Health Update: Health , Wellness, & Finances

The following is sectioned into four parts.

Forewarning...it is long!

Part 1: Health

November 20th officially makes me 9 months post transplant; although to be honest it seems like the surgery was just yesterday!  This post was intended to be published the weekend after my last biopsy that I had on Oct. 28th, but my lack of focus and procrastination prevented that from happening so here we are.  

In other news, the biopsy results were the best to date:  zero rejection, negative for CMV, red blood count went up to a normal level and function and structure looked great.  My white blood count is still on the low side but we will address that after a few more blood tests.  Due to the positive biopsy results, I am able to reduce my steroids and one of my rejection meds (Cellcept), a lower dose of both will hopefully help aid me in feeling healthier.

I was informed, however, from fellow ARVD transplant patients, that most of their tacrolimus levels are between 4-6 approximately.  Whereas my doctors want mine around 12.  The difference doesn't seem like much if you aren't familiar with the drug but it’s incredible how much better one feels on a lower dose.  When my levels were around 20, I was in extreme pain that kept me bedridden pushing me to my pain threshold.  My biopsies are now 2 months apart so hopefully if my next one (Dec 16th) produces positive results then I will ask if lowering my tacrolimus is a possibility.

Ever since my appendectomy I have been feeling a great deal better.**  In combination with my medication reductions, I have felt less fatigue and lethargy and have had less bowel issues and nausea.  This has allowed me to start cooking, catching up on chores and resuming exercise.  After consulting with my transplant team, my family and my husband, I recently made a decision to stop attending cardiac rehab due to the restrictions that were placed on me as well as the limited equipment and availability.  Cardiac Rehab did not allow me to use any weight or stand-up machines even though my doctors gave me the go ahead, therefore I was not able to take advantage of the days I felt strong and energized.  Instead, Sterling and I joined a very nice gym with strict Covid protocols.  The gym has a pool which will eventually allow me to ease my way back into swimming and lots of nooks and crannies so you can space yourself out from other members although it’s been mostly empty.

**Feeling better = One strong day and then 1-2 rest (do nothing) days

Part 2: Wellness

Recovery from a transplant is a hard fought war that will never end.  This takes a toll on one mentally.  Transplant drugs are known to cause erratic emotions, pain tries to convince you to give up, and speed bumps trigger depression, anxiety, hopelessness, and being too self critical. For that reason, a transplant psychologist is assigned to your case.  Mine is currently following up with me monthly.  Although I am the one putting in the leg work daily, he has helped me tremendously. I was prescribed Cymbalta for my depression and Ativan for anxiety and sleep.  We just upped my Cymbalta dose and that has helped give me energy. Apparently depression can cause physical fatigue, not just mental.  My body is very sensitive to these kinds of medications so even though we have increased the dose it is actually the normal starting dose for the majority of people.  

As I have encountered setbacks this year, I often respond to them with self hate.  I tend to judge my lack of actions too harshly, and so my job now is not to be too critical on a day I lack energy and strength and just rest, even if that includes consecutive days. My mom helped put this situation in perspective.  She said I act and respond to my many setbacks (surgery, rejection, infections, etc) by processing the circumstances as normal because I am so accustomed to these now routine occurrences.  She helped me see what I have and what I am going through is in fact anything but normal. I will say even my transplant team was shocked at my recent appendectomy. 

I also had a self realization one night recently where I noticed I focus too much on the future instead of living in the present. This inevitably causes me undo stress and anxiety.  I have always been one to not make plans too far into the future because I know something will manifest to change said plans.  But for some reason I worry about issues that I’m sure will work themselves out when that time comes, as they always seem to do.  So why do I continually put my mental health in a pathway of destruction for a future I cannot foretell?

For instance, I cannot get the thought of having to return to a job I hate sooner rather than later.  As someone who is on disability (which is next to nothing) and married to a teacher, our finances are not sustainable.  I stress myself out almost daily recently thinking about where I will work and when I will need to return to the workforce.  Thinking of the stress of resumes, interviews, business clothes, and many hours away from the comfort of my home.  Yes this is stressful, but why does it have to be.  Why do I need to give my energy to something that is not immediate? That is my goal, to let go of unnecessary stress from things I cannot control.

