This week finds me back in Houston in time for Lizzy’s surgery to relieve Pelvic Vascular Congestion. (I chronicled her journey to here a couple of posts back).
I have to admit this trip was not as hopeful as my previous one, when I believed Lizzy would finally find the solution to end her pain and regain her life. This time I left the Netherlands accompanied by a dark shadow which sat beside me and was my companion for the flight. I’d learned things didn’t always go as you hoped, that not every ending had a ‘happy ever after’.
I’d talked about it with Lizzy’s older brother the day before my flight and he chided me gently for my pessimism.
“Mom, it’s a routine procedure, they know what the problem is, they know how to fix it. Result!” Only I didn’t share his optimism and I didn’t know why.
Lizzy met me at the airport and it was wonderful to see her again. She looked healthy and happy, excited to have the procedure which would be the end of years of debilitating pain. She even joked at how healthy and radiant she looked, “It’s a real problem mom, how can anybody believe there’s anything wrong with me when I look this good!” Flicking her glossy ponytail over her shoulder, blue eyes twinkling and with that huge, heartbreakingly white smile, I couldn’t argue.
We arrived at the hospital at our allotted 7am time, waited, filled endless paperwork, waited, were taken to day surgery, waited – you get the picture.
The doctor came to talk with us both, ran through the procedure, expressed his optimism. It was clear he was excited to help a patient regain her life, move forward. I liked his attitude and directness. There seemed to be a genuine caring and love for his vocation.
Lizzy was wheeled off with me trotting alongside and taken into a room where we believed she was having a final x-ray and I was sent off to a waiting room. I didn’t see her again for four hours. Not being able to say goodbye and wish her luck rankled and increased anxiety levels, and I knew it was the same for her. I found out later she’d been on her own for an hour, with nurses milling around, focusing on the procedure to come, no one was with her. Not good for stress levels.
The procedure generally takes an hour. It seems the valves in Lizzy’s veins no longer work/have collapsed which allows the blood to flow into her pelvic area unchecked, leading to a ‘pooling’ in her pelvis causing engorged veins and pain (ovarian vein reflux). How has is happened that the valves have failed? There are ‘multi factoral causes’ or in laymen’s terms, no one has a clue. It’s happened gradually and can be genetic, hereditary or ‘fill in the gap’.
The intention was to enter the veins via her neck or groin, follow them to the pelvic area and insert coils where the valves should be and voilà. Lizzy would not be under a general anaesthetic, rather heavily sedated as you would be for a caesarean. Unfortunately Lizzy’s stress levels and the adrenaline pumping through her system were making it difficult to get her sufficiently sedated. Several times she felt the procedure, was entirely conscious and in pain, much to the distress of the doctor. She had four times more sedative than any other patient has required. Not bad for a petite 5′ 4” lightweight weighing only 110llbs.
Sitting in the waiting room, freezing in the air conditioning, the minutes ticked by. It was taking too long. A nurse updated me a couple of times, then after a couple a few hours said things were still ‘in process’ and I should go and eat. The cafeteria was large, with a mix of medical staff in scrubs and anxious looking visitors like me, waiting for news. Eating was the last thing I wanted to do, but found something manageable and a quiet corner to sit in. It was the first time I felt tears prickling my eyes.
I put it down to jet lag and frustration, but let’s face it, it was basic primal fear.
Back in the waiting room it was another half hour before I was fetched to see Lizzy, laying pale and defeated, wrapped in pale cream blankets on the gurney, tears pooling out of her eyes and making damp splodges on the blankets as they ran down her face. Nurses were quietly bustling about, clearing things away, the mood was sombre.
The doctor was ashen and exhausted and it was hard to focus on his words. It seems they’d tried accessing the veins by both neck and groin, unprecedented as it’s usually one or the other. They couldn’t reach the valves by either entry point, they were so twisted and tortuous it was impossible to follow them without causing damage. I saw the video and appreciate how hard they had tried, what a huge problem they faced. Again we heard the words, “There’s nothing we can do.”
“But she’s only 25,” I was embarrassed by the emotional hoarseness of my voice, the way it cracked, the way my face started to crumble. I felt the warmth of a hand on my arm, the nurse in charge, a huge black woman whose eyes reflected my pain and gave me strength.
