Sara's Heart Valve Journal

Sorry I haven't updated my journal in while! I've managed to keep myself very busy since surgery, which for the most part, has been a good thing.

I'm feeling really good and I went to the cardiologist a few weeks ago - and the good news is that he took me off beta blockers! So now the only thing I have to take is a daily baby aspirin, which is not big deal. Woooohoooo, after being on medication for 13 years, this was very exciting for me.

So now for the bad/ugly news, my sternal wires are poking out. Yep, you read that correctly. I first noticed this about 2 months ago when I leaned over my daughter's crib and it rubbed funny and caused a lot of pain. I noticed the first one popping out a bit and now I have quite a few. It's not a pretty sight!

So I addressed this with my cardiologist and unfortunately, this means another surgery for me. Much much much less serious than before, but still, back under the knife and he has to open the full incision to pull the wires. This is the second time this has happened to me. From what I have read, they say this is a rare occurrence, but apparently for me it's common :( Friday is my date - I will head back to have these wires removed! If you think of it, please wish me luck/say a little prayer that it's a speedy surgery and a small bump in the road.

I will update you all and let you know next week.

It has been a while since my last update! I had meant to post a note sooner, but things have been pretty hectic at our house over the past few weeks. My husband and I had made it our long-term goal to move closer to home so that our daughter could grow up around family. This all happened much faster than we expected and we will be relocating to Kansas City in less than 3 weeks! It's hard to believe. So in my past few weeks, we have been busy buying a house and trying to prepare ourselves for the next big jump. Never a dull moment around here - that's for sure!

The good news is that I'm feeling great. I am still a little sore, but nothing that isn't handled by a few Tylenol once or twice a week! The most difficult thing at this point is that I still have to remember not to push it too far. We spent the weekend packing and felt good and pushed/carried some boxes, etc and I would feel a little pain occasionally. The great thing is that it was a little and not a lot, so I'm getting better!

At this point, I'm only taking baby aspirin and a beta blocker (for 2 more months), then it will just be baby aspirin for me! It's really nice to be off the cocktail of drugs that I came home on. My scar is healing nicely as well - well, as good as a full zipper can heal :) Let's put it this way, I finally don't look like Dr. McCarthy took me down in a street fight. Feeling better each day!

Today I am getting back to work! My doctor suggested that 8 weeks would make more sense, but I feel good enough and will still take the time that I need to go on walks and rest if I need to. It feels good to be contributing to the family again - and getting back to my old self, but this time I'm actually better!

Thanks again to all of you for the support. It truly means so much!

It's hard to believe that it has been 3 weeks since surgery! I'm feeling really good. The pain in my back and neck is mostly gone, although I still just feel a little bit stiff all around. I can tell that the muscles in my chest are healing because my chest is sore, sore, sore - but it's nothing that can't be dealt with!

I'm walking a mile now on the treadmill and feel great doing it! I'm honestly feeling much better than I thought that I would be, which makes it kind of hard to follow my limitations. A few days ago I picked up my daughter (who weights 21 pounds) and that was a bad idea! I could feel a lot of pressure in my chest, so now I know why they set those rules :) I won't be breaking them again.

Right now I still need tons of sleep - I take an hour or two nap every day and am sleeping 9-10 hours at night. I guess my body needs that to heal. I definitely always feel a lot better after resting.

My scar is healing up pretty well. I only have a slight hint of a scab left at the very top part, but the rest has all come off, along with the scabs from all of the tubes. I just have some dull bruising left and basically look like I took a little beating. Things are definitely getting better, one day at a time.

I'm hoping to head back to work in a few weeks (part-time) and step it up on the treadmill. Before I knew that I needed surgery I organized a charity run in October on behalf of my baby girl, who has a rare and severe form of muscular dystrophy. I was really worried that the surgery was going to hold me back because she requires a lot of care, but I'm starting to feel like it actually might be the opposite. The surgery is what is going to allow me to be strong to take care of my daughter and finish this race in honor of the love of my life!

Hi everyone,

Just a quick note to check-in! It has been just over 1.5 weeks since my surgery and I'm doing very well. I'm sleeping in bed without my wedge - just a bunch of pillows and I'm actually moving around very well. I'm able to get myself up and down on the floor and in and out of bed without much trouble now. The back stretching has also been working well! I've been pulling my knees to my chest and that seems to help stretch out some of the pain (in addition to massages :)!

Today I've logged 30 minutes of slow walking on the treadmill and have been up and down our stairs to get the mail (4 flights)!