And since my goal is to not look into an unpredictable future that means when I live in the present, I need to make that a healthy living situation.  When I do live in the present I tend to dwell on the negatives rather than looking and appreciating what I have, how far I’ve come, what I’ve endured, and the amount of progress I’ve made.  I need to practice self-love because I AM beyond grateful for everything in my life and the simple fact of being alive.  There were many times throughout my 33 years so far I should not have survived, but I did, I am here, and I need to love myself!

Part 3: Hobbies & Goals

My Psychologist and I also conversed on how I have so many hobbies and crafts I want to get started but I am overwhelmed between my health, chores, and learning a new project.  We agreed I should just start somewhere, that a tiny little step was better progress than not.  For one, I moved my hobby supplies out of the office (Sterling’s man cave) and into the living room so they will be in sight.  I also started painting a large floral pain by numbers canvas that a friend sent me this summer, it is much harder than I anticipated.  Baby steps!

I also started cooking again this week.  Which by the way, I have to give props to people who are able to create content for blogs and social media on a daily basis.  That takes more work than many realize.  I have really enjoyed sharing my food journey on my new Instagram page (@kielsfoodlife), although I will admit it’s nothing special.  But taking pictures everyday of my food or while I’m cooking can seem so taxing sometimes and consequently I don’t get around to posting as much as I’d like or taking additional photos of the cooking process.  When I do get around to capturing my meals you have to then edit and post the pictures, write a caption and expel even more brain power when you’re already exhausted.  I’m tired just thinking about the process and that’s why I’m giving a shoutout to daily content creators...I see you!  

I have a goal of creating a new blog/website by my one year heartiversary (Feb 20th).  The blog will most likely be through WordPress but I am hoping to have my own domain name.  It will incorporate my health updates and writings, my cooking, photography, and any future hobbies I might try to  explore (macrame, DIY projects, anything to get my creative juices flowing again).  I am a product of an artist/designer so I do have a creative side to me, it has just been suppressed for so long between all my health scares and surgeries, heart failure, and work from the past 10 years or so.  I hope I am able to tap back into that side of me and if I had to pick a way to earn income I would love it to be through things I created myself that others are interested in purchasing.

Sterling and I are also considering investing in a couple of bikes, giving us the opportunity to explore the greenways a bit more here in Raleigh.  However at the moment we don't have the necessary funds or conditioning.  If we purchased the bikes, we would also have to purchase a bike rack for the car, helmets, bike lights, locks, etc.  which add up quickly.  We have started exploring parks around town but my legs do not have the stamina to walk far on uneven grounds quite yet.  Slowly but surely, I just need to do what I can and to stay motivated.

Part 4: Love and Thanks

As always,  thank you for all the love and support, especially if you made it through this incredibly long post.  I also want to express empathy and love to some of my friends out there struggling, I see you and hear you and I can understand your battles to a certain extent.  My mental and physical health are occupying enough of my time that I feel a bit saddened I cannot do more to help.  But please, I have had enough friends die unexpectedly or from suicide and it saddens me to the core, I do not want to see another one go because they felt as though no one cares or no one is listening.  Please seek help if you are one of them, people do care, I care, but I also need to care for myself.  I love you all very much!.

In addition, you should know that Sterling and I could not have made it this far without all of the emotional support but also the financial support.  Your donations mattered!  As I have stated before, many of our friends and family are in a similar situation as us, especially during Covid, being underpaid teachers and essential workers.  However, if you are able to donate anything to help Sterling and myself we would be more than appreciative.  We do not enjoy asking for financial help but during this time we are using all of our available resources and this blog is one those.

We are very fortunate that my parents have the ability to help financially, especially with my medical and prescription bills.  I am not sure how people are able to afford a transplant without Medicare or top notch insurance.  The average cost of a transplant is around a million dollars (no, that is not an exaggeration) and luckily Medicare covered the majority of that cost.  Many of you might remember when I originally became sick in 2010, I had to file for bankruptcy because my medical bills tallied over half a million.

Sterling is now having to deal with his own medical bills from the dermatologist, pulmonologist, and the dentist (needs a crown to replace a failed one and an implant or two) as well as his college loans and car payments.  If you are able to help in any way whatsoever, it will not go in vain.  If you are not, we completely understand, we are just extremely grateful for the friends and family who have gotten us this far.  It has been a grueling journey but we are still chugging along on our way up!

