Another month has passed since transplant. Some things have changed, while others haven't. I can still do much more than when I came home from the hospital, but these things still make me tired. I'm really hoping that getting into a home cardiac rehab routine will help with my stamina and productivity. My chest is not nearly as sore as it was, and I even did some specific chest exercises and was not sore the next day - so that's a win!
My weight is still quite a bit up from before surgery, and I'm told that this will probably be the case for awhile, since I'm on steriods. I'm still not happy with it, but the doctor gave me a little more freedom in controlling my diuretic, so at least now I'm on a dose that I feel like keeps me dry enough that I'm not getting the painful skin stretching from holding so much fluid, but not so much that the team things its bad.
I still have a lot of medications that I'm taking, but a number has fallen away. As doses have changed, most of the pills I've been able to get in a single dose versus taking multiple of the same medication in a smaller dose.
My mood has been a little better too, as I'm not as irritable unless I'm tired. I still need a lot of sleep, but thats ok. Some days I don't need a nap, others I really do. I'm getting a little better at accepting this.
In terms of my mind, I feel like some of the fog is finally lifting. I don't know if there is any science behind it, but after my last open heart surgery I feel like it took some time for my mind to really come back. I could still think, but it wasn't as clearly and higher level functioning wasn't as easy. Focus on certain things is still hard to sustain, but in other areas it is becoming easier.
It feels good to be doing therapy again, even if I only have taken two of my patients back so far. I have one more I've reached out to, and as I start feeling better and looking forward to having that structure. Granted, I only feel like I can realiably seen one a day at this point, but as my stamina gets better that should too.
I definitely underestimated how long healing while immunosuppressed takes. Part of me thought that I would be almost 100% back to normal by now. I think part of me not being further along is due to covid, which has meant I'm stuck inside and not moving as much as I would have been if I could go out places. But most likely, I just was overly optimistic. I'm really grateful that Peter can be home working.
We are trying our best to vary our menu each week. We get tired of certain things, and have been looking for easy things to make (that are low sodium) and we can cook from mostly frozen ingredients. We unfortunately keep forgetting to take out meat to defrost for the next day, which doesn't work great. We did discover that Panera has a deal on Tuesdays where you can get a bakers dozen bagels for the price of a half dozen. We did that two weeks in a row, but took a break this week as we are a little bageled out. But we made yummy pizza bagels, bagel sandwiches, as well as just bagels and cream cheese.
Yesterday was my first at home exercise, followed by lots of hunger and eating, then a telehealth session with a client. After that I was so tired I needed a 2+ hour nap. Today I've been moving more slowly. I'm listening to my body, and will do my 20 minute walk tomorrow. I figure this week my goal is to do at least 2 full workouts (one is done) and at least 3-4 days with a walk and strength training, By two weeks from now I want to be doing the full workouts 3 times a week and walking/strength training the rest of the days. One of my good friends is also trying to be more actice, and we are being accountability partners for each other. I suppose by putting the info on here it will also help hold me accountable.
I've been impressed with some of the new research articles coming out that show the effectiveness of masks. One study found that wearing a mask may protect you up to 65%, and obviously it protects others from you (if you were infectious and didn't know it). I'm really hoping that the tide will turn and many more people start wearing masks - if everyone did, infection rates would drop low enough that in 8 weeks it would not be too bad. Until then, I'm on house arrest minus being outdoors without others around. I'd really love this not to be the case, and wish there was more I personally could do. Unfortunately, its not my decision. Please wear your mask and encourage others to do so.
Tuesday, July 21, 2020
Tuesday, July 14, 2020
A new approach
I had clinic today, and my appointment was the first biopsy of the day scheduled at 8am. It took longer to get into the hospital with the screenings last time, so we decided to get there a little earlier. I finally rolled out of bed a little after 6:30, hopped in the shower (since I have to wait at least 24 hours after biopsy to remove the dressing and shower again), made tea and some breakfast, and then we were out of the house by ten after 7. I had moved my pills over to a portable container for the day. We got to the hospital, parked, and were waiting to get in by 7:40. It went fairly quickly. Checked into clinic, was only sitting a few minutes before they called me for bloodwork, and then it was into a room.
There are a few dedicated transplant nurses, and I really like both of them. The older one checked me in and caught up a little. Blood pressure looked good when it was first taken. The doctor came in, and she is one of my favorites from when I was inpatient. She had reviewed my chart, and we talked about the high blood pressures at cardiac rehab. She very assertively said that my heart is very healthy, that the high blood pressure is because of some of the medications I am on, and that they see people have bps into the 200s when they exercise all the time. She was not concerned in the same way that cardiac rehab was, and once I told her about my infection control concerns, basically said that since I have a treadmill and bike at home, she thinks I would be fine to do it at home. She also looked at my bp meds, and asked why we hadn't increased one in particular (which is one I've asked them about raising before). She got the ok to decrease one of my meds to taking twice a day instead of 3 times a day, and increased dosage of another med too.
