Another check up

I went in today for my first once a month check-up.  We got there at the right time, but for some reason it took a while to get in.  The person at screening in the hospital lobby took a while to find me in the system, and then the person who checked me in at the clinic took some time too.  Despite everyone being required to put on a mask when they came in, there were still a shocking number of people not really wearing them. Even at the check-in point, a man put on a mask, then kept pulling it down to talk to the staff, and no one said anything to him about it.  Then as I'm checking into clinic, the person in front of us has someone with them who has a mask underneath her nose.  We sat down where there wern't a lot of people, but looking over into the corner, two other people have pulled off there masks and are playing on their phones.  In the cardiology clinic waiting room.  What is wrong with people?

I'm not going to lie, I was both pissed off and scared.  Covid infections are the highest they have been ever in our state, there are more people in the hospital than I've seen thus far, and people are just ignoring the one thing that has been shown to slow down infection.  In a clinic where people who are high risk are going to be.  And not one staff person went and said something to anyone that we saw (not that I expect them to), but it was really hard to stay calm.

I got called back for my lab work.  Since the lab area is so small, Peter went to the nurses and let them know I was there, then he was put in the room for me to wait instead of in the hall.  Almost like we have this down to a science. I got to the room, the nurse did her check, and I took more morning pills,  Then we waited for a bit until the doctors came in.  We had a resident (soon to be fellow) and a current fellow (soon to be attending) come in.  For those of you not familiar with these terms, medical students graduate and become residents, where they work and apprentice in hospitals in a specific area.  They pick a specialty, but still have to rotate to different areas.  During residency they pick their specialty, and for most of them they then get a fellowship for after they graduate, to learn more in depth but with more responsibility. After that comes being a attending, which is a full doctor.  The fellow was one of the doctors that was in patient after my transplant and this is the first time I saw him in clinic.  I introduced him to Peter, and the fellow lamented about how unfair it was that Peter wasn't allowed to be in the hospital with me.  This is one of the doctors who would just check in and see how I was emotionally, and recognized that things sucked and it wasn't fair.  I appreciated it. 

I updated them on the blood pressure and cardiac rehab issues.  Yesterday at rehab, my bp was a little better after med changes, but still got way too high when I actually pushed myself.  We went through all of that, and then I signed the consent for the biopsy. They took me back right away, and the nurse had one some mid 90's music - old school Mariah Carey, Boys II Men, and All For One.  The only problem was it kept stopping due to the wifi having issues.  Its nice to have background music to focus on during biopsies.  The nurse got me prepped, the Echo sonographer got some pictures started, adn then the resident and fellow came in the room.  They gave me numbing medicine in my neck and got the tube into it.  This is not a pleasant process, and I ended up asking for more numbing medicine as it still hurt.  The attending came in, and then the fellow instructed the resident on how to do the bipsy - which is three pieces.  I couldn't really feel anything most of the time because of the numbing, but as most of the time the background music was off, it was a little disconcerting to hear them talking about everything so technically. It took a little longer than normal, but finished off.  I still really don't like the neck biopsies, but they are in a lot of ways easier than going to cath lab, at least in terms of timing. 

We waited a bit and the attending came in, and they adjusted my meds a little bit.  They still don't want me to take the diuretic every day, but I am allowed to take more if I feel like I need it, which is good.  The doctor assured me that they don't think that my heart will normally have high blood pressure is because of one of the anti-rejection medications, which over time my dose will come down. 

On the way home we put in a Panera curbside pick up order, and stopped to get a Target order picked up curbside too (needed more cat litter).  That was easy enough as they came right now and put it in the back of the car, and then when we got the food they brought it right out.  I had lunch and then decided to lie down, which turned into a 3 hour nap. 

Waking up, my neck still hurt, so I decided to just take it easy.  The rest of the evening as been lying on the couch, reading, making and have soup for dinner, and I'm heading to bed early.  I'm hoping that I'll feel better tomorrow and can get in a productive day.  I have clearance to actually do a little more exercise - slow walking daily, plus twice a week adding in 20 minutes of actually working out on the exercise bike.  So I'm going to start working that into my schedule.  I was also given the ok that I can move my morning med time a little earlier, so hopefully I can actually get started in my days soooner and be a little more productive.

As I up the exercise, it will be interesting to see how my energy and appetite work with that.  I'm still not quite at a set point, although there seems to be a little more stability. 

I'll hear tomorrow or Thursday about my biopsy results, hopefully still no signs of rejection, and starting tomorrow I double the new (old) med I'm on.  There is one medication I was on prior to transplant they restarted last week, and it seems to have lowered my resting heart rate by about 10bpm, which is good.  The doctors decided to double it and see what happens.  When I restarted it last week I didn't get any side effects, but when I first started it 13 years ago it was a doozy, and I was really sensitive to the side effects.  I'm hoping that since I didn't have much of an effect last week, upping it won't be bad.  If it is, I'll have more sleepiness and moodiness to deal with.

