THE PRE-ORDER IS HERE!

THE PRE-ORDER IS HERE!! ❤🙌🏻❤❤

I’m so excited to announce that you can pre-order Against Doctor’s Order at a discount in my publisher’s website. Link is in the comments.

Also available now on Kindle, before the hard copy comes out. Thanks for all of the support! I am thrilled (and nervous) to share my memoir with all of you!

the link for pre- order is http://widopublishing.com/against-doctors-orders-by-ali-weinberg-barton/

 

Sneak peak of Against Doctor’s Orders: the surrogacy!

This week has been a whirlwind of final edits and book cover design. It has been a good distraction for me after a rough month of fighting this 2R rejection. I had an extreme withdrawal reaction to to the steroid pulse treatment, and once I got home from the hospitalization, I was barely able to get out of bed during the holidays. The treatment also retriggered some infections in my stomach, so I am taking a strong round of anti-fungals and antibiotics to fight the bacteria and fungus in there. Hearing that the book was almost ready to go perked me up significantly!

I’m finally able to share the full cover. The book will be coming out earlier than I had anticipated, and will be available for pre-order soon!

 

Today, I want to share a section of the book with you. I have had a lot of questions about the process of surrogacy, and I discuss it towards the end of Against Doctor’s Orders.

Without further ado:

Andrew and I decided last year that we would love to have another child, but my doctors were not very enthusiastic about pregnancy for me again. The medications that I take are known to cause birth defects in babies, and the chances are good that I would go into a significant rejection if we made any said changes with the medications. On a more personal note, I know the tragic story of the woman who died and gave me he heart. I feel like it would be disrespectful to her and to her family if I were willing to risk harming the heart that she gave me. I would carry a tremendous amount of guilt knowing that I did not do my best to take care of her precious gift. We began to discuss the option of using a surrogate, and I began my research in the summer of 2015. A friend who was a surrogate recommended posting my story in a group she was in for intended parents and surrogates. Jess reached out to me days after posting, and we immediately hit it off. We made plans to talk on the telephone first, where was chatted for an hour, and found that we had a lot in common. We immediately made plans to meet in person. We decided to meet at the zoo one afternoon with her three children and Ethan, and within ten minutes of being with her, I knew that I wanted her as my surrogate. She tells me she felt the same connection, and thus began our journey. Since then, months later we had an intense two day long screening at my fertility clinic, where Jess underwent several medical tests, psychiatric screenings, and we had group social work sessions with Jess, her husband Jamie, Andrew, and myself. She was approved, and we could not be happier. I have a lot of mixed feelings about not being able to carry my baby myself. I finished my IVF cycle a few weeks ago, and the early morning ultrasound appointments at the same place I conceived has been emotionally and physically exhausting. We ended up with four chromosomally perfect embryos, which are frozen. Knowing that these embryos won’t be transferred back into me makes me feel like weeping at times. It triggers a greater resentment for everything I have been through, and how this heart has ripped away my ability to do one of the most natural things a woman can do. I have to mourn this loss. I missed having the pregnancy where I could be out in public, enjoying the attention pregnant women get, relaxing on my couch, getting foot rubs and taking baths. I spent my pregnancy in a hospital gown, stressing about when my heart was going to give out and if my baby would live.

It makes me sad that I had to miss out on the experience of a normal pregnancy, and I can never get that back. I can’t let myself get too deep into these emotions, as I know it is not beneficial to me. All I can do is thank my lucky stars that I met Jess when I did and how I did. It was meant to be. Jessica’s family has become part of our family, and the gift she is willing to give us is magnificent. It truly takes a selfless and remarkable woman to offer her body to carry a baby. I have been lucky enough to embark on that journey with Jess. We are very excited to give Ethan a sibling, and I know he is going to be an amazing older brother.

 

Love you Jess!! 

 

 

 

Answers, finally!

