Please Help Jan Ziskovsky with Lung Transplant Recovery

March 29, 2021

We are now home! The week we were headed home, she no longer tested positive for the rhinovirus so she was able to return to the outpatient intensive rehab program. We will be going to Philadelphia weekly for appointments, rehab, standard labs and tests for the upcoming 2-3 months. We are both thrilled to be home. Jan is recovering well from the blood clots and has been very stable over the past 4 weeks. She grows stronger each day and while we know unexpected things will likely continue to happen, being home has felt more like we are moving forward with health and healing. As always we appreciate everyone's interest, prayers and support as she continues her recovery.

March 8, 2021

Jan had an eventful past 2 weeks. After the rash, her stomach tube clogged twice. Ultimately they replaced the tube. This was followed by a decline in oxygen levels at rest and even more so with exertion. Another ER trip resulted in a diagnosis of blood clots and 3 days in the hospital. She is back on blood thinners and doing much better. She will be on these for the next 6 months and likely will see a hemotologist in between for blood anaylsis to make sure she doesn't have a tendency to clot. We are grateful we caught it early, averted any other problems and that it can be treated with medication. We are likely looking to come home the end of March and continue in home rehab in Delaware. Due to continuing to test positive for the rhinovirus (the common cold and she doesn't have symptoms) she hasn't been able to participate in the intensive outpatient rehab in the clinic. We all had hoped that the virus would resolve but since it has not, the rehab we are getting at our temporary home (the Gift of Life) here in Philadelphia, can be done at our home in Delaware. We are anxious to get home. We will still be coming up to philadelphia once a week for dr appointments, labs, chest xrays, etc. She has made progress and this is a long process. The first year is the most critical as these new lungs heal and Jan gains more physical strength.

February 15, 2021

Because several people have been asking, we continue to live in Philadelphia and expect to be here until Mid March if not longer. We are staying at the Gift of Life Family House, a motel like facility that was built by the Gift of Life Donor Program to house transplant families. We are fortunate to have this accomodation. They have many COVID safety measures in place, the room is very comfortable, it is close to the hospital and clinic, we are meeting other families who have a loved one newly recovering, recovered for years, getting evaluated to be listed or are waiting for a donor. Our sights are set on April 1 to go home but if it were sooner we wouldn't object. Since she is newly transplanted systems are still adjusting and are vulnerable. We were particularly grateful to be up here yesterday as Jan developed a rash on her face and neck, after talking to the lung transplant dr on call, went to the emergency department to have her evaluated. In COVID times I can't go in which is hard (but we get it). After 5 hours she was released as they determined it wasn't a rash that was a result of something serious. It looks like hives and is better today. Logical culprits such as medicine, laundry detergent or food didn't make sense as there had not been any changes in any of these. We hope it continues to subside as it is uncomfortable for her (burning and itching). We are learning to adopt the mindset that any changes is reason to take actions vs. assuming it is nothing serious and rely on our home remedies. Thank goodness in this case it was minor and we can use cortizone cream for the symptoms but also glad we followed up just in case. Physically she is getting stronger, walking more and more and rarely using the wheelchair. Hopefully the weather will get better one of these days so we can take a few drives and explore the city.

February 9, 2021

On February 5, we hit Jan's 3 month anniversary since her transplant surgery. What a difference 3 months makes! While she continues to feel the impact of it all, the data and all of us (providers, me and new friends at the Gift of Life House) who see Jan can see the healing that is occurring. That along with doing some "normal" activities like going out for a ride on a beautiful sunny day really helps lift our spirits and to kow that we are that much closer to going home. She continues with rehab 3x/week, biweekly - weekly tests to make sure everything is as it should be. Follow up appointments with Drs who last saw her in the hospital have been very affirming as they see the improvements. Building strength and maintaining stability are the two main goals. We continue to take in the miracle of it all. Still absorbing how close to death she was and how amazing it is to have received this 2nd chance at life. There are adjustments and some days those adjustments are hard but in the bigger picture definitely possible to manage. Thank you all again for the many acts of support and love.

