Morgan's Journal

After 12 weeks- 36 sessions , I finally completed my Cardiac Rehab Program! 👊 I will certainly miss the people and the experience. Here's where I'm at today... ABSOLUTELY EVERY experience in your life is progress. Open heart surgery taught me this. Although I had a period of time where I was functionally impaired, I was ALWAYS growing as a person. My lows gave me a deeper awareness, I grew an appreciation for things I took for granted. I'm so grateful for not only a new and improved heart, but for a new set of eyes. Eyes that allow me to see the world in a more beautiful and compassionate way. Don't get me wrong, I am so glad my largest hurdle is behind me, but I wouldn't change a moment of it. #keepgoing #everythingisprogress

About 11 weeks out. Each week is an improvement. My night time sleeping is better, not baseline, but better. I am still sleeping with a heating pad on my back and chest and take Ibuprofen to help with the soreness and tightness. I'm tossing and turning much less. I also hear my loud heartbeat while I'm bed {I know some of you have said you have the same experience}. It doesn't give me anxiety, but it is an annoyance. I used to have an audible murmur prior to this last surgery that I could hear at night, so I am used to tuning the sound out. Cardiac rehab and PT continues to go well. I have good days and bad days. Days where my endurance seems to be improving and then days when I am dizzy and can hardly tolerate finishing my walk. Needless to say, I push through. The heat and humidity greatly impact me. My cardiac rehab team says to avoid activity outdoors with temps over 80 and high humidity. My tolerance for the summer weather has absolutely taken a hit. I am still going for walks outdoors- evening walks are my favorite. Anyone else finding the need to nap after rehab or activity? After rehab I find myself exhausted. Immediately after rehab I feel energized, but about 15 minutes after I come down from my high, I crash. I recognize it will probably just take time. Also, I found out what happens when I forget to take my Metoprolol. :) Last Saturday I missed my morning dose, my heart rate creeped up to the 120s while I was resting on the couch. I felt like I was crawling out of my skin. As soon as I figured out what I did, I quickly took my missed dose and within about an hour I was feeling better and my heart rate was back in the 90s. I guess it's not time for the beta blocker to be titrated down or discontinued yet. :) Although I would love to say I am back to myself, I'm closer, I'm just not there yet. My short term memory is still lacking and I am still dizzy at times, mostly with walking. It gives me comfort to know I am not alone and I want to thank each of you for your vulnerability in sharing your experience. It's not a race, its a journey and I am learning each and everyday. Peace be with all of you! :)

8. Weeks. Down. Whoa. Where did the time go? I feel like I have made giant leaps and bounds. Overall, I am doing well, minus some, we will call them, "annoyances." I feel like my cloudiness and memory are improving week by week. I still have some lightheadedness when I walk, but not all the time and it is milder than before. The motion of the car isn't exacerbating my dizziness, which is great considering I AM DRIVING AGAIN. One of my biggest accomplishments this week! I am still doing cardiac rehab 3 days a week and I am LOVING it! I love the wonderful connections I have made and it feels so good to have the extra encouragement. I started physical therapy last week and I am going 3 days a week. I am hopeful I will be making progress soon. I still have upper back and chest pain. The muscles in my back have had to compensate for my chest pain and other events and this has created some issues. Also, we are thinking I had some sympathetic nerve involvement/damage/irritation due to some of my lingering symptoms- fever, night-sweats, tachycardia, nerve pain. The fevers and night-sweats have drastically improved. I am hopeful we will get my range of motion, insomnia, posture, and pain under control soon. Patience and taking each day as it comes, each moment really, has been my greatest challenge and my greatest gift in all of this. I will get there. It will come. I saw my cardiologist yesterday. He is very pleased with my progress- which is wonderful. I was hoping we could start weaning down my beta blocker since it has created difficult side effects for me; however, my cardiologist said he wants to keep them on for 6 months. My resting HR is still high and I don't want to go into another prolonged arrhythmia. I get it. I would rather not reset or irritate my heart after all the progress I have made, but I was still bummed. :( For all of you early in the recovery phase or preparing for surgery, please remember to be patient with yourself. We are all so unique and our body heals in it's own way. Don't compare yourself to others. Although we can find similarities in each other and share our experiences {and this is wonderful}, this is YOUR journey and we all have different circumstances. It's easy to get discouraged when you are reading about someone in week 6 already stating they returned to "baseline" and feel "great." I had to remind myself over and over again... your surgery and surgical incision were more challenging, this was your third open heart operation, your congenital heart defects make your circumstances different. I had to tell myself I wasn't doing anything wrong. I am healing exactly the way I am meant to. This self talk has been imperative in my recovery process, as getting disheartened can happen very easily. I learned it's okay to let yourself feel bad some days. I needed it. I still need those days from time to time. I had moments where if one more person was going to tell me how great I looked, I was going to flip out! I know the intention is loving, but in those moments, hearing that when I feel so low, is incredibly irritating. :) Well, here's to progress, no matter what speed or where the journey takes us... We will get there. xoxo

