Keeping calm

 Yesterday (Monday) was a bit long, as I did not sleep well. I had my plasma pheresis in the morning and then the final rat-g treatment in the afternoon, which led to a much needed 3+ hour nap. Peter was able to be here for part of the day, which was nice. I had a short PT consult, and they just suggested doing sets of laps throughout the day to keep moving. The great news is that since I can do the laps, I don't need to get heparin shots every 8 hours, which I greatly appreciate as I'm really black and blue from all of them. I worked on keeping calm with sewing, and was able to get all my sub-pieces sewn together. 

I got an uninterrupted 6 hours of sleep last night, which helped me feel much better. I was out of bed by 6 (vitals were at 5:30). I did my CHG bath (special antibacterial wipes they give me warm), brushed my teeth, and got ready for the day with new compression socks, underwear, and deodorant. It seems silly, but trying to do something "normal" is helping me to cope. My heart rate was still pretty high, and it went up into the 140's while I was doing my bath and then the 3 laps around the unit.  It did come back down to the 120's, where it had been, afterwards, but I was not sure what to make of it. 

I noticed that my PICC line had some blood seeping around it, and it was really sore. They called in a consult to take a lot. It is working fine, but we did a dressing change to clean it up and it feels much better. Then it was time for my 3rd day of plasma pheresis. The transplant team is wanting to do these 5 days in a row, but the pharesis team says they normally only do 2-3 days in a row and then you need a break. They think the blood around the PICC is because my clotting factors have gotten thrown out with the plasma the last few days. Due to this, I got back some donated plasma today to help even out my body. They took a blood sample to look at, and once it comes back we will know if they are doing two more days in a row, or if I need a day off to get a different med, then the last two days. 

Transplant has started to get me back on the meds I will go home on. They started me on a new med that will (hopefully) help my heart rate come down to a more normal rate. My heart is beating in a normal rhythm, just really fast, which is an indication of the damage. Since they antibodies have been removed and aren't attacking the heart, we are hoping that my heart will start healing and so some improvements. If this medicine works, then once I'm done with the treatments transplant will be comfortable sending me home. If my heart rate stays high, they will want to do a cath to look closer at the heart before I leave. Either way I would have follow up echo and cath/biopsy in 2 weeks to see how my heart is progressing. 

I did a good amount of reading today, and I was able to finish sewing the base of the sewing mat I'm working on! The staff seems really interested in my sewing set up and keep popping in to take a look.  It obviously still needs to be finished, but its a good start. Surprisingly, no one has commented on my little iron (thanks Sarah and Karen), and I'm hiding my rotary cutter except when actively using it.

We decided that Peter would take the dogs to doggy day care and board them tonight, with day care tomorrow as well. We're hoping that will give him some time to recharge too. He was here for hours in the morning/afternoon, and is spending the night and will be here tomorrow. It will be good to get some time together when he doesn't have to rush back to the pups.  My dad is also driving in and will be here tomorrow afternoon. I'm having everyone be super careful, and given my lack of immune system even I will be in a mask with visitors now. One thing the team did tell me is that once I get home, I have to be super careful for at least the next month as I'll be really, really susceptible to infections. 

I think I'm doing a decent job keeping calm between my sewing, listening to music, reading, looking at your photos, and having some phone calls. I'm not always the most patient as a patient, but I'm working on it. I've also unplugged from work and am just focusing my energy on healing.  Here's hoping I can keep that up.  

Treatment and Distraction

 Today went well. I was woken up at 6ish for vitals, and I actually got some sleep so felt awake.  I did a CHG bath (antibacterial wipes that are safe for the lines I have), put on a new gown, and I felt awake.  I took out my cutting mat and some fabric and started working on a sewing mat with pockets for my guild swap in a month. I made some good progress, had breakfast, and then it was just time to wait for the plasmapheresis.

They were planning to come at 9am but had an emergency patient so got to me about 11:45. That worked perfectly with Peter getting there. I wasn't sure what to expect, but it went well. They hooked me up to two tubes through the vascular catheter in my neck - one to take the blood to the machine to filter out the plasma, and another tube with 3 components they put back in - my filtered blood, some albumen which is a plasma substitute, and some calcium to keep my system happy. I responded well so it only took 68 minutes instead of 90-120 because they could run it at a good rate. We were able to eat lunch while it ran, so that was good.

I was a bit tired afterwards, and they needed to start my other treatment really quickly due to a surprisingly short timing window. So, I stayed in bed and let them do the pre-meds and then the rat-g treatment, which ran 6 hours and ended about 9pm.  I even got in a good nap in the middle of that. This worked out perfectly, as it needs 12 hours optimally before we do the next plasma pheresis.