The one things that was encouraging is that of all the things we brought up, including my headaches, we got validation that it is unfortunately just part of the process.  I wish it was a different message, but at the same time at least the slightly abnormal is "normal" in this case.  The attending also did not seem nearly as concerned about me working out as the cardiac rehab folks are, so that was good.

We'll see how things are moving forward.  I'm definitely more concerned about infection risks now given that it seems like a lot of people have started letting down their guard.  I really, really wish that people would just take wearing their maks seriously.  I'm legitimately worried that it will be more than 6 months before I can really go anywhere, and that as time goes on I'm going to have to start missing out on things because of the potential infection risk.  Its really hard to see the end in sight with covid, and unfortuntely my faith in people is somewhat low given that we are only as strong as the weakest link, and its clear that a lot of people aren't worried about this (just from what I'm seeing at the hospital, not to mention in the news).  Please stay diligent folks. 

Happy Anniversary

Yesterday marked the 4 year Anniveresary of when Peter and I got married.  In some ways it feels like much longer.  I was reflective yesterday, and so thankful that life brought us together.  I cannot imagine these last few months (and years) without him.  I am so blessed to have such a thoughtful, caring, supportive partner (and handsome and smart too!).  As we had been talking about how to celebrate, it was somewhat hard because we obviously can't go out.  But that wasn't going to stop us!  We decided to order in a nice dinner, and found a yummy looking Spanish restaurant with tapas and paella.  We put in an order for pick up.  While Peter went to get it from downtown Durham, I dug out the colored napkins we used on the tables at our wedding, the woven center pieces, and a vase, and I set up our table with our nice dishes to be special.  We have some pine scented candles, which helped bring in the Maine vibe as well. The food was delicious.  After dinner, we looked through our wedding albums and digested a bit. Then we had some Eli's cheesecake for dessert - not the same flavor as what we had at the wedding, but still really tasty.

 
Then we turned on the song from our first dance, Feelin' Good by Micheal Buble, and we shared a dance in the kitchen.  We have danced a few times post transplant, but this is the first time Peter didn't have to be careful with me and I was not sore from the pulling or movement.  This was exciting, as I am not noticing the improvements as easily nowadays since things have evened out. I can't wait to be even stronger, and to eventually be able to swing dance again - both lindy hop and blues! Of course, it will be some time until that is safe in a crowd because of covid, but at least Peter and I can practice.

It is also our two year Anniversary of owning our first home.  When we were looking, we had gone back and forth between one story and two story houses.  We both really like having two stories, but I had wanted a one story one knowing that transplant was probably coming soon.  I am really glad we picked this house, both in that it is one story, and because it has so many different spaces we can be in.  I think that if we had less space Peter and I might be getting in each others hair a little too much during quarantine.

This week was a good week.  I had my second cardiac rehab on Monday, and it was a little better than last time.  The person I worked with was more stringent about wiping down machines, and she had me do a lot more - a total of 35 minutes of exercise, 20 of it pushing myself.  Since Peter isn't allowed to come in, he brought his work computer to set up in the car, and went to get coffee.  He picked me up a bagel and cream cheese so I had something to eat when I got done, which helped.  I then went home and worked for a few hours, had lunch, took a nap, and then got in a few more hours of work.  It was my most productive work day yet, and if felt good.

I've started pushing myself a little more this week, and am working on getting my endurance up in terms of working and exercise.  I still have days that I feel more "fuzzy" and it is hard to concentrate, but they seem to be getting to be fewer and further between.   I am starting to think about what I would be doing, 3 months out, if there was no quarantine, and get more on a schedule to take that into account.  As I'm doing more I am needing a rest/nap in the afternoon, usually around 1/1:30, but my team said they would rather I push some and need the nap then not push.

My body is still healing a little, but its getting closer to being  not sore, at least my chest area.  Once it gets to that point I think I will be able to relax a little more and feel more comfortable with moving more. I have lifted slightly heavy things without a problem, which is good.

When I had my last open heart surgery, I remember that at some point, within a week, I really "turned a corner" and went from being more frail to more strong.  I don't think the same process is working here, but looking back a few weeks I think I have turned at least part of the corner.  Talking to one of my friends who had a heart transpalnt a few years ago, he said he still needs naps at times, so I'll just have to take that in stride.

While I'm worried about covid and it has thrown a wrench into a lot of our early plans, I'm also grateful at being able to be home and work from home, and being able to have Peter work from home so he is here if I need anything. Please stay safe everyone - wear a mask around others, if you are going to be around other people try to do it outdoors and socially distance/mask, and stay vigilant.  We are not through covid, which is surging here in NC and other places, and I think its been easy to get lulled into thinking things are better.

