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.

Lupron Miseries

I ended up taking two doses of the prescribed Lupron. 10 units on the 24th and 10 units on the 25th. After having miserable side effects from both doses, one of the doctors from the clinic got back to me and gave me the okay to stop. This was a different doctor whom I hadn't met, since Dr. D was unavailable, and while he told me to stop he was very blasé about the Lupron and didn't buy that it caused my side effects. I was less than impressed.

Where the symptoms from the first dose dissipated after about 21 hours, the worst symptoms from the second dose have remained. I still have chest pain beneath my breast bone that extends into my very sore upper back and sharp pain when I take a deep breath. Most of the time it's bearable during the day but at night it gets downright awful, like call an ambulance awful. I have occasional pain in my knees and some cramps but they pale in comparison to the chest pain. Acupuncture didn't help so I decided it was time to consult another doctor.

My first thoughts were the usual suspects - pancreatitis, gallstones, appendicitis, an ulcer? I knew it wasn't cardiac or lung pain but wasn't sure aside from that. After yet another god awful night of misery where I woke up at 4am in pain, I had E drop me off at Urgent Care on his way to work. I was expecting something like the emergency room but it's actually just like a regular, same day appointment now. I checked in, was called in by the nurse and saw the doctor maybe 5-10 minutes later.

Despite my best efforts to keep things straight, we did run into some of the internal medicine doctor vs reproductive endocrinologist issues. IM doctors are just not familiar with IVF and we went round and round in circles as I tried to explain the history and risks. He listened to my lungs (clear), prodded my belly (a little tender) and sent me down to the lab to have blood drawn. Thirty minutes after that we had the results showing that my pancreas, liver and kidneys were functioning perfectly. Strangely, my white blood cell count came back higher than it should be and higher than we'd expect given that I have no fever or signs of infection otherwise. We do not want elevated WBCs going into a transfer.

Ultimately, with no explanation for the high white count or sign of issues with my organs, the doctor decided that the Lupron has ripped up my stomach and given me reflux. He chalked the white count up to the steroids I had taken with both cycles,  dismissed infection and prescribed me prescription strength Pepcid.

I'm really hoping that this does the trick because I'm so tired of being in pain. I'm also pretty sure that we're going to have to cancel this transfer, I just don't think we can risk one of our precious embryos when my white count is off the chart. We're already out 1000 in pre-cycle testing we can't get back but I just can't imagine risking our baby because I'm impatient.