The doctor also asked me about the past biopsies and how they were. I was honest that the first one was not pleasant, the second one was not bad because they used a lot of lidocaine, but the last one was not very pleasant again. She said, without me asking, that she would plan to use a bunch of lidocaine. I signed the papers, and then I took a few tylenol and the anxiety med I was given to help make things a little easier.
They took me back, and for the first time it was an all female team (echo tech, doctor, and nurse). We put on some swing music, and as I listened to it I was able to relax and picture being on a dance floor and how I would want to dance to the songs. Getting the lidocaine hurt a little, but it was really not bad when they put in the line. The biopsy went really quickly. Once they removed the line, there was a little trouble getting me to fully clot, but I was calm and was ok with holding the guaze to get back into my room. Once I got back to the exam room, they took my blood pressure, which was ok, and then checked my neck. It was clotted and they put on the dressing. Ten minutes later, they did another bp and it dropped nicely into a healthy range. The doctor came in briefly to give me the after visit summary, then we were on our way. At 9:50am! We have never gotten out before noon before!
I'll get the biopsy results tomorrow. We put in a curbside order for Panera (we discovered last week that on tuesday you can get a bakers dozen bagels for half price), so we have these for breakfast/lunch this coming week, and Peter got a sandwich while I got soup. I had a little something to eat, then laid down for a few hours. After waking up, my neck was still sore, but I'm much more alert and functional than I was the last time.
So I think this new approach to biopsies is going to be good. The doctor told me how much lidocaine she used, and will put it in her note so they can do that next time too. And I am going to use what I have learned at cardiac rehab to come up with an at home plan. I need to decide if I'm willing to go for another session, but even yesterday they had changed things in a way that increases your exposure to other patients, so I'm thinking maybe not. Also, if the actual cardiologists who deal with transplant patients are saying that I am really healthy and should not be holding myself back from walking/biking normal speed, then I trust them more than cardiac rehab. I'm going to talk it over with my nurse coordinator and decide from there.
By the time I was up, had lunch, and feeling more awake, I didn't really have the focus for work. But I think that should get better as time goes on. I think we are definitely going to request the first biopsy of the day if we can though.
I finished my last sewing project, a set of 8 quilted placemats, and Peter is going to mail it in the next day or two. The last project before the placemats was a baby quilt, and we got to do a video chat with our friends opening it and video meet the new baby! He is so adorable. Now I'm starting on a t-shirt quilt for our cousin, to be done before she gets to college in the fall. I have one queen size wedding quilt to make, and need to quilt together the two sides of our king size quilt. I'm sure there will be more projects soon - there is at least one more family baby who will be getting one. I should also finish the masks that I had started months ago and donate them - they are sitting there collecting dust.
So my new approach is going to need more of a set schedule each day. We will see how that goes.
There are a few dedicated transplant nurses, and I really like both of them. The older one checked me in and caught up a little. Blood pressure looked good when it was first taken. The doctor came in, and she is one of my favorites from when I was inpatient. She had reviewed my chart, and we talked about the high blood pressures at cardiac rehab. She very assertively said that my heart is very healthy, that the high blood pressure is because of some of the medications I am on, and that they see people have bps into the 200s when they exercise all the time. She was not concerned in the same way that cardiac rehab was, and once I told her about my infection control concerns, basically said that since I have a treadmill and bike at home, she thinks I would be fine to do it at home. She also looked at my bp meds, and asked why we hadn't increased one in particular (which is one I've asked them about raising before). She got the ok to decrease one of my meds to taking twice a day instead of 3 times a day, and increased dosage of another med too.
The doctor also asked me about the past biopsies and how they were. I was honest that the first one was not pleasant, the second one was not bad because they used a lot of lidocaine, but the last one was not very pleasant again. She said, without me asking, that she would plan to use a bunch of lidocaine. I signed the papers, and then I took a few tylenol and the anxiety med I was given to help make things a little easier.
They took me back, and for the first time it was an all female team (echo tech, doctor, and nurse). We put on some swing music, and as I listened to it I was able to relax and picture being on a dance floor and how I would want to dance to the songs. Getting the lidocaine hurt a little, but it was really not bad when they put in the line. The biopsy went really quickly. Once they removed the line, there was a little trouble getting me to fully clot, but I was calm and was ok with holding the guaze to get back into my room. Once I got back to the exam room, they took my blood pressure, which was ok, and then checked my neck. It was clotted and they put on the dressing. Ten minutes later, they did another bp and it dropped nicely into a healthy range. The doctor came in briefly to give me the after visit summary, then we were on our way. At 9:50am! We have never gotten out before noon before!
I'll get the biopsy results tomorrow. We put in a curbside order for Panera (we discovered last week that on tuesday you can get a bakers dozen bagels for half price), so we have these for breakfast/lunch this coming week, and Peter got a sandwich while I got soup. I had a little something to eat, then laid down for a few hours. After waking up, my neck was still sore, but I'm much more alert and functional than I was the last time.
