2018 started out as planned and then took a turn. We would not have been able to make it to this New Year without you all. The journey this far has not been easy and it will still have many ups and downs but we know that we have the most amazing group of family and friends to support us and each other.
The support goes so much further. It is amazing to hear stories of friends or friends or see some random person wearing the #teamlaura t-shirt. I have people following the blog from 20+ countries. Incredible. Facebook also just told me that our posts have over 8,000 loves. That's alot of love.
We cannot thank you all enough for your thoughts, prayers, food (funny that almost ever dish dropped off had a bottle of something) and generousity. You have given us your time, hearts and strength. It made all of the difference.
We hope you all have a safe and wonderful New Year with your friends and family. Enjoy the time together. Make a memory.
Cheers!!!!
Love
The Z's
Monday, December 31, 2018
Wednesday, December 26, 2018
A long overdue update
Happy Holidays!
We hope everyone is having a wonderful holiday season. For the first time ever we did not travel for Christmas. Not having to deal with traffic was a welcomed change. We have spent the week in SF, enjoying the spirit of the city. We cannot be with the masses but it is fun to see the little alleys of Russian Hill and look at the decorations throughout the neighborhood.
Apologies for the delayed post, the past couple weeks have been crazy, ending with labs on Christmas Eve, which was an adventure. Laura has had a number of tests and we have been receiving the results and updates in a rolling fashion. As we have discussed in previous posts, it appears the second transplant will be more complicated and have more bumps than the first.
After the last bronch and labs they concluded that Laura has a new Staph infection as well as a new fungus in the lungs. They have prescribed a oral antibiotic (luckily not IV) to treat the Staph and we will see how well that works in the next couple of weeks.
As a standard post transplant procedure Laura does Ampho twice a day as a preventative measure against any fungus. This is a dry medication that we dissolve with sterile water and the dilute with more sterile water into a syringe. They will continue her on that treatment as well as add a new oral medication. No one seems to be too alarmed about either of these infections but it does raise your nerves each time something new arises. A bit unsettling.
The finals test results that we received were in regards to antibodies. Antibodies have to do with Laura's B cells attacking the lungs. This was far more concerning than the staph and fungus. There is a DSA blood test (donor-specific antibodies) to identify this. The doctor's say that this does happen and they can get it back under control by increasing the Prograf. Increasing the Prograf then decreases Laura's already low immune system, increasing the risk of more infections. Always a balancing act. This will be followed closely in the coming weeks. Having to absorb all this right before the holiday led to a delayed post.
Last week they did not do the procedure to drain the fluid in the lung cavity. It was decided to wait until after the new year to see what happens. In general she has had a much easier time managing the edema than after the first transplant. Hopefully the fluid worked itself out of the system and if not they will address this in the coming weeks.
As for the day to day, we are walking and working out daily. Laura can feel the infections in the lungs but they are not slowing her down. Walking over Russian Hill or up Telegraph are common, charging hard.
We hope everyone has a wonderful new year. Wish we could be with you all. We will raise a glass to you all as wonderful friends and family.
CHEERS!
We hope everyone is having a wonderful holiday season. For the first time ever we did not travel for Christmas. Not having to deal with traffic was a welcomed change. We have spent the week in SF, enjoying the spirit of the city. We cannot be with the masses but it is fun to see the little alleys of Russian Hill and look at the decorations throughout the neighborhood.
Apologies for the delayed post, the past couple weeks have been crazy, ending with labs on Christmas Eve, which was an adventure. Laura has had a number of tests and we have been receiving the results and updates in a rolling fashion. As we have discussed in previous posts, it appears the second transplant will be more complicated and have more bumps than the first.
After the last bronch and labs they concluded that Laura has a new Staph infection as well as a new fungus in the lungs. They have prescribed a oral antibiotic (luckily not IV) to treat the Staph and we will see how well that works in the next couple of weeks.
As a standard post transplant procedure Laura does Ampho twice a day as a preventative measure against any fungus. This is a dry medication that we dissolve with sterile water and the dilute with more sterile water into a syringe. They will continue her on that treatment as well as add a new oral medication. No one seems to be too alarmed about either of these infections but it does raise your nerves each time something new arises. A bit unsettling.
The finals test results that we received were in regards to antibodies. Antibodies have to do with Laura's B cells attacking the lungs. This was far more concerning than the staph and fungus. There is a DSA blood test (donor-specific antibodies) to identify this. The doctor's say that this does happen and they can get it back under control by increasing the Prograf. Increasing the Prograf then decreases Laura's already low immune system, increasing the risk of more infections. Always a balancing act. This will be followed closely in the coming weeks. Having to absorb all this right before the holiday led to a delayed post.
Last week they did not do the procedure to drain the fluid in the lung cavity. It was decided to wait until after the new year to see what happens. In general she has had a much easier time managing the edema than after the first transplant. Hopefully the fluid worked itself out of the system and if not they will address this in the coming weeks.
As for the day to day, we are walking and working out daily. Laura can feel the infections in the lungs but they are not slowing her down. Walking over Russian Hill or up Telegraph are common, charging hard.
We hope everyone has a wonderful new year. Wish we could be with you all. We will raise a glass to you all as wonderful friends and family.
CHEERS!
Saturday, December 15, 2018
A tardy update
I hope everyone is embracing the holiday spirit.
This was a big week of testing with two significant test taking place. The first was the FEV1 (this is the test that measures the capacity of the lungs). Laura's completed the test at 82%, which is very very good for the first test. As she build strength, the lungs will increase too and this number will increase. Needless to say it is significantly better than 17%.
Laura also had a bronch and a CT scan this week. The bronch was negative and showed nothing of interest, which is good. The CT scan did show a build up of fluid in the space between the lungs and lung cavity. Fluid builds up and is usually dispersed naturally. In this case it is not going away so we will have a procedure on Thursday to drain the remaining fluid ( a few hundred milliliters). This will be an outpatient procedure and should only take a few hours.
All else is going well. She is building strength and continuing to increase the distance she is walking.
Thank you all for the support, meals and great holiday cards.
Happy Holidays
Cheers,
The Z's
This was a big week of testing with two significant test taking place. The first was the FEV1 (this is the test that measures the capacity of the lungs). Laura's completed the test at 82%, which is very very good for the first test. As she build strength, the lungs will increase too and this number will increase. Needless to say it is significantly better than 17%.
Laura also had a bronch and a CT scan this week. The bronch was negative and showed nothing of interest, which is good. The CT scan did show a build up of fluid in the space between the lungs and lung cavity. Fluid builds up and is usually dispersed naturally. In this case it is not going away so we will have a procedure on Thursday to drain the remaining fluid ( a few hundred milliliters). This will be an outpatient procedure and should only take a few hours.
All else is going well. She is building strength and continuing to increase the distance she is walking.
Thank you all for the support, meals and great holiday cards.
Happy Holidays
Cheers,
The Z's
Tuesday, December 11, 2018
Lots of tests
A big week of testing. Today Laura had here first FEV1 test, this is the standard measure for lung capacity, and she blew an 82. A great first number after the transplant. I have not gone back through the blogs to see where she was before but the team was happy with the result.
The blood tests came back all within range and her kidney numbers have come back into a normal range. Given the amount of meds that she is and has been on monitoring and managing the kidney numbers is very important.
As for the exercise, Laura is crushing it. She walked 1.5+ miles yesterday, tackling the streets and hills of Russian Hill and North Beach. With all of the exercise, the edema is well under control and we are approaching the end of any issues.
On the eve of Laura's birthday we actually made it out to eat in SF. We were the first table to be seated (needed to avoid the crowds).
A few things to think about here. This was the first time since early September that Laura ate outside of the hospital or the apt (last 10 days). This was her first time in regular clothing (swelling, pain...etc. all made dressing beyond a hospital gown and sweats too much). A great pre-bday outing to Don Pistos in North Beach.
Tomorrow is a bronch and then some well deserved relaxation.
Cheers!
Friday, December 7, 2018
Progress
It has been a good week. Laura is making lots of progress in her walks and starting to build strength and endurance. She is now up to over a 1/4 mile per walk and is active in the house. This is also has a significant impact on the edema and helps to keep the swelling down. This recover has been a night and day different in that regard.
With the bronch they did find some infection and we will start to treat that immediately. We are still waiting on the specifics but it will be oral antibiotics not IV and she will not be readmitted for this. Hopefully this is just a mild case and will react well to the meds.
