Unforgettable Cranberry Sauce

I wish that I had a great recipe to share for Thanksgiving...but I don't. And I know,  I need to post the backlog of Barefoot recipes I made months ago. 

This time last year I was in the hospital. I had chest pain late in the night. Christian and I ended up at Lowell General, then they transferred me to Tufts and then I was in the emergency room until 3am until going to the ICU. It was a fun night.

It was probably my shortest stint in the hospital (roughly 4 nights?) and since I was there 4 months prior I had the menu nearly memorized. I was so grossed out by everything and refused to eat another iceberg salad with two cherry tomatoes and one cucumber slice. I was determined to get creative.

I scoured the menu and noticed they had a side of cranberry sauce. Even though I knew it was likely the canned jelly cranberry sauce I was thrilled about this discovery. It sounded weirdly refreshing and I was so excited about it.

It took forever. Finally the kitchen staff came through with my tray. YES! Dinner and my cranberry sauce has arrived!!! I was starving.

I looked down to see this tiny packet of cranberry jelly. Yes, I still have the picture. I sat alone in my hospital bed and reacted like this. It was an emotion time and this just tipped me right over. I couldn't stop laughing I was so upset. Then I obsessed about it and got really angry. I expected at least a slice of canned cranberry jelly, not a little packet. WTF. It took me way too long to get over this.

Thankfully this year I'm home and I have a whole bunch of fresh cranberries to cook! I might actually watch The Money Pit too : )

Halloween. Post transplant style.

Oh. I have a blog?

It's been almost four months with my new heart and all that comes with it. Overall, I'm feeling great, but in all honesty the drugs are starting to take a toll. In the beginning I was pretty tolerant of all the side effects and just told myself that most issues will go away over time. Well, I'm getting a little impatient. Instead of being a grump about it I've decided to think up potential Halloween costumes and try to embrace it all.

Cookie Monster or Elvis

The high doses of steroids basically turn you into a hairy beast over time. I'm noticing with the doses slowly tapering it isn't as bad and the old man nose hair is lessening...but I'm still rocking my sideburns. I can wax my stache but I don't want to touch my burns and have a lifetime of dealing with them. I've heard the hair will eventually fall out after I'm off the meds so I'll wait it out. In the meantime, it could make for a good Elvis costume. Although I'm still feeling the sweets these days so a hairy sweet toothed monster might be a better pick.

Donald Trump or an actual short fuse

I've noticed that I'm easily agitated at the littlest things lately. Sometimes I just blurt out whatever is on my mind without really thinking it through. I went ham on my poor Mom a few times and one morning I couldn't stop picking a fight with Christian for no reason. Roid rage?
















Jack O'Lantern or Austin Powers

I need to take an oral rinse four times a day. Every. Day. Apparently people hate the taste but I'm fine with it. I'm not fine with it staining my teeth. I went to the dentist the other day and had them confirm my suspicion that the rinse was discoloring my teeth. The hygienist said that when she first saw me she thought they were cavities, but realized they were "just all stains." It made me feel much better.

 I'm sure I could throw on some white strips and call it a day but if I still have a few more months of swishing away I don't really see the point of putting chemicals on my teeth. Yet.

Austin Powers wins because he also has sideburns.

Edward Scissorhands or a Voodoo Doll

My neck scars are pretty well healed and it just looks like a big hickey now. My chest scars are still prominent. I've actually looked in the mirror a few times and thought Oh, I'm wearing a Y-necklace. Then I realize I don't even own a Y-necklace. I have a scar.

I think I've had my fair share of needles stuck in me so I'll probably go with Edward on this. I've always wanted to be him for Halloween.

A Pufferfish or Kim Jon-un

Okay. It's really not that bad..but I have packed on some pounds and my cheeks are full. I'm hopefully off of steroids early 2016 and it will be a nice way to ring in the new year. 

It's way more fun to be a pufferfish. 

 

(Image 1, 2, 3, 4, 5, 6, 7, 8, 9, 10)

Livin' la vida loca

It's been crazy! A good crazy. Here is an update...

For the record - Greg (my brother in-law) and Emily (one of my BF's) received their Snickers bar as a prize for guessing the July 1st transplant date.

Cooking - I've been working through my Make Ahead cookbook (steering clear of the dessert section!) and will post my recipes soon.

