Praise & Request:: Enzymes improved!

Praise: Just a quick little note to thank you for your prayers and support – my liver enzymes are lower than they were even in January!  I got labs drawn Friday, and Molly called me late on Friday to give me the good news so I wouldn’t worry over the weekend.  My enzymes are in the normal range again, so the little increase in my Prograf must have worked.  (It always does.)

Request: The “for-sure” date for my next (2nd) endoscopy with dilation is Friday, March 16, so please be praying for that.  It’s under general anesthesia, and there’s always enormous risks with that.  Plus I really hope this does the trick to quit the choking spells once and for all.  It’s been about 2 years with them, and they are scary, embarrassing, and painful. No fun! 

Enjoy your week!  It’s definitely springtime here in Ohio! 🙂
Amanda 

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The break is over

My few-month break of laying low from any major medical drama is wrapping up.

Sure, I’ve had a couple ER visits and almost got my tonsils taken out, but I’ve managed a low amount of appointments and tests, and I’ve enjoyed great (monthly!) lab results.

But all good things come to an end.

I’m now in a major physical therapy and treatment program for the injuries I sustained in my 9/2007 car accident. I drive an hour each way to see my osteomanipulative doctor once a week, and twice a week to work with his physical therapy team. I have to wear an “SI Lock Belt” 24/7 to keep my hips aligned. I have a folder full of exercises to do to strengthen my damaged back and healing abdominal muscles. The goal is to get rid of the constant pain. Please pray I can stick with this intensive program!

Then tomorrow, under general anesthesia, I will undergo esophageal dilation. After 3 doctors and a handful of tests, we finally found out why I’ve been having awful choking spells since pre-transplant. I have a ridge in my lower esophagus, and the plan is to dilate my esophagus so wide that the ridge pops off. It is an outpatient procedure, but there will be general anesthesia and its side effects, and there is the risk the procedure may need to be performed again. Please pray the procedure is safe and successful.

Thank you all for your continual love and support.

Amanda

Endoscopy Results & Scripture

The endoscopy went really well.  It was 2 weeks ago today, and even with my choking episodes, my doctor found nothing.  Absolutely nothing.  There is obvious evidence of where the varices were before my transplant cured my portal hypertension (see the previous post) but no more varices, no issues, nothing. I do have a hiatal hernia that was diagnosed a few years ago, so I’m blaming that.  We have no other idea what could be causing my episodes other than anxiety.  (My doctor’s opinion, not really my own.  I’m not having panic attacks before I have my choking attacks. Random.)

In fact, look how good my esophagus looks:

I got over the anesthesia very quickly and was back to normal life within a day or two.  Now I’m just dealing with anxiety, headaches, and the pulled muscle in my abdomen.  It’s not healing well, but I will see my surgeon tomorrow and see what he wants to do about it.  Dilaudid and muscle relaxers are not the answer, even though my primary care doctor does mean well. 🙂

Please pray for strength and grace as I have five appointments at the Clinic tomorrow, including my oncologist and surgeon.  We’re also getting an ultrasound to make sure my stent is holding well.

I’m very thankful because God has sent a wonderful mentor into my life who has experienced cancer, a near-death illness, and a terrible broken relationship.  We have so much in common, it’s unbelievable, and she’s been such an encouragement to me just in the past week we’ve been talking with each other.  And small world, I went to school with her daughter for 10 years and she also taught my middle school science class.  God is so good in the way He provides.  Yesterday she shared Isaiah 62 which states:

You will be a crown of splendor in the Lord’s hand, a royal diadem in the hand of your God.  No longer will they call you Deserted, or name your land Desolate… for the Lord will take delight in you… As a young man marries a young woman, so will your Builder marry you; as a bridegroom rejoices over his bride, so will your God rejoice over you.

God never, ever wastes our suffering.

Thank you for your prayers for tomorrow,
Amanda 

More testing

Tomorrow morning at 7am, I’ll be back at the Clinic – this time for an endoscopy and possible variceal banding under general anesthesia. I’m not the least bit nervous or afraid since my pediatric gastroenterologist, Dr. Hupertz, will be performing the procedure. I literally trust her with my life, and she’s done this procedure on me probably a dozen times.

The reason I’m back with my pediatric doctor is because I’ve been having choking episodes, and the transplant team wanted me to have an endoscopy ASAP, but I don’t have an adult gastroenterologist and I’m used to general anesthesia (which adults do not get).  So they said to just have Dr. Hupertz do it since I already know her and peds patients get general anesthesia.  Seeing her again makes me so happy.  She’s amazing!

So for those of you wondering what “variceal banding” is… Liver disease causes something called portal hypertension. The blood vessels harden up and blood gets pushed around until way too much blood is shunted into the large portal vein. All of the pressure combined causes what is called portal hypertension which can cause many issues including varices. A varice is a swollen blood vessel, so swollen that it could fatally rupture. Portal hypertension causes these to occur in many places internally, especially the esophagus. Any kind of stress or prolonged pressure can cause them to rupture.

Post-transplant, my portal hypertension is gone, but many varices are left all over the inside of my abdomen, as we have seen on CT scans. There is no longer high pressure to increase the chance of rupture, but the possibility exists that I have some still in my esophagus.

Like I said, I’ve been having several unexplained choking episodes, so while my doctor does the endoscopy, if varices are present, she will ” band” them. She uses a tool to put a tiny rubber band over each varice, and the bands, over the course of a couple days, shut off each varice’s blood supply so they die and fall off.

We’re not sure if varices are present in my esophagus anymore, but either way, we need to see what is causing the choking. These episodes used to occur in the last months preceding my transplant, but I’ve been fine ever since. Until after my splenectomy.

So please pray all goes well and we find an answer to the choking spells.

In other news, my excruciating left arm pain occurring since my splenectomy is still here, so I had an emergency vascular ultrasound on Friday to see if a blood clot was causing the pain. Praise God, there is no blood clot! But unfortunately, this likely means it’s nerve pain, and now I will be continuing treatment with neurology.

And then there was last Wednesday when I lifted an almost-three-year-old up and over into his crib and completely tore out a muscle in my abdomen – yes, a muscle that was still healing from my surgery.  My doctor told me no more lifting and put me on muscle relaxers, so I’ve been trying to take it easy.  It’s so painful – I definitely learned my lesson!!

Lastly, please look into signing up on the bone marrow donor registry. I put a lot of thought into it and then tried to register today, but unfortunately they won’t accept organ transplant patients. And I cannot donate blood either because I’m too anemic. So please do that, too, for me.  Oh, and while you’re at it, sign up to be an organ donor.  🙂  One day I hope to be able to give back, even though I know I could never repay what has been given to me.  I will at least try for as long as I live.

Have a wonderful week.  Count your blessings, and do something today to make someone smile.

Love,
Amanda