I left off with us at home after a “successful” laparoscopic resection of an extra-adrenal tumor and adrenalectomy of the left adrenal gland. At the two week follow up post op visit, we learned our surgeon had left for a humanitarian mission is South America right after her surgery and had not yet returned. Lori was seen by the Nurse Practioner in the same office and was familiar to Lori’s case. When Lori brought up the post operative swelling she was experiencing, the NP wrote an RX for a water pill. When Lori asked for her preoperative weight she found that she had gained 38 pounds! Lori explained that she had noticed white fluid leaking from her 5 laparoscopic incisions if she happened to roll on that side while sleeping. The NP attempted to squeeze any fluid out but of course her body didn’t co-operate. Needless to say the situation did not get resolved and Lori came home dismayed and angry at the situation. We did have another follow up in a week however, for when the surgeon would be there to examine Lori. Meanwhile Lori’s legs and abdomen continued to expand. When one week had finally passed, Lori went to see the surgeon while I went to work. I got a text message from Lori indicating the surgeon was going to admit her since he did not know where or what caused the swelling. (At this point her weight had ballooned up 48 pounds from her pre-op weight.) I finished my shift at work and proceeded to successfully avoid getting a ticket while driving 70+ miles to downtown Cleveland where Lori had been admitted. When I first saw Lori in the hospital room I could tell she had had a rough afternoon. She now had 2 drains on the left side of her abdomen. We don’t know how much actual fluid came out when the drains were inserted because of the large volume of fluid that literally burst from her and ended up on the floor. What I do know is for the first week of her 21 day stay she was averaging 1800 mL of fluid from the two drains every 12 hrs. That works out to almost a gallon of fluid every 24 hr period. Once the lab had analyzed the fluid, it was determined to be chyle. Chyle is the substance produced in your lymph nodes. Lori was then given Sandostaten as a way to decrease her chyle production so they could locate where she had developed a leak. After about a week of this, the drainage totals dropped to about a half gallon every 24 hrs and another CT scan was ordered to see how the swelling had decreased and see if the drains were still positioned in the largest pockets of fluid. It was after this scan that we found out Lori’s tumor had re-grown on her left adrenal gland and she had another one previously undetected, right behind her heart. (A pheo outside of the adrenal area is known as a paragalinoma). It was at this point that Lori began to notice her face, arms and hands becoming itchy and swollen. She had developed an allergic reaction to the Sandostatin and its use had to be discontinued. To help decrease the production of chyle, Lori was placed on a NO food NO water diet. It was at this point Lori asked why the surgeons couldn’t just open her up remove the fluid and the tumors in one shot. Lori was told that she had not recovered enough to have open abdominal surgery. All her nutrition was being delivered via PIC line and she hated every minute of it. I called her on my lunch hr every day dreading what I would find out new that day. At one point I remember her telling me “I think they are trying to kill me, come and take me home.” It took all of my self control not to break down, finish my shift, and drive up to see her as I did every day after I had stopped at home to take care of all the animals we have. I had cut my work schedule down from 60 hrs a week to a regular 40 since I had used up almost all of my allotted time off during the first surgery. My employer was great about everything then; and has been now also, since I may need time off with very little notice. My co-workers have also been greatly supportive of the whole ordeal. My extended family also has been supportive of us through thoughts and prayers. I know I felt the support coming from Columbus Ohio when one of my cousins got married. I missed getting to see everyone but life goes on…. The hospital wanted to keep Lori until she was strong enough to have open abdominal/ chest surgery to remove the two newest tumors. They could not however provide a firm date as to when that would be. But after the second week, Lori was getting stronger in her resolve to go home and manage the drains and PIC line from home. Her surgical team agreed to release her once her drains combined total was less than 800 mL per 24 hrs. Somewhere in this timeframe we got the pathology results back from the surgery in July. The lymph node that had been removed came back as being metastatic, while the tumor attached to her adrenal gland and renal artery was well encapsulated and benign. Finally after 21 days Lori came home. Even though she was sore and in a weakened state she did visit her horses by the gate as soon as she got out of the car. Just seeing them and hearing Rosie and Rock give a welcome home whinny when they saw her, put a sparkle back in her eye. The PIC line and one of the drains came out a few weeks after coming home, when it became apparent that Lori would not be headed back to surgery right away. Her second major surgery was scheduled for October 6, 2012 once her drain output fell below 300 mL per 24 hours. Lori with her sense of humor wrote on her belly with a permanent marker that instructed the surgeons to ensure she had no more leaks prior to being closed up. I however was not laughing since I had learned even more than I ever wanted to know about metastatic pheos. Surgical removal is always the choice way to remove pheos, but since they are so hard to locate in the first place once they become metastatic they can be found just about anywhere. I had also learned that with recurrent pheos each time they come back, they become more aggressive and in larger numbers. Also, even though I had faith she was being properly alpha and beta blocked, I knew there was a sizeable risk she could still end up in hypertensive crisis while in the OR. I still had to do the waiting game all over again and hated every minute of it because I knew more than I did just a few months before. The surgeon came out after 6 hrs and proceeded to tell me they had fed Lori a whole quart of heavy cream trying to increase her chyle production while searching for leaks of her lymphatic production. After waiting an extra 45 minutes with her open once the tumors had been removed they closed her up since they could not find any leaking lymph nodes. He also told me both tumors were approximately the size of a marble. He did indicate they had called in a vascular specialist when they saw how close the tumor behind her heart was to the major arteries there. Again we would wait for pathology on both counts I was then told I could see her in about an hour or so. After waiting 2.5 hrs I began to ask questions again just like before. The recovery room nurse told me she was sorry no one had informed why I couldn't see her earlier, but they were concerned with her BP levels and pulse rate being too high still and did not want to release her to her normal room just yet. I took a look at her monitor and her BP was something like 150 over 90 with a pulse of 97-100. While that is considered high, that is what Lori's vitals had been over the past month as we struggled to get her BP under control. The recovery room nurse was wanting to wait until they reached the baseline levels they had on her chart taken during pre-op. (a normal 120 over 80). I explained to the nurse that Lori had taken all four of her BP meds at once right before we left the house about 2 hrs before the pre-op measurement was taken. I also explained that Lori did not normally take all four BP meds at once since it made her feel lethargic and all doped up. She usually staggered them throughout the day. I also indicated since we had been tracking her BP, that was where she usually was prior to going on the dibenzyline. I waited by Lori's bed while the recovery nurse called someone else that had been watching Lori earlier, since she had just started her shift and wanted a report. I overheard the words “yeah I had to look it up too” and an alarm bell rang briefly in my head but I dismissed it knowing that a pheochromocytoma is very rare (about 800 diagnosed per yr world wide and 50% of those are found via autopsy). Me being the talker I am, I asked the nurse what she knew about pheochromocytoma and she confirmed she had to look it up but was glad Lori had hers found and removed. I repeated my earlier statements about Lori's BP medication and was told where she would be released to so I could go wait there. I was glad the surgeons resisted Lori’s requests back in July to go get the newest batch of tumors once I saw her out of ICU. She looked terrible. Major surgery like that definitely takes a toll on the body in so many ways. Anything termed minimally invasive has to be the first option. Well that’s all for now since Lori and I are hungry again after completing today’s round of tests…
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