I want everyone to stay safe during the holidays, I know Covid fatigue is setting in with many.  Keep up the positive vibes and hopefully 2021 will be the opposite of 2020, we all know we need it! 

Until next time (hopefully on a new blog) Peace Y’all!

 

Go Fund Me Link

Venmo

Kiele's Food Life

Turtle Apple Pops

Paint by Number Canvas

It's Almost That Time!!!!!

Tough Week: CMV & IUD

***Before you read this, I want you to know I wrote this entire post which took roughly three hours and then it randomly deleted itself.  So now I have rewritten the post although not as good as the original, not that you would know because you never saw the original.  But I did, and it was better, but now my brain is exhausted.  It took about an additional two hours to rewrite this while trying not to let the frustration get to me while also trying to remember what the hell I had just written.  So yea, that's cool.***

The past two weeks I have felt under the weather and I wasn't sure why.  Certain test results I undergo during a biopsy can take up to a week to get back and it turns out one of those late results showed that I have tested positive for CMV (Cytomegalovirus). This is very common among transplant patients and usually treated successfully although in rare cases it does have the potential to be deadly. It's something many people are exposed to usually at a young age but lays dormant most of their lives, unless of course you are immune compromised. Some patients have CMV in their system pre transplant while others contract it from the donor organ.  Luckily, in my case, I was exposed to it pre transplant, which as my coordinator stated is much easier to treat as opposed to receiving it via the donor.  The CMV levels range from 2-9 and mine is at a 3, so it is on the low side, another positive.  

CMV has ravaged my digestive system causing extreme stomach cramping, aches, pains, nausea and lack of appetite in addition to fatigue and headaches.  Today I started a medication called Valcyte.  I was originally on Valcyte after transplant but I was allowed to stop taking it after three months of negative CMV tests.  Valcyte is $450 per month and I will need to be on it for a minimum of four months although that time frame can lengthen if the virus continues to stay active in my system.  I go in for another blood test in two weeks and depending upon the results the doctors will determine if I need to stay on that dose or if I can cut it in half as a maintenance dose for about 3 months.

In addition to the CMV, I have had extraordinary joint pain.  Because I had no rejection during my last biopsy I was allowed to lower my prednisone dose which is a good thing.  However, lowering the dose comes with the adverse side effect of joint pain and therefor the more I lower the dose the more joint pain I will have.  Having Fibromyalgia makes the joint pain even more intense and it is not going to go away anytime soon. The more I lower the dose, the more pain I will have. My knees, shoulders, and especially my hips are in excruciating pain, any and all movement is a struggle.  I can barely move much less sleep. 

AND not only am I dealing with the CMV and joint pain I’ve had to deal with the following… (Men, if you are not comfortable reading about what women have to endure monthly, you may want to stop here and scroll to the bottom to see some flowers!)

This topic is not always comfortable to discuss, let alone share on public forums, but this is what I've been through. This is my story and it's part of the entire picture and I think the stigma of discussing personal matters like this need to be lifted. It's something all women go through and the more stories that are shared, the more that women can see they are not alone or don't have to be ashamed if something isn't 'normal'.

When I was in the hospital in March due to my rejection, the doctors found a small mass on one of my ovaries.  It turned out to be nothing serious but then the GYN doctors began conversing with me about my birth control.  I have been on the same birth control, Junel, for over 6 years.  I originally started Junel due to my irregular periods and excessive bleeding.  I would bleed for two weeks per month, that’s half of a year!

The doctors insisted I stop my birth control pills due to the risk of blood clotting and get an IUD instead. Blood clots are another common problem for transplant patients requiring us to be on some form of blood thinner.  The doctors were ready to place the IUD at that moment but then decided against it since my health and immune system at the time were not in a stable place which put me at a higher risk for an infection.

Well this week was a few months later and I received my IUD.  The thing is, Sterling is willing to have a vasectomy, but due to my irregular periods, a vasectomy would be pointless because I would still need an IUD.  Receiving my IUD was one of the most painful experiences I have ever endured however brief it was.  The first attempt failed.  I was screaming and crying and there was blood all over the floor and table, and I tapped.  I quit.  Thankfully, I have the most amazing husband who helped me control my breathing and kept encouraging me to try again.  He was successful.  We tried again, and although it was still immensely painful, it wasn’t as bad as the first attempt.  If it wasn’t for Sterling, who originally wanted to stay in the lobby I would not have gone through with the IUD which would have left me no other option for my bleeding but just to deal.  I thought I was at my pain threshold but he knew I could do it and he was right. 

