An update and an invitation

It’s been so long since my last update. I’ve been busy enjoying life and, oh, just getting engaged to my best friend and biggest, sweetest supporter. ūüôā We are getting married in the spring, and we couldn’t be more excited.

View More: http://footstepsphotography.pass.us/goodwinengagement

I’m nearing four years with my new liver, and it is so healthy. I only have one more year of the hepatocellular carcinoma protocol and then I’m officially in the clear. I’m doing well since my last major surgery last August and the reconstruction has not only helped cosmetically but it has radically eliminated my adhesion pain. If you have had multiple whole-abdominal surgeries like I have and you suffer from pain from adhesions (or undiagnosed, piercing abdominal pain) please look into this. Insurance covered mine since it was done for medical reasons (adhesion pain). Before the surgery, I was going to the ER regularly for sharp, overwhelming abdominal pain, and I haven’t had to go in at all since the surgery. The surgery was pretty major, lots of staples (or was it stitches? I don’t remember), and I ended up in the ICU afterward due to almost going into sepsis, but the pain was completely worth it. I’d do it again in a heartbeat.

As I’m on immunosuppressants to prevent my body from rejecting my liver and suffer from a few chronic illnesses, my immune system is pretty weak. I have always been regularly sick, frequently on antibiotics, etc. I finally got fed up and saw a renowned ENT (ear nose throat) doctor at the Cleveland Clinic, Dr. Geelan-Hansen. After one look in my throat, she suggested that she remove my tonsils. I had been told before that they were “cryptic tonsils,” which means that they were so swollen they would rest on the back of my throat. She told me it would be two weeks of the worst pain in my life (that’s a LOT of serious pain to beat!) and to stock up on all of the soft, cold foods I could find. I was afraid of what could possibly be more painful than a liver transplant but was pleasantly surprised how minimal the pain was. Eating Jell-O, ice cream, and oatmeal for two weeks in January was far worse than enduring the pain. However, my throat has not hurt a single time since recovery from surgery, and that is a big accomplishment for me!

I found myself calling Dr. Geelan-Hansen again this spring after half a dozen ear infections, and we decided to add tubes to my ears as well. This happened a couple weeks ago. Ear tubes help fluid drain out of ears rather than sit around and cause infections, and so far, I’m enjoying no more ear infections! I had them inserted under general anesthesia, and I’m definitely glad I did that as the post-op pain was pretty bad for about a day.

I have been so much better, as far as getting sick goes, since both surgeries.

Around the time of the tonsillectomy, I was getting overly upset about my chronic pain. Every single day, I was in excruciating pain, and anything I did just made it worse. As I’ve mentioned before, I have tried every single pain relief option (medication or treatment such as massage/physical therapy) for years and nothing has worked enough to continue it. A friend recommended that I see a local rheumatologist who almost cured her pain, but I had procrastinated because I didn’t think the doctor would be able to make much of a difference. This winter, I decided it couldn’t hurt to try. Dr. Azem was so compassionate and kind and also a genius. After one look at me, she had several points of evidence that I had psoriatic arthritis. She ordered some labs to rule out other things and upon a second visit, she confirmed the diagnosis. It’s basically an autoimmune form of arthritis that produces severely painful, swollen joints. It typically causes psoriasis, too, which is a skin disorder, but thankfully I don’t suffer from those symptoms at this time. So while I didn’t need any more diagnoses, I was happy that we now had some new treatment options to consider.

Between careful discussions with both my rheumatologist and my transplant team, we decided a drug called a biologic would be the best first course of treatment for my PsA. There are several biologics, all taken via injection or through an intravenous line (IV), and my doctor thought Enbrel would be the best treatment for to start with. I have been injecting myself weekly with Enbrel for around four months now, and I’m happy to say my pain has decreased. It hasn’t been a miracle drug, but I have noticed a difference in my pain levels. I am so thrilled to report that. The shots burn pretty badly, and I’m no baby when it comes to pain, but 30 minutes of icing my leg before the injection helps a little bit. I have some other ideas on reducing injection pain that I will share later after I try them.

I’m also experimenting with natural remedies like super foods and essential oils which I am loving and will share once I try a few more things I have in progress.

The PsA flare ups are horrible. (I have been having them before the diagnosis but I considered them to be fibromyalgia flares.) Flares are a short time (weeks/month) when the pain is completely out of control, and they come from absolutely no where without any warning. I’m thankful that there is also a treatment for PsA flares – steroids and pain medications. Steroids, while definitely not a drug I would choose to take, decrease the inflammation, and the non-narcotic prescription pain medications take the edge off.

