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.
Sunday, October 28, 2018
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
Sunday, October 14, 2018
Trying to find consistancy
Another short updated as it is late.
We started back on BiPAP on Friday night with limited success. It is a very weird sensation as a massive amounts of air push through your nose as people are telling you to relax and it will be ok. There are a number of feelings associated with the BiPAP machine including claustrophobia to add to the experience. That said it can be great!
Saturday became a practice day and Laura worked to relaxed with the device in place. Saturday night ended up being a success. After she was comfortable she was able to relax and have one of the better nights sleep in a while. 90 BPM and 100% oxygen saturation. Good sleep is so hard in the hospital and yet it changes everything when you can get it.
The BiPap is just for maintenance. It can not restore and lung function it is simply trying to make breathing at nigh as easy as possible enabling good sleep and the reduction of calorie burn.
We are now in full cal counting mode trying to average 2000-2100 cals consumed per day. The key is a single 10 oz cup of coffee malt that is over 700 cals per serving. The BiPAP makes calorie burn diminish greatly. Laura's focus on grinding through a meal is adding up. She actually gained weight yesterday!
With all that has been going on, we know we are near the very top of the list for the region. We are now just waiting.
More to come.
Thanks again.
Cheers,
The Z's
We started back on BiPAP on Friday night with limited success. It is a very weird sensation as a massive amounts of air push through your nose as people are telling you to relax and it will be ok. There are a number of feelings associated with the BiPAP machine including claustrophobia to add to the experience. That said it can be great!
Saturday became a practice day and Laura worked to relaxed with the device in place. Saturday night ended up being a success. After she was comfortable she was able to relax and have one of the better nights sleep in a while. 90 BPM and 100% oxygen saturation. Good sleep is so hard in the hospital and yet it changes everything when you can get it.
The BiPap is just for maintenance. It can not restore and lung function it is simply trying to make breathing at nigh as easy as possible enabling good sleep and the reduction of calorie burn.
We are now in full cal counting mode trying to average 2000-2100 cals consumed per day. The key is a single 10 oz cup of coffee malt that is over 700 cals per serving. The BiPAP makes calorie burn diminish greatly. Laura's focus on grinding through a meal is adding up. She actually gained weight yesterday!
With all that has been going on, we know we are near the very top of the list for the region. We are now just waiting.
More to come.
Thanks again.
Cheers,
The Z's
Saturday, October 13, 2018
A better day
After the difficulty of leaving the hospital and then returning, today was a needed good day.
Getting back to the hospital was no easy task. When Laura did arrive the team was there waiting. She was quickly settled in and then given some good meds to sleep through the night. The UCSF team on the 10 Long really does rule!
Today was a better day. She is now on 15+ liters, which is a significant amount, and it will increase her LAS (Lung Allocation Score). She will start Bipap this evening and that should help her sleep better through the night.
A big push is now calories. Eating is very very hard. The effort needed for her to eat lunch is equivalent to use running hard for 10 mins. Just spent afterward. Her recovery time is significant as well. An hour to two later she is still feeling the effects. If she can't get to 2000 cals a day she will go on a feeding tube to make sure she has min cals.
Tomorrow is another day to recuperate from the home journey and settle into a routine. 3-4 walks around the floor a day, 2000+ calories, a number of breathing treatments and the usual pokes and prods.
More to come.
Cheers,
The Z's
Getting back to the hospital was no easy task. When Laura did arrive the team was there waiting. She was quickly settled in and then given some good meds to sleep through the night. The UCSF team on the 10 Long really does rule!
Today was a better day. She is now on 15+ liters, which is a significant amount, and it will increase her LAS (Lung Allocation Score). She will start Bipap this evening and that should help her sleep better through the night.
A big push is now calories. Eating is very very hard. The effort needed for her to eat lunch is equivalent to use running hard for 10 mins. Just spent afterward. Her recovery time is significant as well. An hour to two later she is still feeling the effects. If she can't get to 2000 cals a day she will go on a feeding tube to make sure she has min cals.