A special email - Ina Garten emailed me. Yup. My initial reaction was total panic. I thought I was going to get in trouble for posting recipes on the blog but it was just an incredibly nice message. Ina's message said that she learned that I was blogging about Make Ahead (my friend contacted her - how nice?!) and how I've been through a challenging time. She wished me luck with my blog. The email came from a simple email address that I couldn't find anywhere on her site and there wasn't any fancy signature line - just xxx Ina. I think it's legit. Even if it was her team that wrote it I'm going to believe it was her. Like the time my parents went to a Boston Celtics game when I was a child and they brought my pendant for the players to sign. I was ecstatic when they returned with autographs of my favorite players. I almost died of happiness. Years later I learned it was really my Dad's John Hancock...but I wouldn't have changed a thing.

Lady heart friends- I've been able to connect with a few ladies in their 30's who have had a very different and much harder journey than I, but are still waiting on a heart. One is seen at Tufts and the other at Brigham & Women's. I mentioned a while back that it's tough to find young females going through this and it has been really nice to finally connect with someone who understands what you are going through. We may try to establish a support group so other young patients can feel connected.

Recovery - So a cracked sternum takes forever to heal! I'm not really in pain but still can't sleep well and on busy days my back and chest get achy. I get headaches and sometimes migraines at night and my shaky hands haven't really calmed down all that much. It's all minor and I'm trying to patiently wait until at least the 6 month mark when some meds are taken off my list. Hopefully it gets better.

I was at the hospital yesterday for my biopsy. My first few biopsy results were a 1A and my last two resulted in zero rejection. Yay!

Nursing the nurses - The staff who took care of me on Pratt 8 are amazing. Amazing. The level of care they took and the knowledge they have is remarkable. They all had such positive attitudes that allowed me to stay relatively sane while my mobility and quality of life was impaired. I'm sure they would have loved a tray of cookies or flowers but I wanted to say thank you in a way that showed how much I really did appreciate them. Since I basically lived with them knew their day to day. They move. A lot. Whether it's bending to get a blood pressure reading, pushing an entire bed or lifting a patient they've gotta be in pain at the end of a twelve hour shift.

So I thought I'd make them a hot/cold pack!

I'm terrible at arts and crafts so I asked my talented and very patient aunt to help create the little bundles. I tried to select patterns for nurses that I knew better to personalize them as much as I could. We worked pretty hard on these for a few weeks and I'm so happy with them. I was also excited to use my wheelchair for something other than me - to tote these heavy corn bags! I had to buy two 50 pound bags of feed corn.

I got a call yesterday about my biopsy results and the nurse told me she had already used it. She said it smelled great (we put lavender in the mix) and she fell asleep with it on. Mission accomplished!!!

The donor

A few people have asked if I know who the donor of my heart is. I know very little. I was told the heart was local (so I'm guessing it was harvested in Boston) and the donor was very young. Due to privacy laws the information shared between a donor and recipient is limited.

The New England Organ Bank encourages recipients to write a thank you note to the donor family. I'd like to give the family time to grieve before sending a letter, so I'm going to wait until after the holidays and send it at the start of the new year. NEOB facilitates the written correspondence between the donor family and myself and all communication is kept completely anonymous. They will review my letter, black out any information deemed as a breach of confidentiality and forward it on to the donor family.

Here is what they suggest to include in the letter:

• About myself - My job/occupation, family, hobbies and interests
• About my transplant experience - My condition that let to transplant, how it has improved/changed my life and the role the donor family has played in making this happen
• What has happened since transplant - Activities I can now participate in since transplant, celebration of a birthday or anniversary, marriage or birth in the family, return to school, pursuit of a new venture or any any other future plans. No pressure here.

It is unknown if I'll get a response. I'm disappointed at how impersonal the exchange has to be but apparently if there is significant communication between both parties it sounds like they loosen up and will allow a face to face meeting.

I've gotten to know a few other females that are about my age that are listed for transplant and waiting for a heart. The New England Region and especially Boston is well known for it's medical care so the transplant list is very long in this area. It seems like you have to be a 1A status to even have a shot. When I was at UC Hospital in Denver they said that with my blood type and size that I would be transplanted as a status 2 in their area. It would be very unlikely for me to be transplanted at a 2 status in Boston. Some patients in Massachusetts will relocate to another part of the country to get transplanted faster or some are able to get listed in another area (patients can be on multiple lists) in order to get a heart sooner.