It’s 11:00 PM, and I feel like I am ready to start my day. Why am I so wound up and hyper? Prednisone makes me crazy! was instructed to take 60 mg of prednisone for the next several days. (For reference, I seem to have a reaction to even the smallest dose for me of 2.5 )
They have finally figured out what is going on with me. Since I last updated, I have fallen apart a little bit emotionally and physically – I knew something was wrong with me for all of these weeks. The initial antibody mediated rejection was a false alarm, and I was left to investigate if there was another autoimmune process occurring in my body. I called in the clinic last week because I had gained just under 10 pounds of fluid in a few days. This is very triggering for my ptsd – my horrible memories in early pregnancy before I was diagnosed. It was hard to bend over and tie my shoelaces, put rings on, wear my clothes, to run or do anything overly intense, and I would’ve questioned every food I ate at to see if it was contributing to the gain. These last few weeks I have felt incredibly anxious and sad as I experience these feelings that I thought I would never have again post transplant.

***I do it all for this one and the little one on the way (and Andrew of course!😉 ❤️) top photo credit by Tracy Rodriguez Photography , my amazing BF who has come by to watch Ethan a lot while I have these appointments. Love you Tracy!!***

The doctors did an emergency echocardiogram, and it looked great! We then thought this fluid overload must be something related to the endocrine problems that I have been having, but my Cushing’s test came back clear, so we were back at square one. Luckily, my treatment team spotted one of my tests called the pro BNP level, and it was just about as high as when I was in heart failure (in the 1200s- anything about 400 is usually heart failure). Something just did not feel right. Luckily my nurse insisted on getting me in for a biopsy, as the rapid weight gain just did not make sense. I found out today that I have 2R rejection. This means that my body is actively fighting against my heart, and they found two spots of damage on my heart yesterday. When I hear that, it makes me want to fall on the ground and cry. But, you know what? I can’t. Ethan is watching me as I am on the phone with my nurse, and he is so intuitive and understands so much. I smile, pick him up, and give him a big hug and a kiss. I know that my doctors can fix this. If you see me in the next few days and I am acting crazy, I blame it on the steroids ;-). There also increasing some of my other medications, and I will now be on prednisone long term until somebody makes a better, less disgusting medication. The bottom line is, we have another baby coming in a few months, and I have her and little man to take care of and chase around- so they will clear this rejection quickly and I will be back on my feet! I am lucky that all of my questions over the last few months have been answered.

To my transplant sisters and brothers, I will say it now and I will say it again – trust your gut instinct! I feel like I am so aware of how my body feels and looks. That is sometimes an annoying quality to have, but in this case the amount of swelling and puffiness I felt just truly made me believe something was wrong. I was right! Call the team if something ever feels off!

The Placebo Effect

Long time, no write! SORRY!! It has been a whirlwind of a summer with moving and chasing after Ethan- this kid gets booked up easily! I have a lot of updates, and I will separate them into a few upcoming posts.View More: http://tracyrodriguezphotography.pass.us/2016-family-mini-weinberg-barton

View More: http://tracyrodriguezphotography.pass.us/2016-family-mini-barton

We did our family photo shoot this fall with one of my best friends Tracy (check her out http://www.tracyrodriguezphotography.com/  – she is incredible), and it really made me realize how far we have come in the last 3 years. Ethan was discharged from early intervention last week, and we are hoping to get more physical therapy for him when he starts pre-school next fall.  He started off so tiny and fragile, so it is remarkable to see how “normal” he turned out.  We still have a little work to do on motor skills, but all in all the boy keeps me on my toes! He finally settled in to our new house, after a long period of asking to “go back to the old house!”.  I had to avoid driving anywhere in the vicinity of old neighborhood, since he would start crying to go home.  Ethan is still rear facing in his car seat, yet he has an amazing way of knowing exactly where we are! With a lot of binky time, his stuffed animals, and plenty of cuddles, he now says “I like the old house better than the new house.” Dedham has been great to us so far, and we have gotten involved with Dedham Parent Time for some fun activities and play groups.

