Curveball!
Well, I will be having surgery on Monday...but it won't be to remove my gallbladder. As it turns out, the past few days haven't been as uneventful as I had hoped. Things began to go back downhill last Saturday morning when I had another pancreas and gallbladder 'attack', followed by another big bleed (hemoptysis) from my lungs on Sunday night. The bleed prompted a change of plans and landed me in Boston today to see both my clot and CF docs. Things are about to get a little technical, so bear with me: My CF doc feels strongly that the antibiotics have done their job and gotten my lungs as healthy as possible at this point. She said that the next step would be to either decrease my anticoagulation (blood thinners) or consider another pulmonary embolization (surgery to manually stop the lungs from bleeding.)
So bright and early this morning, my visiting nurse came to draw blood and then it was off to the hospital for an ultrasound of my blood clots to assess the situation. [I should note that each time I have a big bleed my CF doc has me skip a dose of my blood thinner injection, so I skipped last night's dose.] Based on the ultrasound, my clot doc said that she could see that new clot has already formed in the absence of the blood thinner and that there is still 'old clot' present, so discontinuing the blood thinner is not an option. She also ran some additional blood work to help piece together this puzzle that is known as my body.
After a productive appointment with my clot doc, it was onto see the CF team to figure out the next step. Once again, they had me skip PFTs since my lungs are still bleeding slightly. We talked at length about everything and they also spoke directly with my clot doctor. All three of us agree that the blood thinners are not the cause of the bleeding, rather a necessity. That being said, depending on one of my blood tests it might be helpful to temporarily decrease the dose until the bleeding is under control. By the end of the appointment, my CF doctor had made her case that she does not feel that it is safe to move forward with the gallbladder surgery until I have another embolization to stop the bleeding. Much to my surprise, I agree with her. And since the antibiotics have held up their end of the bargain and having an IV line in place is promoting more clotting, they had my line pulled.
Is the thought of another embolization petrifying after the complications I had with the last one? Abso-freakin-lutely! But in the midst of my busy day I managed to squeeze in an 'AHA' moment: During the hour-long wait for my ultrasound, I decided to look back at my symptom calendar and tally up the number of days my lungs have bled this year, and as it turns out, it's been happening a lot more than any of us realized - a few times every month! [Side note: the problem with blood in the lungs is that it creates a feeding frenzie for harmful bacteria to multiply and cause more damage, which is why I feel so awful after a big bleed.] In other words, all of this subtle bleeding could very well be a HUGE part of why I've had such a hard time staying healthy and keeping my numbers up. As much as I don't want to go through another embolization, if it is successful at stopping the bleeding I may have a shot at some normalcy and feeling like my ole' self again. I also am not surprised because my last embolization was left incomplete and I've been lucky that it got me this far.
So Monday I will brace myself for my surgery before the surgery. Two things I have going for me is that my favorite Interventional Radiologist will be doing the procedure (he's performed my last two and knows my anatomy very well) and that I'm a lot healthier now than I was for the last one. If this surgery is successful and I can go one full week without any bleeding, then I will be able to go ahead and reschedule my gallbladder surgery. I didn't see this coming, but it does make a lot of sense and the last thing I want is to go into the gallbladder surgery with any more risks than I have to. Trying to think positive thoughts...
So bright and early this morning, my visiting nurse came to draw blood and then it was off to the hospital for an ultrasound of my blood clots to assess the situation. [I should note that each time I have a big bleed my CF doc has me skip a dose of my blood thinner injection, so I skipped last night's dose.] Based on the ultrasound, my clot doc said that she could see that new clot has already formed in the absence of the blood thinner and that there is still 'old clot' present, so discontinuing the blood thinner is not an option. She also ran some additional blood work to help piece together this puzzle that is known as my body.
After a productive appointment with my clot doc, it was onto see the CF team to figure out the next step. Once again, they had me skip PFTs since my lungs are still bleeding slightly. We talked at length about everything and they also spoke directly with my clot doctor. All three of us agree that the blood thinners are not the cause of the bleeding, rather a necessity. That being said, depending on one of my blood tests it might be helpful to temporarily decrease the dose until the bleeding is under control. By the end of the appointment, my CF doctor had made her case that she does not feel that it is safe to move forward with the gallbladder surgery until I have another embolization to stop the bleeding. Much to my surprise, I agree with her. And since the antibiotics have held up their end of the bargain and having an IV line in place is promoting more clotting, they had my line pulled.
Is the thought of another embolization petrifying after the complications I had with the last one? Abso-freakin-lutely! But in the midst of my busy day I managed to squeeze in an 'AHA' moment: During the hour-long wait for my ultrasound, I decided to look back at my symptom calendar and tally up the number of days my lungs have bled this year, and as it turns out, it's been happening a lot more than any of us realized - a few times every month! [Side note: the problem with blood in the lungs is that it creates a feeding frenzie for harmful bacteria to multiply and cause more damage, which is why I feel so awful after a big bleed.] In other words, all of this subtle bleeding could very well be a HUGE part of why I've had such a hard time staying healthy and keeping my numbers up. As much as I don't want to go through another embolization, if it is successful at stopping the bleeding I may have a shot at some normalcy and feeling like my ole' self again. I also am not surprised because my last embolization was left incomplete and I've been lucky that it got me this far.
So Monday I will brace myself for my surgery before the surgery. Two things I have going for me is that my favorite Interventional Radiologist will be doing the procedure (he's performed my last two and knows my anatomy very well) and that I'm a lot healthier now than I was for the last one. If this surgery is successful and I can go one full week without any bleeding, then I will be able to go ahead and reschedule my gallbladder surgery. I didn't see this coming, but it does make a lot of sense and the last thing I want is to go into the gallbladder surgery with any more risks than I have to. Trying to think positive thoughts...
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Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful.
— Buddha