Gratitude

Today has been a slow day.  I didn't sleep well (which may have been due to a very cute puppy wanting to sleep right where my feet go overnight and refusing to move), so I ended up taking a nap after meds and breakfast.

One of the staples of when I sleep is my heart pillow.  Most hospitals give you this when you have a heart transplant.  It is the perfect size and shape to hug onto, especially when doing certain things that usually use your arms - since you can't push on your arms for 8 weeks.  I had thought, in 2007, I would get one after my open heart surgery but did not and was really bummed.  I am delighted to have this, and it says Duke on the back.  I will cherish this 'gift' going forward, as it was a comfort to me in the hospital and continues to be that and a reminder of the miracle gift of this heart. Its also really useful to hug onto at night so I can sleep on my side without my chest hurting as my muscles regrow and get stronger.


 It has  made me think of the outpouring of support I've gotten during all of this.

Whether it has been via cards, compression socks, kids drawings, stuffed animals, prayer shawls, sour straws, cuddly/soft things to use, flowers, gift cards, or well wishes via the blog, facebook, or via phone/text, please know how much your generosity and care has meant.  This journey has been exciting, scary, joyful, lonely, fulfilling, and frustrating all wrapped into one.  Seeing the support from people from all different parts of my life - literally from elementray school, high school, college, living in Seattle, living in RI, the camps I have worked at, and from now living in NC has been amazing.  When I was stuck in the hospital by myself, seeing how many people were wishing me well and that they cared enough to do something to let me know really helped to keep my spirits up.  Talking to and texting with so many of you has helped me feel connected.  I truly, truly could not have done this without your support. I tried to get a photo of all the things that folks have send/given us.  Speaking of gifts, today we recieved a random package - if you sent us a panini press, thank you and please let us know who you are! (there was no note).  To everyone, thank you!

Thinking ahead

Normally when you have an open heart surgery, you start cardiac rehab about 6-8 weeks after surgery.  Given what is happening with covid, it is unlikely any facilities will be open.  Even if they are, given my level of immunosuppresion, it would be a big risk.  Talking with my nurse coordinator today, she feels like the risk outweighs the benefit.  We talked through what other alternate options are. I have done cardiac rehab once before, and most of it requires an exercise bike, a treadmill, and small weights. 

Given the risk of going out and that 8 weeks out is only 3 weeks away, I decided to go online and see if there were reasonably priced foldable machines, as we don't really have room for a gym in the house.

Peter came over when I was looking, and we were able to find a foldable exercise bike that was reasonable. We added it to the cart. Then we looked for treadmills.  We found a good one and it was in stock, but kept looking to see if there was something else that made more sense.  Literally less than 10 minutes from then, the treadmill is not unavailable.  I had Peter go to the cart and buy the exercise bike immediately.  We found another similar foldable treadmill that was in stock, so again we immediately purchased it.  Then got some of the interlocking foam mats to go underneath it.  All of it will be here withing 2-3 weeks. This was not the original plan, but cardiac rehab was extremely helpful to me in the past, and I'm not willing to either set back my recovery or risk infection, so I think doing something similar to cardiac rehab at home is the best call. I'm really grateful that buying these is an option, both in them being available and that right now we can finacially do that. I'm more and more grateful for our privelege during these times.

I get to call the actual cardiac rehab program tomorrow to see if they are willing to do virtual visits or consults to help give me an exercise prescription, and if not then its good we are friends with some PTs.  I also have my contacts at Duke Health and Fitness.

This should be interesting.   

A "normal" week

Things are really starting to even out. A few of the meds they have me on we've been able to decrease, and my numbers look good. I also am not needing pain meds which is exciting. Still get a little twinge here and there on my healing sternal scar, but that's good because it tells me when I'm doing too much.

Two separate friends/coworkers stopped by to get their masks today, and it was nice to see them and chat from afar. Hard not to be able to hug them though. Also had a nice short hello to Peter's family via zoom.

Since I'm onto every other week for clinic now, that means there are no appointments and we can start seeing what a normal week looks like. I'm looking forward to it!

Pushing through fear

Every night I have to take my temperature and blood pressure. Last night, my temp read 99.3.  I immediately took it again, and it was normal at 89.6. I took it a few more times to be sure.

In those seconds between the two, so many thoughts went through my head. Am I getting sick? What if it's covid? What happens if I get sick? 

Now, some of these are worries I would have had after transplant regardless. But with covid going around, it's hard not to be afraid. There is so much to do around to house already plus the extra cleaning for me to stay safe, adding in keeping us safe from covid is exhausting. 

This transplant process is hard. And it's scary. There are so many unknowns. While we certainly try to be strong and put up a brave front, there are tears, there is anger, frustration, loneliness, and fear. There is also distraction from thinking too much about it or it gets overwhelming.

We're both usually able to do something to feel better before we go down the rabbit hole. But some days I feel vulnerable. Today started as one of those days, but what I'm realizing is that reaching out to Peter and to friends for support is something that sometimes I need to do, and that the act of reaching out helps me feel in control.

