ER Miseries

After flunking all my liver tests on the 13th, my second doctor called me up and insisted I go to the ER Wednesday since it was the only way to get an "urgent ultrasound". She wasn't sure if this was the beginning of a bigger liver problem or the resolution of my existing problems and felt that given the dark pee and itching, things needed to be evaluated asap.

I went in, told the doctor exactly what she asked me to say and sat down to wait. And wait. And waaaaaaait. And wait. It took about 5 hours for the first doctor, the triage doctor, to actually see me. Urgent my ass. After explaining everything again,  the triage ER doc gave me an IV of Benadryl for the itching and drew maybe 10 or 11 vials of blood. I asked for some lidocaine before they put the IV in but was told they don't do that, and to make things more fun, they prefer their IVs in the inner forearm where the tube leaves a nasty, painful bruise. Then, you guessed it, back to waiting. And waiting. And listening to the other people waiting complain about waiting.  I'm sensing the theme here.

Another hour later, there was an opening in ultrasound and off we went. They insisted on wheeling me there, probably not a bad idea since the Benadryl made me feel so loopy and lightheaded. The ultrasound tech was super thorough, he actually pushed crazy hard with the wand and I was sure I'd have bruised ribs, but better to be a little sore with a a good picture. Then it was back to the ER triage waiting room. To wait. Again.

I was hoping they were just waiting on someone to read my ultrasound before I could leave but the ER nurse said they had to admit me. So more waiting, more listening to this lady I'm fairly sure was just looking for pills complain, and another hour later, they finally had a bed for me! Huzzah!  I went in, put on my gown, and just a little bit later the official ER doctor came in to see me.  I explained everything again for the third time and just for fun, the ER doctor had them draw another 10 vials of blood. I was less than impressed since I already had two holes in my arms but she wanted to run the hepatitis tests for a third time.  She then looked at my ultrasound and since she couldn't see anything but my swollen liver, spleen and lymph nodes, she insisted it must have been an invisible gallstone that you somehow couldn't see in an ultrasound, CT scan or labs. I was less than impressed, my primary card doctor, second doctor and two specialists had already ruled out gallstones. I asked her how a gallstone could be possible, if the pain occurs when a stone is stuck and my pain continued several days after I had both the ultrasound and CT, wouldn't a stone be visible? Shouldn't I have other markers like high cholesterol or a high fat diet? She gave me more BS about an invisible stone and advised me to lose some weight. I wanted to hit her. She may have sensed this because she ordered an MRI "just in case".

Thursday morning, my primary care doctor calls me up after reading the ER report and essentially reams the ER doctor, dismissing gallstones which they've already ruled out because "there has never been any hint of gallstones or a problem with your gallbladder on either of your two ultrasounds, CT scan or labs". She is upset they won't schedule the PET scan sooner (they only do it once a week, it's not a popular test) and thinks I should have another super exciting ultrasound with a tube down my throat so they can ultrasound from the inside.  Unfortunately, she wasn't a fan of the liver supplements I'd just purchased and also dismissed my acupuncture herbs as "herbal crap".  My acupuncturist has me doing just the treatments themselves and after all of this, says I'm likely done with herbs for good.

I went for the MRI the ER doctor ordered Friday morning even though my primary care doctor said it was unlikely to show anything. I'm still itching like a crazy person and peeing orange but some of my liver enzyme tests came down a little so I'm choosing to see those as positives even if some of the other liver levels went up. All of my other labs are perfect, it's the strangest thing seeing my liver throw a fit as if in a vacuum.

Liver Limbo

When we left off, I was waiting for a call back from the single person who scheduled and performs CT guided needle biopsies. I left my information on Monday and when he hadn't called me back by Thursday, I was started to get a bit annoyed. I then got a cryptic message from my doctor's assistant telling me that she had a message for me. I know there are strict regulations on how to deliver medical information but really, a message to say I have a message? I finally got through to them and was told that my doctor had changed her mind and I would be going for a PET scan instead of a biopsy. Another nuclear test yes, but at least this one didn't involve a huge needle so I wasn't about to complain.

I scheduled my PET for the next available appointment, January 22nd and prepared to wait. The chest pain was gone, and aside from the fatigue, pain when I yawn, and cold symptoms I felt much better - no more crippling pain in the middle of the night. It seemed like I was on the mend until I started having weird, fairly mild stomach aches. I powered through them and figured it was just my body being a pain in the ass until I started to notice some weirdly dark pee. It's a TMI subject but I usually pee clear, so it was a noticeable change when it started getting more and more yellow until this morning when I woke up to nearly orange pee. I also woke up itchy, like I have a bad case of winter skin, especially in my hands and feet. I emailed the doctor who has been most helpful thus far and she told me to take myself post haste to the lab to repeat my blood work. Ugh.

