Monday, March 16, 2020

Update

Just a quick (and maybe final update) for people who have reached out (some on here and a lot offline) after my last blog post.

I had a follow up CT scan in February (after having the PET scan which identified a couple of concerning spots in my chest between my lungs).  Initially the cardio-thoracic surgeons wanted to wait a couple of months before having another scan. They wanted to see if whatever was showing up on the PET scan was or was not due to my pulmonary emboli in October.  The scan came back with no change unfortunately. If anything, what was there was getting bigger.

I had a consult again with the pulmonologist in Portland and she got me right into the surgeon's office again in Scarborough (on the same day). They reviewed my scans going back 5-7 years and could track the growths in and around my thymus area which were steadily getting larger. They suggested I needed to have a thymectomy and remove the entire gland and all the fatty tissue and growths that were happening. Then, they could biopsy them without the danger of spreading if it was cancerous.

I went in for surgery on 2/26. They used the 'davinci robot' method of going in the side of my chest with 3 smaller incisions (rather than cracking through my ribs in the middle of my chest which would have been a much more invasive surgery). They put in a camera and two arms of the robot and took everything out. There were 2 tumors in there. One was attached to the pericardium (membrane around my heart) and one was attaching to my diaphragm. They took the entire thing out (the thymus, which in my case never went away and got larger as I got older), all the fatty tissue, both notes that were of concern, and a small piece of my pericardium (which the surgeon promised me I 'wouldn't miss').

I spent the rest of Wednesday into Thursday afternoon in recovery at Maine Med. The worst part aside from the deep chest pain was the drainage tube that was hooked into my side and up into my chest. Pulling that out the next day was awful.

I had Kristin and my dad come and get me and drive me home. 90 minutes of bumpy roads made for an uncomfortable trip. I also couldn't cough or god forbid, sneeze without serious pain. Later in the afternoon (once home), I was sitting in a chair and started to get really sore. I was on heavy meds and it wasn't working any longer. The local was wearing off and I was starting to realize that no matter how I was sitting, laying, walking around, etc. I couldn't resolve any of the pain. The pain was intensifying and going straight through my chest and into my back. It started to remind me of the exact pain I was having when I had my blood clots in October. By about 9 or 10pm I could no longer stand it. The oxycodone was having no effect at all. I had Kristin round up the girls and we hit the ER again.

In the ER at Memorial, I had the doctor who initially triaged me in the ER back in October for my clots. They got me hooked up to some IV and I got a dose of medicine to calm it down just enough for me to be comfortable. They put me through another CT scan. This time, it showed some CO2 in my chest and lower abdomen. This was from when they were deflating/inflating my lungs to do the surgery. Typically that wears off by walking around, etc. in recovery. But because I didn't get a room and was left in the recovery area all night (hospital was full), I didn't get out of bed for about 13 hours. I was literally discharged without having had any of that CO2 worked off (or as much as would have been needed). At this point, another doctor came in and he was the one who was assigned to me when I was in the ICU in October. He got on the phone with the surgeon to talk about the situation. He was reluctant to have me stay in the hospital. He confirmed the presence of the CO2 but indicated that the surgeon wasn't really all that concerned about the amount that was still present and said it should wear off. He also confirmed from the new CT scan that I had no new clots (as I thought I might have had due to coming off the blood thinners for surgery). He basically told me that because they didn't have an 'expert' on staff to deal with me and what I just had for the surgery, that they didn't feel comfortable holding me for 'pain management'. He wanted to get rid of me so I was basically discharged and told to just take more pain meds and maybe use a heating pad. I was kind of surprised but I really had other course to take.  They did offer that they could 'transfer' me to Maine Med, back where I had the surgery.  That would have been a nice ambulance ride that my insurance company would have loved to see.  I opted out.

So we came back home about midnight. It's funny that the hospital doesn't have an 'expert' on staff that specializes in what I was going through...but neither does my house.  Last I checked, I don't have a doctor living with me. So they rather would have me go home, then help me any further with my pain in the hospital. I was a bit disappointed to say the least and by the time I got home, all I could do was sit and stare at the floor in a chair and try not to think about some of the worst pain I have ever had to sit through. The only pain that I've ever had that was worse was when I had the clots in the hospital.

By about 6am I started to feel better. I started taking extra meds and it started to work. The surgeon also called in some dilaudid for me which really helped. That stuff is pretty strong. By Monday (so 5 days after surgery) I was able to completely stop the pain medicine all together and haven't had to take any since.

I had a follow up with my doctor and the surgeon a couple weeks ago (a week after the surgery) and the surgeon told me (with a slight grin) that quote 'that second doctor in the ER wanted nothing to do with you'. Pretty disappointing because I swear I was one of the only ones in the ER when I was there and I have inside insight into the operations over there. The amount of people that go into the ER (in the pre-COVID-19 days) was not overwhelming by means. I would have been better off in the hospital than home, that's for sure. And all the documentation I took home indicated to go to the hospital if I was having complications. Full disclosure but I DID call the surgeon's office before going to the ER. They paged the surgeon and he called me to discuss. He suggested that if I felt ANY worse than I did when I was in recovery, then I needed to go to the ER. Since I felt 1000x worse, I followed his advice.  He was great to work with and I'm glad to have had the surgery with him and his team.  The doctors at Memorial were also great for the most part and that team over there literally saved my life in October (for which I'm forever grateful).  I was just a bit disappointed that they really didn't want anything to do with me literally hours after I got home from surgery at their sister hospital.  At the very least, I could have gotten enough of an IV to try to get some sleep.  They could have wheeled me into the hallway.  I wouldn't have cared.  There was no one there.   But instead, I had to sit at home in excruciating pain for another 6 hours.  The transfer over to Maine Med. was unrealistic.

My primary care doctor did tell me that in his 38 years of practice, he's never had someone get their entire thymus removed. So that made me feel special. The surgeon told me that they do about 40 per year at Maine Med.

The best news since then was that the biopsies came back negative. Everything was benign. But it's good that they removed them now, otherwise I would have been in trouble later. I kind of got lucky that they found this in the scans because it was completely unrelated to my clots.

So now I'm done, at least for the time being. I don't have another doctor's visit until the summer (at least for now).

Hopefully this is the last time I'll have to do any sort of updates like this. I appreciate everyone's concern and kind words that reached out either on here or text/email, etc.  Since I didn't close the loop on here, I figured I would do so and let everyone know who didn't already ask me about an update.

I hope everyone is doing well now and your families are all safe and sound in this rather strange time  we are now in.  I wouldn't want to be in the hospital now. I think the timing of all this was spot on for me.  By the time I went back in for the followups, the masks and sanitizers were in full effect.







1 comment:

  1. Jeez. That is more than rough. Puts a lot in perspective, especially with the pix of the beautiful family at the end of the post. I hope you are through these rough waters and are on the mend now.

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