More Random Musings

There have been a few random thoughts and things that have happened that I've been meaning to share, but have not necessarily fit into a full days narrative.  So today will be another "random musings"

- Compression socks rock.  Even though my feet are back to normal size now, wearing them makes everything feel better.

- It is REALLY nice to have normal size hands and feet again - it makes doing everything easier.

- I have lost over 15lbs of water weight in a week and a half, and it makes a HUGE difference in being about to move around, and feeling better.

- It seems like maybe once a week I have what I call a "healing day" where I am tired all day and can't really do much other than lay around.  I think my healing is happening all the time, but every once in awhile there are "spurts".  The one this week happened two days after they removed my staples.

- My scars are looking pretty good.  The scar where the old pacemaker was is basically healed, and it is really, really thin.  Looks better than the old one did!  The long sternal scar ia healed mostly at the top and bottom, but is still working to fully heal in the middle.  I'm using steri-strips (wound closure strips) on some parts to keep it together.  While it is healed enough, there are a few parts that need some help to stay close together so the scar stays thin. The scabs from the chest tubes look good and I'm waiting on them to fall off so things will be more comfortable.

- I've been needing a nap every morning, but yesterday I almost didn't and today while I laid down and rested, I did not fall asleep.  I'm hoping that means I'm getting stronger.

- For the most part I don't even need tylenol anymore, which is exciting. I'm not having any big pain anymore, although as my scabs rub there is still some discomfort/slight pain, and every once and awhile I get a twinge from the stenal scar.

- My range of motion is so much better than I expected it to be.  I can lift my arms all the way up, get clothes on and off pretty much by myself, and except for reaching really high, can do almost everything else.

- I'm no longer needing to check my med list each med time - I know which ones should be at each time, and I can recognize each of the pills (there are a few that I'm not 100% sure on the name, but I know what type of medicaiton and what it is for).  Some of those will go away over time, I do know the ones that I will keep needing.

- My biopsy and check-ups were good on Tuesday, and they don't want to make any changes.  I now go to every other week appointments.

- I've stopped using the chariot for the most part.  The last few days we have done our walks on the HOA land trails (in our neighborhood, they have a bunch of grass and wooded trails throughout the neighborhood that is maintained), and it was not conducive to the chariot, so I walked while holding Peter's hand. Walking through the grass and the trees is much more satisfying that walking down a street.  We brought our masks with, figuring if we saw anyone that we could put them on.  Today we did not see anyone.  Walking off pavement and without the chariot definitely uses more muscles and makes me more tired, but it is really satisfying.

- The more things heal, the more it is easy to stand up straight and walk normally.

- I have cut out a ton of fabric for masks and am excited to start sewing.  I have all the colors of the rainbow! Most of them are the regular size, but I'm making a few that are 'large' and I had a request for a few kid ones, so I modified the template to be a little smaller too. I still need to cut out the flannel layer and some more backs, but I can at least get started on the ones being sent to friends and family this weekend, and then once I cut a little more I can sew next week for the ones for the nurses.

- Convalescing during Covid is weird and not at all what I was expecting.  I knew that after transplant I would be in isolation in the house, but I also expected that I could have visitors.  I think it is now catching up to me (a few weeks after everyone else who has had to stay at home) how isolating it will be.  It is also frustrating that there are things I want to help with, but a lot of the time if it came from outside, I can't due to infection risks.

- I'm really having to think about things with food that I didn't used to.  I have to be careful of contamination, so if I don't finish my plate, I shouldn't save it as leftover since I could have inadvertently added bacteria that could then grow.  It is meaning being more purposeful in how I'm serving myself, in what utensils I'm using, in not re-using cups and plates, in pouring things out of bags instead of putting hands in to grab them.  All of these are probably good things, but are also things that need to be thought about.

- I have moments where I feel really healthy and like I'm 'better', and then other moments where I feel really tired and it is clear I'm healing.  I'm happy for the healthy feeling moments, but it in some ways makes it harder to have the moments when I'm clearly healing.

- I'm so grateful for this miracle and pray everyday thanking God for the timing, this heart, everything.  I try to remind myself that things do not go by my timing or my plan, and to be patient and understanding.

- Thursday nights one of our friends in Nashville, Chris Ferrara, who is an awesome musician, is doing a Facebook LiveSteam every week.  The frst week was when I was in the hospital and I was having a really bad day, and it made me feel like myself and connected to others (outside of immediate famiy/friends) for the first time since I was in the hospital. Peter and I have started to plug it into our tv and watch it on Thursdays.  Its fun to request songs, and Chris has been super sweet and given me shout outs.  Yesterday I requested a slow song to dance to, and while Chris sang Peter and I shared our first dance post-transplant!  Our last dance before that was the night before transplant, in my hospital room, while navigating my IV pole and tubing.

- I'm really excited for a year from now when I know what my 'new normal' is with this heart.  I'm already imagining the hikes and bike rides and dancing that will be done.