Tomorrow is another day to recuperate from the home journey and settle into a routine. 3-4 walks around the floor a day, 2000+ calories, a number of breathing treatments and the usual pokes and prods.
More to come.
Cheers,
The Z's
Thursday, October 11, 2018
In and Out
The title has nothing to do with the Squeeze Box song ;) - figure it out
Yesterday afternoon Laura was discharged from the hospital. We had run the gauntlet of requirements, avoided sick kids and had back up upon back up for oxygen needs. The work needed to leave the hospital was over may emotional day and in the end took its toll. Given the events of traveling from UCSF to home, getting settled and a bath, Laura was spent. Couple that with the concerns of not having immediate care a button away and what was to be a nice time at home became too much. Laura could not recover from the exertion. After a sleepless night and conversations with the hospital it was decided it was best to be re-admitted today.
This afternoon Laura we readmitted to UCSF and that is probably a good thing. Laura had a chance to see E and Bear (our dog), take a bath and be home. Even when you are not well home is where you want to be. Given her health the next time she is home will be with new lungs.
To all of those going through this, coming home is a tough choice. For those who do not live in the area, your choice is made. For others that are close it is a tough one. The thought of home is soothing, it warms the heart, it is where we want to be. It is not as comforting at 2 a.m. or reassuring at 5 a.m. For the care givers, you are on 24x7 call. There is no nurse to check meds or pull meds from the refrigerator. Everything is harder at home. Think about this choice. The doctors
Though the last 24 hours was not idea it was nice. E and Laura with Bear on the couch. A funny story and a laugh between breaths. Fractions of good in a stressful period but good.
So now we wait. We race against the body. Laura was more stable while in the hospital but it will still always be a decline. She is losing weight ( a feeding tube is likely as it is so hard to eat and just burns more cals) and everyday everything is just so much harder. She said,"the past few days have been so much harder than before". We both thought we knew what this would be like but the speed is so much faster, it changes everything.
Thank you all again for everything. Our block made paper flowers for her room as she can no longer have cut flowers. #teamlaura has hired Santa's crew to deliver, literally hundreds of packages of shirts. The goal to provide all us of strength (out tribe) and provide other some ease as they go through this,
We know we are in the top few of the LAS (lung allocation score). This is a hard spot. Our relief will come at someone else's lose.
Again, thank you all.
Positive news to follow soon.
The Z's
Yesterday afternoon Laura was discharged from the hospital. We had run the gauntlet of requirements, avoided sick kids and had back up upon back up for oxygen needs. The work needed to leave the hospital was over may emotional day and in the end took its toll. Given the events of traveling from UCSF to home, getting settled and a bath, Laura was spent. Couple that with the concerns of not having immediate care a button away and what was to be a nice time at home became too much. Laura could not recover from the exertion. After a sleepless night and conversations with the hospital it was decided it was best to be re-admitted today.
This afternoon Laura we readmitted to UCSF and that is probably a good thing. Laura had a chance to see E and Bear (our dog), take a bath and be home. Even when you are not well home is where you want to be. Given her health the next time she is home will be with new lungs.
To all of those going through this, coming home is a tough choice. For those who do not live in the area, your choice is made. For others that are close it is a tough one. The thought of home is soothing, it warms the heart, it is where we want to be. It is not as comforting at 2 a.m. or reassuring at 5 a.m. For the care givers, you are on 24x7 call. There is no nurse to check meds or pull meds from the refrigerator. Everything is harder at home. Think about this choice. The doctors
Though the last 24 hours was not idea it was nice. E and Laura with Bear on the couch. A funny story and a laugh between breaths. Fractions of good in a stressful period but good.
So now we wait. We race against the body. Laura was more stable while in the hospital but it will still always be a decline. She is losing weight ( a feeding tube is likely as it is so hard to eat and just burns more cals) and everyday everything is just so much harder. She said,"the past few days have been so much harder than before". We both thought we knew what this would be like but the speed is so much faster, it changes everything.