The days are still filled with treatments. 2 hours on Ampho (one hour in the morning, one hour in the evening). Plus the other treatments to strengthen her lungs...etc. All the work is paying off and her progress is good. At clinic they were all very pleased with her progress.
There is another bronch next week, on her birthday (the birthday present everyone wants) and normal lab visits in the mornings. After next week I believe the next bronch will be in January.
Thank you again for the cards, calls, texts, comments...etc.
Cheers,
Cheers,
The Z's
Sunday, December 2, 2018
The beginning of the long road to recovery
To start off, Happy Hanukkah to all of our friends and family! As it is a holiday that highlights the light within us that has the ability to guide us. We appreciate all of the thoughts and prayers that have helped to guide us thus far. Chag Sameach from the Z's.
We are in recovery mode and it great but it is not easy. Given that we have been fighting and managing for the last 70+ days in the hospital and another month+ before, there was an illusion that once out we can move on. I know we did not think that but I think there was some unconscious process given what has been overcome things may get easier. It will get easier and we are making progress. It is a different journey than before. Very happy to be on this side of it.
We knew what recover was and actually the edema has been far less severe than last time and over all right on track. The pills are in the dozens, multiple times a day and the treatments are long and draining but Laura is crushing it.
The incisions and the insertion points are all healing well. I think I have figured out how not to have the dressing tape stick to itself. This is like the tape they use on NASCAR when a bumper falls off. Water tight seal immediately. As of today there was very little seepage for any of the wounds.
Exercise is a must. Getting out this weekend in SF was terrific. Laura is battling and getting stronger daily. Little steps up the hills but she does get there. We are up to 100 yards or so, progressing daily.
Building strength is a must and thus eating is critically important. As we are back in our old hood we had a great meal from Trattoria Contadina, a great local favorite on Russian Hill. Couple with ZA Pizza a few nights early we are making a carb comeback.
This week is another week of apts. Laura has another Bronch and the possibility of having many of her sutures removed. The actual incision for the transplant was glued from armpit to armpit so there are no sutures there. AMAZING. The sutures that she had for her chest tubes and drainage are what I am referring to.
All in all progress is going well. Hope you are all preparing for the holidays.
Enjoy!
Thursday, November 29, 2018
Settling In
Soooo good to be out of the hospital. We are fortunate enough to have a great place with a view and to sit and relax and watch the weather last night was nice.
The goal now is to just recovery. We have an apt today for a blood day and have a bronch on Tuesday. Beyond that Laura has no other apts. She does have a number of treatments that she has to do daily that require a few hours. Couple those treatments with 3 walks a day and her dance card is full.
Last journey Laura had terrible edema that required her to go back in. Given that we were in the hospital longer this time post op and she seems to be shedding the water weight appropriately we hope there is no secondary visit.
Some advice for those going through this for the first time, pay attention to how the change the dressings. The IV3000 tape(?) sticks to itself ALL the time. It is an art form. Drainage has been good and with the exception of a once ounce outflow all has been going accordingly. Oozing is ok. Don't panic.
Not the best photo to show it but today in between storms there was a rainbow. Hopefully a sign of more good luck to come.
Tomorrow is a recovery day for Laura. Walks, treatments and rest. Hopefully coupled with some good food through out.
Cheers,
The Z's
The goal now is to just recovery. We have an apt today for a blood day and have a bronch on Tuesday. Beyond that Laura has no other apts. She does have a number of treatments that she has to do daily that require a few hours. Couple those treatments with 3 walks a day and her dance card is full.
Last journey Laura had terrible edema that required her to go back in. Given that we were in the hospital longer this time post op and she seems to be shedding the water weight appropriately we hope there is no secondary visit.
Some advice for those going through this for the first time, pay attention to how the change the dressings. The IV3000 tape(?) sticks to itself ALL the time. It is an art form. Drainage has been good and with the exception of a once ounce outflow all has been going accordingly. Oozing is ok. Don't panic.
Not the best photo to show it but today in between storms there was a rainbow. Hopefully a sign of more good luck to come.
Tomorrow is a recovery day for Laura. Walks, treatments and rest. Hopefully coupled with some good food through out.
Cheers,
The Z's
Tuesday, November 27, 2018
Surprise!
This evening they released Laura from the hospital!
After removing 2 of the 3 tubes yesterday, they removed the final chest tube today and said get out. Given that her edema was good and that her balance and ability to walk were strong they thought it was fine for her to go to the apt.
Leaving the hospital this evening was the first time in over 70 days that she has been out of the hospital. Clean, fresh air was a welcomed change.
We are staying in Russian Hill near our old apt. so ZA Pizza was the homecoming meal of choice. Still a solid pie.
Now that phase 1 is behind us we are on to phase 2, recovery. Building strength and endurance is the goal for the next 6-8 weeks in SF. Short walks multiple times a day is the start and we will work up to longer walks around the city.
Tonight she will work through the new meds. The first time we went through this everyone was a bit overwhelmed by the number of meds, 25+ pills. For those going through this for the first time, it will become second nature. For the care giver, make a copy of the medication sheet and keep it in your purse or wallet. There will be times when you need to reference it and it is best to have it handy.
The routine will likely change a dozen times before we leave as her body recovers and then continue to be optimized going forward. Change is ok. Doses will go up and down, the kidneys will have issues and you will work through them. Don't panic.
Amazing day for all. Thank you again for all the support, emails, txts, cards..etc. Sorry we have not been able to respond quickly but we do read everything and share all the communications.
Cheers!
The Z's
Sunday, November 25, 2018
Continued Progress
Laura is on the mends!
She is continuing to improve daily. Her walks have increased to two laps of 10L (800') multiple times a day. She spends more time sitting now than in the bed. All the rights steps to moving on.
She still has two chest tubes in and a third drainage line from the heart area. They continue to produce less fluid by the hour which is a good step toward release. The goal is to remove all three lines this week. Once that is done she will be set free. As we approach the 70 day mark this, fresh air and day light will be a welcome change.
Once released we will be in SF for another 6-8 weeks. Given the daily appointments we must be in SF and cannot cross the bridge. Thankfully we were finally able to secure housing via friends. Thank you all for the assistance in making that happen. To those friends a huge thanks for allowing this to happen.
As we get the paperwork started for the foundation, housing is a major issue to be addressed. We have been lucky in both occasions to find a solution but it is difficult given the great Bay Area market. Hotels and rentals are expensive. Hopefully we will be able to defer some costs for other CF and lung patients in the future.
We hope everyone had a great holiday. Let's get the kids back to school!
Cheers,
She is continuing to improve daily. Her walks have increased to two laps of 10L (800') multiple times a day. She spends more time sitting now than in the bed. All the rights steps to moving on.
She still has two chest tubes in and a third drainage line from the heart area. They continue to produce less fluid by the hour which is a good step toward release. The goal is to remove all three lines this week. Once that is done she will be set free. As we approach the 70 day mark this, fresh air and day light will be a welcome change.
Once released we will be in SF for another 6-8 weeks. Given the daily appointments we must be in SF and cannot cross the bridge. Thankfully we were finally able to secure housing via friends. Thank you all for the assistance in making that happen. To those friends a huge thanks for allowing this to happen.
As we get the paperwork started for the foundation, housing is a major issue to be addressed. We have been lucky in both occasions to find a solution but it is difficult given the great Bay Area market. Hotels and rentals are expensive. Hopefully we will be able to defer some costs for other CF and lung patients in the future.
We hope everyone had a great holiday. Let's get the kids back to school!
Cheers,
Friday, November 23, 2018
Happy Thanksgiving!
A bit tardy on the holiday greetings but want to wish everyone a Happy Thanksgiving. We hope you had the opportunity to celebrate with friends and family.
The spirit today on the floor was great, everyone was on the same team. All silently acknowledging that no one was where they want to be but supportive of everyone that was there with them. Big smiles, well wishes from staff, guests and patience.
Laura had a stream of family in and out of the hospital today on rotating shifts. Throughout the day we read the cards that have been sent, emails and texts from all of you. Thank you all for the well wishes.
Today was a good day. Laura went for multiple walks. We are still on a walker (need to buy tennis balls) and have the pole trailing throughout that said, she is up to a full lap of the 10th floor, 500' or so and continues to increase the pace with each lap.
She did have a turkey dinner with all the sides. First meat in months! She had no issues eating and actually enjoyed the meal.
