Going In Circles
Half a dozen doctors appointments and two more "acute" pancreatic attacks later and I'm not far from where I left off. Each pancreatic attack is more intense than the one before (despite days without eating any solid food) and no one has been able to figure out exactly why. The irony of this whole thing is that my pancreas looked normal on my CT scan and my enzyme levels (that would indicate acute pancreatitis) are the lowest they've ever been. This has everyone quite perplexed. Since I've had so many appointments within one week, it would probably be easiest if I break it down by specialist. And if by the end of the list your head is spinning, don't worry, I felt the same way living it.
Sinus Doc: Everything looks good; more inflamed than my last appt. but not enough to warrant change.
Rheumatologist: While she agrees with all of my other doctors that my #1 enemy is inflammation, she does not believe it is autoimmune. She recommended I take a baby aspirin daily, Flexeril (a muscle relaxer) every night, and eventually try structured gentle yoga.
Clot Doc: She agreed with the baby aspirin idea and sent me for another ultrasound of my left clot since the pain has not improved at all and there is still visible swelling. Based solely on my own interpretation the U/S showed that while the clot is still there, it has improved in some areas. Although the U/S tech cannot legally confirm my hypothesis, I could tell by her reaction that I was right. As far as the gallbladder surgery is concerned, she said that I would be okay to skip my blood thinner the night before the surgery, but should resume as soon as possible. She also ran a blood test the check the heparin concentration in my blood.
Gallbladder Surgeon: This was our first consultation and my initial reaction was that I liked him and trust his judgement. He walked in having done his homework on me and right out of the gate said that while this surgery is pretty basic, his two major concerns are my lungs and blood clots. He is deferring to my CF doc to decide whether or not my lungs are healthy enough to move forward with the surgery and agreed with my clot doc about my blood thinner. Here's the kicker: there is a chance that removing my gallbladder will help my pancreas, but it is in no way guaranteed.
CF Doc: This is where is gets really complicated. The surgery poses two major risks to my lungs: anesthesia/intubation and the decreased ability to cough post-surgery due to abdominal pain. Both factors are bad news for lung health and therefore they want all CF patients as healthy as possible prior to any surgery. That being said, my lung function was down 12% from my April visit (not horrible, but not great) so my doc started me on two antibiotics: Cipro and Cayston. If I needed emergency surgery today my lungs would be healthy enough, but not optimal. The plan is that I will go back to her in one week to decide if I need IV antibiotics prior to surgery, which would mean another tunnel line through my jugular. Just in case I do, I will need to schedule the surgery a minimum of two weeks from now.
The bottom line is that the surgery is not set in stone, but is most likely going to happen. The only hesitation is the possibility that I could undergo the surgery and still have the same pancreatic pain. I am meeting with my GI doc next week to try and figure out what exactly is going on with my pancreas. My gut (pun intended) tells me that the pancreatic pain is related to my gallbladder issues, though I have no idea how. If I could, I would love to get this surgery over with tomorrow and be done with all of this pain, but I understand the risks involved and learned the hard way that surgery without tip-top lung health can really set me back. In the meantime, since fasting and watching my fat intake hasn't helped at all, I am now taking a different approach and eating whatever the heck I want. Stay tuned.
Sinus Doc: Everything looks good; more inflamed than my last appt. but not enough to warrant change.
Rheumatologist: While she agrees with all of my other doctors that my #1 enemy is inflammation, she does not believe it is autoimmune. She recommended I take a baby aspirin daily, Flexeril (a muscle relaxer) every night, and eventually try structured gentle yoga.
Clot Doc: She agreed with the baby aspirin idea and sent me for another ultrasound of my left clot since the pain has not improved at all and there is still visible swelling. Based solely on my own interpretation the U/S showed that while the clot is still there, it has improved in some areas. Although the U/S tech cannot legally confirm my hypothesis, I could tell by her reaction that I was right. As far as the gallbladder surgery is concerned, she said that I would be okay to skip my blood thinner the night before the surgery, but should resume as soon as possible. She also ran a blood test the check the heparin concentration in my blood.
Gallbladder Surgeon: This was our first consultation and my initial reaction was that I liked him and trust his judgement. He walked in having done his homework on me and right out of the gate said that while this surgery is pretty basic, his two major concerns are my lungs and blood clots. He is deferring to my CF doc to decide whether or not my lungs are healthy enough to move forward with the surgery and agreed with my clot doc about my blood thinner. Here's the kicker: there is a chance that removing my gallbladder will help my pancreas, but it is in no way guaranteed.
CF Doc: This is where is gets really complicated. The surgery poses two major risks to my lungs: anesthesia/intubation and the decreased ability to cough post-surgery due to abdominal pain. Both factors are bad news for lung health and therefore they want all CF patients as healthy as possible prior to any surgery. That being said, my lung function was down 12% from my April visit (not horrible, but not great) so my doc started me on two antibiotics: Cipro and Cayston. If I needed emergency surgery today my lungs would be healthy enough, but not optimal. The plan is that I will go back to her in one week to decide if I need IV antibiotics prior to surgery, which would mean another tunnel line through my jugular. Just in case I do, I will need to schedule the surgery a minimum of two weeks from now.
The bottom line is that the surgery is not set in stone, but is most likely going to happen. The only hesitation is the possibility that I could undergo the surgery and still have the same pancreatic pain. I am meeting with my GI doc next week to try and figure out what exactly is going on with my pancreas. My gut (pun intended) tells me that the pancreatic pain is related to my gallbladder issues, though I have no idea how. If I could, I would love to get this surgery over with tomorrow and be done with all of this pain, but I understand the risks involved and learned the hard way that surgery without tip-top lung health can really set me back. In the meantime, since fasting and watching my fat intake hasn't helped at all, I am now taking a different approach and eating whatever the heck I want. Stay tuned.
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