On to the title of this post, I had a biopsy last week that gave us a little bit of a scare, and gave me a lot of perspective.  I have come off of the dreaded prednisone (UGHH) this summer, and so I have had frequent biopsies at Brigham to ensure that I did not develop rejection. I have been having a few frustrating symptoms (namely GI and migraines) that I have been working on fixing in the last few months, but overall the ticker has held up very well.  I got a call the day after my biopsy saying that something showed up in my blood indicating potential antibody mediated rejection, and that we would need to wait for further blood staining on Monday to see if it was accurate. The weekend was long, and so was Monday- I didn’t get a call until Monday, right when we were getting ready to go Trick-or-Treating.

elmo

My biggest fear would be that the test was positive.  This could mean hospitalization, and very invasive treatments like plasmapheresis, high dose steroids, and even chemotherapy. When my nurse called to tell me the staining did indicate AMR, she asked me to go in the following day to get a few more labs so we could come up with a treatment plan if necessary. Needless to say, I did not feel like trick-or-treating. I talked myself into it- after all, I never want my health issues to get in the way of being the best mom I can, and I wanted to join my boys. I’m glad I did.  Nothing makes me smile like seeing a bunch of adorable kids in costumes. My little elmo was quite the hoot!

This week was one of the hardest ones for me. I was obsessively reading PubMed studies and transplant forums, and I barely slept. I was panicking about who could take Ethan if I needed to be hospitalized, and I worried that this type of rejection is known to damage the tissue of the heart, creating shorter longevity of a donated organ. I was irritable, exhausted, and sad. It did not help that Ethan was coming off of a monster sugar high and was pressing my every last button, but we got through. On Thursday, I was having some chest pain that I thought may be from moving some heavy boxes, but I was getting scared it was rejection related.  I was thinking of going to the ER that evening, when I got the call that it was a false alarm. There were indeed antibodies in my blood, but they were not against my donor heart.  They were likely related to one of my autoimmune diseases. RELIEF!! Here is the power of placebo- I literally developed chest pain and fatigue when I was told I was sick. I spent a lot of time on the couch feeling sorry for myself! I feel so unbelievably lucky that this was a false alarm, only now I am investigating with my doctor which autoimmune issue is flaring up for me.  I have a few guesses, and I did a lot of lab work at my physical on Friday, so I am hoping to have some answers soon.  One thing that did already pop up was how high my cortisol levels are, which makes a lot of sense based on how I feel most of the time. We are looking at evaluating for Cushing’s Syndrome. Hopefully, we can come up with a good plan before anything gets too out of hand.

Lesson learned- no googling and no reading studies before I have the final diagnosis on everything. (Not going to lie, I have been researching cortisol abnormalities A LOT) I guess I never learn- the obsessive personality never goes away. I am a dork and I love reading medical studies!! Feel free to comment if this has been an issue for you, and how you treated it.

More blogs to come soon. My Aunt Corinne was just here from Israel for a long visit, since it was my amazing Zayde’s 95th birthday party. What an honor to celebrate such a healthy, wonderful, full of life man. He still gives a great bear hug, and I love that he gets to know his great grandchildren. Aunt Corinne encouraged me to keep up the writing, so that we can stay in touch more, and it motivated me to get back to the blog. Love you Aunt Corinne!

 

 

The annual biopsy and other fun stressors :)