January 26, 2021

Another productive day at the outpatient clinic and rehab. Jan had a follow up appointment with the surgeon. She was amazed at how good Jan looked and sounded. Last time this dr. saw her, Jan was in the hospital struggling with nausea, a bit pale, not walking much yet, and struggling to talk post trach removal. She was really happy with how her sutures have healed and how her lungs looked on xrays and the cat scan. We are still amazed and grateful at her skill in being able to perform this kind of surgery. She said Jan was so fortunate to have received such great lungs (we don't know much yet about the donor but we do know they are young lungs). Today she walked 15 minutes on the treadmill and Wednesdays goal is 20 minutes. We are more hopeful that we could come home early March if things keep progressing as they are. Starting February 3, I'm taking FMLA so I can be fully available to support Jan in this phase of rehab.

January 23, 2021

Its been a good 3 days. Jan's nausea is finally manageable which makes a big difference in her mental and physical wellbeing. All systems are stable, and she had her soft start to outpatient rehabilitation today. She walked with a walker 400 plus feet for 6 minutes and found the rehab experience very positive. Next week she starts her rehab schedule of Monday, Wednesday and Fridays for 3 hours each time. She is feeling less exhausted each day. It is encouraging to see the progress she is making. Thank you all for your ongoing support!

January 18, 2021

We are day 10 post discharge and each day Jan is feeling better. We are crossing our fingers that we have the right medication combo to keep her nausea at tolerable levels (and maybe someday not at all!). She has had home nursing, PT, and OT at where we are staying until she officially starts outpatient rehab this Friday. Everyone who has come to our "home" (The Gift of Life House) has been very supportive and easy to work with. She has already been to several appointments for labs, chest xrays, pulmonary function tests and to see her pulmonologist. They continue to keep a very close eye on all of her systems. She has been off of supplemental oxygen for 4 days and is doing well maintaining good oxygen levels. She has the ability to do many things, but not the stamina so continuing to focus on conditioning and getting stronger is the goal. We are all getting used to her medication routine, and feeling less overwhelmed by that process. So overall making good progress. Her pulmonology ARNP reminded us that this recovery is a long haul effort so we are learning to appreciate a day that goes well, and know we can make it through days that are harder.

January 11, 2021

Jan was discharged on Friday, January 8th! We are staying at the Gift of Life Family House for this next chapter of intensive outpatient rehab. Jan is really happy to be out of the hospital and exhausted from the transition (which included a few snafus the day of discharge). Day three went much better and she was able to get a lot of rest. Her medication treatment schedule is impressive, all administered through her feeding tube. She recovered well from the recent aspiration event and taking many precautions to avoid that happening again. Nausea continues to be a challenge. Some days are better than others. Its been one of the hardest parts of her healing. She is walking with assistance, on 1 ml of oxygen with the goal of being off oxygen entirely. She is still getting used to breathing with these new lungs. No signs of rejection, and everything else is healing well. While we are anxious to get back to our Delaware home, this home is very supportive and comfortable for this next stage of recovery.

January 6, 2021

It' s been a very productive and exhausting two days for Jan. The lung transplant team coordinated multiple tests and processes Monday and today so that Jan could be discharged on Thursday. The good news - the swallow test was much improved from when they last did it, the "sniff" test showed her diaphragm is working properly, the lung biopsy results showed no signs of rejection and wounds are healing as they should. Unfortunately the barium swallow which tests her esophogus functioning and level of reflux was not so good so she will remain on the feeding tube for now. She is a "fresh transplant" patient (a term I heard for the first time by several providers today) so they want to avoid all risks of reflux aspiration to her lungs. They will continue to check this as she continues in rehab and seem confident that it will eventually heal. Tomorrow I go for a 3 hour training at the hospital so I know how to help her when she is discharged. The best part is that I get to see her for the first time since Thanksgiving Day. She is very ready to be out of the hospital as that has been her "home" in a variety of locations since September 22, 2020. One last test tonight of a sleep study to assess her breathing and O2 levels when she sleeps. It truly takes a team of providers from Pulmonologist, nutritionist, pharmacy, home health care, case managers, social workers, nurses, ARNPS, PT/OT/ST to coordinate a lung transplant discharge.