My understanding is that my body is making antibodies that are attacking the heart, so the plasma pheresis is removing most of them, then the rat-g is attacking the cells in my body that would be making more antibodies. The goal is that less antibodies attacking, the more my heart can heal. The downside is that this is going to wipe my immune system down to about 0%, so with visitors (even Peter and maybe even the nurses), I'm going to be wearing a mask in here along with everyone else. 

This is very serious, but my doctors are hopeful. The hardest part is that we just have to be patient and wait, as we won't really know how well it worked until at least the end of the week, and most likely further out. Given this, my plan is to distract myself as much as I can. I was able to start sewing some today, which is a perfect distraction for me. It isn't strenuous, it engages my mind and my hands, and I feel productive. 

I was able to do 9 laps today (3 laps, 3 times! 15 laps around the unit is a mile).  My breathing is good, heart is just working really hard. They put in a PT consult for tomorrow so I can get an idea of how much to try to do each day to not get deconditioned but also not push too hard. 

Thanks to everyone who reached out and sent me lovely videos and pics of kids and dogs. It is nice to see others having fun and have things to look forward to. There most likely won't be much changing each day, just having multiple long treatments, plus possibly having to take a day off every few days to give my body a chance to catch up. We will be keeping you posted!

Happy 1st Heartiversary

Jodie: My transplant was on a Monday last year. Tuesday is my clinic day, not  because it has to be, but because it’s the day that has worked best for us. When it was time to schedule my 1 year follow up, since the 23rd landed on a Tuesday, I decided it was somewhat appropriate to have the appointment exactly a year later.

Peter: This past year has been a long one. It’s amazing what can happen in a year, and we’re so blessed to have made it to this milestone in Jodie’s recovery. She has been so strong and has improved so much. 

Jodie: We have both been contemplative the last few weeks. Sunday was hard, realizing that if we were going by days of the week, it was one of our hardest days. Yesterday was even tougher, being the actual anniversary of the night before. We both worked, took Bosun to puppy class, and on the way home reflected. Neither of us slept much that night a year ago. I had every worst case scenario running through my mind, and was terrified I’d never wake up. And knew if I did I’d have to be all alone in the hospital.

Peter: Last year today was rough... I had stayed up all night waiting with Jodie before she was taken back to surgery, got a couple hours of fitful sleep in the waiting area, and waited around all day until receiving news. The nurses and staff were kind enough to help us stretch some of the ‘new’ COVID restrictions and rules, since we knew that once she made it through surgery, due to the  restrictions I could not be there when she woke up in with her new heart.

Jodie: With all the memories heavy on our minds, it’s also made the reality of today a little sweeter. We found a pet sitter for Bosun and dropped him off on our way a little after 7am. We parked near the main hospital entrance and walked in, just like last year on March 7th. I thought it made sense to take the same picture going in.

Walking through the halls and getting to clinic, there are so many memories. Once we got to clinic, it turns out that the same doctor who did my first clinic visit post-transplant was there today. We had a good check in, and decided that I have 6 months to try to get my weight more under control before we try anything else. Then I got an X-ray, and we made our way over to the cath lab. On the way this sign caught my eye, with the tag line “a year like no other.” I couldn’t help taking a photo with it.

Peter: After over a year of going back and forth from the hospital for Jodie, I would have hoped some of it would become routine... Instead it feels like I'm regressing, getting flashbacks to days spent fretting and worrying and praying - alone in the waiting rooms. Days where I spent every second waiting for a text or call with an update. Today was especially difficult, feeling refective about a year ago bleeding over to my feelings now. I was so anxious, and felt so overwhelmed. I'm so glad that I have Jodie to keep me levelheaded. I'm so blessed to have her in my life.

Jodie: If I’m being honest, it wasn’t much easier for me. We got to the cath lab before 10 and I was ready to go back at 11. For the first time, the drs didn’t talk me through what they were doing, and the meds made me so sleepy I didn’t speak up. My anxiety was through the roof. Then after the two hours laying flat post procedure, we still had to go to echo since they hadn’t come to us. I almost said no - I was still keyed up, tired, grumpy, hungry. I relented as it was on the same floor, but really couldn’t wait to get home. We finally left after 4pm. 

We got home and Peter just let me relax. He made dinner, then headed out to get bosun. Peter then surprised me with a red velvet cake. We both had a celebratory piece, and are having a quiet night with sleepy pups and purring cats. Last year I couldn’t picture what a year later would look like. I don’t know what another year will bring either, but I am hopeful.

Peter: It has been a difficult time, but we persevered. We can’t wait to celebrate future heart-birthdays with our family and friends. Thank you all for your prayers and support from afar this year. God bless.

6 weeks post-transplant

It has been 6 weeks post transplant. 