Nothing goes without saying. The list that we have this year is long and includes all of you. Impossible to think how we would have made it this far without the tribe. I am not sure how to express our gratitude and I am confident that I will never express it to the full extent.
Though we do not know the donor and their situation we are thankful for their decision to be a donor and acknowledge that this Thanksgiving and holiday season will be tough. If in the future we do meet them or they do know that Laura was the recipient I want them to know how much they mean to us.
Raise a glass to each of you. We hope you all have a fabulous holiday weekend filled with memories. Enjoy the clean air and be safe of the roads.
Cheers!!!!!!
The Z's
Monday, November 19, 2018
Out of ICU...again
Laura is back on the floor! There is always a number of moving parts and the next weeks will be up and down depending on the moment but they did move her onto the floor.
The first days post surgery are active and today was no exception. She is free of all tube minus her port which is still accessed. The feeding tube was removed today as she passed the swallow test! She did get a bit carried away after and drank a small milk and smoothy.
She did walk from the ICU to her room on the floor with out issue. She was aided by the pro walker but that was also due to the fact that she still has three tubes connected to her lungs and heart.
As she settled into her room it was great to have so many nurses, RT's and others come by to cheer her on. The common theme was that we are sooooo excited that you had the re-transplant and can't believe you are already on the floor. You look amazing! I can't believe you had the re-transplant and a washout. OMG! Congratulations! Walking down the hall people are congratulating us at every door. As I came back the floor our past nurses would stop me to chat and learn about what happened.
I cannot image being on 10 at UCSF. As the husband I am obviously invested but today it was evident that I was not the only one. The floor, after 45+ days and a previous transplant, was pulling just as hard. Given their jobs they see his often, to be this invested is amazing!
I/we thank the team everyday but today the congratulations and excitement carried us all. Pretty special.
We have more ups and downs in the weeks ahead but it is great to know we are a tribe working together. #teamlaura is in full force. We are excited to carry that forward with the foundation and continue to enable others to have the support that we have. I over heard a conversation in the elevator about how hard it was to deal with the cost of parking. Food, hotels, travel add up very very quickly. To know we can make a difference is exciting.
Thank you all for the support you have given us. Truly incredible and I can never express our appreciation well enough for you to know.
Cheers and love to all,
The Z;s
The first days post surgery are active and today was no exception. She is free of all tube minus her port which is still accessed. The feeding tube was removed today as she passed the swallow test! She did get a bit carried away after and drank a small milk and smoothy.
She did walk from the ICU to her room on the floor with out issue. She was aided by the pro walker but that was also due to the fact that she still has three tubes connected to her lungs and heart.
As she settled into her room it was great to have so many nurses, RT's and others come by to cheer her on. The common theme was that we are sooooo excited that you had the re-transplant and can't believe you are already on the floor. You look amazing! I can't believe you had the re-transplant and a washout. OMG! Congratulations! Walking down the hall people are congratulating us at every door. As I came back the floor our past nurses would stop me to chat and learn about what happened.
I cannot image being on 10 at UCSF. As the husband I am obviously invested but today it was evident that I was not the only one. The floor, after 45+ days and a previous transplant, was pulling just as hard. Given their jobs they see his often, to be this invested is amazing!
I/we thank the team everyday but today the congratulations and excitement carried us all. Pretty special.
We have more ups and downs in the weeks ahead but it is great to know we are a tribe working together. #teamlaura is in full force. We are excited to carry that forward with the foundation and continue to enable others to have the support that we have. I over heard a conversation in the elevator about how hard it was to deal with the cost of parking. Food, hotels, travel add up very very quickly. To know we can make a difference is exciting.
Thank you all for the support you have given us. Truly incredible and I can never express our appreciation well enough for you to know.
Cheers and love to all,
The Z;s
Sunday, November 18, 2018
Good progress
Today was a good day or progress and the first day of the new normal.
Laura had multiple tubes removed today. The NG tube was pulled, the central line that was connected to her jugular was removed. This was the mainline in that connected the tree of 11 IVs. Here IV into here leg was removed as well. She has her port accessed, an IV into her wrist and her feeding tube in. All else is gone. A stark difference to 48 hours ago.
Laura sleep well and that changed the day. She complete two walks for about 40 yards on her on power (she does use a large walker). She also spent time sitting up in a chair. It is all about waking up the body and moving. This will start to strengthen the muscles and also diminishes the pain.
There was no swallow test today, so they will try again tomorrow. Once she learns how to swallow again (making sure liquids go down the right pipe) she can move onto soft foods. A Vitamix turkey is around the corner.
If she continues on this path we could be back on the main floor by Tuesday. A bit more space, a lot less noise and commotion is appealing.
If we can string a few good days in a row it should make all the difference in attitude, sleep and progress.
Cheers,
Z's
Laura had multiple tubes removed today. The NG tube was pulled, the central line that was connected to her jugular was removed. This was the mainline in that connected the tree of 11 IVs. Here IV into here leg was removed as well. She has her port accessed, an IV into her wrist and her feeding tube in. All else is gone. A stark difference to 48 hours ago.
Laura sleep well and that changed the day. She complete two walks for about 40 yards on her on power (she does use a large walker). She also spent time sitting up in a chair. It is all about waking up the body and moving. This will start to strengthen the muscles and also diminishes the pain.
There was no swallow test today, so they will try again tomorrow. Once she learns how to swallow again (making sure liquids go down the right pipe) she can move onto soft foods. A Vitamix turkey is around the corner.
If she continues on this path we could be back on the main floor by Tuesday. A bit more space, a lot less noise and commotion is appealing.
If we can string a few good days in a row it should make all the difference in attitude, sleep and progress.
Cheers,
Z's
Saturday, November 17, 2018
Tough progress
Laura is making progress but it is a grind. As far as progress went today was a good day. They removed two of the four chest tubes. The front tube are related to air more than drainage and where no longer needed. They also removed the NG tube that was placed in her stomach to assist with the removal of gases and bile.
They did start her back on tube feeds and her body is receiving the nutrients well. Sugars are in line and all seems to be going well on that front. They did the swallow test and she did not pass. The test is to make sure water goes down the right pipe and she does not aspirate. She did not pass today but there are number of reasons why that could happen. She has had multiple tubes down her thought for 4 days. This causes numbness, irritation...etc. She has been out cold or sedated for hours and it does take time for the body to shake that off. They will try again tomorrow. Once she passes she will start eating soft food and then onto more solid food in due time.
They did another bronch today and that came out great. They will do one each day for the first week to make sure the lungs continue to look strong and clean.
She did stand up today and march in place. She moved from the bed to the chair and sat in the chair for 20 mins. The movement helps the pain and stiffness. She is still in pain but the ablation and the meds are working.
A new technique in the transplant process is the addition of ablation to numb the pain. It does not work on all patients but it does appear to have been successful with Laura. This enables her to recover with less medication.
Since last night was such a bad night we kept her up most of the day so that tonight she can get a great night sleep. A sedative and some melatonin should help. She is sleep well now. She was having hallucinations due to other meds. Those were changed and appears to have been the solution because she is now sleep with no issue.
Tomorrow is a big PT day. A walk out of the room. Multiple respiratory therapy sessions at 30-45 min each will help get everything moving.
Thanks to a great day with both teams on 10ICU. We have the best of the best.
Please excuse the grammar and typos - long day.
Cheers to all.
They did start her back on tube feeds and her body is receiving the nutrients well. Sugars are in line and all seems to be going well on that front. They did the swallow test and she did not pass. The test is to make sure water goes down the right pipe and she does not aspirate. She did not pass today but there are number of reasons why that could happen. She has had multiple tubes down her thought for 4 days. This causes numbness, irritation...etc. She has been out cold or sedated for hours and it does take time for the body to shake that off. They will try again tomorrow. Once she passes she will start eating soft food and then onto more solid food in due time.
They did another bronch today and that came out great. They will do one each day for the first week to make sure the lungs continue to look strong and clean.
She did stand up today and march in place. She moved from the bed to the chair and sat in the chair for 20 mins. The movement helps the pain and stiffness. She is still in pain but the ablation and the meds are working.
A new technique in the transplant process is the addition of ablation to numb the pain. It does not work on all patients but it does appear to have been successful with Laura. This enables her to recover with less medication.