January 3, 2021

The fluid nature of this recovery continues. Jan has been doing really well in therapy (her pulmonologist told her today that the rehab staff was bragging on her). Unfortuately on Thursday evening she had a aspiration event due to acid reflux and nausea and is now back in the Hospital of University of Penn. We have been reassured that this sometimes happens and they are treating her with antibiotics. She is already feeling better. Therapy will continue in the hospital and as long as she continues to make progress she will likely be discharged from there rather than returning to the rehab center. She had several tests scheduled to be done this week in the hospital anyway so it seemed to make more sense to just remain there vs. going back and forth. Discharge is still tentatively scheduled for this Friday but prepared for that to be delayed if she needs more time to recover from this event. A safe discharge is the goal so we hopefully don't have to return to the hospital. I am back in Philadelphia after a week back home, ready to have her with me at the Gift of Life Family House. She is ready for the same! We will know by the end of the week if she will remain on the stomach feeding tube but we are expecting that to be the case. Thak you all again for your ongoing support and care.

December 28, 2020

Today is day 10 of rehab. A week ago Jan could barely walk 10 ft, this weekend she walked nearly 80 ft. Seeing these tangible signs of progress is so motivating. She is seeing the prize of discharge to intensive outpatient rehab with each day of improvement. They have tentatively set January 7th as the discharge date but it will be reviewed this Thursday to see if that is still on track. I still get to virtually participate in her therapy sessions as we choose. They have been very accomodating with that. Clinically she is doing well recently finding a balance between all of the things they check for daily. She is scheduled for a bronchial scope and likely another swallow test this week. We are anxious to see if the swallow test shows improvement. We aren't anticipating the stomach tube being removed for a couple of months but you never know. They keep a close eye on her new lung status, regularly receiving chest xrays and periodic bronchial scopes. She's tolerating the new feeding tube formula and the alternative rejection medication since the other one was causing so much gastric problems. We were able to celebrate Christmas via Zoom with her mother, our daughters, their partners and the grandchildren. Not the same as being together in person but still wonderful to connect. There are good and not as good days but all days she has been able to engage the therapy and improve from the day before. Recreational therapy has been particularly nice as she receives Reike treatment, a nice break from the more physically taxing tasks of PT, OT and speech therapy. Today I was able to facetime with the attending Dr. who patiently answered all of my questions and said that Jan is doing well and the team is happy with her progress. A new day, new opportunities for healing and building strength and one day closer to discharge whenever that is.

December 24, 2020

Jan had another good day. OT and PT again. She was able to time her meds so she didn't have to either of them and feel nauseated. She walked 60 feet with a walker, climbed two steps twice and rode a version of a stationary bike for 10 minutes and a variety of leg and arm exercises. These are all gains from the previous days. I was able to join PT virtually today and it helps us both feel part of her rehabilitation. Of course I wish I was there in person but at least I can be a part of the process in some way. Everyone is evaluated by a neuropsychologist which of course I'm in favor of and it was nice to be validated for the various experiences one has in this process and given what she has gone through she is fully oriented, tracking and remembering well. When the neuropsychologist asked her about the date she came to Penn Hospital I was glad she wasn't asking me because I could not answer that off the top of my head- too many things have happened in between. She is feeling more encouraged each day even with the struggles.

December 23, 2020

What a difference even 24 hours can make. Yesterday started out hard due to another bout of nauseau but today started out on a better note and continued the rest of the day. She is noticing improvements which is motivating. She is learning to breathe deeply and slowly building strength in every part of her body. Its been a strange experience to not be able to easily do things that she did prior to being in the hospital and surgery. But gradually it will return and its learning to take it step by step. I'm reading a book where the author, Lori Gottlieb says, " Just take a step. One step. And when you've taken that step, take one more...Most big transformations come about from the hundreds of tiny, almost imperceptible, steps we take along the way." The rehab staff are very positive and affirming. I have virtually participated in all of the therapies which has been encouraging for us both. She walked today and climbed a couple of steps along with leg and arm exercises....it was a good and effortful day. The kind where you are tired but a good tired. We were reflecting on how remarkable it is that she received these lungs so quickly and can't find the words that express the enormity of our gratitude for this gift.