Jodie: We had a long day in clinic yesterday, and everything is looking good - medications are were they need to be, no signs of rejection, and I'm healing well.  Multiple nurses/other people who work with heart transplant patients made comments yesterday that I look like I am much further out from transplant that I actually am, which is kind of cool. Peter and I got to talking about how different things are already.  We both have different things we have noticed as this time has passed.  We thought it would be interesting to compare some things we are noticed since surgery, to how they were before surgery. 

Peter: Even going on walks with Jodie and Stella has changed dramatically. Over the past few years, Jodie and I have done a few short hikes and long walks with the dog, but the pace was always slow,  we needed regular breaks, and we needed to pack water and snacks. Just before Jodie went in, she had difficulty with even short walks. Now that she's out and six weeks past surgery, she books it on our walks... She doesn't have to tell me to slow down at all. I carry a folding stool for her since we still need to pause occasionally, but for less time and less often.

Jodie: It's been like night and day as to how much I can do.  For years now, any time I've tried to do any type of exercise, I've been stopped either because I was short of breath/out of breath (by walking at a brisk pace), or because my heart was working too hard and could not pump enough for me to have the energy.  While I still have spurts of energy and then times I'm more tired, my heart isn't stopping me at all!  When we go on our walks, I do sometimes breath heavily, but I have not gotten out of breath to the point of needing to stop once. Right now it is more my legs feeling sore, for lack of using the muscles as much daily, that is stopping me.  The other thing that has surprised me is how quick, in some ways, the recovery has been. 

Peter: Fortunately, Jodie has been able to pick up doing a lot of the house stuff as long as I can help with some of the heavy things or things out of reach. Unfortunately, I will have to do the cat litter for as long as we have cats (and there will be no cats after these). But that is a small price to pay considering all of the amazing things that have come and will come from the miracle of this second heart.

Jodie: When I get into bed at night I realize that now I can again get in multiple ways, and if I'm not comfortable I can move myself to re-adjust and get into a better position.  Just 3 weeks ago I could only get in one way, and either had to get all the way up or have help to re-position.  This is the same with getting up and down from sitting, being able to bend over, etc.  I still shouldn't lift anything really heavy, but I can move some things that used to strain my chest.  While I know that this has in some ways been a gradual change, it also feels like it just comes on really quickly.  When I'm awake and have energy, I feel fully like myself and sometimes get restless at being at home without a ton to do.  And then I do the chores I can, some stuff on the computer, maybe some sewing, and next thing I know I'm tired.  Not really needing naps anymore, but still needing rest times.  This dichotomy of feeling awesome and then feeling more tired reminds I'm healing and need to be patient.  But the times of feeling awesome are really hopeful, as I am imagining that that could be how I feel most of the time once I'm healed. 

One month post transplant!

Wow.  It is almost unbelievable that it has been one month since the transplant.  So much has happened, with two weeks in the hospital, and now two weeks home.

One month ago, at this time, Jodie had been brought out of the procedure room with her chest still open, hooked up to artificial means of running her heart and lungs, and stilll sedated. Each week since then has been full of leaps and bounds towards recovery.

Week one after transplant brought with it Jodie getting patched up, unhooked from major support machines, and already walking down the hall of the ICU! Week two included stepping down to the main hospital cardiac care floor, lots of tubes being removed, being allowed to eat real food again, getting unrealistically challenged to walk a mile a day (and doing it anyways!), and finally being discharged back home!

Week three started with us getting used to being home together, and reveling in the companionship after so long apart. Jodie had some ability to move around, but needed her walker and lots of rest. Week four included the incredible joys of compression socks, and much improved mobility. Changes in medication made things much more comfortable. An the follow-up biopsy appointment results showed zero rejection!

From the personal side, Week 1 was tough. In the hospital, I was in and out of it and having very short times where I had the energy to call Peter.  For Peter, it was nerve wracking and he was calling the nurses every 3-5 hours hoping for updates or results. Week 2 I was a little better in terms of being able to hold up my phone, so I got to "see" Peter a lot more.  As the week went on and I felt better, I got frustrated with not being able to have anyone around - it was lonely and I really just wanted to go home.  For Peter, it was much less stressful in terms of worrying about me medically, but significantly more time spent missing Jodie and feeling lonely.  We were both ready for me to come home.

Week 3 was both wonderful and hard.  It was so, so good to finally see each other again and get to be home.  It was hard because there was still so much I could not do, and Peter had to really step up to help me and be extra hands, while keeping up the house and working from home.  Week 4 we started to get into more of a rhythm, and can recognize patterns.  As I've been stronger, I've been able to help Peter a little with things like laundry and dishes, which helps me feel more like myself.  There is still a lot that Peter is having do, as I have limited energy.