Thank you all again for everything. Our block made paper flowers for her room as she can no longer have cut flowers. #teamlaura has hired Santa's crew to deliver, literally hundreds of packages of shirts. The goal to provide all us of strength (out tribe) and provide other some ease as they go through this,
We know we are in the top few of the LAS (lung allocation score). This is a hard spot. Our relief will come at someone else's lose.
Again, thank you all.
Positive news to follow soon.
The Z's
Tuesday, October 9, 2018
We may be moving up but we are not moving out, yet.
This has been a very hard two days for Laura. We originally thought that we would be going home yesterday (Monday). As we went through the discharge procedures we had a number of issues come up. In the afternoon we were still lacking a high flow oxygen concentrator, the appropriate accessories. Given that we have a constant flow of kids throughout the house we also had to sanitize it given Laura's current immune system.
Those delays pushed us to today. We were set to go around noon but still had no oxygen concentrator. After the delivery of all other medical needs had happened a concentrator was still no where to be found. At 6 p.m. after hours on calls with Apria, UCSF and Kaiser we were able to have a delivery in the evening. We were set to go home for a few days.
After a short moment of excitement we were informed that Laura's potassium levels and shot up to 6.2. A normal level is 5.5. This was a bigger deal than we thought. High potassium levels can create arrhythmia and a possible heart attack. The doctors took this very seriously and axed our discharge.
After a number of treatments that include dextrose, insulin and other goodies, they will draw blood throughout the evening and track the trend of her levels. If they are trending down tomorrow there is still the possibility that she can go home in the afternoon.
On another topic a few months ago Laura was interviewed for a podcast called The Passion & Purpose Podcast. The podcast features interviews with individuals who either have a profound and inspiring story or have dedicated their lives to the study and understanding of passion and purpose.
The entire podcast series can be found here on iTunes.
Laura's specific interview can be found here.
Enjoy!
Thanks again,
The Z's
Those delays pushed us to today. We were set to go around noon but still had no oxygen concentrator. After the delivery of all other medical needs had happened a concentrator was still no where to be found. At 6 p.m. after hours on calls with Apria, UCSF and Kaiser we were able to have a delivery in the evening. We were set to go home for a few days.
After a short moment of excitement we were informed that Laura's potassium levels and shot up to 6.2. A normal level is 5.5. This was a bigger deal than we thought. High potassium levels can create arrhythmia and a possible heart attack. The doctors took this very seriously and axed our discharge.
After a number of treatments that include dextrose, insulin and other goodies, they will draw blood throughout the evening and track the trend of her levels. If they are trending down tomorrow there is still the possibility that she can go home in the afternoon.
The entire podcast series can be found here on iTunes.
Laura's specific interview can be found here.
Enjoy!
Thanks again,
The Z's
Monday, October 8, 2018
Moving on UP!
With some luck we will be out of the hospital tomorrow. A well deserved and needed respite for Laura. A bath and her own bed with a full night of sleep will be a welcomed change.
We have a solution for high flow oxygen and we have a stable IRI level. IV antibiotics were delivered today and the high flow oxygen should be delivered tomorrow. All goes well we will be home in time for the RedSox to close out the ALDS.
In speaking with on of the doctors this afternoon he informed me that we did move up the list. We are now at 59. He thought that there we only a couple of people above 55 in the region, so we are close.
Coming home means more than just a bath and her own bed. Having the ability to see E at home and to mentally prepare for the transplant is important. Two weeks ago we went into clinic for a regular appointment and we admitted.
For CF patients that read this blog you have probably been here and understand how much it can matter. It is a shock to the system. It raising all the fears and concerns that the disease carries, couple that with a second transplant and some time to prepare is important.
Thank you for the recipes for shakes. I forgot to mention we can't have Vit K so bye bye Kale. Seems to be the staple in most shakes. Potassium has also made the list due to interactions with one of the many drugs.
As always thanks for the comments, posts, emails, txt, phone message on the land line #oldschool and general well wishes.