image

I find it ironic that I wrote my last post saying I thrive when life is full of mayhem. I pretty much shot myself in the foot there, because my stress got pushed to the max over the last few weeks!
My two day long annual biopsy was suddenly pushed up earlier because of a potential nurse strike at Brigham and Women’s Hospital (which they have since won! Hooray for no strike!) I hate the idea of leaving Ethan for two full days, and had to scramble together to find childcare for him. Luckily, my parents are close by and they were able to take him for one of the days, and I was able to find a sitter for the other day. I was highly anxious going into this biopsy, since I never know when I am going to have rejection. I always say – heartburn is never just heartburn when you’ve had a heart transplant. Before I got sick, anytime I felt any bodily discomfort, it was no big deal. Since my transplant, I am always panicking that any symptom that I have could potentially indicate rejection. Rejection is exactly what every transplant patient dreads, when your body is smart enough to identify the foreign organ as something that does not belong there, and the body starts fighting against it. If that is not caught early, it can be truly deadly. If it is caught it soon enough, it is treatable with high-dose steroids, and in some cases, chemotherapy. Fortunately, mine has never been severe enough to hospitalize me, though I did have some pretty severe rejection right after my transplant and was treated with a three day long intense infusion.
Being married to someone who has medical anxiety takes this to an entirely new level. I generally want to try to keep it to myself if I am feeling unwell, since I don’t want to send Andrew into panic mode. I can’t even imagine the worry involved being married to me! There are times where I have had indigestion, or have felt as if my ankles were swollen, and the anxiety that I feel inside of myself is indescribable. I spend a lot of my time worrying that I will not have a long life, or that something may suddenly happen to my new heart. I have to remind myself to take deep breaths, and stay present without panicking about how long this new heart will last me. I also like to remind myself that new advances in medicine are happening every day, so perhaps I won’t need another heart transplant in the future. Honestly? The transplant itself was not that bad! The hard part is the emotional aftermath, the side effects of all of the medications, and coming to grips with everything that has happened to me over the last few years without being angry at the world. I know how strong I am, and I know that I could do it again if I needed to.
It is always a huge relief when I have a clear biopsy, since most of the time I do seem to have a very mild rejection happening in my body. This time around, I got word that there is zero rejection, and the heart looks great!  I am slowly starting to wean off of my prednisone. Hallelujah! The day after I got this wonderful news, I was offered a contract with a small publishing company to publish my book! Words can’t describe how excited and honored I am! More to come on this.
Finally, we are still trying to sell our house, which makes me feel pretty much an incessant amount of anxiety at all times of the day.  It is not easy trying to keep the house impeccable and properly staged for any potential buyer! I am excited to move and begin this next stage of our life, but also nervous about the changes. Many of my memories of our house are tied into me lying on the couch with my legs elevated on pillows while I was really sick with my heart failure. I am ready for a fresh start! Lots of changes to come this summer, all very exciting. I am looking forward to spending the weekend with family for the Fourth of July, and I will update again soon!

Ch ch ch changes

What a whirlwind of a week.  Lots of change happening around here. I have realized over the last few months that I am unable to sit still without something “big” on the horizon. When I first started to get sick in 2010 with all of this heart stuff, I found myself on the couch day after day, bored out of my mind and itching to go back to work. I would make it a goal to find a project to work on, first of which was my career change and the plan to open and private psychotherapy practice, along with taking a course to get my certification in coaching to add to my practice. Months later, I also got engaged to Andrew, and planned our wedding for 6 months after.  My family always jokes that I am a “right now-nick” and that is truly the case. When I put my mind to something, I want to make it happen that second.

This has become a good distraction for me, but can also be problematic. As soon a Andrew and I got married, we found a house, and months after that started a gloomy year of multiple failed IVF cycles. Next up was the crazy pregnancy, all the heart stuff- the months living in the hospital, the NICU, planning the trip to Tampa, the transplant, and finally coming home. Then what?

We have worked for almost a year now to set up our (fingers crossed) upcoming pregnancy through our gestational carrier and lovely friend Jess. We feel so blessed and lucky to have met this amazing woman and mother of 3- it truly takes a remarkable and selfless woman to bake our baby for us for almost 10 months! We have been through a long process to get here, completed the dreaded IVF cycle, and we are ready to transfer the embryo next month! LOVE YOU JESS!

Now, did I mention we are moving next month too? We made the decision a few weeks ago, and are getting ready to pack in the end of July. Holy craziness. We are not moving far- just to the next town over of Dedham, and we are very excited!

Here’s the thing.  I truly do believe that I thrive off of this hectic life. momande

I don’t like to stop and think about all of my medical issues. I don’t like to remember all of the things that have happened in the last 6 years. “Doing stuff” keeps me moving forward and helps me stay positive and energized.

So though I anticipate the next few months with be very crazy, I am looking forward to the mayhem. Mayhem works well for me. 🙂

 

 

Welcome to New Heart for Mama

Well, I have no idea how to blog, but here I go! I do have a story to share, and most of those reading this right now already know that story. It has been an intense and stressful two years, but we can finally say that things have calmed down after Ethan’s birth and NICU stay, and my subsequent heart transplant.

I started this blog for many reasons. Those of you who know me know I have a lot to say, and why not write it all down? I did this! I finally finished my memoir, Against Doctor’s Orders. A few publishers have read my manuscript, and I think it is important for me to make a platform for myself as an author.

Another reason for blogging is that I miss my work as a psychotherapist and health coach, and I would love to be able to have a place to talk about health topics as well.

Coming up next, will be a sneak peak into part of my book. Thanks for reading and I look forward to blogging more!