Things are finally beginning to feel more streamlined as we recognize what we need each other to do. We have a clinic appointment with biopsy tomorrow, followed by a post-op appointment with the surgeon. We are hopeful Jodie's staples and stitches will be able to be removed. After this we will be moving to every other week follow-ups. Jodie will continue to be considered on "quarantine" as the doctors have all instructed to keep her suppressed immune system as seperated from whats going around as possible.

God bless and thank you all for your support

P.S.
Some folks have been askign for the video of my new heart beating in its transport box. You can see a video of it in action here. Warning, if you're squeamish and/or don't enjoy seeing organs doing their thing, we would advise passing on this.

Settling in

We are definitely still settling in after almost two full week of both being home. Overall, it is great to be home together, and while we are still working out the details, we are so happy to be able to be in the same place and supporting each other.

Jodie: I'm starting to get into a rhythm with waking up, pill times, morning nap time, outside walks, etc.  The afternoons and evenings tend to be more reliable than mornings. I'm happy to say that with the med changes, I've lost a lot of water weight so my swelling is down and I'm much more comfortable, which makes everything easier

Peter: It's getting better, but it is tough to get a balance of taking care of Jodie, taking care of the pets, taking care of the house, and a full day of work. However, the better Jodie is getting, the easier my parts get. It is remarkable seeing the visible changes before and after surgery, but also even day to day improvements as Jodie gets her feet under her.

So we've settled in but are still working on the optimal routine, and realizing that there are a lot of little things to do. It will be interesting to see where we are in another week or two.

Thank you for your support. God bless.

Hi from jodie

Wow, step  6! I'm finally awake long enough to say hello. I love you all so much. The nurses and doctors are incredible and I'm moved down to a step down cardiac unit, another closer step to home.

We are both so happy Jodie is doing much better and is making such huge strides towards recovery. Every piece of good news feels like she is taking another step to coming home.

Thank you,
Jodie and Peter

Round two

4:45pm - So after coming back from the visit with Stella we were enjoying some quiet time together.  I got a call from the transplant coordinator saying they had accepted an offer for a heart for me.  The donor is a 25 year old female from a few states away, and it will be a dcd heart again (so coming in the box hooked up and beating).  They said that based on what they know, it is a really good heart, but until they get their eyes on it they won't know for sure.  Given what happened with the dry run, we are cautiously optimistic.  We decided that we will tell our immediate family, but until we know its a go don't want to really shout it out to the world.  We started to pack up my room, and a bunch of the things that Peter had brought me today we packed back up and had him take home.  He then headed back to the house to pack an overnight bag (originally he was not staying over), and we are trying to get him an exception to the rule so he can at least be here when I go back to surgery.  Since it would most likely be the middle of the night, there is a good chance of that.

I had thought it was weird that my doctor had not come in for the day yet, but he finally did.  My guess is they knew there were whispers going on so wanted to wait until they knew more.  He said that they think this heart looks better than the last one, but that it will take a few hours to fly there.  The surgeon who was going to implant the heart last time is the one flying out to assess the heart and collect it.  I really trust him, so I'm feel confident that he is only going to go forward if it is a good heart.

6:00pm - I had something to eat when they called as they said nothing to eat after 5:30pm.  Now I'm sitting here waiting for Peter to get back.  We plan to listen to a church service, pray, and try to go to bed early as we know people will be in and out all night.  If things go well, I'll be going back for surgery in the middle of the night and by the morning it will have started.

9:50pm - Peter and I have been trying to sleep but it is hard.  We are worried that they are not going to let him stay with me until I got back, and that he won't be allowed to be there when I wake up.  I had a bit of a breakdown to the transplant coordinator, and she called the charge nurse.  The charge nurse for my current floor said that since they are not busy, they will hold my room, and we can plan that Peter will come back after to "get my things".  She offered to, if needed, send a nurse or other staff with him so he can stay as long as possible.  She is calling the overnight nurse in charge and they are trying to get an exception for him. The other news is that when the transplant coordinator called, it turns out they are going to get a different heart for me. 

Now it is a 29yo male who is closer.  Apparently, right before they left for the other one they got this offer, and it is better in a few ways, including that it is not 'high risk', although it is dcd.  My doctor felt it would be better overall, and he is on the way there as we speak.  We were told that most likely I'd be brought over to the PACU around 2am and into the OR by 3am.  After that, Peter can come back to my current room until he gets updates.  If it is another dry run, hopefully they don't go as far and I'll come back to this room, where he will be.  The charge nurse assured us that they won't just kick him out at 9am.  And hopefully if it is a go, then he will know they started and can head home to deal with nervous energy.


By the time you would be reading this, the surgery has already started and it is a go.  We know Peter will get updates, but are not sure if he will even be allowed in the building afterwards until it is time for me to discharge.

We wrote this together around 7pm (edited around 10pm), but I'm planning on posting this once Jodie actually get the call to go into the OR. I'll probably text parents and sibilings, but I doubt I'll be able to focus enough to write a blog post like this.