Cheers,
The Z's
We have a solution for high flow oxygen and we have a stable IRI level. IV antibiotics were delivered today and the high flow oxygen should be delivered tomorrow. All goes well we will be home in time for the RedSox to close out the ALDS.
In speaking with on of the doctors this afternoon he informed me that we did move up the list. We are now at 59. He thought that there we only a couple of people above 55 in the region, so we are close.
Coming home means more than just a bath and her own bed. Having the ability to see E at home and to mentally prepare for the transplant is important. Two weeks ago we went into clinic for a regular appointment and we admitted.
For CF patients that read this blog you have probably been here and understand how much it can matter. It is a shock to the system. It raising all the fears and concerns that the disease carries, couple that with a second transplant and some time to prepare is important.
Thank you for the recipes for shakes. I forgot to mention we can't have Vit K so bye bye Kale. Seems to be the staple in most shakes. Potassium has also made the list due to interactions with one of the many drugs.
As always thanks for the comments, posts, emails, txt, phone message on the land line #oldschool and general well wishes.
Cheers,
The Z's
Sunday, October 7, 2018
Day 12
Well if you happen to be admitted to UCSF during fleet week and you have a view overlooking the bay, you do have a nice view of the air show.
We have had an uneventful weekend, which at this point is what we want, while making progress toward a discharge date. Laura's IRI level are now stable, above 2, while on Coumadin. This is to address the blot clot in her calf. Attaining and maintaining an IRI level greater than 2 is one of the two requirements for discharge. The second requirement is the capability to have high flow oxygen at home. We were able to find a system made by Drive Pharma that will enable 8-10 liters per hour.
The oxymizer pendant will enable her to have high flow oxygen with the hydrator while at home. For those of you with similar needs this may help you. It did take a few days for the team to find this as most patients are not capable of being at home while on high flow.
Eating has become a chore and as her body works harder to breathe her caloric requirements continue to increase. After meals she has a 15-20 min period to recover from eating which uses more calories fueling the cycle. Once home we will have to find a few high calorie (lower in sugar) shakes recipes. If anyone has suggestions fire them across.
Laura is walking 3x a day around the floor. Probably 120 yards per lap. The recovery time for a single lap takes 10-15 mins. It is important to keep up physical activity and build strength. When at home a walk up and down the block 3x a day will be a requirement as well.
With some luck we may be home tomorrow or Tuesday. As long as there is no decline or any significant changes to her oxygen needs we should be good to go. As great as the team is here, home will be a welcomed change.
Her lung function will continue to decrease over time. We have been told that it will be a more aggressive time line that what we experienced in the previous transplant. The reason for this is that in the first transplant we were fighting CF and this time we are fighting chronic rejection. We hope to receive a call while at home but if we do not given the decline we will have to be admitted at some point. Fingers crossed for a call soon.
Thank you again for all thoughts and prayers. Always appreciated.
Cheers,
The Z's
We have had an uneventful weekend, which at this point is what we want, while making progress toward a discharge date. Laura's IRI level are now stable, above 2, while on Coumadin. This is to address the blot clot in her calf. Attaining and maintaining an IRI level greater than 2 is one of the two requirements for discharge. The second requirement is the capability to have high flow oxygen at home. We were able to find a system made by Drive Pharma that will enable 8-10 liters per hour.
The oxymizer pendant will enable her to have high flow oxygen with the hydrator while at home. For those of you with similar needs this may help you. It did take a few days for the team to find this as most patients are not capable of being at home while on high flow.
Eating has become a chore and as her body works harder to breathe her caloric requirements continue to increase. After meals she has a 15-20 min period to recover from eating which uses more calories fueling the cycle. Once home we will have to find a few high calorie (lower in sugar) shakes recipes. If anyone has suggestions fire them across.
Laura is walking 3x a day around the floor. Probably 120 yards per lap. The recovery time for a single lap takes 10-15 mins. It is important to keep up physical activity and build strength. When at home a walk up and down the block 3x a day will be a requirement as well.