Since last night was such a bad night we kept her up most of the day so that tonight she can get a great night sleep. A sedative and some melatonin should help. She is sleep well now. She was having hallucinations due to other meds. Those were changed and appears to have been the solution because she is now sleep with no issue.
Tomorrow is a big PT day. A walk out of the room. Multiple respiratory therapy sessions at 30-45 min each will help get everything moving.
Thanks to a great day with both teams on 10ICU. We have the best of the best.
Please excuse the grammar and typos - long day.
Cheers to all.
Friday, November 16, 2018
All is good
A quick update. Laura had the breathing tube removed earlier today and was then placed on bipap for four hours (a new protocol). She is now on a transition from 5 liters to 0. She is breathing on her own at 100% oxygen saturation. Kidney function is coming back in line as well.
They did have her sit up for 20 minutes with limited to no support. She was able to life her legs and knees while sitting on the side of the bed.
More details to come but we are now onto the next steps of recovery!
Cheers to all.
The Zs
They did have her sit up for 20 minutes with limited to no support. She was able to life her legs and knees while sitting on the side of the bed.
More details to come but we are now onto the next steps of recovery!
Cheers to all.
The Zs
Thursday, November 15, 2018
Wash out
This evening they did a wash out of the lung cavity. Due to the amount of blood and liquid in and around the lung they decided it was best to go back in wash out the area.
They went in across the chest in the same incision that they did the transplant. The surgery took just over 2 hours and the doctors have their expected outcome (their words). Hopefully in the next 24 hours the drainage will stop to the point where they can remove Laura from the ventilator.
At this point she is doing most of the breathing on her own and the ventilator was only there for support and in case they needed to operate today. The breathing tube is extremely uncomfortable and one of Laura's biggest anxieties, so the faster it is removed the better it will be for her.
There is some worry about her kidneys. They have been taxed due to the amount of medication she has been on over the past months. They were elevate a week ago and then went back into normal levels. They are now elevated again. This is not uncommon after a transplant but still something that is being watched. She is being hydrated while on IV and hopefully it is just a matter of the kidneys restarting after the surgery.
Hopefully we have an easy night and have a smooth recover tomorrow.
More to follow.
The Zs
They went in across the chest in the same incision that they did the transplant. The surgery took just over 2 hours and the doctors have their expected outcome (their words). Hopefully in the next 24 hours the drainage will stop to the point where they can remove Laura from the ventilator.
At this point she is doing most of the breathing on her own and the ventilator was only there for support and in case they needed to operate today. The breathing tube is extremely uncomfortable and one of Laura's biggest anxieties, so the faster it is removed the better it will be for her.
There is some worry about her kidneys. They have been taxed due to the amount of medication she has been on over the past months. They were elevate a week ago and then went back into normal levels. They are now elevated again. This is not uncommon after a transplant but still something that is being watched. She is being hydrated while on IV and hopefully it is just a matter of the kidneys restarting after the surgery.
Hopefully we have an easy night and have a smooth recover tomorrow.
More to follow.
The Zs
A tough morning
They have been bringing Laura in and out as her discomfort ebbs and flows. She is alert when awake but it is super frustrating for her as she is still intubated and can not communicate easily.
She wanted to know when she could go home. Like the positive thoughts, even if she is ahead of the plan.
They completed a CT scan early this morning and it did show that there was still a significant amount of blood in her lung cavity. Due to that they are going to operate again this afternoon. We are just waiting the OR. This "wash out" surgery is not uncommon and often happens with the second transplant. The surgery will take a few hours and then she will return back to ICU and recover over night. While in surgery they will do the first post op bronchoscopy (which sucks when awake) while she is under, so that is a win.
More to come after surgery.
She wanted to know when she could go home. Like the positive thoughts, even if she is ahead of the plan.
They completed a CT scan early this morning and it did show that there was still a significant amount of blood in her lung cavity. Due to that they are going to operate again this afternoon. We are just waiting the OR. This "wash out" surgery is not uncommon and often happens with the second transplant. The surgery will take a few hours and then she will return back to ICU and recover over night. While in surgery they will do the first post op bronchoscopy (which sucks when awake) while she is under, so that is a win.
More to come after surgery.
Wednesday, November 14, 2018
New Lungaversery Date
What a day. As I final sit down to take a breath (and have a drink) it is overwhelming to think about the last 24 hours. All this is exaggerated even more by the amazing outpouring from all of you. The emails, comments, txt, vm, photos...etc. that were shared are amazing. Thank you all.
The earlier posts were quick to keep you all informed. To provide a bit more detail... Laura did very well in surgery, but it was hard and took over 10 hours. The second transplant is more difficult, there is scaring that must be dealt with as well as numerous other details. We were aware of some but not all. The amount of blood and fluids that were needed for the surgery was staggering. 10 units of blood during surgery and 2 units after, platelets...etc. Everything was described as 10 units of this, 12 units of that. Scary volumes.
After Laura was back in ICU there are a few issues were are dealing with. The right lung was harder to replace due to scaring. Managing the scaring caused serious bleeding. As of this evening her right drainage tubes had collected about 1250ml of blood. With the addition of two units and platelets this afternoon as well as a lowered blood pressure we hope this will naturally correct itself. If it does not we will have to go back into surgery to have the blood and fluids removed.
This surgery would entail them making an incision to access the lungs and essentially vacuuming out the remaining blood and cleaning the area. Not a technical description but accurate. My new book, Lung Transplants for Dummies will be released soon. Not a complicated surgery but non the less a serious surgery. This is not uncommon and the team is not worried.
I remember from the last transplant the tree of meds looking so intimidating with two rows of pumps and medication hanging off the top. Laura out did herself this time with 6 drainage tubes in her chest and over a dozen IV meds.
They accessed her internal jugular vein and then added another tree on the side of that. The drug list is long and serious. She is on propofol and it is amazing to see her reaction when she is on a lower dose and wakes us. The effectiveness and speed at which these drugs work is pretty incredible.
Two of the new pumps are related to issues with the pericardium.This is the membrane that encloses the heart. As part of the first transplant they had to cut through this membrane as a result when healing it thickens. For the re-transplant it becomes more difficult to manage the bleeding and the fluid can build up requiring another pair of drainage tubes.
They did have to insert another NG tube (nasogastric tube) to remove the air that was building up in her stomach. This NG tube is about the diameter of a pencil and inserted through her nose into her stomach. The tube is then connected to a pump and the gases and fluids are collected. Luckily she was out cold and will not remember this.
Laura is still intubated and will remain on the ventilator until we have a grasp on the bleeding. If she was to have surgery tomorrow they would have to reinsert the breathing tube so they thought better of it to leave it in over night.
She was able to respond to voice commands, move her fingers and toes, squeeze my hand and open her eyes at multiple points in the day. Tonight they will sedate her and let her sleep through. Tomorrow we have rounds at 7 and will learn more based on the progress of the evening. 37 hours later it is time for some sleep.
We cannot thank the team enough #UCSFLungtransplantBadasses. All of the Doctors, NPs, RNs, RTs, anesthesiologists, endocrinologists, pharmacists, chaplain... all amazing!
To share a story, our pharmacists came by today jumping up and down so excited that the re-transplant went well. As she was one of the people managing the pre-op testing she knew in advanced what was going on. She was so excited that Laura was going to receive the transplant she avoided us all day yesterday because she did not think she could keep it a secret. She thought she would give it away. That is an example level of connection we have from the team. A similar story happened with one of the RNs. Just can't say enough positive things about this team.
A big step forward. More to come tomorrow.
Love,
The Z's
The earlier posts were quick to keep you all informed. To provide a bit more detail... Laura did very well in surgery, but it was hard and took over 10 hours. The second transplant is more difficult, there is scaring that must be dealt with as well as numerous other details. We were aware of some but not all. The amount of blood and fluids that were needed for the surgery was staggering. 10 units of blood during surgery and 2 units after, platelets...etc. Everything was described as 10 units of this, 12 units of that. Scary volumes.
After Laura was back in ICU there are a few issues were are dealing with. The right lung was harder to replace due to scaring. Managing the scaring caused serious bleeding. As of this evening her right drainage tubes had collected about 1250ml of blood. With the addition of two units and platelets this afternoon as well as a lowered blood pressure we hope this will naturally correct itself. If it does not we will have to go back into surgery to have the blood and fluids removed.