Compared to my health at certain times in the past, I am so great. No big surgeries, no more chemo, no more balancing on the tightrope over death. I really couldn’t ask for anything more than I have now, both physically and in my personal life. Of course I sometimes still struggle with my new normal, and I wish I had as much energy or as low pain as “average” people, but this is my reality. This is what God has given me, and it’s my job to make the best of it and inspire others with the provision He has given me throughout the past 22 years of illness. Each day, I think of how much I owe to my organ donor for so many more opportunities to live my life to the fullest. I wish I could repay him in some way, so I just pray for his family and hope to meet him in heaven one day. He is my angel.

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Also, it’s that time of year again!! It’s my team’s 4th annual Lifebanc Gift of Life Walk & Run at Blossom Music Center! So far, we are going to surpass our record for biggest team in our team’s history! I am so blessed to have such a great support system to support such a life-changing organization as well as the fact that I’m alive because someone said “YES” to organ donation. Please click here to view more information. I am officially inviting you to be a part of a truly fun, exciting morning. Please consider joining our team or even donating the cost of tomorrow’s latte for the cause of organ donation in Northeast Ohio!

Love to you all.

Lately…

Posting this from October 1:
It’s been awhile!

September was a busy month but I did have my annual checkup with my transplant/spleen surgeon. I had my CAT scan and tumor marker labs and I am tumor-free! Not a trace in sight! My liver is doing so well that we reduced my anti-rejection medications by 0.5mg. I got a clean bill of health, considering the grand scheme of things.

I had some migraine infusions throughout the summer and then found a neurologist who works mostly on headaches and migraines. She changed some meds and scheduled a procedure, so let’s see how that goes later on. I’m very hopeful about her. She is a Cleveland Clinic doctor, as all of mine are.

Now it’s October – my, how time flies! I’m currently at my second ketamine infusion. Ketamine is an anesthetic agent but studies have shown that it can have nerve pain-relieving qualities. At an appointment in September, my pain management doctor and I agreed we had exhausted all options. We have tried everyone and everything and I still live in pain. So she explained ketamine to me and told me we could to try it. I eagerly signed on.

Last week, I had a ketamine infusion and another today. I lay down and get an IV of ketamine with Versed (midazolam) to counteract its side effect of anxiety. It IS anesthesia so I do get dizzy and tired, so I mostly sleep and sometimes work on my phone/iPad when I’m not too dizzy to read. I find it helps if I close one eye. Things don’t blur and spin as much. ūüėČ But the great news is that these treatments seem to be effective so far. My doctor is highly regarded and esteemed, and I’d trust this one with anything. She says ketamine can be uneffective, or work for weeks to months. Hey, I’ll take whatever I can get! I’m very hopeful about this one. Pray for me, friends!

I came home and meant to post that for you all but of course, I was too tired and the iPad didn’t seem to want to sync with the iPhone or laptop.

Since then, more ketamine good news. ¬†I go back in 2 weeks for another, and I’m excited. ¬†It’s really taken the edge off of my pain which is SO. NICE. I am exited to see how the third one helps as they supposedly build on each other. ¬†The only downside is I need 2 days off each procedure. ¬†One for infusion day and the next for sleep-off-the-anesthesia day. ūüôā

I’ve been busy lately, especially trying school for the first time in over a year. ¬†I’ve added a Bachelors of Science in Public Health with a focus on Health Promotion & Education to my Nursing major, so I have extra work to do now! ¬†The good part is that all of the Public Health courses are online, so I can work on it while I’m trying to get the stamina to return to Nursing and clinicals. ¬†Please pray that I can get there by spring. ¬†Then I’ll graduate with two degrees and move on to whatever God has out there. ¬†Something I still have yet to learn. ūüôā

Here I am Lord, send me

After this long night, it will be the time for my now annual checkup to make sure my body is doing a good enough job housing my donor liver and that nothing has turned hostile.

Today is the day I get to remember what’s actually possible and how grateful I am that it hasn’t occurred. …yet…

Every 6 months, I need to get a CT scan and labs done to ensure my body is still cancer-free. We look at organs, tumor markers, you name it Рjust looking for anything we can find to be wrong.

No matter how much faith I have, how many people I have rooting for me, no matter how much strength I can muster to get through each day, every 6 months I am left in a place I’d rather not revisit. ¬†After all, it wasn’t but a little over 2 years ago when on this visit, I found out a tumor plagued my liver and I’d be instantly put on the transplant list. ¬†What a difference an afternoon makes. ¬†Oh, how ignorance is truly bliss.