So here I go in my recovery... About 5 weeks out. I am entering my second week in cardiac rehab, which has turned out to be truly wonderful. I'm not always feeling up to it, but once I get there, I am happy to be there. Although I am the youngest patient, the exercise physiologist develops a plan specific to the patient's level. I am not going to have the expectations as a 75 year old who underwent a CABG. Clearly, the expectations for us would be different- even though many of them are doing better than me. :) They ask me my goals and we work together to achieve them. The nurses who monitor my heart during rehab are wonderful, very motivating and offer a great sense of peace of mind as my rhythm is monitored the entire time. I also enjoy interacting with the other patients. They are fascinated by my age and usually want to hear my story. :) I love their support and I am happy to be there for them as well. It makes me feel valued and needed. It's good to feel that way again. :) I am sure the 12 weeks will go by fast. Other than rehab going well, I would say {maybe} overall I am having {I hope} more good days than bad days. The sternal pain and nerve pain in my chest offer many challenges at times, but I would almost say my back pain seems to be worse. The nights and early mornings are where it is the most difficult. I have back spasms when I lay down at night and they keep me up for most of the evening. I am doing Ibuprofen, a muscle relaxer, heat, and a lidocaine patch- nothing seems to touch it. The mornings I have a tough time getting moving- I am stiff and achy. Once I get going and start moving the day usually gets better. I'm going to talk with my cardiologist and see if I can work with a PT if the back pain doesn't improve soon. I am adjusting to the Metoprolol as best I can. I am on 50mg XL BID. I wish the dosage wasn't so high, but my HR is still resting in the 90s. The daily dose is still difficult to adapt to, but I am doing my best. I describe the feeling as if I am always walking through a haze or a fog. I feel as though when people talk, it sounds like it is in slow motion and I have to take a minute to understand them. I feel like I can't problem solve very quickly and often lose my train of thought very often. I feel lethargic all the time and usually have to force myself to do most things. I am hopeful once the Metoprolol is discontinued {fingers crossed}, this will improve. I know after talking with several of you that these are common symptoms many of you have been dealing with as well. I often ask myself, when am I going to feel like me again? I know everyone's recovery is their own, but I am hoping by week 7 or 8 the good days truly outnumber the bad and I will find a bit of normality. :) Take care, Friends! I hope all of you are doing well! Best, Morgan

Hello Wonderful Heart Friends! I am having the sensation as if my sternum is disconnected from my body. I feel it as if it is a foreign object, a piece of plastic stuck in my chest and it is pushing through my skin. It feels raw, similar to a rubbing sensation under my skin. Would anyone say they have experienced this sensation? If so, did anything help with the discomfort? I am doing Ibuprofen, which doesnt seem to help. I am done with narcotics, they don't help with the pain they just make me feel tired and groggy. I have been doing warm compresses and it seems to help a bit, but I am having a hard time getting comfortable. My chest feels "raw" over my sternum and the skin covering my sternum is so sensitive, I can hardly handle any clothes touching it. Even my necklace brushing against my chest feels uncomfortable. What has been your experience? I am anxious to hear! Take care, my brave friends! Best, Morgan

