Pneumonia

It’s 2.41a and I’m laying in bed in my local hospital. I have a spacious private room and am hooked up to telemetry monitors. I’m receiving morphine, zofran, and 2 antibiotics daily.

I am being treated for a pneumonia I only got for being immunocompromised.

I haven’t been feeling well since my bone marrow biopsy/aspiration, thus I’ve been sleeping on the sofa downstairs in my house. Monday, very early in the morning, I had an unexpected coughing spell. My parents woke up and Mom came down to check on me. The coughing was very rough and only stopped a little after Mom gave me cough medicine. In the morning, I woke up with chills, my whole body shaking, plus a fever. Dr. Lichtin has been repeatedly telling us to go to the ER if I have a fever or chills.

So, my awesome mom dragged me to the ER, who later sent me on a fun ambulance ride to the local hospital. I asked them to take me to Target, but it was a no go.

From here is a very long story, but an xray clearly showed pneumonia. They have no idea how it got here but, as we well know, being critically immunocompromised can do it.

I’ll update you later but for now, this begins my week. I hope I’m not in here long, but I am not in control now. Thank God we know Who is!

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8 Months – News & Prayer Requests

Hi everyone,

Yesterday marks my 8-month transplant anniversary. In important news, this year’s Lifebanc Gift of Life Walk & Run is going to be Sunday, August 13 at 7:30am I don’t have my leaders’ guide yet, but I will be leading a team. I hope to have double the participants as last year so write it on your calendar, invite a friend, and stay tuned for an information statement here – probably in a month or so. Here is last year’s campaign page – Gift of Life Walk & Run! as well as photos/video about last year’s event – if you’d like an idea of what this is all about. This year I will have 365 more things to be grateful about, and a donor to honor, so it’s my dream and goal to get double participation.

So news about me. If you’re here, you probably are interested. 🙂 I have a few people checking in via email and social networks, and this is your update. To be candidly honest, I am not feeling that well right now and am extremely overextended with school and obligations, so please let this be your update. My inbox is so behind right now, you don’t even want to know! I love you all, I just am not physically up to all I want to do at the moment.

There is so much going on right now, I don’t even know where to start!

Since March and throughout April, I have had 4 trips to the ER, have seen 2 new specialists, 2 MRIs, 1 CT scan, and numerous other tests.

I desperately want to tell you how well I’ve been feeling and how amazing this new life is, but I can’t do that this time.

See, a lot of you – myself included – may have thought post-transplant life would have to be amazing – easy, even.  Low key.  Healthy.  Fewer meds.  More energy.  Healthy.

One day, I’ll get there.  But not today.

Sure, I have to think of where I was before my surgery.  I had so many other diagnoses along with liver disease, and a tumor to go with it, so thinking one surgery would cure my life was foolish.  Yes, I have a healthy liver now.  That’s amazing.  But I still have back pain, fatigue, and fibromyalgia, with the addition of medication side effects, a low immune system, chronic neutropenia (low white blood cell count, in my case – 1.5 – critical), and newly, degenerative disc disorder and arthritis in my back.  I have to go to the hospital with practically every new problem that arises, even if I’m just sick with a virus or dehydrated.  I get a new specialist over ever issue, because my transplant team acts like my body is a gold box housing a diamond, a donated liver, a rare treasure to guard like it’s the most important thing in the world.  I agree, this gift is priceless, but I think sometimes they go to the extreme.

Either way, this is my life now, and 8 months later, you’d think I’d be able to cope with it.  Sometimes I wish I had my surgery when I was a lot younger so I wouldn’t know what kind of life to compare it to.  Maybe this would be normal to me.  Or maybe my idea of normal life is skewed from being a victim of childhood chronic illness.  What if this is the best it ever was, or ever will get?

I’m trying to be okay with that.

The other week, I had many doctors appointments to figure out some more issues going on with my crazy body, and since then, we are still trying to get on the path to answers.

First, throw in a virus that had me to my PCP twice, ER twice, and required 2 types of antibiotics.  Not fun.

Then, the “big thing” right now – we are consulting with a hematologist/oncologist about my chronic neutropenia and thrombocytopenia (low white blood cell levels – “critical,” even, and low platelet levels).  Last week, I had several labs done for oncology and a CT scan for them.  The doctors have also ordered a bone marrow biopsy, as well, which is my absolute last choice for anything.  More on that another time.

Last week, a home care nurse stopped by to teach me how to administer pentamidine treatments to myself at home.  Because my white cell count is so low, I’m at risk for PCP pneumonia, one of the most dangerous kinds of pneumonia, so I have to get these monthly treatments now.  They taste really bad, hurt my throat, and make my voice hoarse, but at this present time, I don’t have a choice. It’s also scary why I have to get them.