December 21, 2020

This is an update from Jan -

Happy Solstice everyone! I wanted to thank everyone for all of your support, good wishes, love, prayers, energy and generosity. Your kindness has helped Rosemary and I return towards the light in our lives. Because of your enduring support and caring we have had the ability to find strength and the inner energy reserves needed to walk this territory that has been unexpected and certainly very challenging.

Thank you from the bottom of my heart for all you have done and all you have been to and for us in this time.

And a big thank you to Rosemary for all that she has done to help keep everyone up-to-date and in touch when I have been so unavailable.

Blessings to all of you and may you have a wonderful holiday season in this strange time. -Jan

December 18, 2020

First full day at inpatient rehab went well. Small things become important like a new gown with a different pattern (she eventually will get to wear her own clothes), having a large room to yourself (one plus of being a transplant patient), and less noise. On her way to get a chest xray she saw downtown Philadelphia at sunset for the first time. The staff have been kind and supportive. Everyone is amazed at how strong she is considering what she has been through. "We know you feel very weak but actually you are doing well considering everything you have been through" is a common comment made to her. I think she is starting to believe them. Some nausea today but feeling more hopeful that will improve and it continues to be much better than it was a week ago.

December 18, 2020

Jan moved to inpatient rehab today at Good Shepherd Penn Rittenhouse Acute Rehab Center in Philadelphia. This is a big step forward. They will continue to provide the medical care she needs but the focus will be on rehab receiving physical, occupational and speech therapy (for the swallowing). She still can't have visitors due to COVID but we keep in daily contact with facetime. Her nausea continues to be improved and considering everything she has gone through the admitting dr. commented that she was remarkably strong. Tomorrow they will evaluate her and determine the treatment plan from there. What we know for sure is that she will have 3 hours of some kind of therapy 5 days a week. And added bonus is that she can wear regular clothes.

December 16, 2020

While there seems to always be "stuff" that comes up, the good news is that Jan's nauseau is greatly improved and has likely been caused by one of the medications she has been taking. Fortunately they have an alternative one they can use. Still waiting on insurance authorization before she is cleared to go to rehab but that will likely happen tomorrow after the snow storm. She did great in PT this am and she said it was okay for me to report that she cried when she got to eat applesauce. She can have that now whenever she wants it. After over a month on no food (except feeding tube) eating something is really exciting. Rehab will involve 3 hours/day of PT and OT. While it will be hard work, the goal of being out of a facility will be closer in sight and pretty motivating.

December 15, 2020

It's hard to believe its been 5 days since the last update. As was the case in the last update a lot has happened in those 5 days. The roller coaster continues. The up continues to be her new lungs doing well with functioning and healing. She is barely on any oxygen now which is remarkable considering the enormous amounts of oxygen she was on pre surgery. The down has continued to be the nausea that intensified after her stomach tube placement. Unfortunately it wasn't placed correctly the first go around on 12/11 so they had to go in again on 12/12 to place it correctly. The recovery from that was more painful than what we anticipated (although that was probably naive on our part), but by far the most disabling has been the nausea. This has interfered with engaging PT at the level everyone would like in order for her to regain strength. I'm happy to say that with some medication changes there has been some improvements with reduced nausea. They are now cautiously planning to have her discharged to inpatient rehab this week. Going to rehab is one step closer to "coming home" (home in this case will be an airbnb for a couple of months). Other ups is that her trach is closed up, her voice is getting stronger and she safely ate some applesauce today. Considering where we began she has come a long ways even if there is a ways to go yet.