That was a very traumatic day for both of us. That man has seen way too much, between that and seeing my heart outside of my body. We called my parents on the way home from Duke to get my mind off the pain and explained what our morning was like.  Next thing you know as I am laying in bed a beautiful bouquet of flowers arrived.  My parents are amazing and always find a way to cheer me up even if it’s just a little.

Between fighting CMV and the joint pain, I have been bedridden for most of this entire week. I begin cardiac rehab in two weeks. With the rehab hopefully providing me a physically active routine and the Valcyte treating the CMV I'm hoping I can begin feeling better rather soon. I tend to get down on myself when I don’t do as much as I have in mind or I’m not as active as I should be.  This past week I thought I was just in a funk.  After finding out I was fighting a virus it was a relief.  It was a relief to know I just wasn't succumbing to my depression. With transplant, it is difficult to decipher between when you are not feeling well due to depression or whether there is something physically wrong. That unsureness makes fighting through fatigue and pain even more challenging. Right now I am resting, hoping for the best and will provide an update after my next blood test.

I commend you, as the reader, if you were able to make it through this entire post. Like I said, my original one was much better but I'm tired and don't care! As always thank you for the continued support and love. Keep staying safe and wearing your masks and enjoy the pictures of these lovely flowers below!

Trying to keep my Go Fund Me page alive, I updated it slightly.

Found the Bright Side

I just want to take this time to thank everyone for the love, support and encouragement you all continue to shower me with.  I do apologize that I have not personally responded to comments regarding my awesome haircuts, it's just quite exhausting for me.  Just know that I see you all and love you all.

I finally recieved my call today regarding my biopsy and I have NO rejection which is awesome!  It was followed by a BS excuse as why I wasn't called on Friday but I will not go into that and will move forward.  I do have to increase my Tacrolimus (main rejection medication), also the one that is causing my hair loss but I also get to lower my steroids a little bit.  I'll probably have even more severe joint paint but we will work through that!

As you all know I have been struggling with this Heart Transplant.  I haven't been able to see a plus side yet.  But then it hit me.  I have been having my groceries delivered due to my risk of getting any kind of infection, although much more expensive and they don't always do a good job of selecting and/or replacing your items.  As Sterling was doing yard work the other day our groceries were delivered.  Instead of asking for his help I decided to do it myself.  I was able to bring in all of the groceries, put them away and still managed to have energy left.  During heart failure, just carrying two bags of groceries would get me out of breath and then I would just have to sit down for quite awhile.  I'm able to bend over to reach things, pick things up, move things, all with out getting absolutely exhausted.  I'm also able to walk up hills and stairs without my heart racing although still difficult due to my muscle weakness.  

So as hard as this journey has been I am at least able to start living a life, which is why they wanted me to get a transplant before I needed to be hospitalized.  You can't always choose your life battles but you can choose how to fight them.  And you can't fight alone.  I am blessed to have such an amazing support team of doctors, family, friends but most of all my husband.

My husband cooks when I'm too tired, does the laundry when I can't, takes care of the trash, is always cleaning the bathrooms or kitchen or floors, takes care of all the yard work in the dreadful heat and humidity, gets anything that I need if I'm unable, consoles me when I need it, gives me space when I need that, takes care of me any way imaginable when I'm sick, watches anything I want, listens to anything I want, and does just about anything I want as long as it makes me happy.  He is my heart and soul and wouldn't have been able to do this without him.  I love you Sterling Cornelius McBride.

Speaking of the summer heat, it has been very difficult to get outside and exercise.  The only possible time that is manageable is early early in the morning.  However, I am still having a very difficult time with getting a good night of sleep so although I wake up early, my body does not want to get out of bed.  The doctors want me to be more active so we are trying to go on a walk every other morning.  Below are some recent photos of our last two walks.  By the end we are drenched and exhausted but at least I'm trying.  I should also be starting Cardiac Rehab soon, which will provide me a safe place to workout in an air conditioned environment.

Thanks for reading and stay safe out there and wear a mask.  Love you all!