Every 10 minutes someone is added to the waiting list and 22 people die each day waiting for transplant. This year 122,364 are listed on the waiting list, 12,340 transplants have taken place and there have been 5,976 donors so far. It's crazy how many people are in need and the limited amount of donors available. Recently there was a great story told on Radiolab called Gray's Donation that tells a story about a mother who had donated her son's body. A few years after his death she followed up to learn how the body was used. If you have 25 minutes to listen in the car, while making dinner or getting ready for work it's an amazing story. Tissues recommended.

When my immune system is up and I'm able to be around more people and places I plan on getting more involved with NEOB. Hopefully I can encourage more people to get listed as a donor so that others will have the good fortune that I have. On the sidebar to the right I've added the Donate Life widget where you can easily register or learn more about ways to help. My donor saved my life and has allowed me to do things that I was too sick to do - like hiking.

At the beginning of my hospitalization I blogged that I would go hiking with Christian once I had a new heart and could physically do it. We went to Bar Harbor over the weekend and ventured into Acadia National Park to hike. I'd actually categorize it as more of a nature walk based on the intensity...but it is a start!

Killer croutons and more BF Make Ahead

Here is another round of recipes that I have made over the past few weeks from Make It Ahead: A Barefoot Contessa Cookbook. Enjoy!

*If the recipe details are not listed out click on the recipe title for full details.

Roast Chicken with Bread & Arugula Salad (4.5 stars)

Recipe Review: I've been a consistent failure when it comes to roasting whole chicken. This is the first time I've been close to making a successful dish. The chicken was juicy and flavorful with just enough lemon and thyme (I did season the day before as suggested) but the real star is the bread. Since the bread sits underneath the chicken it sponges up all of the chicken/thyme/lemon flavors that run through it. It also toasts up perfectly and doesn't make a huge mess of your skillet since the chicken doesn't even touch it. It's amazing.

Comments: We had spinach on hand so I used that instead of arugula and it worked out fine but I think arugula would be better. I added radish to incorporate the missing peppery flavor that the arugula would have brought. I also chopped dried cranberries instead of currants.

Since Christian is gluten free I had made a gluten free loaf of bread (Bob Red Mill Bread Mix) and used a thick slice of that under my chicken. I think gluten free bread is more dense so the results are probably a little different.

Suggestions/Tips: Yes - this is roasted at 500 degrees. I did clean my oven beforehand. I don't think the bread crouton will crisp at lower temps since the cast iron is thick. Soggy croutons are gross so I wouldn't mess with this. Make sure to also use a thick slice of bread in order to hold up under the weight of the chicken.

If your chicken is closer to 4.5 pounds I'd leave it roast for a little over 30 minutes. With a 4 pound+ chicken and a cast iron skillet this is a heavy dish to pull out of the oven. Bend at the knees.

Garlic & Herb Roasted Shrimp (4 stars)

1/4 pound (1 stick) unsalted butter
2 tablespoons olive oil
2 tablespoons minced garlic (6 cloves)
2 teaspoons minced fresh rosemary
1/4 teaspoon crushed red pepper flakes
2 large lemons
2 pounds shrimp, peeled with tails on (I took my tails off)
1 teaspoon sea salt
4 slices country bread, toasted

Preheat oven to 400 degrees.
Melt butter over low heat in medium saute pan. Add olive oil, garlic, rosemary, red pepper flakes, 1 teaspoon kosher salt, and 1/2 teaspoon black pepper and cook over medium heat for one minute. Off heat, zest one lemon into butter mixture.
Place shrimp snugly  in saute pan or baking dish and pour mixture over. Sprinkle with sea salt, pepper and tuck roughly five slices of lemon throughout the dish. Roast for 12-15 minutes.

Recipe Review: This is a great basic garlic and lemon shrimp recipe. It is quick to make and really versatile. 

Comments: I served this over a salad and used the garlic lemon juice as a base for the salad dressing. I've also made this over linguine and it was good.  

Suggestions/Tips: Buy the shrimp deveined unless you want to add lots of prep for yourself : (

Salted Oatmeal Chocolate Chunk Cookies (2.5/4.5 stars)

Note: Truth be told...I really just greased the pan and scooped a few cookies on this one. My friend Emily did the majority of the work. With my baking skills I probably would have botched these : )

Recipe Review: I gave this two ratings. Out of the oven and the next morning (yup, I had them for breakfast) these were a 4.5 and I could have taken down the whole plate. However, these cookies plummeted to a 2.5. I thought they dried out really fast and the flavors changed after about a day or so. 

Comments: I had Toll House chocolate chips on hand so I used those instead of fancy chocolate. The sugar was also cut a little - maybe less 1/4 cup which worked because the chocolate chips we used were semi sweet, not bittersweet.