Masks and rest

Yesterday and today have been full. Peter was able to do two full days of work as I didn't need to go anywhere. After getting the first two batches of masks out (40 total), I realized that it would be easier to do more of an assembly line approach - cut out some more templates, and with a large piece of fabric, use it all up. I have a bunch of brown fabric that will be the backs, and if I fold it a few times I can cut out 4 sets at once. Yesterday I cut out the backs and the flannel in between "filter" layer, today I started cutting out colors for the front. I have 16 to make for friends and family, then the rest will go to the hospital.

Cutting things is definitely physical therapy for my chest. It is good, but tiring. I've been working on masks in the morning, and then resting more in the evening.

Peter and I are going to spend time for us tonight. The plan is to watch Chris Ferrara's Facebook live stream (fantastic artist and friends in Nashville), and play a board game together. Even though we are in the house together all day, it's important to us to make real "together" time we can enjoy with each other. 

Hope you're getting some quality together time with those in your household.

Another day in clinic

Today was a big day in clinic - not only was it the transplant follow up and biopsy, but also my post-op visit. Originally it was going to be today and tomorrow, but since they are trying to keep people at home as much as possible they decided to do it all today.

I was up and out of bed by 7am, got dressed, had an Ensure (since you're not really supposed to eat before going to the cath lab but I knew I needed something and they said that was ok), and we were able to head out by 7:30ish.  Last night we packaged up the couple hundred ear protectors Peter made, and I wrote thank you notes to the nurses and staff in the ICU and the cardiac floor I was on.  The plan was to drop them off as a thank you, and hopefully the ear protectors, which is a simple piece you put on the back of your head but can attach the elastic of face masks to, will help them feel more comfortable.  I made masks for two of my nurses who had me for 4 days total and were wonderful, and since I'm going to be making masks anyways I offered to make them for the other nurses and staff that worked with me while I was inpatient. We divy'd them up between the two floors and then kept some to give to the heart transplant clinic staff too. I had also packed all my pills for the day, my booklet that I write my bp/pulse/weight/temp in each day, and lots of snacks for after biopsy.

We got to the hospital, Peter dropped me off in front, then went and parked the car.  Masks were on before we got out of the car. We went through screening, grabbed a wheelchair and Peter wheeled me to clinic.  I had a blood draw, which took a few tries since we needed to save my good vein for the IV later - but they got it.  Then I met with the transplant nurse coordinator - and this time it is the one who is assignd to me and I talk to on the phone all the time.  It was good to see her in person, and not have to re-explain everything.  She appreciated the ear saver and wants a mask, and said she would ask around and let me know who else on the team does, which I'm excited about.  Next the heart transplant doc came in, and he thought things were looking good.  He changed around meds a little bit, and hopefully that will make me feel even better.

Next we headed up to the cath lab.  This is in the main hospital building, which is a bit of a ways from the clinics, so Peter wheeled me over there. At that point I was pretty tired, so was looking forward to laying down and having the hour after the procedure to stay laying.  We got there, I got ready, and then Dr. Schroder, one of the transplant surgeons (he is the one who was going to do my dry run, and who went to get my heart and sent me the video which is on a page now if you didn't see it - I think its amazing to look at) came over and took out all my staples and stitches. Peter held my hand through it, as it was a little painful.  Dr. Schroder gave us some instructions, said he would love a mask, and said he will ask the heart transplant team who wants a mask. I'm excited to do a little something to show my gratitude. After the staples and stiches were out, it felt much, much better.  After that just had to wait for them to take me back.  I laid down with lights low and rested, but didn't fall asleep.

After a delay for an emergency case, I was taken back, and the biopsy only took about 20 minutes.  It was cool to see it on the monitor - I could see the little claw grab at something, and then they would take it out.  I'll get the results tomorrow.  While I was in the cath lab, Peter callled the 3rd floor cardiac step down unit and got the ok to drop off the bag, and he said the charge nurse was really excited about the ear protectors and that they would love masks. He got lunch, and then waited until they called him.  When I was brought back to the prep area,  it was an hour of laying down and they let Peter back.  The nurse was able to raise the head of the bed once 15 minutes passed, and at that point it was about 1:30pm.  I had some orange juice, and then a protein bar, a cheese stick, and some almonds from home.  At the end of the hour, I had to do a few more blood pressures and then I was good to go.

Next, they came to do an echocardiogram (ultrasound of the heart).  This was Peter's first time seeing it after the transplant, and really my first time as well, being able to really pay attention, as last week it was done during the biopsy. It was kind of amazing to watch an echo and see a normal formed, normal functioning heart.  The person doing the echo pointed out each part of the heart, and it was pretty cool to see how different it looked from my original heart. It was also a little surreal after 30+ years of seeing my old heart on the monitor.  I think this is one of the moments where it really hit me that hey, I have a new heart.

Once the echo was done, I still needed an x-ray, which was back towards the clinics.  They called for transport, which means someone comes with a wheelchair for you.  We had to walk past the building where the ICU is, so Peter headed up to give that floor their thank you bag while I was brought over to x-ray.  Peter said that the nurses were touched by my note, excited about the masks, but said that the ear protectors were "currency" and they were extremely grateful to have them.  I'm really glad that we can do our small part to support the healthcare workers during all of this.  Peter is going to keep printing the ear protectors, and I'll be making masks.  While he was dropping things off, I got to clinic, was called back got my xray, and by the time I came out he was ready to take me to the car.