Hello Friends! I hope to find all of you doing well. My recovery has been overall steady {minus a few bumps}. When I think about the progress I have made since my surgery, I feel I have made huge leaps. The day to day progresses are small, but progress nonetheless. My fevers are better. Mostly low grade; although I did go over 101 last night. My resting HR is in the 90's which is taking me a bit to get used to. The beta blocker was switched to twice a day to help assist with this, I am now getting acclimated to taking the beta blocker during the day as well, which leaves me very tired. My pain has been difficult, as it changes from day to day. Since I had a transverse {bra-line/horizontal} incision, the tissue under my chest was disrupted significantly. Initially, I was numb, now, feeling is beginning to return and it has been rather painful. We are trialing a new medication for nerve pain. Hopefully, within a week I should be feeling a difference. I knew ahead of time this was a more involved surgical incision, for aesthetics and to mimic my previous open heart surgical scars, I am glad I went through it, unfortunately, it makes for a more challenging recovery. I have been getting outside and I have been taking short walks. The sunshine and fresh air are wonderful. It's amazing how quickly they can lift your spirits. Next week I am scheduled to start cardiac rehab. I am very excited about this and I hope it helps with my endurance. Thank you again for all your kindness and support. Paul and I are grateful. This whole experience is difficult to put into words. I often find myself overwhelmed by it all. I hope all of you are well. We appreciate your thoughtfulness, as we would not have succeeded without it. Take care, friends! xoxo :)

Hi Friends, sorry for the delayed update. I am elated to be home; however, its been a difficult recovery the past couple nights. Although I am making progress and my fatigue from the beta blocker has somewhat improved after switching to a nightly XL dose, I have been having fevers which has been keeping me feeling lethargic and sore. We pulled my last two drains last night {I'm officially WiFi} to minimize any risk for infection. My incision, chest tubes and drain sites all look great and are healing well. We are not concerned the fevers are infectious at this point, but rather a general inflammatory response. If I spike over 102 and don't respond to antipyretics, we will then make the decision to go in, so far this has not been an issue. I am lucky to have a very thoughtful cardiac team and they have been closely involved throughout my transition home. My pain is what one would expect. It usually takes me awhile to find a comfortable sleeping position and the mornings are the most challenging. After going several hours without pain medication and feeling stiff from not moving all night, it usually takes me an hour to get moving in the morning. I am having some back pain from time to time. The sternal pain can be sharp and I can feel my bone grind and pop when I shift positions. I have been unable to lay flat yet, the pressure changes in my chest make it too difficult. Overall, I would say my pain is well controlled. To be pain free is an absurd expectation. Pain is also an important warning sign from the body, and tells me if something is wrong or if I am pushing myself too hard. I mostly alternate Ibuprofen and Tylenol as scheduled doses and take oxycodone intermittently for breakthrough pain. I am also happy to report no arrhythmia since coming home. :) Well that's all for now, I fatigue quite easily when I'm up for too long. I will continue to take each day as it comes, even the small steps forward feel like great progress. I hope to find all of you doing well. Thank you all for your love and support. Paul and I are blessed. Take care. xoxo

Hello Everyone, Last night Morgan was transferred from the ICU. She was moved to the 7th floor to a medical/surgical unit. The staff on this unit are also wonderful! We have been so impressed with the care. During the morning rounds today, it was suggested that Morgan could go home today. This is great news and we are excited to take this next step in her recovery. Morgan has been arrhythmia free since Monday morning, when she had an episode that lasted for only 30 seconds. Last night, she was switched to an extended release Metoprolol and she seems to be tolerating that a lot better. Morgan is significantly increasing her activity level and PO intake. She is still fatigued post ambulation, but I have personally seen great progress. Morgan will be going home with her a couple JP drains, but we feel completely confident managing those at home. We even told them to not order home care to manage the drains. This is definitely an added bonus of being nurses. Our focus once home will be to continue to increase activity and improve her PO intake. She doesn't have the greatest appetite yet, but she is slowly but surely improving. Upon writing this update, I received a call from Dr. Earing's office and they said her follow-up ECHO this morning looks good and they are prepping her for discharge. We are so excited!!!! Thank you all for helping us through this journey. I don't know where we would have been without all of your support. We will still provide some updates from time to time and I think the next update may even be from Morgan :).