The back pain is still there, but it's dramatically improving. I'm definitely feeling better the more I move. I'm starting to feel some of the bruising and pain in my lungs. I've been blowing on my spirometer religiously, but I've also started working on taking big gasps of air because I can feel it working my lungs more. It definitely hurts, but I can feel it getting better the more that I work my lungs.

I have my two week appointment on Thursday, so I will post another update after I meet with the docs!

Feeling very blessed,
-Sara (& Bessie B.)

Well - at least one week from surgery #1. I came home on Monday night and am really doing pretty well. The biggest challenge that I've faced is how tired I am. I have to take a nap every few hours. I feel very little pain from my incision, although you wouldn't think that by looking at me! I have a lot of bruising all over and basically look like I got beat up!

I'm still only on tylenol 3, and honestly, I feel like I should have a lot more pain at the incision site, but I really don't.

I've been sleeping in my own bed (with a supportive wedge) since the day that I came home. Last night, I actually slept without the wedge and just used a ton of pillows for support. Sleeping is getting easier every night. I do wake up covered in sweat every night. I think my body is just still in shock a bit. It happened several times the first night and last night only once, so again, it gets better every day.

To my surprise, the biggest thing that I've been struggling with is back and neck pain. I'm not sure if it was the surgical table or the tubes (or a combination), but I have really had a hard time with it. It feels like somebody took a baseball bat to my back. All things considered, I am feeling very blessed.

Next update I will take the time to write a little more in depth about the surgery. Just need a bit more energy! Thank you all again for thinking of me, your support has truly meant so much.

-Sara & Bessie

Not sure what day it is anymore, but I've heard that its Monday and that we will be discharged today! I'm just waiting on MRI and should be out of here just in time for rush hour. Luckily we only have a two mile drive home.

I've had all of my tubes taken out except my IV for contrast and feel shockingly better. My back was so tight I was walking very hunched over and now I can stand up straight again!

My endurance is pretty low right now, but I'm surprisingly feeling really good and have very little pain. I cut the pain killers yesterday and am only taking a high does of Tylenol (along with a cocktail of other bp meds, statins, vitamins, etc. To be honest, I'm very surprised by how well I'm feeling. The pain killers were giving me horrible dreams and really making me nauseous, both of which were keeping me up at night. One night I woke up and went on an online shopping spree. I would have thought that someone had surely stolen my wallet if the receipt wasn't full of a bunch of items on my 'I want' list. Oops! No more of those, that will end up being very costly in the long term. We're going to consider this one to be a 'surgery treat.'

I'm almost back to me pre-surgery weight too. Due to the two surgeries, I ended up becoming really puffy and swollen. Shockingly, the day after surgery I weighed as much as I did the day that we had our daughter......except without the baby and the excuse! That one will be a work in progress over the next few weeks.

I can't wait to get home tonight to my little girl! More on the hospital experience and follow-up later in the week. Time to take a nap while we wait to get out of here.

Thank you all again for the wishes and prayers. They were definitely felt and heard these past several days. I am blessed.

I almost forgot to sign my last journal entry.

Much love from Sara and Bessie

Thank you all for the well wishes, so far so good. The second surgery was incredibly scary, but we were very blessed that it wasDr. Malasarie on duty and he was comforting. From the second that he came into my room to give me 'the news'' he assured me that I would be just fine.

At that moment, it was to just put all of your faith in your team. It's Saturday night now and I've officially been out of surgery for 32 hours. The first few steps that I took yesterday were pretty wobbly, but since then it has been fast progress forward. My pain has been very well managed, but I'm still experiencing a lot of nausea. It is slowly getting better as I am slowly starting to be mobile again. Hoping for a Monday discharge. The doctors think that is very reasonable because I'm moving around more every hour.

Thank you, thank you, thank you for the guidance, love, and thoughts/prayers.

Off to try to squeeze in an hour of sleep before the nurses come for the set of rounds.

Sara left the ICU yesterday afternoon and continues to make good progress. The nurses and doctors have taken great care of her. She has been up and walking around a little today, and her new valve seems to be working wonderfully! Her strength and progress are pretty amazing to me. If things continue to progress well, she could be home Monday afternoon or early Tuesday. Next update will be from Sara, so thank you all for the prayers and messages.

They took Sara back to the OR, opened her up again and found the area where blood was leaking and repaired the stitch. She's is now back recovering in ICU (again). Hopefully now we can start the recovery again and get her out of the ICU by the end of the day or Saturday morning.