All of that said, my good news is that I’m going to Disney World tomorrow – hopefully – followed by 2 weeks in Ireland with my nursing school.  I’m hoping I’ll be up for both trips.  If I can just have improved health during this month – nothing more – that’s really all I want.  I’ve been especially dreaming of Ireland for a couple years now, so please pray for my one wish to come true.  I filled out my application, turned in reference letters, interviewed, got accepted, paid, bought rainboots, started packing… I’m so close to being there!  🙂 It’s such bad news that my WBCs are still so low. I’m waiting to hear from my infections disease/travel medicine specialist to confirm whether or not I can still go on these trips – I don’t think anyone was expecting my labs to get, and stay, this low. Not only do I sleep all day and am so weak, but I don’t have much of an immune system at all right now.

Despite it all, I’m forcing myself to still get out there and enjoy life so it doesn’t pass me by. I’m making desperate attempts to keep up with all the people I love, the friends I hold so close to my heart. And it always is such a wonderful thing to see how we, at our lowest, can care the most for others who are hurting. It’s an amazing part of this human suffering, and the times during which I am low, it’s so evident – and such a blessing – to me.

But the enjoyment of everything, the gratitude, are the only things keeping me sane right now. I was thrilled to be able to attend my precious cousin’s wedding a month ago as well as my little buddy’s karate testing – yellow belt!  I go out with my friends a lot and have still been able to go to church and Bible study – priorities! School hasn’t been going very well, but I can’t say I didn’t try. Fun in the works is my baby sister’s graduation party and my birthday in a few months.  I think because I’m a summer baby I have an extra passion for summer, and I’m making mental lists of all the things I want to do this year!  Last summer doesn’t count for too much but waiting on my liver.  Even though a year ago this month was the time my world was forever changed, I’m trying to focus on the good things that are all around, even if it’s just snuggling with my little Haylie, the anticipation of Ireland, or the feeling of seeing that perfect pair of shoes on the shelf. I love moments like those.  🙂  So everyone please spend the next week savoring the big and little moments, being passionately grateful, in and for your life.

So friends, this is your big update on all things in my health life. Thank you, thank you, thank you for all of your support.  Please pray I may have peace with everything no matter what happens as well as the purest form of gratitude for my new life highs and lows.

Love, love, love
Amanda

One night when I was really upset about all the confusion and pain going on around me, my mom wrote this Scripture down for me:

Be merciful unto me, O God, be merciful unto me: for my soul trusteth (taketh refuge) in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

Psalm 57.1

Dehiscing & debriding

Since the parents don’t like me posting pictures of my incision on here…. close your eyes and imagine 2 big craters along an otherwise healed over Mercedes Benz shape – a “chevron” they call it.  That would be my poor, still-swollen abdomen.

Rewind to that video I posted below.  Literally 1 minute later, I went to change the dressing on my incision, and it seemed to be extra yucky and oozy and had well, to put it nicely, an odd “odor.” Being an almost-nurse, I knew this was cause for alarm.  Two days prior, my doctor swabbed the two dehisced (torn open) spots, sent them to the lab, and one came back infected.  They said it wasn’t a big concern unless the wound itself looked worse or I developed a fever.  So afebrile (fever-free), I went on with my week, no problems.  Then came 1am on Friday night, or umm, Saturday morning.  Late Friday.

With this new situation on my hands, I had no choice but to call the liver coordinator on call and see what I needed to do.  After going to the ER last week when the drain stitch was removed and I developed a major leak, that was the last place I wanted to go to again.  But, the coordinator assured me I needed to get to the ER – not my regular, local ER, but of course the Cleveland Clinic ER so they could access my entire chart and the swab culture results.  Right.

So we drive an hour up, me and my mom half asleep.

To make a long story short, lots of dilaudid and morphine and nubain and bendadryl later….  the ER resident cleared me, the ER head doctor wasn’t sure, and we ended up waiting till around 7am when the staff transplant doctor would come in to round and could stop by the ED to check out my incision, sort of like a 3rd or 4th opinion, just to be safe.  After all, a staff transplant doc would know the situation much better.

Without any warning, the doctor – whom I’d never seen before – came in with a familiar resident at his side, and he immediately got out forcep-tweezer-things and started pulling out everything even close to my dehisced spots.  He was debriding any infection, relentlessly and forcefully, that I figured out.  My mom was mad, and I was even madder.  “What are you DOING?!” I, tired and drugged, admittedly demanded. “Well if I told you, you wouldn’t let me be doing it.”  (Excuse me?!) I begged him to stop, but by the time we were done arguing, he was done.  I again used my demanding voice, this time in a helpless plea for drugs. He rudely told the resident to pack my incision (packing debrides wounds), and out he went.