We got in the car about 3:30pm, and then it was off to home.  My chest is feeling a bit more sore than normal (which I'm not surprised by).  We stopped by Walgreens to pick up my new prescription, some guaze, and some steri-strips (and by we I mean I stayed in the car and Peter went in).  Got home, immediately stripped down and put clothes in the washing machine and changed into pj's (well, I did,  Peter put on real clothes).  Then lounged on the couch.  Peter was wonderful and made dinner, and now I'm back on the couch writing this while he makes me chocolate chip cookies.

So most clinic days won't be this long, but I now go to every other week appointments, which is exciting.  I'm hoping that a good nights sleep will lead to my chest being less sore so that I can get back into my routine, but we will see.  Tomorrow may need to be an easy day.

Here is hoping that all of you are doing well, and that you're finding ways to use your time.  Please continue to stay home - in a lot of places the curve has flattened, and we are in a crucial place that if we keep it up this may go away more quickly.  Since they now know that covid-19 is airborne, please please wear a mask whenever you are out and going to be around people - but keep social distancing.  It is looking like a lot of people may have the virus without any signs, and if you do have it and wear a mask that helps to protect others from getting it.  If you are exposed to someone who has a mask, it decreases your risk some.  And if you both are wearing masks, the chance of infection is very, very low.  And if you don't have one and need one, let me know.  I'm (hopefully) going to be cranking these out and a few more isn't hard to do.  Especially if you're a friend of mine in healthcare, let me know. But really, the best thing to do is stay home.

Ok, shout out to my amazing husband.  As I finished writing this, he brings me two warm chocolate chip cookies, which taste amazing, and a glass of cold milk.  I am a lucky, lucky woman.  He takes such good care of me.

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.

Rolling with the punches

Today was a good example of the need to be flexible. Given that it is Saturday, we decided to sleep in. So my 7am pill alarm  went off, and I took the pills (from my bedside table) and went back to sleep. Got up with my 9am pill alarm, took them, then Peter made up breakfast. I thought I would not need a 10:30 nap, but I was wrong. Of course, I needed a snack so by the time a smoothie was made and consumed it was after 11am. Went to bed, and at 1pm Peter brought me my pills because my body was not ready to be up. Finally was able to get up after 2:30, so my day didn't really start until 3pm. That was unexpected.

So after then it was pretty good. Peter helped me get on compression socks, which are wonderful. I finally got into my sneakers. We took a long walk and it was so much easier.

 I finished sewing the 20 masks I'm working on, and sewed the tie pieces (which will need to be turned inside out), so can hopefully finish them tomorrow. I cut out my next batch of 16. If you need a cloth face mask, let me know - it's giving me something to do and it's good physical therapy to use my muscles. I also am using fabric I've had for years so that is good. After I've done them for friends and family I'll make ones to donate.

So rolling with the punches and grateful to have energy to do some things.

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.

Ups and downs

Today I had my first clinic appointment and clinic biopsy. We got to the hospital, Peter dropped me off in front then went and parked the car, we went through screening and then got a wheelchair. We headed to clinic, which was very empty.

I got my blood drawn, then we were put in a room. The transplant nurses remembered me from the pre-transplant eval and everyone was excited I'm on the other side now. First I saw the nurse practitioner, then the doctor, and then it was time for the biopsy. This biopsy was performed in clinic, but my last two were in the Cath Lab. The biopsy was unpleasant at best. I did ok through it, but it was rough. They decided to make some medication changes, so we had to wait around at the pharmacy. One issue is that my body usually wants a nap at 10:30, and it was about 11:30 when we left clinic. The pharmacy said they needed 30 minutes, so we got smoothies to kill time. We headed back, and only one prescription out of three was filled. One insurance wouldn't pay for until tomorrow, the other was in the computer twice in different ways so they wouldn't fill either without the Dr clarification. They claimed to have paged her for that information. We said just fill the one insurance won't pay for, as it was a $20 difference and not worth coming back the next day...  30 minutes later they said they have the prescriptions, but only 2 are ready, as they haven't heard from the doctor. Of course, that is the really important one. So we go back to clinic, the nurses call the Dr, who didn't get the pages, and she calls to fix it. Back to the pharmacy, where they say it will be at least 15-30 minutes. 

By this point my body is done. I'm tired, hungry, and I start sobbing. Peter takes me to get food and water to take my afternoon pills. This helps a little. We go back to the pharmacy, and 40+ minutes after they said, it's finally ready. 

We get home and I collapse into bed. Peter takes the call from my nurse coordinator with instructions for tonight as I'm out of it. I sleep a few hours, then get up when Peter brings me my evening meds. We do a simple dinner and I just veg on the couch.

I guess we will have our ups and downs. Today was rough because I couldn't listen to my body. I'm hoping a good night's sleep will help reset things.

Happy Easter

Thank you to both Susan's who gave me compression socks and to others who decided to contribute to my growing sock collection. 

We had planned to write a post on Easter, but the day got away from us with all the family video visits.