December 10, 2020

So many things can happen in a few days. Ups and downs but still forward. On Monday they did the swallow test which she partially passed but not enough to safely eat which includes aspirating risks and making sure she is gettings lots of nutrition for her new lungs and to build strength . As a result today she is having surgery to move the feeding tube from her nose to her stomach. She will likely be on the stomach feeding tube for a couple of months while they do swallow therapy with her. She was happy to have the change in getting the tube out of her nose. She is also hopeful it will make her less nauseous. She had a bronchial scope on Tuesday. The procedure was quite unpleasant but the results were very positive. They said her lungs look wonderful and the places they attached the lungs looked pristine. No signs of infection or problems with the new lungs. Due to the stomach feeding tube surgery she will not be going to inpatient rehab until Monday as the site needs time to heal before they can attach the tube and the feeding formula. We were both a little disappointed with the delay but understand this is a process and safety is the priority. The biggest challenge is feeling physically miserable (primarily due to the nausea and other digestive issues) while also trying to physically do the the task they ask of her for physical and occupational therapy. Praying that with some of these changes that will gradually improve and these tasks will become a little easier. The staff continues to be very affirming with her progress. Just wish her progress came with feeling less miserable.

December 8, 2020

Yesterday they removed the trach collar and she is talking on her own! It is a loud whisper but will gradually get stronger. She has supportive O2 through the nose cannula and that is improving as well. She finally got a midline IV after a 9th failed attempt with the regular type so that brightened her day! Waiting to hear about the swallow test but it is likely she will need more therapy before she can safely eat real food. Tentatively looking to transfer to inpatient rehab this Friday. With Jan talked to the Physical therapist on FaceTime today and he said Jan is doing really well with her strength. Good for her to hear as it is hard not to compare herself to the strength she had prior to August and this surgery. Rehab will likely be 2-3 weeks.

December 7, 2020

Healing from a lung transplant is a complex process involving a lot of people from many disciplines. Each try to troubleshoot issues that arise some more successful than others. Three issues continue to be a challenge - she's on her 8th IV in the past 48 hours (hoping for the IV experts tomorrow to place a midline), nausea which makes everything seem miserable even if everyone is saying you're doing great and finding the strength to do the walking, standing & sitting in her chair they want her to do each day. On the upside her voice is getting stronger, tomorrow they are hoping to reduce the size of the trach, and fingers crossed that she'll pass the swallow test planned for Tuesday or Wednesday so she can move toward eating real food. Hopefully that will resolve the nausea issue. Understandably dealing with this day after day gets discouraging so any encouraing words and thoughts you want to send her way would be appreciated.

December 4, 2020

Yesterday, Jan surprised me with using the new trach device that enables talking. It was so nice to hear her voice even in a whisper when I haven't heard it since the surgery on November 5th. Even more wonderful for her to be able to speak given her current circumstances and my inability to be there. Gradually she will be able to independently put the device in and out (initially they require the nurse to do this), her trach opening will get smaller and smaller and eventually she will no longer be using it. I celebrate each of these steps.

December 3, 2020

Putting in an IV is quite the feat when dealing with Jan's veins- 4 attempts at 4 am before they achieved a good IV. Accomplishments today - walking with support down the hall. Next time I'm going to ask them to videotape that! Moving along with fitting her trach with the device that will make it possible to talk a little bit louder, and sitting in the chair a couple of times. She's also started watching a little TV which means she can focus and concentrate better. When we facetime while she still looks tired (still not sleeping the best....of course if you are getting poked at 4 am you might not sleep very well) she appears more alert and active. She had a few choice words for the 4 am bit which is also a good sign. Lol. A rough day yesterday, a better day today with a few bumps and overall continuing to heal. The nurse told me that she is physically strong and doing quite well.

December 2, 2020

First, thank you all for your ongoing love, care, light and prayers for Jan and her recovery. It continues to mean a lot to both of us. Yesterday was a rough day for a variety of reasons but fortunately none due to a crisis or overall concern about her status and progress. She will be having a bronchial scope this morning (she's had many of these) to check out her airways, lungs, etc. before they move forward with reducing the trach opening. They are very cautious, protecting her new lungs every step of the way and we are appreciative of that. She continues to rest better at her new location and I have had opportunity to facetime with one of her nurses to get updates. Since it is hard for Jan to talk, I really appreciated that opportunity and was able to get a fuller picture of the treatment plan and direction. Hopefully today will be a better day in terms of her comfort.