The big day

5:15- they came in around 11:30pm last night to draw blood, then I fell asleep. Peter stayed on a bench chair that expanded into a bed. They just came in to get my weight. Me and Peter are pretty much up, so he just hopped in the shower. I should have morning labs soon, do another chloeohexadine bath, and have rounds and then I'll know more. I've been getting notifications on mychart, the patient electronic medical record, of some of the procedures they will do in the OR being scheduled. It's exciting and scary at the same time, but I'm feeling good after a surprisingly decent sleep. I'm allowed to brush my teeth this morning, but nothing else to eat or drink until the surgery.

7:00am- got a whole bunch of blood drawn, Peter helped me do the wipes, and then the nurse mentioned she needs to do charts before she went home. I realized I had two open notes from Wednesday, so since I'm just waiting I signed into a pin station in the room to get them done, and asked a colleague to set up my out of office reply. I know, I'm not supposed to be working. But, this did take my mind off of the doctor not being here yet, and now I don't have have to worry about it later. I also brushed my teeth. Just waiting for the Dr and trying not to get too hungry. . . . Just got a call from the transplant nurse coordinator and everything looks good to go so far. The extraction team is at the donor hospital. I should meet the Dr soon, then go down to the surgery pre area. Peter can come there, but when they take me to the OR at 9:30 then he can't. The surgeon wants to get me prepped so as soon as they get the go ahead they can start. I may be in the OR for hours on standby before they start.
7:41- the doctor just came in. He seems great and was really excited. The plan is to take me down soon, then back to the OR between 930-10. There is a small chance that I could be put to sleep to and wake up without the surgery happening if there is something wrong with the donor heart, but hopefully that doesn't happen. The doctor said that so far there are only 5 sites doing the dcd hearts, so even if this one didn't work I will pretty much have access to any type O heart in that pool, do it shouldn't be long. He is definitely going to take some videos and photos, but can't promise he will get everything. Apparently he puts things on Twitter with consent, so later I may be able to post links (I think this is awesome but realize that is not everyones cup of tea.)

8:46am- I was transported down to the pacu. They had remove my pants, socks, and underwear. Then I was given a "tush cush" (nurses term) which is a big jelly type sticker that goes on my bottom to protect my tailbone. They set up the pulse oximeter and drew some more labs. Anesthesia came and consented me. Then the doctor came and gave Peter some more information. At this point we are waiting for them to get started at the donor hospital. I got another IV as they needed more blood. Once I go back they will put in an arterial line before they knock me out. The surgeon told Peter the donor is in state and about 45-60 minutes away. So we are just anxously waiting. Going back now.

10:10am : They took Jodie back to prep for surgery and I have been sent to the waiting room. I'm getting regular updates as things progress, and the most recent update was at 10:18 saying that she is in the procedure room. Will post more as I get these updates.

2:00 : Hadn't heard anything so I called into the desk to see if I could get an update. They had told me they would update me when she would go back, when she went into procedure room, when procedure begins, when surgery begins, and every two hours during surgery. As of now I only knew she was in the procedure room. The folks at the desk have me this in between update at 1:45 when I called.

The heart has arrived, she's under anesthesia, and things are looking good so far. There is still a chance this could be a dry-run up until the heart and her are both in the operating room. Praying that things keep going smoothly and that surgery proceeds as planned.

3:10 : Dry run. They turned down the heart. Didn't get good readings from the donor heart. Optimistic that it won't be long until we get another offer. She's doing well and I'll see her soon. We will have more detailed information to update after she wakes up. 

We just got the call

12:06pm - we just got the call that they found me a heart. I'll post more later, but if everything goes well I'm getting a new heart tomorrow.

 { Addition} - we had gone to our Lutheran church this morning, then went to our Community church this afternoon.  We were chatting with people when we got the call, and were able to tell the folks who were still there.  Everyone was excited and there was a lot of praise, as we had been praying earlier for things to go smoothly.  They held an impromptu prayer circle, and then we were off to get home and do a few more things.  We are grateful to have such supportive faith communities, and it was really special to be with members of our small group when we got the news. 

Then we headed home and started calling/texting people.  One of my good friends came over to help finish a few more things, and another work colleague stopped by to grab some boxes that just got delivered and ended up helping to put in couch slip covers.  Our next door neighbors had agreed to take Stella during the day this week since we are having the contractor start tomorrow, and were happy to take her early.  Our across the street neighbors agreed to let in the contractor tomorrow so Peter can be here the whole time.  We are thankful to have such great neighbors and friends.Then it was time to head towards the hospital.  We realized that in the craziness, we did not eat lunch, so stopped and got a late lunch and then went to the hospital.