Hello Everyone, Morgan was just moved up one floor. However, she is remaining in an ICU due to her intermittent arrhythmia. Last night she went into an uncontrolled atrial fibrillation/flutter again. This time it lasted for about 5 hours. They upped her dose of Metoprolol again to help with the rate and rhythm. Right before the rhythm converted, Morgan asked me to give her a neck and shoulder massage. About a minute into giving her this massage she converted back. This is when I realized I have magical hands :). Overall, Morgan continues to make progress, but there a few things we need to sort out before she can go home. During the morning rounds with her care team they decided they wanted to put Morgan on anticoagulation (Coumadin) for about 3 months. The whole team fully expects that she will have no problems with this arrhythmia in the future. While the heart is "remodeling" (repairing itself), it is an expected result for her heart tissue to be a little irritable. With good medication management, time and rest this should all improve. Morgan has remained in good spirits throughout this. She is feeling a bit fatigued from the Metoprolol, which is a common side effect. We are looking to find a good balance with the medications still. On a bright note, Morgan has been up and out of bed almost all day today. This is also probably adding to the fatigue. She walked through the whole unit yet again. She actually walked a further distance and she was less fatigued at then end of the walk than yesterday. So it is all pointing in the right direction. Our focus for the next few days is to continue to increase her activity and oral intake. I might not be her favorite person during this time, but I am going to continue to push for what is going to help her the most :). The care she is being provided here is top notch! They all have been so kind and caring through this stressful time. I have the utmost confidence in their abilities to get Morgan home safely. Morgan even had an unexpected visitor the last couple nights (and this visitor actually walked in her room again as I was typing this)...Her retired pediatric cardiologist who saw her for nearly 3 decades stopped in to visit her. He cares so much about Morgan that he can't even stay away during his retirement. Again, I cannot thank everyone enough for all their support. We are fortunate to have so many people who care about us both. Thank you! Paul

Hello everyone, I apologize for the later post today. Morgan is doing quite well! She is still in the ICU, but continues to make good strides towards her journey home. Last night, Morgan developed an atrial cardiac arrhythmia. She first was having some early atrial beats (PACs) and later developed an accelerated atrial flutter/fib. The nurses and the doctors were very responsive when she went into the rhythm. They reassured both of us that this does happen time to time after major cardiac surgery. They started her on Metoprolol last night and she converted back to a normal sinus rhythm a couple hours after the first dose. There have been no other episodes of atrial arrhythmias since last night. We spoke to the cardiologist this morning and he said they will likely keep her on Meteprolol for a few months post discharge. Today, so far Morgan has already ambulated through the whole unit once. Despite the fatigue towards the end she did quite well. The plan is to do that again later today. Overall, Morgan is doing great! Again, we greatly appreciate everyone's love, support, well wishes, prayers, etc. We are fortunate to have so many who care so deeply about both us!

At 0930 today, the Cardiovascular Surgery PAs removed the chest tubes. Morgan's response to the whole process after receiving the Versed was, "I can't believe that just happened...that was nothing." She truly has been so tough through this whole process. I am so proud with how well she is progressing. I am so elated that they are working on removing all the extra tubes today. I wasn't sure if it would happen so quickly after we met some bumps in the road late yesterday. Last night she spiked a fever and it has persisted through the morning. I was worried it would prevent her from making steps forward today, but so far it has not. Her WBC count is also up just a touch, so they decided to focus on removing nearly all the extra tubes, starting a stronger antibiotic regimen (Vanco and Cefepime), and drawing cultures. In addition to her fevers last night, Morgan was having a transient issue with low urine output. They intially gave her some Lasix, which only resulted in minimum output. Morgan then received a dose of Diuril and an additional dose of Lasix...then the flood gates opened and there was no longer an issue with her urine output. The diuretics resulted in about 2 liters of output, which was abosolutely great news! So far today they have removed the Chest tubes and the Foley. They are in the process of removing the Central Line and artline. So in the next hour, Morgan will be down to the a couple small suction drains and couple peripheral IVs. This is such amazing progress considering how many drains, IVs, tubes, etc that she had coming back from surgery. Once the Versed is completely worn off, the goal is for her to get up and ambulate in the hallway. Her closest friends will now be the therapists, who will push her to keep moving. We will make sure her pain continues to be well controlled, so it doesn't become a hindrance to her progress. Morgan has come so far and I can't wait until she gets to the point we can get her home. Both Morgan and I have been so comforted by everyone's responses. I read every comment from this blog and/or Facebook to Morgan. She loves hearing from you all. Thank you all for being there for both of us!