December 1, 2020

Jan’s move to the Step Down floor not only means she’s making progress it has also been kinder to her spirit. Much more quiet than ICU. She was in a chair three different times today, and they took out the trach! She said she can breath much easier without the trach. I saw her on FaceTime today and she looked more rested. She’s hoping to get the feeding tube out soon. Her nurse said she had a really good day! It was a good move!

November 30, 2020

Jan was transferred out of the ICU tonight to the Step Down floor where she began when she first came to Penn Hospital. She has been off the ventilator over 100 hours. They will now switch her to supportive oxygen as she continues rehabilitation. She sent pictures of her new room. She has a window and she texted that it was quiet and dark. Maybe she will finally get a good night's sleep. ICU is not a quiet place. In the midst of the difficult parts we try not to lose sight that she is making progress. The focus now will be building up strength, eventually getting off the feeding tube and eating regular food. We do not know how long she'll be here but the final step will be inpatient rehab before leaving the hospital, followed by outpatient rehab. Another step in the right direction which is very exciting.

November 28, 2020

Pre transplant we were told that recovery is not unicorns and rainbows. Transplant families at the Gift of Life House said it will be a roller coaster. We know the reality of that over the last 48 hours. In the bigger picture she continues to make slow and steady progress which we do celebrate. And day to day there are little things that are hard- nausea, exhaustion, unexpected desaturation, blocked trach ( that scared us both but the respiratory therapist did her magic and got it unblocked) lots of pokes, X-rays, ekgs... well you get the picture. Today they started chest PT which is pounding on her back to loosen mucous which they feel was partially responsible for the desaturation. Breathing deeply is still a challenge which also is contributing. She has now been off the ventilator over 72 hours so that is great. These other things are to help her to continue to make progress. Each day they will get her up more and in general get her moving more. The nurse manager today told us that everyone loves Jan.

We received hard news last night that due to Increase of Covid and anticipating even more after Thanksgiving the hospital has shut down visiting hours for the time being. Not the news we wanted to hear but also not unexpected. It would be awful for anyone in the hospital to get Covid let alone people on the ICUs. I was there all day and will stay in Philadelphia for when they open up again. Thank goodness we have FaceTime. She can’t talk yet but we can at least see each other.

We continue to feel optimistic even with the hard parts in between. Please send good vibes and love to Jan that she knows in spite of being alone she is not alone.

November 26, 2020

Whoo, Hoo....She exceeded her goal of 24 hours off the ventilator and when I left at 6pm today she was at 34 hours and likely will remain off it. She is gaining more and more strength and impressing her nurses, respiratory therapist and pt/ot. I witness her improvement and tell her each day. I imagine it is hard for her to see it since everything is exhausting to do. She is gradually getting used to her new lungs and breathing stronger. She is also sleeping better. Hopefully she will be moving to the Step Down unit soon. Feel free to text her as she can read them now. She is not quite ready to respond but that will be coming soon. This thanksgiving, we are thankful for so much but particularly for new lungs, new opportunities, our family and amazing old and new friends & coworkers.

November 25, 2020

Progress continues. Small and meaningful steps forward. Challenges in between but nothing insurmountable. Being the introvert she is , Jan would probably prefer a few less people, less noise and fewer interruptions, everything ICU isn’t! We particularly measure progress with how much time off the vent- 18 hours yesterday going for 24 today and possibly entirely off by the end of the week/weekend. Ventilator off leads the way to feeding tube out, moving to another floor and more activity. I say this every time because she is told this daily by the staff that she is doing an amazing job. Thank you all again for your ongoing love and care.