June 20, 2020 Update

Today marks the 4 month mark since my transplant.  Not only that,  but it also marks what was supposed to be the weekend of our wedding.  A date that was already planned and set before finding out I was in heart failure and that Sterling and I needed to move back east for the transplant.

I had another biopsy this past Tuesday and everything looks good as far as functionality.  However, I did have low level rejection (Lv 1).  This is common in the first year but after having a couple biopsies with no rejection and being 4 months out, it does scare me.  I have been having a difficult time lately trying to fight through serious mental and physical fatigue.  It's tiring just to convince myself that I have energy to do something, and when I am successful I'm usually hit the following day with intense pain which includes joint pain, muscle aches, migraines, and zero energy to get out of bed; which is all the more defeating.  I seem to have about two good days a week at best on average.  It's frustrating and stressful and the medicines tear your body up, also both physically and mentally, especially the steroids.  There's not much positive I can say at the moment other than my husband is amazing at helping me in every way imaginable, oh yea and I'm alive.

Having an organ removed from you and then replaced by a stranger's is a hard concept to grasp, my body thinks so too.  I know I'm making progress as small as it may seem.  But even so, after a certain point it becomes very challenging to keep fighting just to stay alive.  I've been fighting with my health since I was a child, and I'm just tired and exhausted.  This is in no way me giving up, I'm just being brutally honest with myself and the world.  I don't ever photograph the bad days, so it can look as if I am doing amazing.  Nothing about this is easy but I ain't no quitter and I'll continue to put one foot in front of the other even if that's only every other day. As for now I continue my meds and go back for another biopsy in a month. 

The Covid-19 situation presents another roadblock into keeping a strong mental game.  It would be lovely and relaxing and a needed change of pace to be able to go to a friend or family members house for a nice conversation and dinner or go to a brewery or coffee shop to play a board game, or go down to the beach to celebrate what would have been our wedding day.  But neither of that is in the cards for us anytime soon, especially with the rates rising so drastically here in the south.  I'm not even allowed to venture into a grocery store or even a dr's office (unless it's a critical matter), I wasn't even supposed to go to the farmers market, but I was careful and I needed it for my sanity.

As I mentioned previously, this weekend we would have been in Charleston, SC by the water getting married.  Although, to be honest, I much preferred our court house wedding on Valentine's Day.  Small crowds are more my style, better for my anxiety too.  The following are some photos of our wedding day, me winning in Catan Rivals, me giving Sterling haircut #2, and me getting some steps in.  I know I'm lucky and I know I'm doing pretty well for only 4 months out, and I certainly know I have an amazing support team between my husband, my family and my friends.  I'll keep moving forward as long as possible no matter how bumpy the road. 

4 Month Post Transplant:

• Steroids: They make me emotionally unstable, break out like I'm a greasy teenager, make me grow man hair, and still provide me with a bloated face.

• I've been able to get back into cooking and meal planning and laundry when I have the energy 

• My motor control is still very shaky making certain tasks and hobbies difficult.

• I walked 2 miles the other day which is the longest walk to date since transplant

• My days still mainly consist of binge watching Netflix, playing games, and reading at night.

Thanks for the continued support and the random gifts and cards that keep my spirits high.  Stay safe everyone and please wear a mask for people like me!

Got THE CALL...and then it was Cancelled

So usually when I write a post I spend a couple days revising and editing so it becomes a little easier to read.  Well this time I'm just typing one out quickly because apparently I could get a new heart at any moment.

I just had to make one of the most difficult and life changing decisions I have ever needed to make.  After dinner around 6pm I received a call that Duke had found a heart for me.  I had to be at the hospital in an hour from that call.  I had a panic attack and could not decide what to do for a few reasons.

The obvious being that my life would be changed forever.  I will have all new health issues to deal with, a very long recovery if I make it through surgery, and some crazy ass scars (which I keloid badly so scars don't look great on me).

Another reason is because I get very stressed with life knowing bills will still come in, taxes still need to be filed, etc.  What will happen with my teeth as I am only a year out from surgery and still in retainers.  Simple things like that cause me lots of anxiety, having to relinquish control and put trust into someone else to keep my life organize.  Running a household is tough even with the both of us and thinking Sterling will be in ICU taking care of me and trying to take care of the house and bills just makes me unnerved and worried.  I know he can handle it, that is just a lot to put on someone's shoulders.