Suggestions/Tips: If using bittersweet chocolate I'd go for the full amount of sugar. I'd strongly suggest serving these the day you bake them. Chilling the dough and then baking did give a crispier cookie. It is an extra step but I thought it was worth the effort. 

Tomatoes and Burrata with Garlic Toasts (4 stars)

Recipe Review: Yum. I don't understand why burrata isn't really well known. It's the avocado of cheese and should have a cult following. The tomatoes that came straight from our backyard made this a perfect lunch on a hot summer day. 

Comments:  I put the toast in the toaster oven instead of baking. 

Suggestions/Tips: Be generous with the salt on this one. The fresh raw garlic on the toast is STRONG. Go easy or don't make plans after you eat unless you have a toothbrush nearby.

Warm Fig & Arugula Salad (1.5 stars)


Recipe Review: Ew! I'm not even going to bother with typing out this recipe. Sorry. It's basically arugula with a honey dijon vinaigrette, blue cheese, walnuts and roasted figs.

Comments: Blue cheese isn't allowed on my diet so I used parmesan. I don't think the cheese would have made a difference for me. The issue is with the fig. There is a reason why the Fig Newton uses the fig as a jelly filling and not on top of a salad. The consistency was similar to roasting eggplant and putting hot gooey eggplant on lettuce. Yuck.

Suggestions/Tips: I've still got a boat load of figs in my fridge. I might try a fig and brie panini or a dish using it as a spread or filling. Any suggestions? 

How I'm managing life after transplant

It's been a month since my new heart and I thought I'd share how I'm managing it all so far. It's a lot of work and I've learned some good and not so good things! Hopefully my experience so far will help other transplant patients or anyone recovering from surgery.

My mistakes on the first night
For two months straight I took some sort of sleeping/anti-anxiety/pain med combo before bed. So why on earth did I think the first night home that I was so tired I'd just pass out cold turkey?!?!  It was a very long day leaving the hospital and going home. I exercised a lot (for me) which meant walking from my hospital room to the car, car to the house and I was emotionally drained. It didn't matter.

I was up all night, had to rummage around for my pain meds in the dark and ended up crouched in the bathroom (scaring the s@$! out of Christian) trying not to pass out because I got up too quick and was mega dehydrated. Lesson learned. Here is what I should have done and suggest...

1.) Take your pills even if you are not in pain at that moment. Once you lay down your body starts to ache.

2.) Set up your nightstand and bed so everything is within arms reach. Sleeping is one of my biggest issues so this is important. Include:

• Pain/sleep meds 
• Water
• Hand sanitizer

• A notebook (your mind goes nutso and you may want to write or list questions for your next appointment)

• Put your Patient Therapy Log near your bed along with your pressure cuff, thermometer, etc. and do all your vitals as soon as you wake up.

• Borrow/buy/make some sort of body pillow. I used my sisters Boppy and it has been major. You won't have a fancy hospital bed that will contort your body if your chest or back hurts so the pillows help to get you there. 

• I was a heat pad junkie for the entire month. You can make one out of rice and a long sock...but I got this entire spa hot/cold kit for my birthday and it is amazing. Take it to bed.

Drugs

Keep pills within view so you see them when you wake up and pull that days pills from the case. I take it with me around the house as a reminder.

I take different meds at 9am, 12pm, 6pm and 9pm. To keep track of when to take everything I've been using an app called Dosecast.  It stores my med list with the dosage, the time(s) to take it and it sends me reminders. It can also track how many pills remaining so you know when to refill. I love it.

I took a picture with my phone of my drug list so I always have it. Also, if you forget to bring it to your appointment you can just pull it up on your phone.

The pharmacist suggested two people fill the weekly pill box so someone can double check. I already learned that this is important - one pill bounced into another day and I caught it later. If there was someone watching when the box was filled we would have caught it then.

I also labeled the top of my containers with a sharpie so it is easier to find them.

Side effects
Everyone is going to handle the meds and recovery differently. Overall I've done well. Lack of sleep is my biggest issue where I used to sleep 10-12 hours and now I'm getting 5-7 hours. Part of it is the steroids just keeping me up but I also have back/neck/shoulder pain and headaches at night. I wake up a lot at and I'm usually up for the day between 5-6:30 am.

Trembling - Mostly hands but if I'm tired my body gets super weak and I feel a little shaky all over.

