the removal of two more tubes. The first was the epidural, if you ask Laura that may be the only tube that will be missed.  The second was a beast of a tube and the 3rd of 4 chest tubes.  

Watching them remove this was shocking.  The tube is 3/8s of an inch or so and 14 inches long.  When they removed it they just kept pulling.  She had 4 of these in her! They had said the pain was not from the 30"+ incision that cuts through 4 layers of skin and requires your chest plate to be sawed open but it's the 4'+ of chest tubes stuffed into your chest. AHHH

We are now down to 1 chest tube and her port is access for antibiotics and pain meds. They did say today that they would remove her port in the future.  

The removal of the chest tube does minimize some pain but the removal of the epidural counter acts that.  The new pain meds are doing a good job keeping Laura at a 3/10 or so most of the time.  It can spike but they are working to minimize that.

Lots of walking at a faster clip this weekend.  Soon it will be in the real world up a SF hill.

We did have another training session today and learn more about what life will be like going  forward.   Given Laura's diligence prior most of this is not a shock or even out of our everyday practice. There are however some BIG loses which we knew were coming.  Sushi and Oyster are gone :( and rare steak - :( :(   

Next steps.  The doctors are very happy with her progress and are ready to boot her once the last tube is removed.  Drainage has improved, down to 300ml a day vs 500ml. We want to be at or below 150 for a 24 hr period.  Given the path, we expected to discharged later this week.  Very exciting!

A few of you have asked if you could send flowers and if so where.  We had a conversation today with the doctors and fresh cut flowers did not make the cut because of the pollen and other airborne agitants.  In doing research there a few charities that take either new or gently used flowers to others. Flower Angels, linked here, is one of those charities. 

Thank you all for the well wishes, support, references to house, (we are close).  We have met others in the hospital that are also in for serious procedure, lungs, hearts, mechanical hearts (CRAZY) and none have the support that we do.  Completely amazing.   

We love you all. 

Cheers

Here comes the pain

All in all everything is going well.  Laura is walking everyday for a total of 1/2 mile or more. She is eating solid food and beginning to enjoy it.  Prior to the transplant eating was a chore and she had no appetite or cravings.  Both are coming back.

She is having some issues with fluid drainage and as a result her legs and feet are swollen.  They have given her a diuretic to help increase the flow but that has not worked fast enough so they are moving onto a new drug.  The issue with the new drug will be that she has to be off the epidural.

After consulting with the doctors, they have diminished here dosage for the evening and will then change her pain meds to either Oxy or Tramadore.  The concern is not about the pain from the 30" incision but the pain from the 2 remaining chest tubes.   They want to make sure the pain is managed not only because of the pain itself and discomfort but it also effects the depth of your breathing.  If she takes shallow breathes it could lead to pneumonia. 

The focus is now on drainage so the chest tubes can be removed and she be released.

Cheers,