This surgery would entail them making an incision to access the lungs and essentially vacuuming out the remaining blood and cleaning the area. Not a technical description but accurate. My new book, Lung Transplants for Dummies will be released soon. Not a complicated surgery but non the less a serious surgery. This is not uncommon and the team is not worried.
I remember from the last transplant the tree of meds looking so intimidating with two rows of pumps and medication hanging off the top. Laura out did herself this time with 6 drainage tubes in her chest and over a dozen IV meds.
They accessed her internal jugular vein and then added another tree on the side of that. The drug list is long and serious. She is on propofol and it is amazing to see her reaction when she is on a lower dose and wakes us. The effectiveness and speed at which these drugs work is pretty incredible.
Two of the new pumps are related to issues with the pericardium.This is the membrane that encloses the heart. As part of the first transplant they had to cut through this membrane as a result when healing it thickens. For the re-transplant it becomes more difficult to manage the bleeding and the fluid can build up requiring another pair of drainage tubes.
They did have to insert another NG tube (nasogastric tube) to remove the air that was building up in her stomach. This NG tube is about the diameter of a pencil and inserted through her nose into her stomach. The tube is then connected to a pump and the gases and fluids are collected. Luckily she was out cold and will not remember this.
Laura is still intubated and will remain on the ventilator until we have a grasp on the bleeding. If she was to have surgery tomorrow they would have to reinsert the breathing tube so they thought better of it to leave it in over night.
She was able to respond to voice commands, move her fingers and toes, squeeze my hand and open her eyes at multiple points in the day. Tonight they will sedate her and let her sleep through. Tomorrow we have rounds at 7 and will learn more based on the progress of the evening. 37 hours later it is time for some sleep.
We cannot thank the team enough #UCSFLungtransplantBadasses. All of the Doctors, NPs, RNs, RTs, anesthesiologists, endocrinologists, pharmacists, chaplain... all amazing!
To share a story, our pharmacists came by today jumping up and down so excited that the re-transplant went well. As she was one of the people managing the pre-op testing she knew in advanced what was going on. She was so excited that Laura was going to receive the transplant she avoided us all day yesterday because she did not think she could keep it a secret. She thought she would give it away. That is an example level of connection we have from the team. A similar story happened with one of the RNs. Just can't say enough positive things about this team.
A big step forward. More to come tomorrow.
Love,
The Z's
Success!
I just spoke with the nurses and the surgery was a success. It lasted about 8 hours and all seemed to go as planned. We have not had an official briefing yet from the doctors and expect to have more details as the day goes on. On to the recovery phase.
Thank you again for all ongoing support. We could not have made it this far without you all.
Cheers!
Thank you again for all ongoing support. We could not have made it this far without you all.
Cheers!
Tuesday, November 13, 2018
We are in surgery
At about 8 this evening Laura went into surgery. We expect the surgery to last 10-12 hours. As we learn more we will share that information.
Thank you for all the thoughts and prayers.
The Zs
Thank you for all the thoughts and prayers.
The Zs
First Call
We received the first call on lungs. Given the five false alarms last time we are cautiously optimistic. If it is a go, they will start the re-transplant this evening.
More to come.
Cheers!
More to come.
Cheers!
Monday, November 12, 2018
The clog
Always ups an downs. Last night in the early hours Laura's feeding tube clogged. This is a significant issue as she is receiving all of her nutrients via this tube. If the tube can't be cleared then they have to pull it and replace it.
The tube is over 2' long. It is placed up the nose, down through the stomach and into the beginning of the intestines. It is not a fun process. Radiology has to be involved to make sure it placed correctly. This takes sooooo long.
Here is a picture of us at 2 in the afternoon trying to break up the clog with Coke and a syringe. This took over an hour of small push and pulls until it finally pushed through. One of the NPs had a wire that he was using to rotor rooter the tube prior. CRAZY!
Laura's air flow was increased and in doing so her LAS is now 91. We did learn today that they have had offers for organs but have turned them down, waiting for what they think are the right ones. As hard as it is now, it can be worse and since it is not worse they are waiting for the better lungs.
As we enter week 8 (not counting the early September stay) hopefully our number comes up. When we first checked in for this a nurse commented about people being in the hospital for months. We had no idea that we would be one of them.
The 10ICU team ROCKs. Thank you for the support and care. Same applies for the 10L team. We are very lucky to be at the best hospital.
Thank you all for being here with us.
Cheers,
The Z's
The tube is over 2' long. It is placed up the nose, down through the stomach and into the beginning of the intestines. It is not a fun process. Radiology has to be involved to make sure it placed correctly. This takes sooooo long.
Here is a picture of us at 2 in the afternoon trying to break up the clog with Coke and a syringe. This took over an hour of small push and pulls until it finally pushed through. One of the NPs had a wire that he was using to rotor rooter the tube prior. CRAZY!
Laura's air flow was increased and in doing so her LAS is now 91. We did learn today that they have had offers for organs but have turned them down, waiting for what they think are the right ones. As hard as it is now, it can be worse and since it is not worse they are waiting for the better lungs.
As we enter week 8 (not counting the early September stay) hopefully our number comes up. When we first checked in for this a nurse commented about people being in the hospital for months. We had no idea that we would be one of them.
The 10ICU team ROCKs. Thank you for the support and care. Same applies for the 10L team. We are very lucky to be at the best hospital.
Thank you all for being here with us.
Cheers,
The Z's
Sunday, November 11, 2018
Progress with the Kindeys
We had some good news today. Laura's kidney numbers are down more and back in line with where the must be for a transplant. A huge relief.
We had a nice walk in the hall today. Not far but it did get her out of the room for a few minutes.
Given the continued decline in breathing, they want her to do the bipap more often. The goal is to make breathing easier and less of a stress on her body. It will also keep the CO2 level down.
Enjoy the weekend.
Cheers!
We had a nice walk in the hall today. Not far but it did get her out of the room for a few minutes.
Given the continued decline in breathing, they want her to do the bipap more often. The goal is to make breathing easier and less of a stress on her body. It will also keep the CO2 level down.
Enjoy the weekend.
Cheers!
This sucks!
Day XX. It may be day 45 or 50, I really don't know but I do know it sucks. Laura is a champ, grinding it out. I can't put enough emphasis on the grinding. Everyday she fights to keep it all moving ahead. There is an end in sight but at times it is not visible. ICU is not the St. Regis or a good Best Western for that matter. It is taking its toll.
I was going to do an infographic on this journey. Miles driven each day (48.2), ave pace( 35mph but feels like -50)... hours in the car (too many), just something different to show the journey. ((New stat, how many dumb asses can stall on the Bay Bridge after midnight on the same night? (BTW, jackass in the '94 Jaguar tonight, did you really think it would make it. You drive a 90's Jag.)) That probably eliminates me from the loan list on the new electric Jag). Then I realized I it would be an exercise in ugh. The ughs at times seem to outweigh everything else and today the ughs had the advantage.
Everything builds up to make everything harder. Add a less than comforting nurse to the mix and that just adds to the suckiness. (BTW, UCSF nurses rock! We have had soooooo many amazing nurses, this one is just an outlier. We really can't say enough about the nurses and the greater team.) Today was just hard.
Blood gases (CO2) went up pass 80 for the first time. Not a surprise but still adds to the suck of the day. Hopefully more time on bipap will change that. Kidney numbers stayed at 1.7. More fluids were the focus of the day, we will see the results tomorrow and hopefully we can continue to drive the numbers down. She had one blood sugar incident that was remedied quickly.
I did find a few photos that changed my spirits.
Hopefully we can re-transplant soon. #teamlaura is ready.
Cheers All,
The Zs
I was going to do an infographic on this journey. Miles driven each day (48.2), ave pace( 35mph but feels like -50)... hours in the car (too many), just something different to show the journey. ((New stat, how many dumb asses can stall on the Bay Bridge after midnight on the same night? (BTW, jackass in the '94 Jaguar tonight, did you really think it would make it. You drive a 90's Jag.)) That probably eliminates me from the loan list on the new electric Jag). Then I realized I it would be an exercise in ugh. The ughs at times seem to outweigh everything else and today the ughs had the advantage.
Everything builds up to make everything harder. Add a less than comforting nurse to the mix and that just adds to the suckiness. (BTW, UCSF nurses rock! We have had soooooo many amazing nurses, this one is just an outlier. We really can't say enough about the nurses and the greater team.) Today was just hard.