4:47pm - we are currently sitting in admissions at Duke Hospital and figured it was a good time to give an update. The donor is a 28yo male. I don't know from where exactly, but was told not in state but nearby. This will be a dcd heart, which means the donor is not technically brain dead. Tomorrow at 9:30am they are taking him to an OR, removing life support, and then have to wait 5 minutes before the surgical team can come in. If he passes quickly, and the surgeons can get the heart out within 30 minutes, then they will hook the heart up to the transmedic OCS (heart in a box) to get it pumping and do a really close inspection. If it looks good, which we should know by 11, then the surgery is a go. If not, it's a dry run. This heart is available because I signed up for the research study on Wednesday. It's crazy how quick this is! 

We are looking forward to getting upstairs and finding out more. Peter will be updating the blog when "big" things happen, but will most likely not have the bandwidth to be replying, although well wishes are welcome. Please pray that things go smoothly and pray for the family of the donor.

8:30pm - I got brought up to one of the cardiac inpatient floors.  They had given me a HUGE room, which would have been great if I had to be here for awhile.  After getting some vitals, I met the first nurse, who was really nice .  She ran through what needs to happen tonight, which was to figure out my INR  - the rate of how much your blood clots.  Because of my artificial mitral vale, I have to be on coumadin and keep my blood pretty thing to keep me safe from clots.  However, thing blood is not a good thing when you're having surgery.  So, they need to figure out how thin it is so they can figure out how much Vitamin K, the medicine that counteracts it, to give me.  Once they get my INR to a normal rate, then they will give me IV blood thinners (heparin) until the surgery.  Coumadin stays in your blood for days, while heparain is very short acting and only works while you'e getting it in the IV.

The transplant PA came in and I signed some consent forms.  I asked if the doctor would be willing to take a video of my new heart beating on the 'heart in a box', and get a photo of both my current and new hearts.  The PA texted the doctor, who said he will absolutely take the video of the new one, and will try to remember for the old one. Then the IV nurse was called to put in an IV  and draw some labs.  I ordered dinner, and then they came in and did an EKG.  Since I am sometimes a 'hard stick', the IV team brought an ultrasound and used that to find a good vein in the my middle arm.  They put in the IV, drew some blood, and then we had some downtime.  We have been trying to reach out to people, and I took the opportunity to call my Pastor from RI.  While I've had, and have, great Pastors, she is the one who I have most connected with, and I wanted to pray with her tonight.  It has been overwhelming and Peter and I wanted it to be just us, but being able to check in with her was really helpful.

They got back my blood test and figured out what they needed to do.  I was given a IV diuretic as I'm holding on water weight and they want to get it off, and then the Vitamin K.  While they were finishing, I updated my advance directive and started updating the blog. The IV just finished, and now I need to do a chlorohexidine wash.  This is a chemical wash cloth that will help to get rid of germs for tomorrow - I'll do once tonight, and and then do it again in the morning.  Then I have to wait for labs to be drawn at 11pm.  After that I can try to get as much sleep as possible before.  As of right now it is 10pm.

The plan tomorrow is that Peter will update the blog as the big things happen - so when I'm taken back, when they start, etc.  So keep on reading, and we appreciate your understanding of us being slow in responses.

Prayerfully yours,
Jodie and Peter

Moving quickly into the unknown

Jodie: The last week I've been noticably more tired.  I was getting more tired at the end of the work day, but I did really think a lot of it.  Then we went to Columbus, and as I realized that I could not walk through the terminals because it made me too tired, I started thinking that maybe things were a little worse.  In the last week, I've needed naps (which I am never able to do unless I'm physically exhausted), I've been really winded from walks that normally don't bother me (like walking between two buildings), and I've needed more and more caffeine (tea or soda) to get through the day.  My cardiologist had said that if I was feeling different, I should reach out.  Last night I was talking to Peter and saying that I was hesitant to reach out because my guess was that the cardiologist would say I needed to go into the hospital.

Peter: Seeing Jodie pushing through this past week  has been difficult. When she got to the point that she wasn't sure whether or not she should reach out, we talked it through. While I don't want her going to the hospital with the possibility of staying indefinitely; I also don't want her safety or health to be compromised just because we were being stubborn. Her health is more important to me than my comfort, and I convinced her that she needed to reach out and trust that her doctors knew what would need to be done.

Jodie: This morning I sent an email to my doctor, and within an hour and a half he had responded saying that the wanted me to come into the hospital to be put on an IV medication that may help.  I replied asking if this meant I would be in the hospital until transplant.  He said that is the most likely possibility.  Going on this medication will move me to a level 3, and depending on how I respond he may want me to get a balloon pump, which would require being in the ICU but would move me to level 1.  There is a small chance that I could go home with an PICC line (an IV that is safe to have longer term) and the medication, but it is not as likely.  The nurse called me around 1pm and I have to be at the hospital on Sunday between 2 and 5pm.  So the rest of the day was spent with trying to tie up loose ends, and then I rushed home so we could figure out what our plan is for the weekend and to meet with the contractor, who is starting on Monday.