Bad experience.

Bad experience in a dirty ER at the place that’s supposed to give you “World Class Care” and is ranked #1 in so many specialties, #4 hospital in the country, #1 transplant center in the area, maybe the region.  Right.

The resident was one I’d known since being in the hospital, I forget her name but she is from Spain, and she’s very sweet.  I looked down and couldn’t believe what my stomach now looked like – instead of a yucky looking line with a little spreading, I now had two craters – one round, one long, and the keywords here were deep and open.  Pink, shiny tissue, deep and wide.  All I knew was this was several steps away from being previously stapled together, neatly healing in a straight line.

No antibiotics because the doctor picked out all the infection, and no antibiotic ointment as suggested by the doctors earlier in the week, because they like to keep the incisions dry.  While with the packing, they want to keep them wet.  Confused?  Yes, please.

So fast forward to now.  We’ve been doing wet to dry dressings at home, twice a day, with our stash from the ER – packing strips, sterile saline, abdominal paddings, applicator sticks (super long Q-tips) and lots and lots of tape.  It’s been a nightmare.  Since my stomach is so swollen, I had to teach my mom how to do the packing and dressing changes because I can’t see the holes when I lay down.  Haha

They finally decided to get CCF Home Healthcare in today, and now someone is coming twice a week to measure the holes and make sure they’re actually getting smaller.  Today I measured in at like 1.4cm deep by 4cm, the other I’m not sure on (over 10cm?) but she said it looked like a shark bite!! Thanks.

Kind of like people trying to compare C-section scars with me (okay, you had 12 staples – how is that like the 50+ I had?), saying I’d look cute pregnant (I’m still swollen and I’ve been told multiple times I’d make a cute mama… inappropriate), or the doctors who won’t give me pain meds because “By 1 month post transplant, patients only have higher chances of getting addicted.”  Yes, but does the average patient have 2 craters in her abdomen?  Didn’t think so.  My home healthcare nurse said I should at least be on fentanyl patches since I’m allergic to Percocet and Vicodin but I doubt it.  So I’m toughin’ it out. For now, at least.

Good news, though – the home healthcare nurse said the more protein I consume, the faster this will heal.  She said if I double or triple my protein intake (which is minimal seeing my appetite is zero) that I’ll be in one piece in no time. So what did Mom do today?  Went and bought be a ginormous container of protein powder!  I ate tons of chicken for dinner and then downed 34g of protein in the form of a nasty, nasty vanilla-flavored milk cocktail.  26g in the powder, 8g in the milk. I love milk, but the powder is just intolerable.  Unless, of course, you have two holes in your stomach.  I’d practically drink tar to make them go away!

So that’s the update… Feeling better but still pretty much homebound due to my painful dehisced incision and immunosuppressed status.  Plus my naps, twice/week labs, twice/week nurse visits, and weekly/bi-weekly Clinic appointments keep me pretty busy.  🙂  My doctors added a 2nd immunosuppression drug to my regimen this week, but I’m wrapping up an antifungal pill (which is disgusting and has to be sucked on 4 times a day) and only have 2 more months on an antiviral.  Also by then, my body will have adjusted much better to the 2 immunosuppressions I’m on, my incision will be healed, and I’ll be out and about with more energy than ever.  Hopefully!  I’ve been to a few stores (and shopped online a lot!), I’ve been able to start going to church again, and my schedule for October is filling up with a few fun outings!  Watch out in November – I’ll be better and driving and ready to go! By the holidays, I hope to be almost great, and if all goes well, back to school January 10!

So there’s your update.  The cards and calls and emails and everything are all still coming, and I am so grateful for all of your continued prayers.

Love to everyone taking the time to read this and care about me  🙂
Amanda

Stupid incision

Wednesday, while talking to Infectious Disease about unrelated questions, I asked Dr. Avery to look at my incision. (Which I’ve been convinced for a week is getting infected.) She decided to swab it and send it out for cultures. Sure enough, I found out today, while 80% of my incision has healed, 1 of the 2 open spots has enterococcus. They said don’t worry unless it gets worse – pain, redness, discharge, odor. Well at 12:30 after finding some jammies to crawl into, I decided to put a fresh dressing on my incision. The infected spot had grown into the dressing I put on 6 hours prior, and well I’ll save you further details. I called the coordinator on-call, Jackie, and she said get to the CCF ER where they have the culture records and can prescribe the ointment and antibiotics I needed in the first place. Being immunocompromised, I told her how frustrating it was that no one just erred on the side of caution and treated it earlier. Oh well.

Currently on the hour drive there and already can’t wait to go home.