With some luck we may be home tomorrow or Tuesday. As long as there is no decline or any significant changes to her oxygen needs we should be good to go. As great as the team is here, home will be a welcomed change.
Her lung function will continue to decrease over time. We have been told that it will be a more aggressive time line that what we experienced in the previous transplant. The reason for this is that in the first transplant we were fighting CF and this time we are fighting chronic rejection. We hope to receive a call while at home but if we do not given the decline we will have to be admitted at some point. Fingers crossed for a call soon.
Thank you again for all thoughts and prayers. Always appreciated.
Cheers,
The Z's
Wednesday, October 3, 2018
1 Week In
Today was the 1 week mark. A mark they we did not expect a week ago. We had hopes of a release this week. As previously mentioned, if we could get her IRI number down (blood thinners) and off the high flow oxygen, we had a shot.
We learned that the drug they were giving her, Coumadin, has a reaction to Vit K. We discussed this as they put her on it and all understood that Vit K would negate the Coumadin. Everyone forgot that her CF vitamins contained Vit K and thus we lost of a week of progress. HUGE disappointment for Laura.
As we discussed going home the doctor's were ok with that but made it clear that if ANYTHING at all went wrong we would be back in the hospital until the transplant happens. That could be days, weeks or months. A respite at home would have been nice. It is still a possibility but the extra week in the hospital does make it harder.
On a positive note the antibiotics are doing their work on the pneumonia. The result does not really change how Laura feels but it does buy more time to find lungs.
They did increase her resting oxygen to 10 liters. This will bump her LAS (Lung Allocation Score) up from 57 but we have not heard what the new number is.
As always she is a stellar patient. Walking daily, eating, though she has no appetite and smiling and laughing. She has found the channel that shows every episode of Friends from back in the day. Pretty funny to re-watch.
Always, thanks again for the calls, emails, txt, letters...etc. It does help. #teamlaura is amazing. The funds raised from the shirts will make a huge difference in the lives of others that are going through this without the support network we are so lucky to have.
Hope to have news of a transplant soon.
Love to all
The Z's
We learned that the drug they were giving her, Coumadin, has a reaction to Vit K. We discussed this as they put her on it and all understood that Vit K would negate the Coumadin. Everyone forgot that her CF vitamins contained Vit K and thus we lost of a week of progress. HUGE disappointment for Laura.
As we discussed going home the doctor's were ok with that but made it clear that if ANYTHING at all went wrong we would be back in the hospital until the transplant happens. That could be days, weeks or months. A respite at home would have been nice. It is still a possibility but the extra week in the hospital does make it harder.
On a positive note the antibiotics are doing their work on the pneumonia. The result does not really change how Laura feels but it does buy more time to find lungs.
They did increase her resting oxygen to 10 liters. This will bump her LAS (Lung Allocation Score) up from 57 but we have not heard what the new number is.
As always she is a stellar patient. Walking daily, eating, though she has no appetite and smiling and laughing. She has found the channel that shows every episode of Friends from back in the day. Pretty funny to re-watch.
Always, thanks again for the calls, emails, txt, letters...etc. It does help. #teamlaura is amazing. The funds raised from the shirts will make a huge difference in the lives of others that are going through this without the support network we are so lucky to have.
Hope to have news of a transplant soon.
Love to all
The Z's
Monday, October 1, 2018
Day 6
Today Everett and I had a discussion on how long Laura had been in the hospital. The days roll on and blend together. It is like a cruise minus the fun, food, entertainment and floor mats in the elevator that tell you that it is Monday morning or Wednesday evening. It is only Day 6.
Day 6 was another long day. Laura is attached to a med pole with 3 IVs, saline and other drips depending on the day. All those hook into different regulating machines that manage the flow. They beep consistently, stop and beep more, all becoming a general annoyance. The yards of tubing do not make anything easier and again become a point of contention. Nothing is simple. Nothing is easy. Everything must be done with others. All the small things that fray the nerves every day.