The what’s and when’s replay in my mind even when I shoot them down. The statistics of recurring tumors and cancer and even kidney failure as a result of my medications… So many complications wouldn’t be a surprise. I’ve given up on sleep tonight. ¬†I usually handle this better – much better – but lately, I’m just sick of being the patient.

Yet I know even if the worst did happen, I’d get through it just like I got through the past 20 years of sick and surgery and struggle. I’d get through it with my God and the wonderful people He has put into my life.

Aren’t we promised we have nothing to fear? Then why am I curled up in fear pleading with God to knock me out or let the Ativan kick in

This is uncensored real life, everyone. Sometimes there’s just no point hiding behind the wall. ¬†This is me, and when you, God forbid, get to a similar point in your life, you’ll understand.

Please pray for me today for…
1) the stamina to get through a grocery list of tests and appointments
2) kindness when it’s the hardest
3) God’s will be done
4) I maintain an open, accepting spirit. “Here I am, Lord, send me.”

 Kelly Clarkson: Up to the Mountian

Oh, this is what it feels like…

I love you all and pray this away from each and every one of you. ‚̧ ¬†Please pray I get through this, one day at a time.

How to Talk to a Doctor

I think this article, How to Talk to a Doctor, by the Cleveland Clinic, is so important. Our health and well-being can sometimes really depend on what our doctor pr practitioner tells us or does for us. With insurance and hospital regulations these days, your doctor likely only has 15 minutes with you before he or she is due to see the next patient. She is probably running late to begin with, so both of you feel rushed. Combine that other factors, and a visit to your doctor just may not end up living up to its potential. This article will help you understand ways to change that, and I think it is especially important for us transplant patients who face a complex myriad of issues and may not get to see our specialists very often.

A road trip, visitors & a splenectomy

It’s 10pm Wednesday night.

I’m sitting in a wheelchair in the backseat of an ambulance being driven by an attractive EMT.¬† We’re driving on the highway, under the stars, talking about life, love, roadblocks, choices and pain.

He controls my temperature and the car stereo system while he speaks words far more valuable than the gas in his tank or equipment in his trunk.

I’m excited yet petrified to be going to the Clinic.

Excited because it’s my favorite hospital, excited because my doctors are here, and excited because there’s a chance I will be on the transplant unit, able to see some special familiar faces.

Petrified because this is my last chance for answers on my low WBC and platelets. Scared because the next couple days are critical to the rest of my life.

I’m finding out – once and for all – if I need a splenectomy or not, if I want to deal with the side effects or even what those side effects may even be.

Forget the pneumonia hanging out in my chest… My problems now are much more important than that. Or maybe not – what if the worst – or praise the Lord, best! – is yet to be seen?

Either way,

Psalm 23.2-3
He maketh me to lie down in green pastures: he leadeth me beside the still waters.¬† He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.

Amen.

And thank you for all of the sweet friends who came to see me pretty much all day today.  You are all so precious to me.  Thanks for all the words of prayer and thoughts of kindness coming at me from so many places.

Love love love
Amanda

Milestones

Wednesday’s Liver Clinic went very well. ¬†It was a good visit with the surgeons (including Dr. Peter!) and my coordinators, Molly and Christine. ¬†Plus, I got some very good news. ¬†I think bringing them a box full of brown butter pumpkin spice cookies didn’t hurt either. ¬†ūüôā

First off, instead of weekly visits, this was my first “second week” visit, and instead of coming back in another two weeks, they let me schedule my next visit four weeks out! ¬†Yay!

Next, they liked my split-open incision since it’s healing so well. ¬†(Slowly, but surely!) ¬†We’re still doing wet to dry dressings twice a day, and probably will for a few more weeks, but they’re working!

Unfortunately, my Prograf (immunosuppressant medication) blood serum had gone from 5 weeks steady to a quick decreasing, so the docs had to increase my dose from 1mg to 2mg. ¬†I’m not happy about that, but they say it all depends on blood level, so my Prograf side effects shouldn’t increase. ¬†We’ll see.

But more good news – the surgeon who did my surgery wasn’t there Wednesday, so I got to see another (plus my favorite resident Peter!) ¬†Apparently, this doctor was pretty lenient because most docs stick to a 3-months-post-op no driving rule, and some even go towards 4 months, but this doctor told me since I’m off pain meds and doing well, I can slowly ease back into driving again! ¬† At just 6 weeks! ¬†He said to practice driving with someone – just around the neighborhood, etc. to make sure it wasn’t painful and I was comfortable with it, so last night, Mom got in the car and watched me drive… Yes, just like we did almost 7 years ago (when I first learned to drive!). ¬†I was a stellar driver, and pushing the pedals didn’t hurt my stomach, so I passed and am once again a driving citizen. ¬†Hooray!