Easter morning we woke up, I made deviled eggs for breakfast, and we streamed church.  The message this Easter has been quite profound for us, in addition to it also being passover.  Thinking about Passover in the time of a pandemic gives a new meanng and understanding to what people may have been feeling back then.  Thinking about the trials Jesus faced, and how faith was needed to get to the miracle of his rising hits close to home.  When looking at life these past weeks, there have been so many trials, and we have had to have faith that things would turn out. While this was a very different Easter given we are all in isolation, in a lot of ways I feel more much more connected to the Ressurection and have been able to really take in some of the context in ways I have not before. I think that this journey of trials has been one that really could have tested my faith, and I am grateful to feel that instead it has strengthened it.

Until yesterday, I don't think Peter and I had really used video chat with our friends and family too much.  It was nice to be able to see Craig, Alex, Amelia and Joseph  playing in their yard, and get a video tour of Shaun's new house and see Calla, Jake, Abby and Gabby.  Peter's family did a zoom call, which was fun.  I also got to video chat my dad.  It is definitely not the Easter I'm used to, but it did feel more connected than I thought it might.

Today we are trying to have more of a "normal" day.  I played around with a mask pattern yesterday, and after a prototype that wasn't exactly what I wanted figured out a good pattern and way to make them that should be fairly quick. I cut out a handful of masks for specific people that I'm planning to sew today.  Since I'm a quilter, even though I donated bins of fabric to my church earlier this year, I still have a bunch to work with.  I am using the cotton as the outer layers, and then doing an inner layer of the flannel as more of a filter layer.  Making these helps me feel like I'm doing my part. They may not be able to use them in the hospital, but i'm planning to make some to gift to the nurses that took care of me in the hospital.  I won't have those done by my appointment tomorrow, but I think by next week I should have enough that I can send it up to the floor when I have my appointment. 

Finding what we need

I expected that there would be some things that might be needed after transplant that I would not expect.  Turns out that the big thing is compression socks. After surgery, which is in part due to the medications and sterioids, and because I'm retaining so much water, I am very, very swollen.  It is mostly in my feet, ankles, and legs, to the point that it does get painful.  This means that spend a lot of time with my feet propped up.  I've learned that the more I walk, the better it is. 

I asked my nurse coordinator if I could wear some compression socks, and she thought that would be ok. I didn't have any, so yesterday I put on some knee high stockings.  I looked on the target website, and was able to find 1 pair for pickup and ordered them.  Peter went and picked them up 4 hours later, and we of course washed them first.  Even with just the knee highs, my feet were feeling better.

Today, now that they are clean, I put on the compression socks (over knee highs, since I only have one pair so far).  They are AMAZING.  My feet are still swollen, but I can feel my ankles and it does not hurt. When we went for our walk today, it was so much easier and I did a half mile loop.  So of course I need more compression socks, because I'm sure this swelling is going to continue to be an issue for awhile and socks are not something you can really re-use every day.  The caveat is that since we are in a pandemic, this is not really an "essential" item, so no one has any.  None of the other local targets are carrying them, and neither are CVS or Walmart. I was able to order some to be delivered to the house, and they should be here by Friday.  I really shouldn't complain as it could be much worse, but I guess I just didn't really think about things like this being hard.  Normally I would not call a pair of socks a "need", but in this case it really, really is. It is a small thing, but it makes me nervous about what else might come up.  What if there is something that we really need for my recovery, to either make things easier or not hurt or that it just needs to happen, and I can't find/do it? 

I feel like I've stayed pretty calm through all of this, and I'm certainly not panicking now.  But the reality of recovering from a major surgery while immunocompromised during a pandemic is sinking in more every day.  I got a referral for cardiac rehab, which normally I would start about 6 weeks post transplant (which crazy enough is only 3 weeks and a few days away), but I'm not even sure if they are still open. 

So at almost 3 weeks post transplant, overall, things are good.  I'm home, I'm not having pain and have been able to decrease my pain medications, I'm able to get around mostly by myself, I'm listening to my body and eating/resting when it is telling me to.  We are still trying to figure out a routine, as Peter is helping care for me and working. We are doing laundry and dishes daily to be safe, and figuring out what I can help with and what I can't.  I think sometimes I have to remind myself that I've only been home 5 full days, and that it is still less than 3 weeks from the transplant.  When I take that into perspective, I'm doing great.  I think that when I'm feeling good I feel so good that it is hard to remember that, and then things happen that remind me to I need to just give it time.  I need to remind myself that we have most of the the things we need, and trust that if a time comes when there is something else that is really important and needed, it will work out.    

First official outing

A lot of work goes into healing, I'm learning.  Today is a good example.  Other than medications and taking care of myself, I had to go get labs drawn to check on how I am doing. My alarm went off at 7am and Peter brought me a Tylenol.  I stayed in bed a little longer than I should have, then got up and ready.  I made myself a cherry, peanut butter, cherry juice and milk smoothie (all about the protein), had my morning meds exccept for the one we were checking the level of, and we went to the lab.  I had tried to call beforehand but could not get someone on the phone.