We are trying to make a push to get home. This is going to be a push for a couple of reasons and the first is related to the DVT blood clot in her calf. They must thin the blood to remedy this for the obvious reasons. There are two forms of blood thinners that are reversible for transplant patients. The key is Coumadin. When we do receive the call for a transplant they can give Laura a drug that will reverse the effects almost immediately. Most others thinners do not react this way.
For Coumadin to work they need to attain a certain level in her blood. Thus far her body is not allowing that level to be achieved. She is on IV Heparin, and that is helping in the short term, but she can not go on on IV Heparin. The Coumadin levels are the first key to a release.
The second requirement is her current need for high volume oxygen. Given the condition of her lungs, any task requires a lengthy recuperation period. This high volume oxygen diminishes the time needed to recover. Recovery then requires less energy which requires less food. Her appetite is gone and the meds to increase that are only so effective. W
The issue becomes high volume oxygen is not available outside the hospital. If Laura can't operate without that is another barrier to exit. We are making strides on this one. Her recovery times are longer than wanted off high flow, here oxygen saturation levels are good without. Some little progress.
Throughout all of this the team at UCSF is awesome and we appreciate all they do daily. They are number one for many reasons.
Friends and family have been great distractions. We are behind on calls. texts and emails but I would image everyone understands. Thank you for all the notes, text, emails...etc.
The founders of #teamlaura have been amazing. The funds will go to great use. We have met others in our situation that struggle to make ends meet. We were able to help some last time and look forward to helping more families in the future. We have wanted to start a foundation post to the first transplant and this is the start albeit a bit later than planned. Thank you.
Going forward we are really in a waiting game. In the last week Laura's Lung Allocation Score (LAS) reached 57. At the time of last transplant she was at 60. We are in the game and hoping we receive a call sooner than later.
Again, thank you all.
Love, The Z's
Day 6 was another long day. Laura is attached to a med pole with 3 IVs, saline and other drips depending on the day. All those hook into different regulating machines that manage the flow. They beep consistently, stop and beep more, all becoming a general annoyance. The yards of tubing do not make anything easier and again become a point of contention. Nothing is simple. Nothing is easy. Everything must be done with others. All the small things that fray the nerves every day.
We are trying to make a push to get home. This is going to be a push for a couple of reasons and the first is related to the DVT blood clot in her calf. They must thin the blood to remedy this for the obvious reasons. There are two forms of blood thinners that are reversible for transplant patients. The key is Coumadin. When we do receive the call for a transplant they can give Laura a drug that will reverse the effects almost immediately. Most others thinners do not react this way.
For Coumadin to work they need to attain a certain level in her blood. Thus far her body is not allowing that level to be achieved. She is on IV Heparin, and that is helping in the short term, but she can not go on on IV Heparin. The Coumadin levels are the first key to a release.
The second requirement is her current need for high volume oxygen. Given the condition of her lungs, any task requires a lengthy recuperation period. This high volume oxygen diminishes the time needed to recover. Recovery then requires less energy which requires less food. Her appetite is gone and the meds to increase that are only so effective. W
The issue becomes high volume oxygen is not available outside the hospital. If Laura can't operate without that is another barrier to exit. We are making strides on this one. Her recovery times are longer than wanted off high flow, here oxygen saturation levels are good without. Some little progress.
Throughout all of this the team at UCSF is awesome and we appreciate all they do daily. They are number one for many reasons.
Friends and family have been great distractions. We are behind on calls. texts and emails but I would image everyone understands. Thank you for all the notes, text, emails...etc.
The founders of #teamlaura have been amazing. The funds will go to great use. We have met others in our situation that struggle to make ends meet. We were able to help some last time and look forward to helping more families in the future. We have wanted to start a foundation post to the first transplant and this is the start albeit a bit later than planned. Thank you.
Going forward we are really in a waiting game. In the last week Laura's Lung Allocation Score (LAS) reached 57. At the time of last transplant she was at 60. We are in the game and hoping we receive a call sooner than later.
Again, thank you all.
Love, The Z's
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