So I think this new approach to biopsies is going to be good. The doctor told me how much lidocaine she used, and will put it in her note so they can do that next time too. And I am going to use what I have learned at cardiac rehab to come up with an at home plan. I need to decide if I'm willing to go for another session, but even yesterday they had changed things in a way that increases your exposure to other patients, so I'm thinking maybe not. Also, if the actual cardiologists who deal with transplant patients are saying that I am really healthy and should not be holding myself back from walking/biking normal speed, then I trust them more than cardiac rehab. I'm going to talk it over with my nurse coordinator and decide from there.
By the time I was up, had lunch, and feeling more awake, I didn't really have the focus for work. But I think that should get better as time goes on. I think we are definitely going to request the first biopsy of the day if we can though.
I finished my last sewing project, a set of 8 quilted placemats, and Peter is going to mail it in the next day or two. The last project before the placemats was a baby quilt, and we got to do a video chat with our friends opening it and video meet the new baby! He is so adorable. Now I'm starting on a t-shirt quilt for our cousin, to be done before she gets to college in the fall. I have one queen size wedding quilt to make, and need to quilt together the two sides of our king size quilt. I'm sure there will be more projects soon - there is at least one more family baby who will be getting one. I should also finish the masks that I had started months ago and donate them - they are sitting there collecting dust.
So my new approach is going to need more of a set schedule each day. We will see how that goes.
Thursday, July 9, 2020
One stitch at a time
In between appointments, trying to get in exercise, working, and the other things to take care of myself (eating, napping, etc), I'm also trying to work on sewing projects to give myself some sense of normalcy. It has been a challenging week. One of our dear friends lost her partner unexpectedly in a tragic accident over the weekend. Covid has made it so I haven't been able to be as available to her as I want to be, and its been a sharp reminder that life is going on despite covid - both the bad and the good. It's also been a recognition that some things feel more important than infection control, even though that is terrifying to really think about. Trying to be authentic with everything going on is hard, and unfair.
On Monday I had cardiac rehab, and once again my blood pressure was high. They made some changes again, and while I trust my team and know it will eventually get under control, its also very frustrating. I'm not even allowed to walk or pedal at what is a normal/comfortable pace for me - and I'm trying really hard to not get discouraged, but still being in a place that I have to hold myself back to be safe is just frustrating. I know that over time this should even out and I will be much more able to be athletic than before transplant, but right now it feels like I'm just stuck. I went to the gym before transplant and was constantly battling to stay motivated when I couldn't do anything that felt like exercise. Now, I physically can do things that feel like I could be pushing myself, but it isn't safe yet. In some ways it feels worse, as I'm having to actively hold myself back, and before at least I could go at what felt like a natural pace.
The current sewing project I'm working on has proved to be more tricky than I expected - there was just not quite enough fabric, so I had to figure out some creative ways to get around it. Then when doing the binding, I realized that to really do it right, I needed to do some hand sewing. This is not my strong suit, is tedious, and is time consuming. But it is the right way to do this. So I'm having to take it one stitch at a time. That seems like an appropriate metaphor right now - it seems like a lot of things in life are going one stitch at time. And they are frustrating and harder than they should be at times, and not coming out the way I had planned. I just hope that the end results are close to what I have in my head, both in terms of the sewing project and in terms of life.
Please send positive thoughts and prayers to our friend who is grieving, and to me for perseverance. Given that covid is surging in NC it is hard to see where things are going to even out and normalize, and I would love a little normal right now.
On Monday I had cardiac rehab, and once again my blood pressure was high. They made some changes again, and while I trust my team and know it will eventually get under control, its also very frustrating. I'm not even allowed to walk or pedal at what is a normal/comfortable pace for me - and I'm trying really hard to not get discouraged, but still being in a place that I have to hold myself back to be safe is just frustrating. I know that over time this should even out and I will be much more able to be athletic than before transplant, but right now it feels like I'm just stuck. I went to the gym before transplant and was constantly battling to stay motivated when I couldn't do anything that felt like exercise. Now, I physically can do things that feel like I could be pushing myself, but it isn't safe yet. In some ways it feels worse, as I'm having to actively hold myself back, and before at least I could go at what felt like a natural pace.
The current sewing project I'm working on has proved to be more tricky than I expected - there was just not quite enough fabric, so I had to figure out some creative ways to get around it. Then when doing the binding, I realized that to really do it right, I needed to do some hand sewing. This is not my strong suit, is tedious, and is time consuming. But it is the right way to do this. So I'm having to take it one stitch at a time. That seems like an appropriate metaphor right now - it seems like a lot of things in life are going one stitch at time. And they are frustrating and harder than they should be at times, and not coming out the way I had planned. I just hope that the end results are close to what I have in my head, both in terms of the sewing project and in terms of life.
Please send positive thoughts and prayers to our friend who is grieving, and to me for perseverance. Given that covid is surging in NC it is hard to see where things are going to even out and normalize, and I would love a little normal right now.
Subscribe to:
Posts (Atom)