Chest/sternum pain - They cracked my ribs. Bending down/reaching/laying on my stomach and unfortunately laughing really hurts. Sneezing is the most painful. Hugging a pillow while sneezing makes a huge difference. Tufts gives a heart pillow for a reason! When I'm not within reach of a pillow I will put my hand on my chest and apply pressure. That does the trick too.

Day of transplant/A few weeks later

Chubby face and weight gain - So far I've gained a little weight but I think it's unrelated to the drugs and just healthy - eating normal meals again weight gain. I think, however, the size of my cheeks are a result of the steroids! I was warned this would happen. It should lessen once the steroid dose goes down...hopefully.



Protection - home and outside (mask, sani, sun)

I took the big plastic hospital sanitizer bottles (see nightstand pic above) and replaced them with blue glass pumps and have them all around the house - living room, kitchen, porch, bedroom so I see them and they look a little nicer : )
I keep sanitizer and masks in my bag and in the car so I have them when I'm out. I still have to sit in the back seat of the car because my sternum isn't fully healed. It is really boring sitting alone back there and I feel powerless because I can't change the channel or the AC. To keep myself busy I've started a mask selfie collage!

The meds increase the chance of skin cancer. As an already fair skinned lady with moles and freckles I'm taking no chances. Hats, screen, shade. And I just bought an umbrella and UPV 50 rash guard for the beach. Take that, sun.

Scars and bruising

First, I need to credit my surgeon for his knife skills. My scar is pretty thin. I've also been using Mederma a LOT and I do think it helps. Scars are still a little red but healing well. I also have three holes in my stomach from the chest tubes that were fairly large. They are now about the width of a pencil eraser and are slowly getting better.  My neck/catheter scars are another story.

I also have random bruises all over my body that are hanging around : (

Mental health
It is still a lot wrapping my head around all of this. I'm trying to keep up with knitting and painting and I'm cooking and reading more which relaxes me.

My porch has been my little zen space where I spend a lot of my mornings. I still sit there thinking about how lucky I am that I'm:
1.) breathing
2.) breathing without difficulty    
3.) breathing fresh air! Outside!

And of course, able to snuggle with Ritz.

Barefoot smackdown

Back in the day I would do all of the cooking while Christian did more cleaning and it felt like a good balance. One of my biggest struggles emotionally was when I was too sick to cook. I would come home from work and crash on the couch for the rest of the night while Christian would cook, clean and take care of Ritz. I felt awful.

Now that I have my new heart it is time to reclaim the kitchen, and more importantly feel like I can contribute again.

I've started my cookbook challenge and decided to take on Make It Ahead: A Barefoot Contessa Cookbook. Why? Because the recipes are fairly simple and the whole book is based on preparing a recipe ahead of time. So for most recipes this means there is first the prep and later you cook/finish the dish. This is especially nice because I can take a break and don't have to do the whole thing at once.

I'll link the recipes but if I can't find them online I'll spell them out. Again, all are from Make It Ahead: A Barefoot Contessa Cookbook and some recipes are slightly adapted.

I'm listing these in order of success. Here goes!

Zucchini Basil Soup (5 stars)

1/2 cup olive oil
1 1/2 cup chopped yellow onion
2 tablespoons minced garlic (6 cloves)
3 pounds zucchini diced (I measured 2 1/2 cups diced = 1 pound)
1/2 teaspoon ground nutmeg
1/8 teaspoon crushed red pepper flakes
1 tablespoon salt
1 teaspoon black pepper
1 cup dry white wine
4 cups chicken stock
1 cup chopped fresh basil
1/2 cup grated parmesan cheese
1/2 cup greek yogurt, plus more for serving

I'm summarizing her instructions...
Heat olive oil in large pot or Dutch oven over medium heat. Add onion and garlic and cook for 8-10 minutes until translucent. Add zucchini, nutmeg, red pepper flakes, salt and pepper and saute for 5-10 minutes until zucchini is tender.

Add wine, chicken stock, and basil and bring to a boil. Then lower heat and let simmer for 30 minutes. Pass soup through food mill fitted with coarsest blade. Return to pot and bring to simmer. Off heat and whisk in grated parmesan and yogurt.

Recipe Review: Despite the unappetizing appearance this was really good! I didn't think a zucchini soup was going to have much flavor but the basil, parm and yogurt does something magical.

Comments: Seriously, Ina, who owns a food mill? I used my blender and tried to keep some texture. I also messed up (it's a long story) and didn't add the basil until after I blended the soup, so I pureed that separately and that is why my soup is so green.