The other reason is that all week I had been planning a surprise wedding for Valentine's Day.  We were planning to get married this summer in Charleston and of course had to cancel those plans once we found out I was in heart failure.  Sterling has been wanting to make it official for quite some time now.  Knowing that in order for him to be able to make decisions regarding my health we had to do this soon.  We have never celebrated Valentine's Day so I thought getting married on this day would give us a reason and be an easy date for us to remember.  I reached out on Reddit for a photographer to help us out free of charge and I found one,  I reached out to NextDoor for a wedding dress and someone provided one free of charge, I also found a band to perform a few songs for us free of charge (Niito...they're amazing).  I had a hair appointment, outfits picked out, ring bought, marriage license application filed and then a 4 course meal at a historic house having a Valentine's Dinner Evening Party.  I didn't want all my efforts, and the surprise, and the money spent on clothes and dinner to go to waste. 

I called my parents to help make the decision on whether I should accept the heart or not but they were in just as much shock as I was so it was up to me to decide. Sterling kept reminding me, that my worries were about superficial things that could all be taken care of.  He kept encouraging me that accepting it was the right thing to do, that is in face why we are living in Raleigh to begin with.  I had about 20mins to make the decision and when you're having a panic attack that time flies.  My cardiologist called to give me a pep talk, and then eventually I listened to Sterling's rational mind.  How he remained so calm and sensible in such a stressful anxious moment, I have no idea, but that is one of many reasons why I love him. He's the ying to my yang.

Although the decision to accept the organ was a tough one, one we weren't quite ready for, we made it.  We packed our bag, made our calls, sent some emails and started on our way to Duke.  15 mins into the drive we get a call that the transplant has been cancelled.  Due to privacy issues they are not allowed to give much information but I was told that the heart could not be transported safely in a timely manner which I believe to be due to the warm ischemia time.  I'll explain...

I signed up for two new studies the other day which we knew meant I would get a heart much sooner, I was just not prepared for 3 days later.  The first study deals with how hearts are transported using an OCS machine.  Basically instead of putting the organ on ice, doctors are able to hook it up to this machine and pump blood and oxygen through it while also pacing it.  It also allows a wider range to acquire hearts, up to 2500 miles I believe which more than doubles the typical range.  This study was not that big of a deal so that was an easy decision to make.

The second study involves how hearts are procured.  They are taking hearts from what they call 'DCD' donors.  (Donation after cardiac death) This is where it gets a bit confusing and google will probably explain it better than me.  But basically the heart keeps pumping even though the patient is deceased and then warm ischemia time comes into play (how long the heart can stay in the body before being removed for donation).  30 minutes is the timeline and based on the information provided they were passed that amount of time.  More than 30 minutes they declare the heart to be unsafe to donate. 

The rest of the world participates in OCS transportation and uses DCD donors, it is not something a patient has to decide upon and that is why I chose to sign up for these studies.  The FDA is just behind the times regarding organ donation.  Knowing Duke was only 1 of 3 schools participating in the DCD study and one being Stanford across the country, we knew I would be getting the call soon.  But 3 days later!?  Only 100 patients are part of the DCD study that began in December, and of those 100 only half are eligible for a DCD organ due to them needing a control group.  It is a randomized selection and when I signed up I was randomized to be able to receive a DCD organ.  This means I am in a very small pool of people to accept a DCD within a 2500 mile range. 

It is very likely we will get the call again very soon.  Although this was very dramatic and I think I experienced every emotion under the sun, it was a great trial run.  Next time I get the call I will be ready and will hopefully be in considerably less shock.  I'm shook, stunned, mentally exhausted and just trying to breath through this.  Nothing about a heart transplant is easy, getting a new organ is very difficult on the body for it's entirety and extremely risky but I have to keep in mind I have no other option.  My heart is failing causing the rest of my body to fail due to lack of blood flow and oxygen.  We moved across the country for this and now it is all too real.  I don't think you can ever be ready for such a serious life changing event but we will be as ready as possible.

It's happening people, it's happening.  I'll continue to wait patiently and we still plan on marrying at the court house Friday unless we get THE CALL again.  Onwards and upwards.   Love you all for the continued support.  And if you want to come celebrate our marriage this weekend in Raleigh come on up...it's obviously no longer a surprise!

gofundme.com/kiele