Still thinking it was probably winter skin and my stomach being weird, I finished up my plans for the day and dropped into the Kaiser lab around 5pm. It was pretty busy so I listened to my Harry Potter audiobook while I waited and after a 30 minute wait finally got called in to give blood. I can still only draw from one good vein and after all the IVF tests and lab work I've had done, I swear this vein is going to give up and refuse to give any more blood.

I finished up, headed home, and maybe an hour later my test results came back. They were not favorable. My liver tests were perfect on 12/28 when I first went in to urgent care with the horrible pain, but somehow in the past two weeks they've exploded.

AST:  19 on 12/28, now 249 on 1/13
ALT:   27 on 12/28, now 435 on 1/13
Bilirubin:  0.4, normal is less than 0.2
Alkaline Phosphatase:  50 on 12/28 now 275 on 1/13 

Of course my white count panel, my kidneys and everything else came back perfect, so no signs of infection.  It looks like the lab test results finally caught up to the visible swelling on my CT scan and my liver is angry.  Since my labs were done after hours, I have to wait until tomorrow for the doctor to respond to my email and in the meantime, I'm still itching all over like a crazy person. I still think this is the Lupron but regardless of what it is, my body is not a happy camper. 

FET Cancelled and Lupron Allergies

So sorry for the long silence everyone. As you already know, I got pretty damn sick 2-3 hours after starting Lupron for my FET and the doctors are still not quite sure what it is. I only took two doses of the Lupron,  my first dose Christmas Eve and the second on Christmas Day because I couldn't get ahold my doctor or any of the nurses. Although the symptoms went away about 21 hours after the first dose, they did Not go away after the second.  Chest pain, upper back pain, pain under my right ribs, pain when taking a deep breath. It got Awful at night and I was waking up in agony that lasted at least up to an hour. I have a barely elevated temp around 99.5, fast heart beat from the pain but my usual lowish blood pressure. I also had a mixture of chills that made my teeth chatter and my body shake at night (while wearing socks, sweat pants, a long sleeved shirt, a sweat shirt, a hat and a heating pad in Bed!) and sweats that soaked through my leggings during the day. The most debilitating is probably the exhaustion, which is either it's own symptom or a result of all of the above.

After another night clutching my chest in misery, I went to urgent care. The first doctor there ran my labs but everything came back perfect, though my white count was on the high end of normal. He decided it must be Reflux from the Lupron upsetting my stomach and since there was no one to read an ultrasound over the holiday, he sent me home. Cue another night of agony that the Pepcid didn't touch. The next day, I made a same day appointment with a different doctor who turned out to be absolutely wonderful. I demanded an ultrasound, thinking it must be gallstones from all the estrogen, a common side effect of IVF.  But that ultrasound threw a major curve ball. A perfect, stone free gallbladder sitting pretty by my liver which was covered in "masses". This is where we called Dr. D and officially cancelled our FET. There was just no way we could transfer a precious embryo while my body was imploding and they wanted repeated, radioactive tests not safe for pregnancy.

Looking for logical answers, we thought the masses must be (hopefully benign) tumors or cysts from birth control. They pop up in probably 1/1000 women and given our terrible odds with everything else, I figured it made sense for me to be in that small percentage. Awesome doctor number two ordered a CT with contrast to confirm liver tumors STAT. I was awake and getting over a fit of chills and pain when the scheduler called at 7:30 the next morning so I requested they bring me in immediately. It took a little back and forthing, but they squeezed me in at 9am. A 1 hour wait guzzling water, an IV and a 5 minute test later I was done. However, instead of answering questions and clarifying things, the CT showed that the "masses" weren't tumors but swelling in my liver, along with swelling in my spleen, swollen lymph nodes and scarring plus tiny pleural effusions on the bottom lobes of my lungs. Not fun, but an obvious explanation for the miserable pain.

Up next was supposed to be another test to confirm I don't have a blood clot in my lung, but once the liver specialist looked at my CT, he decided he wanted a biopsy of the biggest lymph node instead. This was on Monday and I'm still waiting to hear back from the one person who performs CT guided biopsies, clearly he must have a busy schedule. At this point, most of the chest pain is gone unless I yawn or breathe very deeply so I'm not sure I'll even have a swollen lymph node left for them to biopsy.  The liver swelling must be going down on it's own and with each day I'm more and more convinced it's some sort of allergic reaction to the Lupron.

My RE was probably the most honest and said that sometimes things like this happen, they go away, and you never get answers or find out what caused them. He does think the sweats and chills at least were definitely caused by the Lupron.  Since we cancelled the FET, I started taking Advil which managed the pain really well and I'm down to almost nothing now. Of course I managed to catch a virus from sitting in all the Kaiser waiting rooms, but there's nothing I can do besides wait out a cold. Whether they fit me in for the biopsy or not, I just want to move past this and get well so we can finally transfer our embryo.