Tuesday, 3 November 2015

Day 5 of hospital stay.

The last two days have been pretty busy. I'll go through each team that I now have following me as it makes everything a bit easier to understand.

CT Scan: It showed some spots on my lower lungs that may be the CMV infection or something new. As a result, I had an abdominal ultrasound yesterday morning as further investigation. That showed spots on my lower lobes, liver, and spleen.

Infectious Diseases and CF team: My lungs are still infected with the aspergillus along with a few other bacteria. After the bronchoscopy on Friday, they determined that it's actually two strands so are adjusting my medication accordingly. The problem is that a lot of my medication reacts with each other so the pharmacists have been busy looking up drug interactions and side-effects.

My CMV infection is responding well to the medication which is excellent news. However, the medication that's treating it be lowering my white count as that has turned extremely low.

My lung function has not really improved at all but it's also not dropping.

GI team: They were called in to see if my low hemoglobin was being caused by a GI bleed. After investigation, they determined that it was not. They said that a colonoscopy would be pointless, yay!

Hematology team: They want to figure out for sure what is causing both the spotting on my liver/spleen and what is crashing out my white count. The theory about the spotting on my liver/spleen is because my recent bloodwork shows that I have an infection called Epstein Barr virus, EBV (otherwise known as the mono virus).

This does not mean that I have mono (they did put a request in for the testing but don't actually think I have it), it only means I have the virus which could lead to mono. It could also lead to something called Post Transplant Lymphoproliferative disorder. They mentioned this was a possibility pre-transplant as I was EBV negative and I could get lungs that were EBV positive (as most of the population has the EBV virus). Long time readers may remember that post. It's here if you want to review. I was very glib about it at the time. Apparently, I should've taken it more seriously as now I've ended up with lungs that were EBV+ and it's developed into a virus.

Naturally, they want to biopsy the liver to confirm what is growing. The liver is the easier option of the three spots with nodules so they'll start there. That may take until next week to get booked.

As for my crashed out white blood count, they theorize it's because of all the various medication I've been on. However, they want to rule out 'other options' - as the resident said. I told him it was okay to say the word 'cancer' to which he responded 'yeah, basically.' They plan on doing a bone marrow biopsy in the next few days to figure that out. They're also starting me on some 'white count booster' needle to help bring my numbers up.

They're also stopping my blood thinner as they say that it's pointless for me to be on it as my risk of clotting is less than my risk of bleeding everywhere. 

Gynecologist: They theorize that one of the main reasons for my low hemoglobin - which has dropped again after the transfusion - is because I've been having my period more and heavier than normal. That's being blamed mostly from being on blood thinners so they want me on birth control to try and normalize it a little bit. However, they need to rule out other options for my frequent periods like cysts so I'll be getting a uterine ultrasound over the next few days.

General: I also got a PICC line in today so they can thankfully stop stabbing me so often for IVs and blood work. I also received a bolus of iron tonight to help my numbers up a bit. My appetite is up slightly today so that's positive.

All and all, there has been a lot of information thrown at me over the last two days. It's been exhausting. I'm happy that they are investigating why I've felt so poorly over the past month and seem to be consulting with all the right people. Nothing that can be ultrasounded is going unultrasounded. No blood levels that can be checked are going unchecked. No parts that can be probed are going unprobed. They'll get to the bottom of this, whatever it is. As for now, I'm going to zone out with some mindless reading and try to forget about all the 'what-ifs' the last two days have brought me.


Sue said...

wow ... lots of "teams " working for you Allison! thanks for the update... sorry to hear you're going through all this but it's good to know they are working hard at tracking all this stuff down...hugs.

christina mccully said...

Allison you are a strong young lady and I am glad they are looking after you and doing alot of tests to figure things out. I am thinking of you and praying daily Christina

helen soucoup said...

Wow! I sure hope you have some seriously mind numbing reading to zone out from all that. Sending lots of lovexoxoxoxoxoxxoxo