Hello again everyone, Morgan was weaned off the Epi, Precedex, Milrinone and basal dose Dilaudid early this morning. She is doing so well. She also worked with OT this morning and got to brush her own teeth. She then worked with PT around 1:00PM and got up into the bedside chair. She has been in the chair for the last couple hours and she still is not ready to go back to bed. Her pain has been well controlled and she is having less shoulder and neck discomfort since getting up in the chair. Our next milestone is working on getting the chest tubes out. There is a possibilty this could happend tomorrow morning. Once the chest tubes are out she may even get to go for a stroll around the unit. I will be sure to give you all an update after the morning rounds, which are tomorrow around 0900. I am so happy with how well Morgan is doing...her progress has even exceeded my expectations.Thank you all again for your support! Paul

Morgan had a fairly uneventful night. She is still quite tired from the surgery, but that is to be expected. Last night she was having some lower blood pressures so they ended up putting her on some low dose epinephrine (.02ug/kg/min). When I told her that she was on .02mcg/kg/min her response was "that's not that much." She is still thinking like the ICU nurse ☺️. Morgan's pain has been well controlled. She is mostly trying to get comfortable and stay comfortable in bed. She loves laying on her side in the fetal position, but that is obviously not going to happen right now. Also, throughout the night Morgan has been quite thirsty. We were told this would be the case and Morgan has a new found respect for mouth swabs and sips of water. Other than the uncomfortable sleeping position and thirst Morgan is doing well. I put in a request to get therapies ordered already and they will likely come see her later today. Morgan is excited about the idea of therapies even if it just means she dangles at the edge of the bed. The day shift RN, the surgery PA and Dr Tweddle have already been in to see her. They are happy with her progress. Morgan is in great spirits. She was even laughing a little bit at my jokes. I guess I become funny when she is on Precedex and Dilaudid. One last note...I wanted to let Tristan, our nephew, know that Morgan saw your origami cranes you made and she said "ohh I love them...they are perfect!" Thank you Tristan! Thank you all again! Morgan has expressed to me how much she appreciates everyone's support. Paul

The last update of the day...and the most important one! Morgan's is out of surgery and she is already extubated. I saw her for about a minute in the hallway on the way to the ICU. She looks great. The anesthesiologist and the surgeon both said she did very well. It was a long day of waiting, but it was all worth it. I hope you all have good night. Thank you again for all your support.

The ECHO looked good!!! Morgan was recently taken off the bypass machine. They are going to place the needed chest tubes and will start working on closing her up. Hopefully, I will get to see her within the next hour to hour and a half. Here's to hoping she will be able to be extubated prior to leaving the OR. I will let you all know when she makes it to the ICU. Thank you all! Paul

Hello again! We received news that they were able to successfully harvest the pulmonic valve. The Pulmonic Valve was already replaced with a tissue valve and they just completed the Aortic Valve replacement. This is promising news as it means they are still on the path for Plan A (Ross Procedure) and hopefully will not have to place a mechanical valve (which would require life long use of anticoagulation). Assuming things look good from the echo after they start warming her up, Morgan will have a successful ROSS procedure! Thank you again for all the well wishes, positive thoughts and prayers! I will provide another update as I know more. Paul

Hello everyone! This is Paul, Morgan's boyfriend. The surgery team just brought Morgan back to the OR. The team here is great...everyone has such a calming presence! Morgan was in good spirits going back to the OR. She has been so brave through all this. Thank you all for all the well wishes, positive thoughts and prayers! As I get updates, I will be sure to keep you all in the loop. Thanks again. Paul

A long day of preop activities today. A lot of information to digest. I am feeling very well informed and confident. They anticipate the surgery will take anywhere between 6-9 hours and I will have about a 7 day inpatient stay. Since I have had two previous open heart surgeries, the complexity of the surgery increases, as there will be previous scar tissue to manage. With that said, I trust my cardiac team wholeheartedly. My boyfriend, Paul, will be posting updates tomorrow. Thank you again for all the love and support! :) Best, Morgan

Surgery is on Thursday, wow did that sneak up on me. My mind is a roller-coaster of thoughts and emotions. One minute I feel centered and ready and the next minute I feel panic. The good news is, I know this is normal and for the most part I am doing well. Cooking/baking are great stress relievers for me. Now I have two pans of banana bread in the oven and I'm sure this will make for a great snack in the hospital. :) Update on the chair situation: I was lucky enough to have a power chair borrowed to me. I am always amazed by the kindness that surfaces during situations like this. Such a great reminder. Take care.