Looking forward to when we can be around others, and hoping that covid dies down so we can enjoy attending the weddings of a handful of our friends and family who are getting married some time in the future (two have had to be rescheduled already).  I cherish our wedding memories, and hope that our loved ones get to have the experience they want, and the love and support we felt 4 years ago.

3 months out

In some ways it is hard to believe that it has only been 3 months since transplant (and 2 more weeks since I went into the hospital), and at other times it feels like it has been longer.

When I was started the transplant evaluation, I reached out to a friend of mine who had a heart transplant a few years ago.  He told me that the first year was really hard, and that he couldn't fully explain how or why.  I'm starting to understand that.  Nothing bad is happening, but things are starting to be hard.

I'm still dealing with some side effects from medicaitons.  I keep gaining water weight, which is making me uncomfortable, making it harder to walk without getting short of breathe, is frustrating.  I've been getting headaches more recently, and its unclear if it's sinus related, migraines, or related to meds.  This has made me less able to do some of things I had been doing, and has been making my mood slightly worse - more irritable, frustrated, etc. 

I also started cardiac rehab on Monday last week, and I was not impressed.  There were more people than I expected there, they had me clean my machines after use without really closely watching, and that means that I hav eno idea how well the preious patient cleaned it.  She even had me use a machine that someone had just gotten off of.  I used purell a lot during the sessions, but it made me really uncomfortable.  Plus, my blood pressure was high when I started and really high after exercise, so they had to check in with the nurse to see if I eas even allowed to keep exercising.  So I was obviously frustrated and not happy, and that also meant that she was very catious about what she recommended I do at home.  The team changed my meds around, so hopefully its better next week.

On one hand, I feel so frustrated, and there is so much out of control.  On the other, I feel selfish because I should expect this and there is so much going on.  I'm working on getting the support I need, but it is hard.  In ways I would not have expected.  I am praying for the peace to accept things that I don't like, and to help calm my anxiety about my health.  Overall, I'm told I'm doing really well healthwise - its more about my ability to deal with it now.

Some changes

Early this past week, I called to check in with my nurse coordinator as I had been noticing some side effects, including weight gain and diarrhea.  The doctors decided to bring me in for a cath, biopsy, and labs to be safe.  We had a long day in clinic on Wednesday as the hospital is back to doing elective procedures, which meant there was a long wait in the cath lab.

It looks like things are doing well in terms of rejection - still no sign.  My labs showed that my levels of one anti-rejection medication was high, and my kidneys are still not super happy.  The medication level that was high is one that can negatively affect the kidney, so they are decreasing that medication.  It turns out even though I gained back some water weight, I'm actually almost a litte "dry" (meaning I dont have enough fluid in my system), so they are stopping my diuretic too. One of the other anti-rejection medications can cause diarrhea, so they are decreasing that as well.  The overall plan is to eventually decrease these meds as low as possible while having them still be effective, so this is hopefully a step in the right direction.

Friday I had my intake assessment at cardiac rehab.  I had a 1 hour phone call with the nurse Thursday, and then today it was only 30 min in person.  In seeing the facility, there were more people working out than I expected, and while they were distanced, it was not as much as I would have liked to see.  I have my first appointment to work out on Monday morning, but I'm guessing I am not going to be comfortable going there once a week given how close people were (machines were probably 6 feet apart, but they had 5 bikes and instead of alternating people on them, so on 1, 3, and 5, they had them on three next to each other).  We will see how that goes.

The good news about them opening things up is that I can now get labs at the clinic closer to home in between appointments if needed, and my next appointment is not for a month.

So now I get to work on getting my stamina up so I can get more back to "normal". This weekend so far I've worked on some sewing projects, Peter and I went and got ice cream cones and walked around with them, and today we are tried a socially distanced board game with friends outside (using a fan blowing away from me, masks, and purell to stay safe) - I am definitely not advocating going inside peoples houses yet, but outside, with masks on, and only one household touches the board I believe should decrease risk of potential infection. Please keep being safe. 

I would also be remiss to not mention everything going on in terms of protests. My heart is heavy and I wish that there were quick fixes. I know a lot of white friends who are against racism but don't typically speak up. I would say now is the time. It's not enough for us as white people to be not racist - we need to actively be anti racist. This means looking to see our own privelege and how we unknowingly support systemic racism. To be silent right now may be easier, but it is also seen an implicit agreement that things are ok. I'm not anti-police, but police brutality and the disproportionate percentage of people of color arrested and who deal with other that violence is not ok (that anyone has to is not ok as well). It took until my social work grad school classes to really learn a lot of this history. If anyone is wondering where I got this information, or would like to read some books/watch movies about these issues, let me know as I have a list of titles I'm wanting to read and would be happy to do it with you.