He is walking!

The next day

It was quite an eventful night. Due to his fevers and low blood pressure John was transferred from the orthopedic ward to bone marrow transplant ward which has many benefits. The first is he gets his own room and its cleaner so much less chance of him catching an infection while he is here. However the downside is the nurses here are not trained to deal with hip replacement patients. The physical therapist has come twice today and worked with John. The exercises he did were incredibly painful and although both times his blood pressure dropped and he had to lye down the physical therapists still said he "did well for his first day". His fevers went and blood pressure normalized early this morning but seem to return intermittently. He also has intense pain in the incision sites, and sporadic nerve spasms in his left leg. They are also culturally a blood and urine sample just in case the fevers are related to infection. There are few ideas flying around as to why he keeps having temperature and blood pressure problems; the first is he didn't get enough fluids during surgery, the sedation and epidural caused it (that's my theory after speaking with a number of people who have had epidurals) or its an infection. Suffice to say seeing John in intense pain is very hard but I take solace in the fact that after the pain will come the freedom. After all the joy comes in the morning and morning is coming...

14 Hours later

Hospital days are long, surgery days are almost intolerable. Those of you who have been or who have cared for a sick loved one can relate. Around 1.00pm this afternoon the surgeon told me the replacement had been a success. I waited a further 2 hours to see him; he was groggy but it was good to see him. They then asked me to wait an hour until he was transfered to his room. I waited for an hour. And then two. The third eeked by at snail pace and by the 4th I knew something was not right. They then called me back down to the post op ward. John was having trouble moving his legs; he had had an epidural but the nurse said it didn't normally take this long to gain range of motion. Suffice to say in the next 20 minutes John was lifting his knees (he's a crafty little bugger, it's like he heard the nurse say he couldn't do it and he thought "I'll show you") With that resolved we were left with 2 more issues. He has quite considerable pain at the incision site, again maybe nothing and he is runing a fever of 101. As with the first it could simply be his body adjusting. This was a big surgery and his body just got packed a whole lot of sedatives! So at 7.30pm I am back up in the family waiting room, my 10th (maybe more) cup of coffee in hand and hoping for the call any minute to go to his room and settle him in for the night. As I sit and write the verse comes to mind that talks about our battles not being flesh and blood but of spiritual darkness and light, the principalities above. I feel that in my mind. A part of me which says "despair and pity and worry" and yet another stronger part of me that says "trust, do not worry and have faith". I won't lie, I didn't have some long quiet time this morning, I haven't spend weeks fasting and seeking God for hours, I didn't "earn" this peace as I think sometimes we think we have too. The peace and warmth I feel from the Lord right now is a gift from Him to me; it is perfect Father giving his often faithless daughter the gift of trust. What a faithful father.

Hips don't lie

It seems about once every few months we have a "today's the day" moment. Here I (Amanda) am again frequenting the hallways of Brigham and Women's hospital waiting for John to come out of surgery. Fortunatly this was a planned surgery and one we have been anticipating for a long time. His pain started 14 months ago. His legs began to ache and then his hips began to feel tight. He assumed at the time it was the hills of Pittsburgh as we were visiting there, if you have ever been you will understand. It was a few months before he was diagnosed with severe avasular necrosis (John has a habit of getting oddly named diseases that very few have heard of). To put it simply when he had a bad GVHD reaction during transplant he was put on high doses of prednisone (insert blood curdling scream here *if you have been on it you will understand). These doses restricted blood flow to the hip bones and this caused them to die and become brittle. Due to medical red tape we had to wait till now to have this surgery. I am unsure if me crying at our appointment helped push the date sooner. 7.30am they wheeled him away from me, that moment is one I have never got used too. The emotion almost overwhelms me everytime. Bi-lateral hip replacments (both hips at the same time) take about 4 hours and with preperation time I was told not to expect any news till 1.00pm. As many of you know and have read I really believed it would not come to surgery. I believed I had a word from the Lord, several in fact, that God was going to heal John. I held to this. I proclaimed this. I have wrestled with this. But as I sit today I feel a deep sense of peace. And dare I say it I feel the Father's pleasure over me, like He is proud of me. I may have looked like a fool in the eyes of the world but I proved to be faithful in the eyes of my heavenly Father and that, for sure, is worth more than any earthly affirmation. In the end God was and is faithful, John is being healed, he will walk again and the "new season" that God has confirmed time and time again is coming will come to pass. Who am I to question his ways? Finally as I logged onto this blog to write I noticed our blog has had over 9500 views! I hope every person that has come and will come here will be infused with strength and hope that only Jesus can bring and please if you know anyone struggling with health issues direct them here. My next entry will be an update on John post surgery and coming soon an entry about how God used John and I to encourage a family facing a stem cell transplant. God is so good.

