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. 😉 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. 🙂

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. 🙂

March update: So much going on

Hi everyone,
Just a few things to report today…

My liver enzymes encountered a slight bump in my labs the other week.  Why do we care?  High enzymes can indicate rejection.  The team raised my Prograf (unfortunately) by 0.5mg twice/day to a total of 2mg twice/day.  As a refresher, Prograf is an immunosuppressant anti-rejection medication, and it is no fun because it causes tremors, hair loss, fatigue, and I’m starting to think kidney damage.  I’ve been reading around the internet and journals and it’s my personal opinion that over time, it damages the kidneys.  My last CT scans revealed a sub-centimeter cyst on one of my kidneys.  The kidney transplant surgeon said it was benign, but reading stories and other information is starting to freak me out.  I just try to keep my mind from going there.  I’ll get my labs redrawn tomorrow, and hopefully the additional Prograf has corrected whatever was going on.

Back therapy and treatment is still going on… I can’t say it’s going well, but I can’t say it’s going poorly either.  My back is having a hard time keeping it’s correct position – even with the SI lock belt/brace – but the last 2 weeks in a row I have tripped down the stairs.  (Really random, right?)  I currently have a virus, so I missed my appointment this week, but hopefully my osteomanipulative doctor can re-align me next week, and hopefully my back can keep its position for a week.  It’s a lot of waiting and hoping.  The chronic pain is miserable right now, but life does’t stop to let pain take its toll, so I’m just continuing on like I always do.

Regarding the esophageal dilation I had last month… it was unsuccessful.  I still choke on thick foods, and my gastroenterologist said my esophagus was dilated to 18mm which is supposedly a wide amount.  You can’t argue with choking though, so she’s going to have them repeat the procedure, this time dilating to 20mm.  That should take place in a week or two.  Hopefully it works.  I have noticed an improvement since last time, so I’m pretty sure one more time will take care of things.

I saw my pain management doctor today, and I am so frustrated.  We are completely changing my drug regimen since the Lyrica (daily fibromyalgia medication) isn’t controlling my pain, and it along with another medication are big, red flags in trying to figure out where my recent weight gain is coming from.  We discontinued a few meds today, decreased some, increased others, and I feel like we are  just shooting in the dark right now.  I’m so thankful for my pain management team, though – I feel like they’re on my side in trying to curtail the constant back/neck/everywhere pain.  Laying on the couch watching movies every night is not how I want to be spending my life right now, and they “get” that.

Your prayers would be so appreciated in this journey against increased liver enzymes, choking, and chronic pain.  Some days I feel like being a patient is my full time job when all I dream of is going back to school and wrapping things up.

I thank God every day that HE has a plan behind all of this.

Love to you all,
Amanda 

Urgent: All Over Again

It was Wednesday.  We had just left the Cleveland Clinic, and I told Mom how excited I was that I wouldn’t have to come back for three whole weeks!!  It had been months since I got a break this long, and with the splenectomy behind me and the fact that it was my one-year transplant anniversary, it felt so good.  I knew the CT scan and ultrasound could come back with abnormal results, and I knew there was an ongoing issue with a vein to my liver narrowing, but I wasn’t worried.  It was a good day.

Then Thursday, I got a phone call.  Funny how one phone call always has the power to change so much.

It was my transplant coordinator.  The ultrasound showed there might be more narrowing, but the radiologists and surgeons discussed my case and decided they’d need a different kind of CT to be sure about the plan of treatment.  I had to come in Friday for an abdominal CT because the matter was urgent.

Phone calls like that have been getting familiar, so the future scenario had definitely crossed my mind.

I went in Friday for the CT with IV contrast – no big deal.  I’d already had a few earlier this month, and dozens more in my lifetime.  But at the end of the day, I got a phone call, again from Molly my transplant coordinator, saying the narrowing has worsened and the portal vein and left renal vein to my liver are too constricted.  There isn’t enough blood getting into my liver, and my surgeon, the head of transplant at the Clinic, and a couple of interventive radiologists have discussed my case.  They all came to the agreement that I need to come in as inpatient Tuesday morning (Monday is Labor Day) to begin a process to open the veins.  Tuesday, they will put me on heparin therapy to thin my newly platelet-loaded blood, and Wednesday morning they will put me under general anesthesia (thank goodness) while they go in through my liver and feed a catheter through to the veins in question.  They will then inflate balloons in the veins and pull out.  If the veins stay open on their own, that’s great.  If not, they will put stents in to keep them wide open.  Knowing how I handle anesthesia, I’ll be in and out for the rest of the day, and then Thursday, I will have an ultrasound to see if the veins are doing well.  If they are, I can go home.  Let’s pray they will be.

So that’s my week.  And there goes next week.  I was supposed to start driving, go back to my nanny family, and basically get on with my life without my spleen, finally feeling good.  But sometimes life has other plans in store for us, so I have no choice but to again, bow low and do what’s best for my body, reluctantly conforming the rest of my world to oblige.

Your prayers are so greatly appreciated.  This is a risky procedure, plus there are so many risks to undergoing anesthesia.  And lately I’ve been completely emotionally drained, and honestly, really struggling. Having a hard time staying afloat right now.

Thanks for always being here.  I love you all so much.

Amanda

Another Update

Once again, I’m a little late on an update!

I’m all healed from my massive splenectomy!  My 40 staples are out, my incision is healed, and other than fatigue and sore (cut) abdominal muscles, I think I’m doing pretty well!  This surgery was a lot easier than my transplant, no question.  Homecare is gone, I’m done laying on the couch all day, every day 🙂 and I’m eagerly awaiting the day when I can drive again (mid-September).  

My labs have fabulously improved, and with the platelets and WBCs under control, we’re now working on the red cells.  I’m anemic, and my oncologist is trying iron supplements for a couple months before we look at any other measures.

As far as my surgeon, during the surgery, he discovered a narrowing in one of my main portal (liver) veins.  The narrowing causes decreased flow into my liver which could increase my liver enzymes (bad).  So tomorrow I’ll be at the Clinic for an ultrasound and CT scan to get a better look at that.  And a visit to infectious disease to see why my pneumonia shot isn’t “sticking.” 

That’s really it.  Hoping to start “normal life” next week (minus the driving 😦 

Happy weeks to all of you!

Amanda