Sara had some continued bleeding coming from her chest tubes that became heavier the past couple of hours. They just took her back to the operating room at around 2am to open her back up and find the cause. Apparently this happens 5-10% of the time, and I'm praying it is something minor and easily correctable. Please continue to pray for her.

Just talked to Dr. McCarthy and the surgery went well! He replaced the valve and root as planned. He said the root was very calcified and was ready to be replaced. The aneurism on the root was also very prominent, so it sounds like it was time. She will be finished up in the next hour and will head to the ICU. I can't wait to see her in a couple of hours, although she will still likely be asleep. Thanks for all of the support and prayers. I may update you all later, but knowing Sara, I won't be surprised if she is updating you all herself in the next couple of days!

Just heard from the OR nurse. They are about 2 hrs and 15 mins into the surgery, and everything is going well. The next call should be from Dr. McCarthy in a couple of hours when he is finished, and I will post a full update once we hear from him. Keep the prayers for Sara coming.

Hi all, this is Sara's husband Matt. Dr. McCarthy started the surgery about 45 minutes ago, and it should take between 4-5 hours to replace her aortic valve and root. Thank you for all the encouraging texts and emails yesterday and this morning, and I will be back with another update in the next couple of hours. Keep the prayers coming, we appreciate them.

B.Tuff

Tomorrow it is! This will be my second round of open heart surgery. I had my first surgery when I was 12 years old. At that time, my little sister was 9 and was going through one of those phases where her gifts consisted of whatever she really wanted at that point in time. When I had my surgery, she was in a troll phase. I knew when she showed up at the hospital with a little bag that she had to have brought me a troll in a hospital gown.

When I opened the bag, it was in fact a troll, but not quite the troll that I was expecting. It was an army troll with a machine gun and combat boots. I kindly thanked my sister Blake and she replied 'this is B.Tuff, he is going to take care of you and you are going to need that attitude going into this.' That story almost always brings me to tears when I think about it. That little 9 year old brought me so much perspective. So needless to say, I was delighted when B.Tuff showed up with my family yesterday. He watched over me last night while I slept and I am taking that attitude with me tomorrow. I have posted a picture of B.Tuff in case anyone needs a smile today.

I woke up this morning and felt better than I have in several days. Surgery is scheduled for 9am tomorrow morning and is expected to take between 4 and 5 hours. Thank you all for keeping our family in your thoughts and prayers. It has given me so much strength.

Matt will be updating you after surgery. Next time you will be hearing from Sara & Bessie!

Much Love,
-Sara

Well, it's just a few days until surgery. I'm not feeling incredibly well, my throat hurts and I'm exhausted. Olivia has been sick since last Friday with a fever and all, I'm really hoping that I don't have it.

I spoke to Dr. McCarthy's nurse today and we agreed to have a check-in tomorrow to make the final call on surgery. So today I'm going to try to rest and drink lots of fluids. At this point, I really just want to move ahead with the surgery so it's over with. They originally offered me March 15th and I keep thinking about how if I had taken that date, it would be over and done!

This past week my spirits have really been lifted. Thank you all for the kind messages and for sharing your stories. It has really caused me to shift my attitude back to where it usually is, strong and determined.

I've also had a few really kind and unexpected phone calls that have been touching. These situations are tough and when nobody knows what you're going through, it can just make you feel alone. Thanks for taking time out to let me know that you care. It truly means so much.

Tomorrow will be my last update until I'm post surgery with my new valve (Bessie)! Special thanks to Linda for helping me select an appropriate name!

Hugs and love,
-Sara

Wow, I just looked at my calendar and realized at this time next week I'll be in surgery - hard to believe it! Hopefully Dr. McCarthy will be almost finished and thinking this was a breeze!

I want to thank everyone for the kind notes, wishes, prayers, etc. I am going into this feeling so blessed and supported. I'm sure I'll have another panic post before surgery, but today I am feeling very calm. So I guess the countdown begins!

As most people that have been through this before me can probably attest to, this journey is pretty much an emotional roller coaster. One minute I feel so positive about the outcome, but then an hour later I have to hold back a river of tears as I'm scared out of my mind. I'm still feel pretty well, so it's hard for me to believe that this is actually a life threatening scenario. I now have 3 expert opinions that agree that it is, so I'm definitely not going to question it any longer. In my case, surgery is actually the safest option.

I usually spend my days feeling very much at peace with the situation and just enjoy every single minute that I have with my daughter and husband. Then I go to bed and wake up routinely every morning around 2am in utter panic that this could be my last time reading stories with them, playing on the floor with them, having a family meal, etc. That is truly terrifying for me, but what is really weighing heavily on my mind is the stress that my husband is carrying around.