Suggestions/Tips: I thought it had a little too much salt. The dollop of yogurt and parmesan on top when serving is critical.

Blueberry Bran Muffins (4.5 stars)

Recipe Review: Can you really get that jazzed about a bran muffin? I didn't think so but these were pretty tasty! If you like sweet muffins they may not be your bag but the honey and blueberry balance out the bran so they don't taste like cardboard.

Comments: I didn't have baking soda so I tripled the amount of baking powder as a substitute. It seemed to work fine.

Suggestions/Tips: Make sure you have baking powder before you start the recipe : )

Herb Roasted Fish (4 stars but could be 4.5…)

Recipe Review: This was so quick and easy to put together and really flavorful. It was light and made you feel good about eating healthy too. Plus, who doesn't love opening up a little gift on their plate?

Comments:  I used cod.

Suggestions/Tips: Watch the time. The fish was a little thin and it slightly overcooked. Depending on how thick your fish is you may want to pull it a little under 15 minutes. The good news is that it is basically sitting in a juice pack so it can't get too dry.

Parmesan Chive Smashed Potatoes (3.5 stars)

1 pound small Yukon Gold and/or red potatoes
Salt and pepper
3 tablespoons olive oil
1/2 cup grated parmesan
2 tablespoons minced fresh chives
Sea salt

Preheat oven to 400 degrees.

Boil the potatoes until tender. Drain and place on a sheet pan. With a potato masher (I used a meat pounder) press each potato until about 1/2 inch thick. Toss potatoes with olive oil and sprinkle with salt and pepper. Roast for 25-30 minutes and turn once until skins are brown. Sprinkle with parmesan cheese and roast for another 2-3 minutes. Sprinkle potatoes with chives and sea salt. Serve hot.

Recipe Review: I had really high expectations for this one. It was good but didn't blow me away.

Comments: I need to give this another chance because I didn't buy small potatoes and had to cut my biggies in thirds. I think the skin on the small potatoes make a difference and I needed to add more salt.

Suggestions/Tips: Read directions more carefully and buy baby potatoes!

Roasted Baby Bok Choy (3-4 stars) 

12 baby bok choy cut in half
Olive oil
Salt and pepper

Preheat oven to 375 degrees.

Drizzle bok choy with olive oil and then sprinkle with salt and pepper. Roast for 20 minutes until core is tender.

Recipe Review: Pretty classic recipe but the bok choy is a nice change up.

Comments: Let the leaves get crispy. The texture is similar to kale chips. Yum!

Suggestions/Tips: I might add red pepper flakes or lemon next time.

Decadent (Gluten Free!) Chocolate Cake (0 stars)

Recipe Review: I'm not a baker. This was a complete disaster and I dumped the entire thing. My dad thought it was a brownie. Once he tried it he wondered if it was residue from us cleaning an appliance or something! I'm not kidding.

Comments: So the big issue here was that my grocery boy bought unsweetened chocolate when the recipe calls for bittersweet. Since I'm not a baker I thought (after some Googling) that I could add sugar when I melted the chocolate and it would be sweet enough. Wrong.

Then I realized I needed to beat egg whites with my mixer. Well, the mixer weighs a ton and I'm not suppose to lift things, so I grab an extension cord and beat the eggs straight from the pull out drawer. In my mode of panic trying to "fold" the egg whites into my gritty, bland chocolate I look down and see that at least Ritz is enjoyed this.

Suggestions/Tips: Buy the correct chocolate. Although foodschmooze.org featured this recipes and it only got 2 1/2 stars...

   

July 2014 to July 2015

The fact that I'm home with a new heart and feeling pretty great makes it easy to say that this is the best birthday I've ever had. It also makes me think about why I'm here and how grateful I am.

July 1st was shared with two other important dates. One is Harry's birthday. The other is the anniversary of Matante's passing. Matante (meaning my aunt in French) was my mother's godmother and was like a grandmother to me. She was a major part of my childhood. After she died in 2013 I would sometimes catch her scent - whether it be her "fancy" Christmas perfume, daily Avon powder or the smell of her purse; a mix of faux leather, change and mints. More often than not this would happen during times when I was in the hospital. It is a little strange that only I seemed to pick up on this, and of all dates my heart came on July 1st. I'll never know if the deceased can really look over the living but I can't help but wonder if it is true.