Peter went in with my lab slips, ID, insurance card, etc to check me in and see how it works.  They were ok with me waiting in the car until it was time to get my blood draw.  When it was time, I chose to walk holding Peter's arm versus bringing in my 'chariot' and having to clean it.  The walk was not that far, but without the chariot it take a lot more energy.  They were able to draw the labs and then I got home. Of course I was hungry again, so I had a chobani flip.  After that I was extremely tired, so I took a nap.  I timed it so I could eat with Peter around noon, when he takes a work break.  This also meant extending the time between tylenol doses, and I was happy that with moving it out, while I did feel a little discomfort at by the time I took another dose, I did not have any pain.  Obviously, if I don't need the medications I should not be taking them as even too much tylenol over time can cause problems, but I also need to make sure I'm not stopping too soon and getting pain.  I'm feeling good about navigating this.  I made sure to take my pills with milk - trying to get in all the protein and calcium that I can to help my bones and muscles heal

I had a large lunch of soup, then went to put up my feet and do a little reading/ catching up with people.  Not even two hours later I was really hungry, and had some cheese and crackers. Lounged on the couch with the pets.

Our next door neighbors love Stella, and they offered to take her for a long walk.  While they did that, Peter helped me to shower.  Basically, I can't get any of my wounds wet, which is my entire chest area.  So I can only clean from the waist down fully, my back, and then arms/armpits, and some of my stomach and sides.  We have to be careful to keep the incisions clean and dry.  Since my legs and feet are so swollen it is hard for me to do a lot of things, but between Peter and the new wand shower we were able to get everything clean while keeping certain things dry.  The new shower is working great for this - I can sit on the bench, hold the grab bar, and the shower wand is great for maneuvering around the difficult areas.

After the shower I felt like I needed some exercise, so we did a little walk across the street, down a few houses, then up to the corner, crossed the street, and back.  We stopped in our neighbors yard and got the dog back.  Not to worry - we kept our social distancing, and brought clorox wipes for Peter to wipe down the leash after hand off.  Then it was back home for my 5pm pills.  After taking those, I realized I was hungry again (notice a theme here?) and decided on a small bowl of popcorn.

Now Peter and I are just relaxing for a little bit.  I expect that we will have dinner in the next few hours, and then I'll need another snack before bed.  The doctors had said that my appetite and my need for calories would really be increased these first few months out of the hospital as I heal, so I'm trying to honor when I'm hungry but also be smart about what I'm eating.  For the first time in years we have half gallons of milk in the house, and I'm really trying to make sure that everything is at least moderate if not low sodium while also being high protein. So far so good.

I also figure since the calcium and protein is so important, ice cream and cheesecake at night is a reasonable idea, right?  I'm really happy that we made all those soups and prepped a few meals before I went in the hospital or I think we would have some issues given the grocery store issues with the pandemic.  So far we have not had a problem, and we are starting to think more long term about how we can/should get some of the food we will need.  The local farmers market down the road from us is open for pre-orders with pick up, so we may do that, but luckily there seem to be a lot of options.  I've ordered a few things online that I like to have that aren't necessitities but are comfort foods, and we can figure the rest out as we go.

Random musings and lots of medication

Since I've been home, as Peter and I have been talking, a few things have come up that I'm calling "random musings".  Not so much that they are random, but that they are thoughts/feelings/things that happened while I was in the hospital that I haven't really had a chance to share or talk about.

Yesterday on one of our walks with Stella (I'm getting down the driveway and about half a block and able to turn back), we saw our neighbors.  I sat on my "chariot" in their driveway while they were over 6 feet away on their lawn, and it was nice to catch up.  Our across the street neighbor was asking if things felt different, and if I could tell it was a different heart.  My immediate answer was yes.  She asked how I knew, and I shared that the one night in the ICU, all of a sudden it just felt really weird.  I was laying there, and it felt like raindrops were hitting me on this one point in my chest.  I put my hand on my chest and there was no rain, but it was this strong, steady beat.  It was the first time I think it really hit me that this was my new heart beating.  Very surreal and cool and bizarre and so many other things. 

On my second full day home, I have been trying to find a little bit of a rhythm on which to base my days off of.  Peter is able to work from home, which is great, but he needs some good chunks of time to do it.  Luckily, with my need for naps and being able to be mostly mobile on my own, we can make it work.  He does have the flexibility to say he needs to take time off, but I think if we can manage it then it makes sense to try.

A lot of my schedule is really based around when I'm taking medications.  I'm on 19 different medications right now, and have 4 main medication times - 9am, 1pm, 5pm, and 9pm.  However, because of the need for some pain meds I also have 7am, 11am, 3pm, 7pm pill times for a little tylenol and one of the nerve pain meds.  So my goal is to be up and moving by 7am for my first tylenol dose, and then I have all the other pill times as alarms in my phone.  I have it set 15 minutes before I need to take them. 