November 22, 2020

Today we had a visual of her progress with lung X-rays from 4 days ago to today. Everyday her lungs get stronger and her breathing easier. Getting used to lungs that actually work is like going from your old car where you have made adjustments for the things that don’t quite work right to a brand new car where everything works but you still have to learn how to use it. She is learning and figuring it out. She is communicating more through writing which also means she’s getting stronger with the use of her hands. Every is stable and moving forward. Music continues to be a good distraction and mood booster. We are particularly liking Imagine Dragons that have many lyrics that seem fitting to our circumstances. She’s tired of the feeding tube which probably is a good sign. Ready for real food but first things first- completely off the ventilator then a swallow test then if that goes well food in some form comes next. Such great cheerleaders up here. It make a difference to be surrounded by positive people. Thank you all for your ongoing cheerleading for her!

November 22, 2020

Music Therapy today- Passenger and Imagine Dragons. A nice afternoon.

November 21, 2020

I learned today that Jan was off the ventilator for 17 hours yesterday. Today she is tired so the goal is 14-16 hours. She keeps meeting daily goals. She is doing so well which is validated by the drs and nurses. She is more and more aware of everything she has been through and is taking it all in. It takes a lot of patience, fortitude and humility to accept help, to engage the healing process when it must feel slow as molasses. She laughs when we are all over the moon happy that she stood today with less assistance than yesterday, when she can push the call button on her own, and is asking more and more questions about the process. The providers here are so willing to answer all of our questions. My sister Rachel reminds me that the body wants to heal and I know that’s true. While we know it can’t always accomplish it, I am grateful that Jans body is moving in that direction.

November 20, 2020

Jan has had a busy day with physical therapy this am doing squats and other exercises, being off the ventilator (today’s goal is 12-14 hours) and gaining more and more strength in her upper body. She finally slept well last night. She is pretty tired this afternoon and is now resting. The respiratory therapists, the nurses, and drs continue to praise her progress! Everyone is so supportive to me as well patient in answering my questions, giving me updates and explaining what they are doing. Her white blood count is coming down. Cultures have all come back negative.

November 19, 2020

“She’s really strong”. One of her drs just made that comment when she heard how long Jans been off the ventilator. I already know thats true but so nice to hear one of her drs say it. This process is not for the weak of spirit. She’s been through so much and while there is more to come, hopefully not as scary and dire. She is also fiercely

Independent which will serve her well while makes it hard to be patient with the process of waiting on others for help or not being able to do the things you are used to doing. It’s nice to see her motivated to do more and more. This is tiring work. Thanks for all the cheerleading you do for her!!

November 18, 2020

11/17/20- it was another day of making progress- 10+ hours off the ventilator. She was up in the chair a couple of hours as well. Her white blood count was elevated but so far no infections have been found, always a risk with surgery and being in the hospital. They started an antibiotic prophylactically so hopefully that will make a difference. She will remain in the ICU until the ventilator is off 100% then moved to a step down floor. One of the transplant drs today said her progress is remarkable. I’ll take that! I can still visit for which I am grateful.

November 16, 2020

Jan keeps making progress! Something new accomplished each day. Today 7 hours off the vent, sitting on the edge of her bed and standing. All the providers are such cheerleaders for her. It’s impressive to watch them all do their particular part of the care. Today they also added PT & OT. I feel lucky given Covid increases that I can still visit. She is talking a lot. I just wish I read lips better. It’s particularly nice to see her not struggle to breath!

November 15, 2020

The big news today is that Jan was off the ventilator for 3 hours! She was quite awake during my visit, trying to communicate with the trach in. I’m getting better at reading lips.

November 14, 2020

Jan continues to show progress. She came into the surgery very sick and weak so rehab will be a slow process but the Transplant Drs said she is moving in the right direction. She now has a tracheostomy for ventilation assistance which allows more mobility and no sedation. The nurses on the ICU call her a rockstar! Goal is to get her stronger and weaned off the ventilator assistance. Grateful each day for stability and progress.

November 13, 2020

We want to thank Foundation 2 agency and staff who have generously supported Jan and I through calls, prayers, care packages and PTO donations. Our unpaid work leave will be greatly softened by these kind acts. We are truly humbled and grateful!