Whether I should be giving "Tante" a shout out up there or not, I do know that I have a lot of other people to thank for being here as well. Obviously, I have my donor and donor family to be grateful for. I plan on reaching out to the donor family in roughly 6 months to give them time to grieve and hope that they respond back. I also have my amazing family who have been so strong and supportive. Then there are my friends, co-workers, friends of friends, Christian's co-workers, extended family and total strangers who have been so generous and thoughtful throughout the entire year.

And then there is Christian.

I told Christian about my condition on our second date. I typically don't talk about my health with new relationships - dates, friends, coworkers, etc. but I just sorta knew he might be the one. I was relatively healthy throughout our relationship just up until last July when I got very sick and was so weak I could hardly stand. It was really the first time he had seen me sick and hospitalized.

After that episode it was advised that we cancel our planned (belated) honeymoon to South Africa. Then we decided it was best to move after being in our New Hampshire home for just a year to be closer to family in Massachusetts. Then, after months of investing our time, money and emotions into adopting a baby it was determined that my declining health would make us less desirable and we would have difficulty getting placed. Although we lost a considerable amount of money and our hearts were broken we decided not to move forward.

The following months were pretty turbulent and emotionally draining. There was a trip to the ER in November that resulted in me getting transferred to Boston at 1am. When they finally admitted me to the ICU Christian drove home at 3am. There were many sleepless nights when I was sick and we didn't know what to do. There were many vacations that we attempted to take where I ended up in bed most of the time.  There were many weddings we RSVP'd as attending and then had to decline. Then in March there was Denver.

We planned a trip to Colorado for Christian's friends wedding that was to begin in Denver and end in Dunton Hot Springs, roughly a 7 hour drive.  We weren't even there 24 hours and I ended up vomiting in a restaurant, barely able to walk because I was so weak and nauseous. We took an Uber cab one block to the hotel. I ended up at UC Denver Hospital for about a week and Christian spent his birthday sitting next to me watching March Madness in the hospital. He then drove 7 hours to the wedding and then drove back so we could fly out of Denver when I was released. A day later I was admitted to Tufts for another week in Boston.

The two months I was a live in patient Christian would visit every week and weekend to see me. He would bring me new clothes, wash my dirty clothes, deal with insurance, maintain the house, took care of the dog and was working full time. He did all of this without a single complaint or sign of anger towards me or the situation. He has never once made me feel guilty or to blame for such a difficult year. For moving, for the canceled honeymoon, the adoption, vacations gone wrong and many many sleepless nights.

Everyone keeps saying how courageous I've been throughout this whole process...but it is really Christian who is the Superman. He has been remarkably strong and supportive and there is no way I would have been able to get through this past year without him. It's crazy hard times like this that can really test a marriage and I'm eternally grateful to have him as my husband.

Home sweet home

I'm the happiest lady in the world. Being home is sooo relaxing and I feel like a child that gets excited over the simplest things. Lighting a candle, peeing in a real toilet, new bedsheets, heating up my food until it burns me, using real silverware and not plastic utensils, seeing my new dining table that was delivered in May, sitting on the porch and breathing fresh air. I could go on...

Okay, now on to the dirty details of recovery.

Side Effects:

I'm feeling better every day but I still have moments when I feel like I got ran over by a truck and probably will feel that way for a few months. I'm weak, my body aches, chest cracks, bruises, etc.

So far I'm adapting to my meds fairly well. There are many side effects and I'm feeling some of them. As mentioned before, I've had moments when I cry randomly or get really irritable but I have noticed being out of the hospital has helped calm me down. God bless Christian over the next few months!

I have tremors. It happens every day. I can still manage to function/hold on to things but this could get better or worse over time. Once my meds taper a bit it should go away...but time will tell.

Sleeping is better but I have accepted what it is. It takes hours to actually fall asleep and I wake up a lot. The pain at night is subsiding which is great but the prednisone will likely support a wacky sleep schedule. I did my vitals at 5am this morning and started my day with a sleepy puppy (pic below).

Feed Me:

After transplant I've somehow lost weight - a whopping 97 pounds. They were a little concerned and pushed calorie shakes and protein, protein, protein in the hospital but with my snobby eating habits I couldn't bring myself to order hospital meat. 

Once the prednisone sets in I'm inevitably going to gain the weight back and they keep warning me about getting the famous steroid moon face. Despite my body size I've already noticed my cheeks are a little more plump! This should get interesting.

My personal at home chef has been making me steak tips, salmon, quiche and I haven't been skipping dessert. Thanks to the steroids my sweet tooth friends (Meg, Camille, Steph, Rachel) will be happy to know that I might be joining your team! I need to watch my blood sugar levels so I'm not going hog wild but I wake up wanting chocolate chip pancakes EVERY morning...and then end up eating yogurt and nuts. 

