Slow and steady-ish

It's been a bit since the last blog.  As time is going on, I'm not seeing as big of changes in the day-to-day, or even week-to-week.  Coupled with having to be inside all the time, I'm not having as many things happening that are big updates.

Things are still moving along, albeit slowly.  Some time last week I think it really hit me just how long this recovery is going to take.  I've healed from open heart surgery before, but I have not been immunosuppressed.  I was told this would make things take longer, but I don't think I really understood that until last week.  One of the main place I'm noticing that is my wounds - I still have scabs from 9 weeks ago where the chest tubes were, and it is only in the last few days that I have felt my sternal incision is really healed all over, even though there are still parts that can heal a little more. I am starting to do more of what I will need to do in my "real life", like be on the computer for longer, video chats, things around the house, and I am really noticing that while I can do a ton more than right after surgery, it definitely comes in spurts and there is a long way to go still. 

Last week they decided to discontinue one of my medications, and my steriod dose tapered down the beginning of this week.  Unfortunately, I think this may have led to a massive migraine on Monday that kept me in bed pretty much all day.  I'm hoping that things even out.  I've had a few days with potential side effects from medications, but nothing that lasts multiple days in a row so it is hard to tell.  I'm trying to be patient and just dealing with things day by day.

We got the treadmill, and I am being assessed by cardiac rehab next week, so I'm looking forward to starting an exercise program.  With my new recognition of my limitations, I am expecting that I will go back to needing more naps as I work to build up strength. It's a good thing that I'm healed enough that it is now safe to do a full shower with water overhead.  I'm still being careful of not getting the sternal incision too wet, but its coming along.

I'm keeping busy with reading, doing work, and a little sewing.  I'm trying to keep my spirits up by finding new ways to connect with friends, and given some of the new guidelines on what is safe, seeing as we can do more outdoor socially distanced, with mask, meet ups.  Not too many, and still only with people who are being careful, but it is nice to physically be able to see a friend.  We also downloaded an online boardgame simulator and are getting to know that.

I'm still concerned that I'm not seeing a ton of people in masks around.  It also has gotten really hot, into the 90's some days, so its harder to walk outside when its really hot out.  Luckily I can use the exercise bike, and with no resistance I usually just pedal for 10 minutes, which is about 2.5 miles.  I'm really hoping that folks are smart as states re-open and realize that we still need to socially distance and wear masks. 

The news about the injustice going on regarding the killing of an unarmed black man in Minnesota, and seeing how peaceful protests were met with tear gas and rubber bullets while angry white people were allowed to have armed protests with no resistance, has been a stark reminder that racism is thriving systemically.  We already were seeing that in some of the health disparities with covid, and I struggle with how to be an ally and help contribute to an anti-racist world.  There have been some good books recommended, and I am going to look into delving deeper into this.  I truly believe that it is going to take those of us who have white privelege speaking up, calling out these acts as wrong, and working with people of color (and taking their lead on what is needed) to really make lasting change.  I feel blessed to be part of a faith community who feels the same, and who is willing to call out injustice and stand up for what is right, even when it is unpopular or hard. 

I hope you all are able to find some hope and happiness in these times.  Don't worry if you don't get an update, as this may turn into more of an every week/every other week thing unless more things start happening that are worth updates.  At some point when I'm more towards healed and 'back to normal' this may shift, but for now know that if you don't hear anything, I'm most likely moving along slow and steady-ish.  I'm still not feeling as motivated right how to reach out to others given all that is going on and trying to get back into things, but I am always up for hearing from folks.  It may just take me a little while to get back to you.

8 weeks post transplant

Today is my last every two week visit, and then it goes to every month.  I decided to try the clinic biopsy again today - it really wasn't pleasant last time, but I was also only 3 weeks out and hurt all over at that time. I'm hoping it isn't so bad today - plus I brought pain meds just in case. Not having to go to the Cath Lab may save us hours today, and I won't get IV anesthesia so I'd be able to drive (which could be important down the line). 

We woke up a little early, and I was able to have a good breakfast and cup of English breakfast tea while reading a little. It was nice to be able to actually eat something. I brought with snacks for later, but it's good to feel full. I did my morning bp, recorded it, and then we got everything into a bag and headed out.

Since I've been walking so much better and longer distances, we decided to try my walking to clinic today. Worst case I sit down and we call for a wheelchair. So we got to the hospital, through the covid check station, then I took the elevator up a floor and I walked over. Lab draw wasn't bad, we got back to the room, vitals were drawn, and I took my meds. After meeting with the nurse coordinator, I went back for biopsy. It was much easier this time - still not fun, but minimally hurt and I was able to tolerate it a lot better. It's amazing what 5 weeks of healing does. We are able to discontinue one medication, and simplify taking a few more. After the biopsy I met with the doctor, who said to give it another week then I can full on shower! Woohoo! That will simplify things. We headed to the pharmacy, then we're back in the car and on the way home by noon. I was able to walk it all and didn't feel LL tired immediately afterwards.