Peter: To some extent, it feels like we finished none of the things that we wanted to have done before she needed to go into the hospital. It was a bit of a shock to hear that Jodie would be expected to go in at the end of the weekend. Looking at things logically shows that we have more done than it feels like. The contractor for the bathroom will be starting on Monday, and should be done within 2 weeks. Our neighbors are willing and able to take care of Stella during this week. We have kept our family and friends informed of the situation. And we feel so supported and loved by everyone who follows the blog and keeps us afloat with kind words and prayers.

Keeping busy

As mentioned in an earlier post, one of the things that we have on our "must do" list before transplant is to renovate our bathroom.

Jodie: The current shower is dated, hard to clean, and we suspect there may be mold behind the tiles.  This is not ideal for a lot of reasons, but would be a bigger problem once I'm immunosuppressed.  We have been talking about re-doing the bathroom since the fall.  The plan is to remove the current tiles and tub, replace the walls behind (including any of the wood framing that does not look good), and then put in a tile shower with a bench.  We are also going to be switching the shower to a combo shower head and handheld wand set-up.  The idea is to not only make the bathroom cleaner, but it will be more functional for me, especially after surgery.  Having a place to sit and a handheld shower wand will help with being able to keep myself clean.  The shower will be easier to walk into than a tub.  And including some grab bars will keep it safe.  Peter has really taken the lead, and I'm excited that he found someone who can start right away.

Peter: The tiles we bought at the Habitat ReStore months ago have been sitting in our kitchen for long enough that we started using the stack as a shelf. Its past time we got started with the project, so its great that we finally seem to have a path forward that doesn't require me to be the one to lay the tile. I can do it, and I have done it before, but it sucked [Jodie here - I really enjoyed it! We quilted a wall!] I think the end product looked good, but its definitely one of those things where I would happily pay for someone else to do it if its financially reasonable. I sketched out roughly what we want to accomplish for the contractor, hopefully it turns out better than I drew it.

Jodie: I'm really, really relieved that the contractor can start next week Monday.  We ordered the shower fixture yesterday, went to Lowe's and got tile for the shower floor that matches the wall tile Peter previously found at the Habitat ReStore.  We also started looking at other fixtures and bathroom accessories for later.  Right now we are focusing on the shower and floor, but the overall plan will be to eventually replace the vanity, light fixtures, other bathroom fixtures, and paint.  Normally we would just DIY everything, but it's good to know that the hardest parts, which would take us a long time to do, should be done in two weeks. Even if I were to get the call that they have a heart for me really soon, there should be time for this to get finished either before I get home or soon after.





Peter: Definitely looking forward to this being done and then we can worry about other house projects! After this is done, we need to get shower doors (considering ordering through Lowe's since they can include installation), and build out a pantry off the kitchen. If we like the work for the bathroom, we may use the same person for this. It will be a smaller project, but I'm really looking forward to that one being done. The idea will be to split the "formal dining room" (that we don't need because we have two dining rooms) into a large pantry to enter through the kitchen, a small office to enter through the entry hall, and a coat closet within the new office. Technically, once we add a door, this will be considered an additional bedroom since it will have windows, door, and closet.

I am coming to realize the importance of keeping ourselves busy to not settle into stressful thoughts about the uncertainties of the future. This is part of why I am taking the lead with the bathroom work at this time, it feels good to be able to focus on something with visible results and a clear end in sight. After these couple of house projects, I'm not sure what I'm going to need to use to productively occupy my down time... maybe I'll pick up a programming language, maybe I'll pick up boat building, maybe I'll pick something I haven't thought of yet. Regardless of what I choose, I know I will need something... if anyone has ideas, let me know.

Reflections and Thanks

We have moved into Step 3, which is waiting while for the doctors to look at the results, decide if they need more tests, and then decide how severe things are so they know both how to list me and what the plan is going forward.  We thought this would be a good time to reflect on the process thus far.

Jodie: In some ways it seems like this has been going on for awhile, and in others it seems like this happened really fast.  In reality, it has only been 16 days since my doctor called to say that we needed to do the evaluation, and now it is (most likely) complete (unless they need other tests).  Some of the days went really quick, and others felt like they took forever.  I was completely wiped from the 3rd day of the eval, but not the others.

Peter: To me, it seems like the past 16 days have individually dragged on, but collectively flew by. The intensive evaluation period seemed like so much was so densly packed into such a short period of time; that it doesn't feels like we're at the beginning of the process anymore. Nevertheless, when the transplant team reviews the results; they will be able to lay the groundwork for how we will be spending the time (for example, if we have to do other things) while we wait for a match for Jodie to become available.

