taking the mick

In the end, we were told FIVE times that if such-and-such improved, Dan would be released from the hospital “tomorrow.” But “tomorrow” finally came on June 15, when Dan was able to walk out of the hospital a free man, after 11 days of agony.

It was only then, the morning the doctor signed his discharge papers, that the doctor told us in his thick Russian accent just how close Dan had come to dying. I for one am glad I didn’t know… I went though enough emotional agony in my naiveté.

But now things were looking up. Dan’s kidneys were functioning around 15% and he probably wouldn’t need any more dialysis treatments.

Dan was elated to be home… everything was experienced with joy and appreciation, like a little kid in a candy shop, jangling coins in his pocket and on a total sugar high. We even went on a bike ride for 10 minutes, Dan pedaling ever so slowly I’m amazed he didn’t topple over.

However, our joyous day ended abruptly as we got ready for bed. Suddenly, Dan began to cough and cough, while having chest pain and shortness of breath. Of course, considering what we’d been through, I immediately thought the worst – he was experiencing pulmonary edema or congestive heart failure. It didn’t help that Dan describe the feeling as, “my lungs filling up with fluid.”

So despite our absolute devastation at the thought of returning the the hopsital less than 6 hours since Dan had been released, we headed to the Emergency Room.

Thankfully….. we had a short wait and it turned out to just be bronchitus. By 3 am we were back home and in our BED for the first time in over a week.

Dead tired.  Sleep was sublime.

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kidney krisis III

WEDNESDAY June 8th  – Dan was feeling a bit better Weds due to the dialysis and was even up for some visitors. This was especially good news because I had to leave my post by his bedside and return to work. On the one hand it was very hard returning to work, but it was also helpful to see the sights outside of the hospital and to not be 100% focused on the kidney craziness.

I spent a good chunk of time communicating w/Dan’s family in England and also my family here (both were supportive and superb), as well as sending out texts & Facebook updates to let people know what was going on.  It was beautiful to see so many people express their love and  prayers for Dan, but despite the “virtual friends” it was very isolating.  After 3 days of just me, Dan and a ever-changing stream of nurses and doctors, it was amazing to have flesh-and-blood visitors from Weds on.

After Dan started to receive dialysis he began to (finally!) show signs of improvement. He began producing more urine but his blood levels were still a disaster. All in all, Dan was more alert and awake and able to eat a little too (practically the first food he’d held down since last Friday). He still felt some nausea and a pain that he described as having a huge weight literally on his chest, but was less bloated since they removed excess fluids when they did dialysis.

THURSDAY JUNE 9 though WEDS JUNE 15 – Dan was improving and they moved him to another room, where he didn’t need a heart monitor. We even entertained hopes of still attending our dear friend Russ’ wedding in the Adirondacks that weekend…. but it was not to be.

When Dan improved after disalysis, it was hard to tell if his kidneys were beginning to function, or if the dialysis had just done the job his kidneys weren’t doing.  The main way to know if one’s kidneys are working is if his urine output matches his fluid intake, so we kept a constant tally of every milliliter Dan took in and put out.  Peeing was also important because if Dan started retaining fluids, the fluids could fill his lungs, causing pulmonary edema or congestive heart failure.

Thankfully, the doctor was optimistic enough to postpone the operation to have Dan receive an permanent-catheter that would be necessary if he needed to have continued dialysis treatment after being released from the hospital. The catheter currently in his neck couldn’t be used outside of the hospital due to high risk of infection.

And so the rollercoaster continued. Every day we asked the nurses, what the prognosis was:

“Will I need more dialysis?”

“When can I get out of  hospital?”

“How are my blood test results?”

And they would reply, “You have to ask the doctor.”

But the doctor was usually only available for 10 minutes a day – which 10 minutes was hard to say!  And you don’t even want to know how much money they charge for that 10 minutes! But, actually, despite the limited contact, our nephrologist was great.

Not knowing is the hardest part.

And the better Dan felt, the more restless he was to GET OUT OF THE HOSPITAL! And after “camping out” at the hospital with him for 10 days, I felt the exact same way.

kidney krisis II

MONDAY JUNE 6th –  The first few days and nights at the hospital were horrible. Dan was termendous pain and didn’t even have the energy to watch TV. When the doctor spoke of Dan’s situation he said, “He has severe severe dehydration and very very very acute renal failure.”  And despite all the IVs and meds and nurses and doctors, he was getting MUCH worse.  Dan was constantly receiving IVs that kept pumping him with liquids in hopes that eventually the fluid would break down the myoglobins blocking his kidneys… but it wasn’t working. Dan’s creatine levels continue to worsen, and he was becoming a human water balloon since for 3 days he didn’t urinate at ALL. Monday evening he peed for the first time and it looked like black coffee.

The nurses were monitoring Dan’s heart and Monday night Dan had to wear an oxygen mask but that made him feel claustrophobic and panicky.

I spent about 72 hours straight at the hospital.  My neck ached from sleeping on the hospital bed-cum-chair and it was hard to sleep with all the machines beeping and the nurses coming in every hour (but never when you needed them right away)!

TUESDAY JUNE 7th – Dan’s kidneys still were at 0 function. His body was filling up with toxins since his kidneys weren’t filtering them out and he still was barely urinating.  His body was literally poisoning itself. So, Tuesday morning, Dan went into surgery to have a tube inserted into his neck – a catheter that they would use to give him dialysis.  Hemodialysis dialysis is basically an artificial kidney. They connected Dan to this huge machine that looked like something from Back to the Future. Blood comes out of a tube from Dan’s neck and is then “cleaned” in this machine. The toxins (which would normally in one’s urine) are filtered out and discarded down the drain from a tube that comes out of the dialysis machine. And then “clean” blood is returned to his body through another tube.  However, like most mechanical substitutes for human organs, there’s risks involved with dialysis… such as hypertension and cardiac problems.
The scarriest part, however, was that the doctor said there was a 50/50 chance of Dan having to continue dialysis for weeks, months or even years.  I think we both tried to not even think about the possibility of Dan being on permanent dialysis, as this would mean a dramatic change to our lifestyle… trying to thru-hike based on dialysis centers? Never being away from civilization for more than 3 days?  No, our brains could not go there.
Thankfully, Dan felt better after his dialysis and they also removed 1 litre of fluids from him.