We did a quick curbside pickup of baby quilt fabric from Joann's on the way home (yay projects for friends having babies), then it was lunch time. It was a quiet afternoon, and I ended up needing a nap. Had a low key evening and finally finished flipping the rest of the masks right side out and pinning them for the final stitches. Looking forward to being done with masks.

So take homes at week 8: I'm healing well, I need to be patient with this process, I'll most likely go back to needing naps as I do more, I can almost fully shower safely, buying fabric for quilts online is harder than doing it in person, Peter is awesome and supportive and I'm really lucky to have him in my life, and there is still a lot of time until I'm fully healed. 

Ebbs and flows

This has been an interesting week.  I have been both more active and more sedentary.  In a lot of ways I increased things I was doing, without realizing I was doing it all at once, and I felt it.  I don't think that I did too much, but it definitely led to me being tired and needing more rests. 

Overall it feels like an ebb and flow.  When the energy is there I feel great and can do a lot, and then it hits me and I need to rest.  What is interesting is how much video calls take up in terms of energy, as does working on the computer.  Those factors are different than what I would have expected.  I've found that is also affecting how much I want to talk on the phone.  So it will be interesting to see how that moves along.

Days seem both long and full, and at the same time like not much is happening.  Below are some random musings on things that have been going on.

- We no longer have a big tree in the backyard.  We had a beautiful old maple tree that was unfortunately rotted down the middle, so we had someone come and take it down this week. It was amazing - in just over 6 hours the entire tree was cut down, and then it was a few hours the next day to grind the stump.  We feel much more secure, especially as we could see how far the rot had gotten and there is a good chance that a big branch would have come down on the house at some point. Plus, we got to keep the woodchips and Peter mulched a few parts of the yard.

- My sternal wound is finally all healed!  It took more than 7 weeks and some wound closure strips to help keep it together in a thin line, but the last little bit of my wound is finally dry, and there is at least a thin layer of skin.  I'm going to give it a few more days to make sure its good, but that means next week I can take a real shower with the spray going over my whole body.

- Speaking of showers, this week I was finally able to shower 100% by myself, without needing any help.  This is helpful for me physically and emotionally, but also means that Peter doesn't have to take away from work time to do this.

- I've continued to work on my mask-making.  I have a little over 100 cut out and in various states of sewn.  My goal is get them fully sewn by the end of next week and donate them.  After that I'm going to take a break from the mask making, and move onto some other sewing projects.

- I have my last 2 week check-in on Tuesday and then move to monthly.  This is awesome.

- I really love tea.  Since I've been home, I've had more time to really enjoy cups of hot tea.  I was running low on a few of my favorite loose leaf blends from Tealuxe, so I went online to buy more and realized that the Providence, RI store closed in 2019.  I decided to buy from a local Chicago store that I had gotten some tea from at the Kristkindl mart back in the early 2000's.  It is delicious, and I'm realizing that I need to make time for a leisurely cup of tea in my morning routine, even once things are more 'back to normal'.  My favorites of the new teas are an English Breakfast tea blend, and a green coconut. 

- Wednesday night we made red velvet cupcakes with cream cheese icing (box mix and cheap icing)... While limited by the amount of paper shell things, we were able to fill 48 minis, and 9 normal sized! All was fun and games until someone made the comment that the batter looked like ketchup... But seriously, they tasted fantastic. And I'm really looking forward to Peter making them from scratch next time. We decided that the red velvet would be enhanced by adding mini chocolate chips.

Beautiful Day

Today was a beautiful day outside. We started our morning doing some chores around the house, then after lunch Peter jumped my car, as the battery had died from not being used. We decided to have an outing, since the car needed to be driven. This was my first time, other then for going to the hospital, being out. We drove down to Carrboro, where we donned our masks and then did a walk on the bike trail. We picked a small section of one that would not be very crowded. Good thing too, as almost everyone we saw out was not wearing a mask. Halfway through our walk Peter's sister Catherine called, and it was with the exciting news that she and Travis are engaged. Congratulations you two - we are so happy for you! 

We finished our walk, then Peter grabbed us some cold drinks and chocolate croissants from Weaver Street Market. Both were very satisfying. After that we headed home and have had a relaxing evening of reading and dinner. We opened up a bottle of sparkling cider to celebrate the day, getting more normalcy, Catherine and Travis, and the memory of Peter's Grandpa. 

Here is a toast to beautiful days, being together, and staying healthy. I know it's exciting that restrictions are lifting, but things aren't over yet. Please stay home when you can, and when you go out wear a mask. Can't wait until I can see and interact in person with you all when things get better, but I'm guessing that's going to be awhile.

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. 

Blessings in the unexpected

Since Jodie got home, a lot of adjustments had to be made for me to be better able to help her. And as she has improved, a lot more adjustments are being made to accommodate her increasing ability to be independent. Its been a constantly shifting situation that will likely stabilize further in the next couple months. We take each day as it comes, and thank God for having the ability to be flexible reacting to unexpected changes.

Jodie has been keeping herself very busy cutting fabric, getting masks put together, unpacking stray boxes from our move two years ago, cooking lunch/dinners, re-organizing her sewing room... and I've even caught her on her computer responding to work emails and calls. Yup, I'm so done trying to get that woman to sit still; but I wouldn't have her any other way.