Jodie: Right now I'm feeling grateful that this has happened already.  I am also grateful to my boss and co-workers for looking out for me, helping change my work responsbilities so that whenever I get the call it will be easier to manage.  I have had so much love come in via facebook, text, the mail, etc, and it makes me both appreciative and humbled.  Thank you to everyone who is walking on this journey with us.  I didn't realize that knowing I'm being supported by people from all parts of my life would make such a difference.  Please know that I have appreciated and cherished every comment, like, etc and it helps to keep up my spirit as we go through all of this. We have been writing a lot since it is so early in the process, and while I'm finding being able to share helpful both in explaining to others/keeping them up to date and in my own processing, don't be worried if it slows down a little as we are more in the waiting periods.

Peter: It's exciting things are moving quickly and so far so smooth... Duke really has their shit together, and it is refreshing to be able to see the way forward using such a well planned methodology. That being said, I'm often finding that I'm feeling overwhelmed and I need to sit down or step away to process. It's a stressful situation all around, and I constantly feel like I'm behind or not as prepared as Jodie. I'm worried about stepping into the role of the caregiver when it comes down to getting the call... will I be ready? Will I know enough? Will I be prepared to deal with all of the information, all of the things that have been done, all the things that will need to be done, and all the unknown future things for which I can't even expect or prepare? I may not always have the bandwidth to respond or communicate if you reach out to me; but it is absolutely appreciated and extremely helpful to keeping me going; and with your support I feel like I will be better able to support Jodie. Thank you to everyone who has reached out to Jodie and myself, and I'm so thankful for the support we have received.

First Appointment

Jodie: Normally the transplant evaluations take place across 4 days, starting on a Monday and meeting with the social worker/transplant coordinator the first day.  Because I work in the medical field, already have a fair amount of knowledge about the process, and usually have patients on Tuesday/Wednesdays, they decided to let us start at the end of the week.  We had the first visit today, and it was with the tranplant surgeon. 

It's the same clinic waiting room I'm used to going to, but on the other side.  We started off by meeting with the transplant surgeon's physician assistant.  She was really helpful and gave us a lot of detail before we saw the surgeon.

Peter: From the perspective of support and caregiving, most of my questions were regarding logistics and prodecures. The rough order of operations will be: locate donor heart > match patient with heart > call patient in > prep patient for transplant > evaluate heart for suitability > begin surgery. However, there is a possibility that at any point in these steps they determine that the heart is not suitable, they will not follow through with the surgery. They would call this situation a "dry run," and we have been told to expect this as a possibility, but not necesarily likely.

When Jodie goes in to be prepped to surgery, I will be provided a pager that will give me regular updates throughtout the entire procedure. They estimate that from the point in which Jodie goes in until the point they contact me to come back to her side, it may be upwards of 10 hours.

Jodie:  On my end, having additional details was really  helpful.  When I get the call, they will give me an idea if we need to come in right away, or if we can take a little time (like go home, let out pets, come back in one car), and that will be based off of how far away the donor is - although they won't tell us specifics.  Once there is a donor, that information goes into the national United Network for Organ Sharing (UNOS) system and they start looking for a match.  If no one else who is a higher priority rating can use the heart, then I would get the call.  One of the Duke surgeons would go to where the donor is and evaluate the heart to see if it is suitable.  While that happens, I'll get to the hospital and start being prepped.  Until the surgeons think things are good to go with the donor heart, even if I'm back in the operating room, they won't really start. Once they have the go ahead, the surgeon still at the hospital will begin to get things ready, with the goal that as soon as the donor heart arrives they can implant it.  The actual surgery time is probably between 6-8 hours, but it will be longer that I'm in the OR and before Peter can see me.  After the surgery, I will be in the ICU for at least 1-2 days, and as I wake up and am doing well they can slowly take me off of machines.  Then I would go down to the cardiac floor for the rest of the hospital stay, which could be from 1-2 weeks long before I go home.  Overall, I think we both learned a fair amount and feel confident in everyone on the team so far.  We had a few "worst case scenario" fears and they had good answers for all of them. 

Peter: Today was day one of step two in the process, and it was mentally exhausting. Thankfully this evening we also had a small group bible study with folks from the church we go to together. Being able to talk through some of what we learned helped us a ton with processing everything from the appointment, and I feel we are very blessed to have this supportive community.

Tomorrow will be a long day. I am going to be driving Jodie to the hospital in the morning, working remotely from there for most of the day. While we are there, Jodie is scheduled for 3 tests and an appointment with the financial care counselors. 

Thanks for walking with us through this journey, and please keep us in your prayers these next few days.  We are personally praying for patience and to stay hopeful/optmistic.