In order to avoid infection I can't eat out for 6 months. Basically, all my food needs to be purchased at a grocery store and prepared at home. I can't eat at a restaurant, grab a coffee, ice cream cone, etc. I can't eat anything raw or unpasteurized - ever. No more sushi, oysters, runny yoke eggs, blue cheese, medium rare burgers or deli meat.

Fortunately, I love to cook and once I'm feeling better I plan on making the best out of my 6 month take-out/dine-in hiatus. I might even select a cookbook and make an attempt to actually cook each recipe. I'm also scoping out picnic locations where we can take our dinner "out" just for a change of scenery. Could be fun!

Other random stuff: 

I'll have a weekly biopsy for about a month, then bi-weekly, monthly, etc. The first year is intense and I'll need to track everything and be in close contact with the transplant team to monitor rejection, meds, side effects, etc.

I need to wear a mask when in public...for I think 6 months.

I can't drive for a few months (they will let me know when I can) and for now I have to sit in the back seat to avoid front seat air bags from blowing into my chest while my sternum heals.

TL: I went to HomeGoods! I wore a mask. I haven't showered in over two weeks so mind the hair!
TR: This is what a $700 prescription co-pay looks like.
BL: My early morning
BR: Me and the bodyguard

Post transplant and some wonderful news

ICU Recovery:
I woke up in the ICU with my wrists tied to the bed, intubated, oxygen masked and nearly every part of my body had something going into it or draining out. At that point I felt no pain. I remember seeing my parents and Christian but couldn't speak to them.

I know that it is typical for people to act out of character when heavily sedated and many years ago when I was hospitalized I apparently tried to fight the nurses and said some pretty inappropriate stuff. I didn't do that this time. At some point (despite being tied?) I do remember thrashing and attempting to pull out my trach. I was also told by one of the NP's who stopped in to see me that I was wide awake fully intubated and did NOT look happy. Since I couldn't speak I grabbed her phone from her hands, started typing and handed it back. My message to her read: Get this fucking tube out of my throat. I typically don't throw f-bombs around so this message was a little unexpected coming from me! They did pull my trach tube soon after : )

Pratt 8 Recovery:
The ICU wasn't terrible but I did have plenty of crazy awful painful moments and a few minor bumps along the way which I won't get into. Overall I did very well and was back up on Pratt 8 within a few days. It was so nice to see my regular nurses and be in a more comfortable setting. I did, however, get some unfortunate news. The few days I was off the floor I had the nurses watch over Ted. I'm not sure if he just couldn't handle the stress or more likely that they over indulged him with beta pellets...but Ted didn't make it.

I grieved briefly and had to move on to make sure I made it! The nurses may not be the best pet sitters but I know they take excellent care of me. To sum up the past few days the main focus/activities were:

- Pulling my oxygen so I was fully breathing through my nose and mouth on my own.
- Pulling my catheter/swan line.
- Pulling chest tubes. If it isn't enough to have your sternum cracked, new heart and a foot long incision down your chest they also jam three tubes into your chest that drain externally. These tubes aren't small and I had little room for them. As a result they inhibit your breathing, push up against your ribs and cause tons of pain. It took well over a week but they finally drained and were pulled.
- Apparently it is common for the right side of the implanted heart to struggle due to it being on ice so I was temporarily on IV heart meds to aid the right side.
- My first new heart echo proved that my right side had fully recovered and they stopped the IV heart meds. The echo also measured my new ejection fraction which measures the amount of blood volume that your heart is pumping out. My new heart measured at 60% (55-70% is considered normal and under 40% is considered heart failure). My ejection fraction prior to transplant was 5%. It was pretty incredible to watch the echo show a functioning, beating heart inside of me that once sat inside of another body.
- My first biopsy of the heart to see how well it functioned and the rejection rate came back at a 1A. The scale goes from zero to 1A, 1B, etc. so all is good.

I was discharged from the hospital on Monday and it was a very emotional day. The side effects of the heavy doses of prednisone are coming through (which I'll get into on a later post) so my emotions and mood have been a little erratic.

The last of my hospital belongings sat with me outside of Tufts as I waited for Christian to swing around with the car. One of the CCT's (who kindly taught me even more knitting tips) was with me and just as Christian pulled up she turns and says "Harry got a heart today. He went down to the OR at 5am this morning."

I bawled the whole ride home.