Blood gases (CO2) went up pass 80 for the first time. Not a surprise but still adds to the suck of the day. Hopefully more time on bipap will change that. Kidney numbers stayed at 1.7. More fluids were the focus of the day, we will see the results tomorrow and hopefully we can continue to drive the numbers down. She had one blood sugar incident that was remedied quickly.
I did find a few photos that changed my spirits.
Hopefully we can re-transplant soon. #teamlaura is ready.
Cheers All,
The Zs
Friday, November 9, 2018
Some prorgress
At this point we have left good days behind us. Each day is really hard and ICU has benefits and negatives.
Physically Laura's lung function diminishes daily and the efforts needed to breathe increase. More time on the bipap is the solution at this point. That means that all of the uncomfortable side effects of the bipap are the byproduct of her need to breathe and keep the CO2 levels down.
The process is also mentally hard. We are approaching 50 days in the hospital. Poor sleep, stress, questions about next steps, timing are always present. Everyday is the unknown. Will there be lungs today, if not what will go wrong and how hard will the day be. No choice but to grind through but it is a grind.
All that said, Laura is amazing. A battler, a fighter, a grinder all to the X degree. I am proud to call her my wife. She will fight through this.
As far as updates on the day. The kidney numbers are looking better. She is down to 1.7 today from 1.9 yesterday. It appears that there was just not enough hydration. In the next couple of days we should see more improvement and can move past this scare.
Laura also had to complete another six minute walk. Today she did her third walk in the past 7-8 weeks. The first was around 600', the second 420' and today she completed 144'. This walk took 20+ minutes to recover from. Think about that 144 ft in 6 minutes. If we extrapolate this (without degradation) it would take her 3.7 hours to run a mile. That means a marathon would take over 4 days.
Thank you again for all the support.
Love,
The Zs
Physically Laura's lung function diminishes daily and the efforts needed to breathe increase. More time on the bipap is the solution at this point. That means that all of the uncomfortable side effects of the bipap are the byproduct of her need to breathe and keep the CO2 levels down.
The process is also mentally hard. We are approaching 50 days in the hospital. Poor sleep, stress, questions about next steps, timing are always present. Everyday is the unknown. Will there be lungs today, if not what will go wrong and how hard will the day be. No choice but to grind through but it is a grind.
All that said, Laura is amazing. A battler, a fighter, a grinder all to the X degree. I am proud to call her my wife. She will fight through this.
As far as updates on the day. The kidney numbers are looking better. She is down to 1.7 today from 1.9 yesterday. It appears that there was just not enough hydration. In the next couple of days we should see more improvement and can move past this scare.
Laura also had to complete another six minute walk. Today she did her third walk in the past 7-8 weeks. The first was around 600', the second 420' and today she completed 144'. This walk took 20+ minutes to recover from. Think about that 144 ft in 6 minutes. If we extrapolate this (without degradation) it would take her 3.7 hours to run a mile. That means a marathon would take over 4 days.
Thank you again for all the support.
Love,
The Zs
Back to the ICU
The past 2 days have been tough and today it really went over the edge. Laura could not catch her breath, stomach issues persisted, headaches, hot flashes and elevated kidney function numbers. All in all just a shitty day.
The difficulty in breathing is obviously due to the decline in lung function as the chronic rejection continues. Bipap is a working solution and does help. The question will be how long will bipap work. Brings up a great deal of anxiety and nervousness. The next step will be a trach and as we learn more about the procedure and the benefits we see the value. Hopefully we are re-transplanted prior to needing that.
Given that Laura is on a 24/7 tube feed, her stomach is just a mess. They did switch her to a higher protein, lower carb formula but that has not really changed how she feels while on tube feed. The endocrinologists have tweaked her insulin and appears that there is some stability. Knock on wood.
We spent sometime on the discussion of headaches and dizziness and we hope that it was just a matter of dehydration. This would also explain the elevate kidney numbers. We really hope it was as simple as accessing her port and restarting continuous fluids.
For those going through this for the first time, especially with CF, get the port. It is a daunting decision at the time. You feel as if you are giving in a bit or losing to the disease. It makes life much easier. Your veins are probably like Laura's, super sensitive and worked over from being poked over the years. This elevates those issues immediately. There are other issues with the port but all in all it is a win.
Back to the kidney numbers. We need these to get back in line. Today they were 1.9 last week 1.5. That is a big jump. The kidneys must be healthy enough to manage the Prograf post transplant. If the numbers go above a certain threshold Laura will be removed from the list. If the hydration is not the issue and we see no improvement in the next day, we will move to other solutions. We have had these issues in the past and with some changes and tweaks we have always been able to get it back in control.
With all that we were moved to ICU this evening. At this point it is unlikely we will move out of ICU prior to the re-transplant. Minus the restrictions for guests, this is a good move. 1 to 1 care for Laura 24/7. All of her doctors, and there are lots, are on 10ICU. After a bit of settling in it should be more comfortable for Laura.
On to other commentary. Thank you to the person/persons that sent the 10Long nurses station cookies. They loved it. The team on 10 long is awesome. We have had LOTS of nurses at different hospitals for different times. At this point we are a known entity. People go on vacation and we are still there when they return. They are excited to see us but disappointed at the same time. They are pulling for Laura and #teamlaura.They discourage alcohol on the floor so the cookies were a nice treat. Thank you.
Sorry for typos. It is late and I am not going to proofread. More to come.
Love and thanks to all.
The Zs
The difficulty in breathing is obviously due to the decline in lung function as the chronic rejection continues. Bipap is a working solution and does help. The question will be how long will bipap work. Brings up a great deal of anxiety and nervousness. The next step will be a trach and as we learn more about the procedure and the benefits we see the value. Hopefully we are re-transplanted prior to needing that.
Given that Laura is on a 24/7 tube feed, her stomach is just a mess. They did switch her to a higher protein, lower carb formula but that has not really changed how she feels while on tube feed. The endocrinologists have tweaked her insulin and appears that there is some stability. Knock on wood.
We spent sometime on the discussion of headaches and dizziness and we hope that it was just a matter of dehydration. This would also explain the elevate kidney numbers. We really hope it was as simple as accessing her port and restarting continuous fluids.
For those going through this for the first time, especially with CF, get the port. It is a daunting decision at the time. You feel as if you are giving in a bit or losing to the disease. It makes life much easier. Your veins are probably like Laura's, super sensitive and worked over from being poked over the years. This elevates those issues immediately. There are other issues with the port but all in all it is a win.
Back to the kidney numbers. We need these to get back in line. Today they were 1.9 last week 1.5. That is a big jump. The kidneys must be healthy enough to manage the Prograf post transplant. If the numbers go above a certain threshold Laura will be removed from the list. If the hydration is not the issue and we see no improvement in the next day, we will move to other solutions. We have had these issues in the past and with some changes and tweaks we have always been able to get it back in control.
With all that we were moved to ICU this evening. At this point it is unlikely we will move out of ICU prior to the re-transplant. Minus the restrictions for guests, this is a good move. 1 to 1 care for Laura 24/7. All of her doctors, and there are lots, are on 10ICU. After a bit of settling in it should be more comfortable for Laura.
On to other commentary. Thank you to the person/persons that sent the 10Long nurses station cookies. They loved it. The team on 10 long is awesome. We have had LOTS of nurses at different hospitals for different times. At this point we are a known entity. People go on vacation and we are still there when they return. They are excited to see us but disappointed at the same time. They are pulling for Laura and #teamlaura.They discourage alcohol on the floor so the cookies were a nice treat. Thank you.
Sorry for typos. It is late and I am not going to proofread. More to come.
Love and thanks to all.
The Zs
Monday, November 5, 2018
Out of the ICU
We have no idea what day it is or how long we have been in the hospital but we do know we are out of the ICU!
The reason we went into ICU was due to the extremely high blood gas issues Laura was dealing with. In the beginning we thought the cause may be due to the decreased time time Laura was spending on the bipap. In the end, that seems to be the cause. After a few days of tweaking, the beast of a machine, with the respiratory therapy team she was moved back to the floor.
The ICU team on 13 was AWESOME. We are very lucky to be under the watchful eye of the best.
Every time we move to a different floor or have a change in the team we need to review what is going on, this includes a review of her meds. This is not a short process. Laura is taking 40-50+ pills a day. Her blood sugars continue to be all over the place for her insulin needs make that a very complex process as well. While I was there today three Endocrinologists came into the room to discuss her case. There is probably a good joke there. Three Endocrinologists walk into a bar.... Anyway, managing her blood sugars while on 24/7 tube feed will continue to be a task as well as all of the other meds.