Duke sent me home with a HUGE pill box that has everything for one time frame together in a section.  While I understand why they do that, it also makes me uncomfortable to just take a huge bunch of pills without knowing what is what and verifying it is right.  So what I have been doing is, at each pill time, taking out the pills, then going through my med list and the pill bottles to 1) confirm that I have the exact right pills and 2) start to learn which pills are which.  The 15 minutes gives me time to get up and over to the table, do my breathing exercise (I have a little machine I'm supposed to use 10xs a day to help strengthen my lungs), and review all the pills, then take them by the right time.  It's only day two and I'm already about to identify at least 75% of the pills.  All the anti-rejection ones I know by sight already, and there are a few I was on before I already know, but I'm still learning some of the ones that I only do once a day.  My understanding is that over time some of these medications I will not need, but there are many I will need for my whole life.  For now I'm sticking with the box as they gave it to me, but I know that some time soon I'm going to come up with a different pill box/strategy that gets me what I need while also having me feel confident that I know exactly what I am taking.

I also have to keep a log with weighing myself, my blood pressure and my pulse in the morning, and then my temperature, blood pressure, and pulse at night. We are just keeping everything together in one place on the dining room table (which, as I'm feeling better will move to a less central place), but that way it is reminding me of what to do and when.  They printed me out a multipage sheet of each of the medications and when to take them, and right now that is my best friend for double checking things.

Peter let me register his fitbit to my phone so we can keep count of my steps and make sure I'm walking enough/not too much.  So far today I did a walk by myself around the yard with Stella overseeing while Peter went to get groceries, and we did a short walk down the block.  I'm at a little over half a mile so far, and we plan to take another walk in a little bit.

One of the hardest things for me is that the medications and steriods are making me retain a lot of water (like 25+lbs more than pre-surgery), which is being held mostly in my feet, legs, and belly.  When my feet get really tight, we've learned the best thing to do is to go for  a walk, then have me prop up my feet to help the swelling go down.  I'm hoping that with the medications and me going back to my low-sodium diet now that I'm home and can do that (and still enjoy my food), that the water will get down somewhat quickly.  I'm learning I can only drink so much so often, but overall its not too bad.

Right now we are praying for perseverance.  We are doing better about being patient, but right now we really are needing to be able to push through and go with what is happening.  We got lucky today in that the grocery store had everything we needed for me to comfortably be able to eat in a way that will help me heal and meet my protein needs.  That may not easily be the case every time, and we are going to need to be able to be persistant and persevere.

I am happy to get calls and texts, although given my napping 1-2 times a day I can't promise that I will answer right away.  Peter and I are working on figuring out some ways to do virtual gaming, and we think we at least have a way to play Settlers of Catan with folks online if anyone is hankering for board games.  My cousin and I are doing a book club type thing, and if anyone else is interested in doing something like that with me I'm open to the idea as I have a lot of time on my hands right now.

What is normal?

Jodie is home and that is amazing. Sometimes we have both found ourselves still getting a little emotional when we can simply reach out to hold hands; just knowing that we're finally together again. It feels like an eternity, but relatively speaking, her recovery is flying by.

My wife is the best. They told her that she needed to walk a mile before they sent her home, so she did it way ahead of schedule for anyone else with a transplant less than two weeks prior. They told us to expect that after waking up from transplant, most patients need stay at the hospital for over two weeks... so Jodie did it in twelve days. Yup, amazing. I am so blessed to have her in my life.

Now that she is home, it is difficult figuring out what constitutes a "normal" day for us, or what we can expect Jodie to "normally" be able to do. She needs more time to get things done, but has way more energy than she is used to. We need to keep her moving, however she also requires a lot of rest and breaks. Her appetite is almost always going, and we left the hospital with instructions to eat fats and proteins to help build her body back up to full strength. She needs to walk as much as she can, but without her new wheeled walker (I call it her chariot), walking is an extremely draining activity

We actually got to take a walk together with Stella! We went outside! Twice! I walked the dog, and Jodie took her chariot. We went down our driveway, to the end of the block, and back again... I think it was close to 0.2 miles each walk, but with significantly more inclines than the hospital. We will be planning to walk a few times every day, and go further and further as Jodie gets stronger.

Thank you for all prayers and well wishes. Thank you for following with us on this journey. God bless.

Home!

Today was a busy day. I got up, had a biopsy and catheterizion of my heart, took a nap, had some lunch, then got a cardiac MRI and some x-rays. I got back to the room and the pharmacy called saying they have my discharge medications. They brought up a huge bag with 18 different medicines and we reviewed everything.

Then I got the go ahead to call Peter to come get me! They removed my PICC line and did a last dressing change. As the nurses, who are the same two that took such good care of me last week, we're finishing up, Peter walked to the door. He held my hand while they finished, and then I actually got a hug. There were lots of happy tears. 

We got together all my things and they called transport to bring us down. We safely got home and the pets have me a very warm, but surprisingly gently welcome. I'm humbled at how weak and frail I feel getting around the house, but I'm home! It feels so, so good.

Praise to God and thank you to everyone for all of your prayers. I'm home two weeks after transplant!