Oh, and labs – I’m officially onto weekly labs instead of twice/week labs! ¬†My arms will surely appreciate that. ¬†Plus I will be able to sleep in a little later now an extra day a week! ¬†Since the surgery, it seems like every week I’m sleeping more and more, but the docs say it’s perfectly normal and will get better. ¬†I have a hard time falling asleep because of the steroids, but once I’m asleep, I’m gone … and for a lonnng time!

So lots of “ups” on Wednesday. ¬†I can’t believe I’m past 6 weeks.

After each visit, we eat in the huge wide-selection, all-healthy-foods cafeteria, but before we ate on Wednesday, we went to the Clinic’s new(er) Kelvin & Eleanor Smith Rooftop Terrace on top of the Miller Family Pavilion. ¬†I had been to the Clinic so many times and never made the time to get up there, and apparently it had “breathtaking skyline views” and was a beautiful, relaxing place where lots of activities took place like yoga, chair massages…. just sounded nice. ¬†Anyways, when I was in the hospital, everyone who visited me always seemed to go there, the on-hold message I get every time I call someone at the Clinic tells me about it, and I just figured any good, full-time Clinic patient needed to see what it was all about. ¬†Plus, it’s not that “new” anymore, so my absence was feeling pathetic. ¬†It was really pretty – not quite what I was expecting. ¬†It has a serene indoor part and then you can walk outside and see the entire Cleveland skyline. ¬†I tried to take a picture, but no matter where I went, I had to be behind glass and this pole was always in the way. ¬†Anyways, here’s our lovely smog-covered, typical-gloomy-skied city of Cleveland…

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And, I had to take this picture of my mom – she looks so cute, doesn’t she? ¬†And then she had to take a picture of me, which is just here out of theory. ¬†It’s not a particular favorite! ¬†I desperately need a hair cut! ¬†(We’ve been handling other priorities lately!)

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Yesterday, I went out with a friend to see a movie, and afterwards I went over to her house and played with her boys (the two I’ve babysat – and adored – since birth!) ¬†Then my Poppop and my other friend came over and Mom made dinner. ¬†It’s so nice catching up with everyone and feeling like I’m “a part of life” again. ¬†Each day is getting better.

Here’s me and my boys ūüôā

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Today I had an appointment with my pain management doctor whom I’ve seen for almost 2 years. ¬†They stopped my fibromyalgia and back pain meds with the transplant, and I definitely need some help now that the focus is off the transplant pain. ¬†She’s head of pain management at the Cleveland Clinic’s Hillcrest Hospital, and she’s also an anesthesiologist. ¬†She’s really¬†good and really¬†kind. ¬†She volunteers with all these youth organizations and really gets involved with presentations, giving back, etc. ¬†I’m so happy I found her.¬†Anyways, she had a cancellation and was able to see me today, and we’re trying to get some fibromyalgia meds back onboard, although it’s so hard because everything I take (even over the counter!) has to be cleared through my transplant coordinator who clears anything questionable with the transplant pharmacist. ¬†The reason is, drugs can alter my other medications (like my antirejection/immunosuppressants) and that could cause rejection, so this new post-transplant life includes being really careful about medications. ¬†It’s annoying, but important. ¬†Also, a side effect of one of the immunosuppressants is kidney damage, so we have to be careful with meds cleared through my kidneys, too. ¬†Thankfully my kidney-related blood levels have been really good, but they’re still very cautious… ¬†(Oh, and the long term steroids can cause bone problems like loss and osteoporosis, and the immunosuppressants make me more susceptible to cancers like skin cancer! ¬†That’s why I don’t like being on these new meds. ¬†But it’s that or die – literally – so I shall cooperate!)

Before my appointment, I shopped at Beachwood, and Mom picked up Panera while I was in with the doctor (yum!), and then she dropped me home where I grabbed my car to exercise my long-missed driving privileges! ¬†I had an interview with a new nanny family, and then I dropped off and picked up my new meds at Target, went to Macy’s, and pretty much wore myself out. ¬†(Who had a feeling that would happen?)

I wanted to share all these great things with all of you who have followed my journey so closely. ¬†Thanks for your care and prayers! ¬†Never ever forget where you started and how far you’ve come. ¬†I know I won’t. ¬†ūüôā

Amanda

PS РThanks for all the love Рthis was a such a sweet surprise this week from my friend and her parents!  Yum!

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