In order for Laura to go back onto the main floor (For clarity, main floor is not a normal floor in a hospital. There are 20 rooms or so and all the patients on the floor have either ALD (advanced lung disease) or a cardiac equivalent. A picture of health) she is on the full face bipap. Thus far this is going well but we are unsure how long she can go on this. Once this runs out, we will have to go back to ICU and will be trached.
As we are the eve of the midterm elections, you should go vote. Below is Laura completing her ballot. What's your excuse not to vote?
Thanks again for all of the notes and thoughts. More to come. Hopefully lungs are coming soon.
Love,
The Zs
The reason we went into ICU was due to the extremely high blood gas issues Laura was dealing with. In the beginning we thought the cause may be due to the decreased time time Laura was spending on the bipap. In the end, that seems to be the cause. After a few days of tweaking, the beast of a machine, with the respiratory therapy team she was moved back to the floor.
The ICU team on 13 was AWESOME. We are very lucky to be under the watchful eye of the best.
Every time we move to a different floor or have a change in the team we need to review what is going on, this includes a review of her meds. This is not a short process. Laura is taking 40-50+ pills a day. Her blood sugars continue to be all over the place for her insulin needs make that a very complex process as well. While I was there today three Endocrinologists came into the room to discuss her case. There is probably a good joke there. Three Endocrinologists walk into a bar.... Anyway, managing her blood sugars while on 24/7 tube feed will continue to be a task as well as all of the other meds.
In order for Laura to go back onto the main floor (For clarity, main floor is not a normal floor in a hospital. There are 20 rooms or so and all the patients on the floor have either ALD (advanced lung disease) or a cardiac equivalent. A picture of health) she is on the full face bipap. Thus far this is going well but we are unsure how long she can go on this. Once this runs out, we will have to go back to ICU and will be trached.
As we are the eve of the midterm elections, you should go vote. Below is Laura completing her ballot. What's your excuse not to vote?
Thanks again for all of the notes and thoughts. More to come. Hopefully lungs are coming soon.
Love,
The Zs
Sunday, November 4, 2018
Getting comfortable in ICU and some news
The team in ICU is great. Laura feels more at ease with the extra attention and that can only help.
Cheers to all,
The Zs
Today was a day to get acclimated. Lots of bipap work today with the goal of understanding where her levels are and making sure they can control them. Tomorrow will be more difficult.
In order to control the gases they have to do more adjustments to the bipap as well as the equipment she wears. She currently has a unit that does not cover her mouth. This helps her get over the claustrophobic feels she has while on the machine. The negative to this set up is that the forced air can escape from her mouth. This makes the set up less than optimal. Tomorrow they will try other set ups that include full face masks. This will also be more uncomfortable due to the feeding tube those goes up her nose.
It is important to figure this out because as her lungs continue to fail her need for support will only increase. We hope that we receive the call soon and can bypass those steps.
On another note, KTVU wrote a follow up article on Laura. We did not know the article ran last week. You can read it here.
Cheers to all,
The Zs
Friday, November 2, 2018
More excitement
Sorry for the delayed post. The days have gotten away from us.
Cheers and Love,
Today was not the best of days. Laura woke up with some tightness in her chest and a more noticeable shortness of breath. After it did not go away there was some concern that her lung may have collapsed but something was wrong.
After the alert went out we quickly had a team of 10+ on her. UCSF is really amazing, the team showed up in force and worked to diagnose the issue. The chest x-ray showed nothing, which was good. They did a blood gas measurement and that did show the issue.
As we have discussed in the past, due to the chronic rejection, her lungs cannot exhale enough. To monitor this they measure her blood gases on a regular basis, which looks at the amount of CO2 in her blood. A normal number for a healthy person is around 40-45. Today Laura was at 78. Last week she was in the high 60s. This is a big jump in a short period. The concern with an increase that significant is that the lungs are failing at a more significant rate.
To remedy this they immediately put her back on bipap. Bipap will force the air into the lungs and make the lungs expel the CO2. There are limits to how long you can be on a bipap machine on the floor. The limits differ from the floor and ICU. Due to her need for more time on the bipap she was moved to ICU today.
For the next 24/48 hours they will keep her in ICU with 1:1 monitoring. If her blood gas number can come down into a normal range while on manageable time on the bipap they will move her back to the floor. What we really hope for is the nod on the transplant.
We have spent all of October in the hospital. 10 days in September and we are now on day 3 of November. Laura has not been outside in 40+ days. We know we are in the best of hands and the support has been awesome. We cannot express how much the support from our tribe means. As you can image everyday is a roller coaster of some kind and the thoughts, comments and prayers make a difference. Thank you.
Hopefully we will have better news in the coming days.
Cheers and Love,
The Z's
Sunday, October 28, 2018
Day what?
So the days are all a blend. Everyday is like the next with nothing significant to differentiate one from another. If you have ever taken a cruise, you are familiar with the the floor mats in the elevators that tell you what day it is, Sunday afternoon or Wednesday morning. We need those. The free open bar would be welcomed as well,
The past few days, like others are up and down. There are moments where she feels ok. OK is the best we can do, it is not good but not terrible. Between the tube feeds and management of her blood sugars it usually just sucks.
The waiting is hard and has no end in sight. It could be tomorrow and it could be in 3 months. Someone with little bedside manner or awareness mentioned that some people have waited 7-8 months in the hospital for a transplant. REALLY! Let's have some awareness of the audience people. The time away is hard enough as is. To place that kind of timing on it is just brutal. In reality, that is not likely for us.
As we wait, we have to again thank ALL the team. They are working for #teamlaura. When a patient has as many treatments and visits per day as Laura does the patient and their friends and family have the opportunity to know the staff and vis versa. There are some good stories that are shared that break down any walls ASAP. The team goes out of their way to do what they can for Laura. They are part of #teamlauara. Thank you all. From William the garage attendant to the RNs, NPs, Drs, PT, RT, housekeeping.... amazing.
Thank you all as well. Sunday dinners are great and appreciated as are the carpools, play dates, sleep overs...etc.
We could not have gone this far without.
Appreciate it all,
Love the Z's
Please excuse the typos and grammar mistakes, it is late.
The past few days, like others are up and down. There are moments where she feels ok. OK is the best we can do, it is not good but not terrible. Between the tube feeds and management of her blood sugars it usually just sucks.
The waiting is hard and has no end in sight. It could be tomorrow and it could be in 3 months. Someone with little bedside manner or awareness mentioned that some people have waited 7-8 months in the hospital for a transplant. REALLY! Let's have some awareness of the audience people. The time away is hard enough as is. To place that kind of timing on it is just brutal. In reality, that is not likely for us.
As we wait, we have to again thank ALL the team. They are working for #teamlaura. When a patient has as many treatments and visits per day as Laura does the patient and their friends and family have the opportunity to know the staff and vis versa. There are some good stories that are shared that break down any walls ASAP. The team goes out of their way to do what they can for Laura. They are part of #teamlauara. Thank you all. From William the garage attendant to the RNs, NPs, Drs, PT, RT, housekeeping.... amazing.
Thank you all as well. Sunday dinners are great and appreciated as are the carpools, play dates, sleep overs...etc.
We could not have gone this far without.
Appreciate it all,
Love the Z's
Please excuse the typos and grammar mistakes, it is late.
Wednesday, October 24, 2018
Moving slowly, literally
We are starting to revisit testing. We have been here so long that they are now retesting Laura to establish a new baseline or update her charts. Two of the standard tests are the FEV1 and the 6 minute walk.
The forced expiratory volume test (FEV1) test the amount of air a person can forcefully exhale in 1 min. The measure is a bit confusing when explained that said, on September 11th she had a score of .9, yesterday she blew a .5, this is significant drop. It is no surprise that this has gone down given the situation.
She also did the 6 minute walk, simply, how far can you walk in 6 min. In late September she walked 600' in 6 min, this time it was around 420'. Usain Bolt can rest easy.
These results have increased her number yet again. We are at the top and it just becomes a waiting game for a match.
The tube feeds are still a work in progress. Finding the right amount and the right volume to gain weight while not feeling terrible all via tube feeds has proven harder than expected. Hopefully a solution is found soon and a few nights of good sleep can be had.