As I am getting closer to my surgical date and prepping for my recovery, does anyone have any tips for adjusting my home environment? Any equipment you found to be helpful? I read Adam's book and I am considering renting a recliner chair. Did anyone else find a recliner necessary? Thanks for your help! :)

Hello Friends! My cath went very well yesterday. The concern regarding the narrowing in my aorta did not show any pressure changes, therefore, the aorta is well compensated and we decided not to stent. I could not be happier! My experience was outstanding. I had such a thoughtful and caring team of healthcare professionals- the nurses, doctors, and techs were wonderful. Now that we know my aorta is doing well, we can proceed with my OHS as planned- all clear for surgery! Thank you for all your thoughtful prayers and kind words. I also wanted to offer, to those of you who are looking for ways to manage anxiety for your upcoming procedures and OHS, what I have been doing to help myself prepare. I have been doing guided meditations prior to bed for the past few weeks and underwent hypnosis the night prior to my cath. This was my first experience with hypnosis and I found it to be very helpful. I utilized the relaxation techniques I learned during hypnosis and found each and every intention I had set in my mind show itself to be true during my cath experience. The mind is such a powerful place. I believe, wholeheartedly, we have the ability to shift our perception of each experience- essentially creating the experience we want. If anyone is interested in learning more about my hypnosis experience, I would love to share more details. Thank you again and I wish everyone well.

Cath scheduled for tomorrow- mostly for diagnostic reasons, but possible concern for recoarctation of my aorta. Fingers crossed that all is well and no stent or dilation is needed. 😊 I will send an update as soon as I can. Take care, friends!

Sorry I have been MIA for so long! I am moving forward with the Ross and scheduled for surgery this spring! I have a great surgeon and a dedicated Adult Congenital Cardiology team. Please send lots of positive thoughts and energy my way. I hope to find each of you well and any advice or helpful hints you used to assist with your recovery would be greatly appreciated! I already have Adam's book and will plan on reading it over the next few weeks. Take care, Friends!

What a wonderful community of support this website has generated. Thanks to the connection from Adam, I was able to touch base with Dr. Stelzer! Dr. Stelzer, one of the leading cardiac surgeons in THE WORLD, took time out of his schedule (on a holiday weekend) to call me and offer his expertise on my case. He expressed that he would offer his support in whatever capacity needed, even if that means providing outside support to my current cardiology team in Milwaukee. It wasn't about getting my business, it was about helping me, even if he wasn't going to be my surgeon. He never made me feel like he was trying to sell me anything. Wow. As a nurse, it is not often I interact with a surgeon who is so willing to donate their energy to a patient who they are not directly responsible caring for. What a powerful experience this has been for me. Thank you again, Adam, for your help and for reaching out to Dr. Stelzer and thank you, Jeff, for your recommendation and support as well! I am feeling empowered by all of you! With Sincerity, Morgan

Lots of mixed emotions as I try to navigate through the specialty of adult congenital cardiology... Every cardiologist has an opinion; I only wish they could be cohesive. I am trying to decide on the best procedure and type of valve for my upcoming aortic valve replacement. I am leaning towards the Ross, but I need to research all options in depth before I make a commitment. Insurance is always a concern, as I am fearful of where my network is willing to reach. I hear outstanding remarks about Dr. Stelzer for the Ross. There is a wonderful surgeon in Milwaukee, Dr. Tweddell, who is also incredibly competent in the Ross, as well as other congenital procedures. So many decisions... I'm glad I don't have to decide immediately. I am hopeful with this support group and with the people I have already been able to connect with, I will be able to make the best decision for when the time comes. With Sincerity, Morgan