We recently made the decision to swap her sewing room with the space I was using to work from home. Now I actually have a home office with a door that closes, and I can keep my 3d printer running making mask ear-savers (without worrying about the cats trying to help). Its wonderful to finally have space to spread out my projects and set out some of my stuff that have only seen boxes for the past few moves.

All of these things are changing around us; some of our own volition, some happening to us. Through it all I am struck by how blessed we are to have each other during this time.

God bless, thank you for reading, following, and supporting.

Lots of pills

When I was discharged, I mentioned that they sent me home me 18 medications.   It seems like a lot of folks were surprised at this.  Before transplant, I took 9 medications every day, some multiple times a day.  I thought it would be interesting to share with you what types of medications they have me on.

Anti-rejection (1, 2, 3)
Our immune systems have a set of cells called T-cells, These are made in our bone marrow, and then travel to the thymus.  Most of the cell is the same, but it has small proteins on the outside that can recognize and bind to other small protein receptors on cells. There are lots of different of these proteins, in the same way that there are lots of different locks and keys. Our body determines which ones bind to our own cells, or which keys fit perfectly or don't fit at all, and gets rid of those so our immune system does not attack itself. The ones that fit a little bit it allows to develop, as those develop into more specialized immune cells. Once the T-cells bind and recognize something as  'non-self', it then signals other types of immune cells that will attack the invaders.  Overall, there are four main types of T-cells. This response is what can cause a fever, and often destroys the invader cells.  When you hear about an auto-immune condition, this system is not working right and our immune cells are attacking a part of our own body.

Since my heart is not a perfect match, my T-cells would recognize it as foreign, and that could set off the cascade resulting in rejection. To stop this, there are three main medications. Cellcept and Tacrolimus both suppress the one of the types of T-cells being made so that there are less of them around to notice my heart and signal these downstream effects. I am also on Prednisone, which is a steriod that also decreases the immune system.  This decreases a different type of T-cell that would lead to attack and inflammation.  If my levels of these are too low, then I could get rejection.  The Prednisone I am on a taper for, so I'll slowly take less every month and be off of it (potentialy) by the end of November.

The reason that transplant patients need to basically be in isolation for the first few months after transplant is that we are really immunosuppressed.  Over the years, as things go well, they can sometimes decrease amounts, but I can expect to take some anti-rejction meds the rest of my life. We seem to have found a good stable dose thus far.

Anti-Infection (4,5,6)
Since my immune system is so suppressed, it is much easier to get sick. Because of this, they have me on three different medications - one that is an antibiotic to keep me safe against bacterial pneumonia, another that is an antiviral that fights off common viral infections that people are normally exposed to but might not be active (like the one that causes cold sores), and an anti-fungal medication to fight against thrush. These are usually only prescribed for 3-12 months after transplant.

Heart-function medications (7,8,9,10)
I went home on two blood pressure medications, as tranplanted hearts tend to have higher blood pressure. So far we have swapped out one of these for a different one, which seems to be working better.  We are still working on the best doses long term.  I also take a baby aspirin, and a medication that both lowers cholesterol and helps prevent rejection. These are all most likely long term.

Pain medications (11, 12, 13)
They sent me home with Tylenol, something a bit stronger as a 'just in case', and a medication that helps with nerve pain.  So far I am off the Tylenol, and I'm not needing the stronger pain meds anymore.  I am not sure how long I stay on the one for nerve pain, but will be asking when we go into clinic this coming week.

Other medicationss (14, 15, 16, 17, 18, 19, 20)
There were some other medications they sent home with me.
- A diuretic to help get rid of the excess water in my body.  This helps the heart not have work as hard, and it really brought down my swelling
- A medication that inhibits stomach acid production to decrease gastrointestinal discomfort
- Magnesium, as one of the medications can decrease levels
- Calcium, to help with bones health as I heal
- One to help with sleep and mood, as patients are more prone to depression immediately after tansplant
- One to to help with diarrhea (which luckily I have not needed)
- They also added potassium after my diuretic increased, which caused my potassium levels to go down (but now I'm off that)
Most of these I won't need long term.

So there you have it.  Once I get to a year out, it may get closer to the number of medications I used to be on, but for now its all 18 every day (some of them multiple times).  I have 5 medications times throughout the day - 9am, when I take 11 of these (total of 19 individual pills/capsules given the available doses and what I need). Then again at 1pm, which is just two pills.  I have one pill at 3pm, and then at 5pm I take 4 more medications.  Finally, 9pm is my last pill time, and I take another 5 meds, (total of 9 different individual pills/capsules).

Its been interesting learning all these new meds. I was on most of my old ones for 13+ years, so I knew what they were for.  Right now, there are only 2 medications that stayed the same, so I have had to learn all the rest. Luckily, only one of the medications tastes really bad, and I'm good at swallowing pills.

So if you are ever looking to reach out to me, its usually pretty safe to do so a little after a medication time, as I will be awake and most likely figuring out what to do next.