Love to see the shirts everywhere. A surreal experience. More news coming on a second run.
Thanks again for all the support.
The Z's
The forced expiratory volume test (FEV1) test the amount of air a person can forcefully exhale in 1 min. The measure is a bit confusing when explained that said, on September 11th she had a score of .9, yesterday she blew a .5, this is significant drop. It is no surprise that this has gone down given the situation.
She also did the 6 minute walk, simply, how far can you walk in 6 min. In late September she walked 600' in 6 min, this time it was around 420'. Usain Bolt can rest easy.
These results have increased her number yet again. We are at the top and it just becomes a waiting game for a match.
The tube feeds are still a work in progress. Finding the right amount and the right volume to gain weight while not feeling terrible all via tube feeds has proven harder than expected. Hopefully a solution is found soon and a few nights of good sleep can be had.
Love to see the shirts everywhere. A surreal experience. More news coming on a second run.
Thanks again for all the support.
The Z's
Monday, October 22, 2018
Another Monday
Jumping right into it. The 24 tube feeds are creating havoc on Laura's stomach. A constant upset stomach that shows no mercy, throughout the day and night. They continue to try other meds to help limit the discomfort and try to figure out a solution that is more comfortable. In the end, the tube feed is working and helping to stabilize her weight. She has to maintain her weight to stay on the transplant list.
We did have a spirometry test today. The last test was on September 11th. On the 11th her FEV1 was .93 today it was point .53. Not a big surprise given the increase in her oxygen needs.
I am not sure we have appropriately thanked the UCSF team. The ENTIRE team on the 10th floor has been awesome. We interact with dozens of people per day and they really do try to make Laura feel better. Thank you to all on 10Long who have made the stay as comfortable as possible.
Hoping for a call soon. Everyone has an opinion we should start a pool. A 50/50 pool for the foundation.
Thank you again for all the support.
Cheers,
Kevin
Cheers,
Kevin
Sunday, October 21, 2018
Into the dog days
We continue to wait. It is a real grind and each day is very similar to the last and everything gets just a bit harder.
Laura's has been fighting to keep her weight up and with the addition of the feeding tube has been able to gain a pound. It is just so hard to keep it on as the energy her body needs is so high. She is burning calories at a blistering pace.
With the addition of the tube feeds, the team is trying to control her blood sugars. Last night they were all over the place and she twice went hypoglycemic. Moving the tube feeds from 12 hours on and 12 off to a consistent 24 hours on may help.
She is continuing to use the bipap machine in the evening and once during the day for a recovery nap. She is still at 15 liters with 25 liters for recovery.
The photos of the shirts are amazing. Keep them coming. A second run is going to be placed so check out #teamlaura for more details.
Cheers,
The Z's
Wednesday, October 17, 2018
Day 25
WOW, Day 25.
We did have a 20 hour break there for one day but that was it. Time blends together now.
Today was a stable day. They took her off of one of the antibiotics that is on a two week cycle. With that gone she can walk with just air and not the pole with bags hanging. It is a welcome break for Laura.
No change in other meds, lung function...etc. Laura is managing the feeding tube and bipap well and hopefully she can rest tonight. A few nights of decent sleep in a row will make a difference.
A calm day.
Cheers to all,
The Z's
We did have a 20 hour break there for one day but that was it. Time blends together now.
Today was a stable day. They took her off of one of the antibiotics that is on a two week cycle. With that gone she can walk with just air and not the pole with bags hanging. It is a welcome break for Laura.
No change in other meds, lung function...etc. Laura is managing the feeding tube and bipap well and hopefully she can rest tonight. A few nights of decent sleep in a row will make a difference.
A calm day.
Cheers to all,
The Z's
Lots of air
The LAS (Lung Allocation Score) is an algorithm that know one has ever actually seen and only in theory understand. We were informed that Laura's LAS is now at 89. This is a huge number. If you remember at the time of her last transplant she was at 60.
They raised her score due to her oxygen needs. When she is resting she is on 15 liters when she moves around, takes 10 steps to the bathroom, she is on 25 liters. As previously discuss, when a persons needs are above25 liters they have to be placed in ICU. ICU can facilitate delivery of up to 50 liters. That is like a blow dryer.
The feeding tube was finally placed correctly and Laura now is receiving half of her daily caloric needs via the tube. This does relieve the stress of eating. For those of you going through this for the first time it is scary.
There is a mental fight that happens that you want to eat your food, you think you are healthier if you consume food normally. It take allot of energy to eat, especially when you are sick, that energy is a precious commodity at this point and the tube saves that energy for your general well being. It is also a mental strain to know you have to eat. Laura stresses about the need to eat 2000 calories.
The final plus to a feeding tube is that it does relieve some of the bloating or the feeling of being bloated. The tube actually goes through the stomach and into the intestines, thus the relief.
Thanks again to everyone for the turnout at the Commons. Awesome to see you all in the photo. The article was great as well. More to come on the foundation.
Cheers,
Kevin
They raised her score due to her oxygen needs. When she is resting she is on 15 liters when she moves around, takes 10 steps to the bathroom, she is on 25 liters. As previously discuss, when a persons needs are above25 liters they have to be placed in ICU. ICU can facilitate delivery of up to 50 liters. That is like a blow dryer.
The feeding tube was finally placed correctly and Laura now is receiving half of her daily caloric needs via the tube. This does relieve the stress of eating. For those of you going through this for the first time it is scary.
There is a mental fight that happens that you want to eat your food, you think you are healthier if you consume food normally. It take allot of energy to eat, especially when you are sick, that energy is a precious commodity at this point and the tube saves that energy for your general well being. It is also a mental strain to know you have to eat. Laura stresses about the need to eat 2000 calories.
The final plus to a feeding tube is that it does relieve some of the bloating or the feeling of being bloated. The tube actually goes through the stomach and into the intestines, thus the relief.
Thanks again to everyone for the turnout at the Commons. Awesome to see you all in the photo. The article was great as well. More to come on the foundation.
Cheers,
Kevin
Monday, October 15, 2018
Another big day
Like life you just want a day that does not have big highs or low lows. Today was not a balanced day in the middle.
The late afternoon and early evening went back to shitty. Given the work she needs to do to eat and recover, it was decided to go onto a feeding tube. We discussed this with the team and everyone was on board. The stress of eating, trying to managing calorie intact and actually recovering from the event of eating is taking too much energy. A feeding tube will help all of this.
Love,
To start we now have an LAS of 74. That is a big f@*#ing number. That is good and means we are ready to go. It also means Laura is really sick.
The morning encompassed all the doctors, and their teams, visiting about what will happen in the coming weeks if there is not a transplant. We are in a good place. 100% oxygen saturation, at 15 liters, heart rate in the high 80s/low 90s... Again we are trying to slow the decline.
If we decline more rapidly they can increase oxygen to 25 liters outside ICU. In ICU we can go to 50 liters. There is always the concern of desaturation and that is a sign that the lungs are not able to expel the Co2 . If we hit this point then we start looking at a trach or the ECMO machine (Extracorporeal Membrane Oxygenation). This is where they take the blood out of the body, scrub it for Co2, add oxygen, and pump it back in. All in real time non-stop. We really do not want to get here.
After this conversation and a big nap on the BiPap machine the afternoon was better. Good color, went for a walk on the floor (30 yards or so) had lunch.
The late afternoon and early evening went back to shitty. Given the work she needs to do to eat and recover, it was decided to go onto a feeding tube. We discussed this with the team and everyone was on board. The stress of eating, trying to managing calorie intact and actually recovering from the event of eating is taking too much energy. A feeding tube will help all of this.
The tube is over 2.5feet long. It goes through her nose, through her stomach and into the intestines. The placed it with a machine that can follow the magnet at the end of the tube. She was amazing when placing it but they did not place it far enough. She has been waiting to have this replace for 2 hours. This really really sucks. At 9:30 it was still not placed.
So that was our day. Hope your day was a bit less emotional.
Thanks to all who participated in the photo. That was really great. We do read the comments, txt and emails on all of them. We (I) click like but would like to say more when time permits.
Next steps, beyond waiting, is to try to find a rental. I did reach out to the family we rented from before. Maybe we get lucky due to the new 30 day rental rule in SF. Looking forward to another successful recover period in Cole Valley.
Elon hasn't returned my request yet for a car with a sticker. We will see. :)
Hope you are all well. Thank you for the support.
Love,
The Z's
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