Feeling more centered

Thank you to everyone for your support yesterday.  This has been such a long journey in a lot of ways, and between steroids making me more emotional and missing Peter/ any type of physical contact, yesterday was a rough day.  I had an awesome nurse who was really great at helping me to see that what I was feeling was a normal response.  I also realized that part of the problem is that I feel SO GOOD.  I literally, even with aches and pains and healing, have more energy than since at least 2007, if not ever.  So I'm stuck in the hospital without  much to do, feel like myself, and have all this energy. The nurse coordinated Peter dropping off my computer and a few other things, and I allowed myself to just enjoy some  show (finished the Marvelous Mrs. Maizel and started Making the Cut).

I also had a lot of time to really just contemplate. Even though I was so disapointed, I'm realizing that it has not even been 2 weeks since my transplant.  I am so, so grateful for how good I feel and am realizing that as much as I want to get home, I need to just trust the process and recognize that I'm doing well. 

They took out my last chest tube today, and I'm working on getting in my mile of walking.  I have a biopsy and cardiac MRI on Monday, so if everything looks ok I should get to home monday or tuesday  But if it is later, that is ok too.

I got some paperwork today about providing information to the donor family.  I am actually really excited (and a little daunted) to write them a thank you letter, because how can you thank someone enough for this gift of life?  Please continue to keep the donor family in  your prayers.

I hope you all have a wondersful weekend.  If you're able to be with your family and pets, give them an extra hug or pet for me.  I am looking forward to being home.

Praying for Patience

This morning we were disappointed to learn that Jodie would not be coming home today. We had been excited to finally see and hold each other. In order to keep Jodie as healthy as she can be, we will need to wait. We will keep the blog posted when we receive updated news about discharge.

Thank you for all of your kind words, thoughts, gestures, and prayers. We know we are doing what needs to be done, we just need patience and perseverance to see it through in high spirits. It will be a joyful reunion when it comes, and we can't wait.

Thank you, God bless.

Trying to keep a schedule

So I've noticed that days here are either very busy or more erratic - lots going on. Then periods of nothing. There last two days I've been trying to keep to more of a schedule. I woke up about 6:30 and slowly get up, etc. Then breakfast, doctors tend to stop by. They were happy with my right drainage so one of my chest tubes came out today. That is a big step, so I was excited. The left was close but not quite there.

I got in an initial walk of 4 laps (18=1 mile), then was able to have a few nice phone conversations. Occupational therapy cleared me for home and said physical therapy did as well. After that I was really sleepy. I think it is related to my body needing to heal from the tube being pulled. I asked them to hold my lunch so it could be reheated, and I took a nap from 11:30-1:00. Of course they came and delivered my new walker, which I'll bring home with me, during this.

The nurse got me up, I ate, then scheduled a virtual walk with a friend in Seattle. While I did my 5 laps here, she took her puppers for a walk, and then we chatted for awhile. It was really a nice motivator.

Soon enough dinner was here, I ate except for my dessert then did another 5 laps. Now I'm relaxing and enjoying my chocolate chip cookie and chocolate pudding. I'm tired and want to nap, but also know a good night sleep is really important, so I'm going to try to just stay up a bit longer to get in my last laps, video chat with Peter, and then hopefully get a full night sleep. A musician friend in Nashville was doing a Facebook live stream so I watched for awhile and it was really great. Then I got to talk to Peter.  I'm really, really, really hoping that tomorrow is the day I can go home - I know it sound be within the next few days, but I'm praying for a reunion tomorrow. I cannot wait to actually be able to hold Peter - I haven't even held the hand of someone I know since I was wheeled back for transplant on 3/23. I am so looking forward to the physical contact - just a hug, etc. When we get home I'm going to promptly want a real shower - all we get here are wipe baths daily, and I can't wait to get clean. Then a good dinner, and sleeping in our bed. Excited to see the pets too, but it's really these little things that I miss. 

Healing while 'alone'

This has been an interesting time. Normally after a transplant, they restrict visitors to keep people healthy. However, with the covid-19 stuff going around, they're are NO visitors allowed. Let me tell you, this is hard. The nurses and doctors have been fantastic, but there is something about not actually having any physical contact, anyone's hand to hold, to look out for you while you're not feeling well, that is really off. I understand from an infection control standpoint, but from a physical/ mental health standpoint it is not the same.

Peter has been wonderful, and has been keeping up with several doctors/nurses and video chatting with me at least once a day. But it's not the same. I know he would be here in a heartbeat if he could. 

This has changed the nursing relationship a little. They always care, but I do feel like they are trying really hard to also be our friends/confidantes/cheerleaders too since it is so restricted. I know I miss my family and can't wait for a hug from Peter. But I am grateful to all the people trying to make this situation less bad. 

I had my first biopsy on Monday - they do a catheterization and pull out four little bits of the new heart to analyze. Results were great, and so far no sign of rejection (which usually happens at some point but we want to keep off), so I'm thankful for that. 

Right now my job is to walk, cough, eat, and control pain. So far today I've gotten in 4 laps twice, and 5 laps twice more (18 is a mile), and I have been shooting for the mile. Which I got this afternoon! Walking is helping my chest tubes drain, and once they get enough fluid off the tubes can come out and I can go home. We are praying they I can be discharged by Friday afternoon.

Love and miss you all. As I'm getting stronger I'm more up to calls and texts. I've been loving random videos and photos of your kids and pets.