Update on Hips and Amanda's Surgery

I doubt anyone could say our lives are uneventful! Amanda's surgery on the 6th February went "perfectly" and her doctors are pleased with her progress; she will get all the clear in May. John saw his hip doctor last week and is scheduled for a double hip replacement on the 3rd May. We both look forward to being able to move on with our lives, John walking, Amanda healthy. It's been our hope for a long time. When we talk about the replacement we are filled with equal excitement and a tinge of disappointment. Our belief in God healing John supernaturally remains but we must also do what is right, what is medically necessary. It's not doctors or God; God uses Doctors all the time to heal people. We believe he has spoken so much over this past year about John's health and I admit (Amanda) that perhaps I misinterpreted and placed my own assumptions on what I heard. Truth is I know I heard the Lord and I know what He said, His faithfulness and goodness is not in question. However I have learned that often the problem is in the hearing, the human end of the equation. This last year has taught us so much. The art of simply trusting and the disappointment and sometimes embarrassment of walking in faith. The important thing is John is going to be ok, he is going to be able to be healed and back to normal. However God does it, it is surely his faithfulness to do it that matters. Should we complain about how He does it? Or should we just be thankful that He did what He said He would do? Pray for us as we approach yet another surgery. Pray for wisdom for the doctors, for strength for John, and for Amanda. Pray also protection over us both from the shadow of self pity. So often we are tempted to feel bad for ourselves, we look at our lot and we ask "why us?" but we know self pity is a poison and praise and worship of our Lord bring clarity and joy. Here we go again...

Amanda's Story

It feels rather strange to be writing a blog entry about my (Amanda's) health. I first noticed a problem back in June 2012 but told few people because I didn't want a fuss, plus i wanted to concentrate on taking care of John. After all he is the sick one right? Well unfortunately sickness hits us all at some point.
So here is my story and I humbly ask for prayer.

Back in June 2012 I missed a cycle and assumed, as you do as a married woman, that I was pregnant. A little scared but at peace I visited the doctor. The test was negative. So why did I not get my normal cycle? (Sorry if you are guy reading this!). In their tests they proactively also tested some other hormone levels including thyroid and one called Prolactin. Thyroid normal, Prolactin elevated. To put this into perspective, that should not be elevated unless I am in late stage pregnancy or breast feeding of which I am neither.

They waited and no cycle so 3 weeks later they tested me again, prolactin higher.
They booked me for an MRI because they thought I may have a tumor on my pituitary gland (gland shown to right)

It showed quite a sizable "cystic lesion". Back in June I suffered a very bad headache, worse than ever before and one that came on and left very quickly. I have suffered with migraines for years but this was different. It was so bad I was nauseous. Doctors think this could have been a small bleed that caused this cyst. They gave me medication and offered me surgery. At the time I lacked complete health insurance due to my immigration status (it used to be that if you had a green card less than 5 years you were not eligible for health insurance, and my status as a volunteer meant I was not eligible to buy it either; a rule that was recently overturned granting me full insurance).
Anyway I took the medication.

I went back to see my surgeon and endocrinologist before Christmas and the cyst remains, although slightly smaller. Today I called and ask them to book my surgery, the insurance has approved a 1 night hospital stay but the hospital is appealing for 3 days. So tomorrow the neurosurgery team will call and schedule me in.

I apologize for not sharing this sooner; for a long time I just wanted to not think about it but I value your prayers too much to withhold my need from you any longer.

This is a bump in the road for our family and believe once this is over I will be walking in full health again.

Thank you :)

Watch this Space!

It brings me great joy (and a little fear!) to announce that I (Amanda) am beginning the process of writing a book about the stem cell transplant experience. It has been on my heart for a few years now and more recently God has begun to speak to me that now is the time. Why do I want to write it? I want other young couples who walk through chronic illness to know they are not alone and I hope what we have been through can encourage and strengthen others who find themselves on the same journey. On a personal note I believe it will be incredibly cathartic to put into more words what happened. Please pray for me and advise me if you can! O and watch this space... :)