The other night, Matt looked at me and said 'I really just wish I could trade places with you.' And my response was, 'no way, I wouldn't want to be in your shoes.' After I said it, it really hit me, as patients it's hard not to ask ourselves why this is happening to us and we often forget that this disease actually impacts the people that love us just as much, if not more. One patient put it best when she said, you need to come to peace with this. Odds are in your favor, and if something goes wrong, you'll be sleeping anyway and will never know. That is very much the truth. That is not the case our spouses and our families.

This is certainly a difficult subject to even write about and it brings me so much sadness to even type it. We are doing everything that we can to stay strong and keep a positive attitude going into this, but I can't help but ask all of the wonderful people that are saying prayers for me to keep Matt and my family on your list as well as they go through every step of this journey right beside me. May they be blessed for the strength, love, and courage they continue to provide during this time.

I woke up this morning with severe anxiety knowing that in 2 weeks from that moment, I would be heading into pre-op. I had my coronary CT today - it was a breeze. I didn't even have to take the extra meds because my heart rate is naturally so low - score! At the end of the test my bp crashed though and I had to spend 30 minutes in recovery to bring it back up - luckily I had a great nurse that chatted with me and brought me juice and graham crackers, so I can't really complain. I was laying there just wishing that it was surgery day today and I was already moving forward.

Now I'm wearing my halter monitor, getting my labs done tomorrow, and then I'm done with all my pre-ops tests. Wow.

My mom, sister, and dad/stepmom will be coming up for the surgery. I'm so thankful to have them all here for support! It will help me to keep my mind off things and to go into surgery with a full heart, which is the most important piece! Again, thanks for all of the kind wishes and words of advice.

The most common thing that I've heard from my predecessors is that waiting is the worst part. I kept that in mind when I called yesterday to schedule my surgery. When she came back with a date of 3/21 I was taken aback a bit, but then I thought, what am I waiting for?!

So in the spirit of moving right along, I have all of my pre-op work scheduled for tomorrow morning - that includes a CT, blood labs, and an x-ray. If all goes well with the CT, I will get out of a cardiac catheterization because of my age and stats. Any recommendations or things I should know for a coronary CT? This will be a first for me.

my love, Olivia

Our family

I have finished visiting with doctors and dragging my feet and have decided to rip off the band-aid. Today I set my date, March 21st with Dr. McCarthy at Northwestern. I will have an aortic root replacement and aortic valve replacement (bovine). The fact that it's so close and I have a date is quite scary, but I'll be glad that it's not hanging over my head any longer. Not sure how I will sleep the next 2 weeks, I'm going to just be nervous as heck. Thank you for the continued thoughts and prayers. Advice from any of you in front of me would be welcomed! Now I have to get to my homework - dental clearance and all of my testing, etc.

I'm heading to Northwestern this week on Thursday and then to Cleveland on Monday. It will be 2 fun filled days of echo's, cat scans, x-rays, and doctors. I'm going to use this time to flood them with questions so I can use their input to make my decision on timing and procredure type. I wish I could just fast forward to the end of the day on Monday! I'm excited to meet these guys and get their opinions, just wish I didn't have to go through all of the tests that I just went through in January - yet again! Matt and I will have a nice long drive home from Cleveland, so hopefully we'll be able to sort out a plan during that time.

I also went to the dentist (FINALLY), and my teeth were looking good - which is an important step before heart surgery :) Thanks for the many thoughts and prayers, updates to come very soon!

Okay, I have my appointment set with Northwestern for Feb 28th! I'm still waiting ot hear back from Cleveland, but hoping that they will be calling me soon to setup an appointment as well.

I've been avoiding going to the dentist for a while now because I absolutely hate it! I guess I need to get over that now and get myself organized for surgery.

Thank you for all of your stories and suggestions. It's truly so helpful for me. I'll keep posting as I know more!

I found out 2 weeks ago that it was time for my valve replacement. I've always known that this day was coming, but it still felt like I had been punched in the face. My cardiologist made an appointment with a surgeon and I was sitting there talking to him and it's honestly hard for me to even recall our conversation, it was all a blur!

Two weeks later, I am feeling a bit better. I've reached out to Northwestern in Chicago (where I live) as well as Cleveland Clinic in addition to where I'm followed (Mayo).

I need an aortic valve and aortic root replacement. If anyone is in my area and has thoughts/advice on surgeons, I would love to hear it. So far I've reached out to Dr. Patrick McCarthy and Dr. Lars Svensson.

And so the journey begins!