The doctor and I talked. Lizzy had mentally checked out of the room, and taken herself to another place. We talked options. Very few. We talked other doctors, other cities, other countries. We agreed to a follow up consultation in a couple of days when everyone had had time to gather their thoughts. Looking into the doctor’s eyes I had no doubt he would do his best.
Lizzy went to a dark place, only to be expected after a traumatic surgery, too many drugs for a body her size and the worst possible outcome. But she’s a fighter too, even when she thinks she isn’t and believes she has nothing left.
We’ve had the consultation and there are positives. As the doctor said, “We have a diagnosis, we have a reason, and we know that something MUST be done, we just need to find the right person to help.”
He has spent three days talking with colleagues and looking at the problem ‘outside the box’ which has opened up other specialties who might help. He’s looking for a surgeon who has the skill set to operate on the veins from the outside through regular surgery. He thinks he’s found one, has discussed the case with her and she’s prepared to meet with us.
If that doesn’t work we try another route. We’re already looking at other doctors in other countries with the help of wonderful friends in the US and Europe and Lizzy’s step-sister, a doctor in the UK. We will get Lizzy through this, there is no other option.
Everyone experiences bad times in one way or another, it’s how life is. And even in the darkest moments there are small chinks of light and goodness which keep you going, keep you strong, give you hope. Those chinks are always the kindness and caring of others, sometimes from those close to us, sometimes from strangers. The warmth of the light, the faith shinning from it, keeps us going, feeds our soul.
It lets us know we are never alone, even in the darkest times.
Jane, I’ve been away and just read this post. It brings tears to my eyes. I am sorry that your daughter is going through such a difficult time. If only we could wave that magic wand and make it all better. You express your feelings beautifully and poignantly, which touches the heart.
I will hold you all in a ‘healing’ embrace.
Healing thoughts, love and light are coming your way. I’m sorry that your daughter is going through this but, you are a good advocate for your daughter. Be strong and know that you have the support of family and friends..
Like everyone else, my thoughts and prayers are with you, your daughter and your family. Sending you healing xx
Reading about this a second time doesn’t make it any easier; the tears still fall. Such a terrible, tough situation to be dealing with, both your daughter and you/your family. I admire your ability to be strong for her, advocate on her behalf and weave your way through uncharted territory, then get up the next morning and do it again. That’s what we do, because we must. I continue to keep you all in my prayers, sending positive thoughts across the miles.
Beautifully written, Jane; just so sorry to know that you have this going on. I hope and pray that the doctors will be able to figure something out.
I have nominated you for the Sunshine Award, today in my blog. Just receive it, disregard the steps that you have to do, and bask in the warmth of the sunshine. You and your family need a little brightness in your lives, right now.
Prayers for you and your daughter, and all those involved. ~
Thank You Carol, just goes to show how much kindness there is in the world! Thank you.
Jane,I am so sorry-I didn’t know that you were going through all of this.Martha sent this to me wondering if we were here to support you in Houston. I just sent this to Jenny Goodwin and Teresa Winkler. I sincerely hope there is something we can do for you-please,please just let me know. I am keeping you and Lizzy in my thoughts and prayers.
Dear Jane, What an emotionally draining time this is for your daughter, you and the rest of your family. You are such a kind, loving mom, and so proactive, it must be excruciatingly painful to have the patience this journey will require. Keep the faith. Be strong and continue to give your daughter lots of hugs and kisses. My thoughts and prayers are with you. Sharon
I’m amazed by the caring of others, thank you
I’m praying you find a safe and successful destination at the end of this heartbreaking journey.
Hi Jane, I wish I could be there for you, I feel so far away here. If you want to come over here for a rest you know you are welcome anytime. Rosemary
Damn it Jane, this isn’t supposed to be happening. Keep strong and hold the faith. If you need anything done here, please ask. Want me to deal with the IB bill for you? Focus on your daughter now.
Thanks Ellen, like I said it’s the kindness of people that keeps us strong, and I know how lucky I am.
Reaching for the tissues….