Posted 8/29/2015 10:38 AM (GMT -8)
Hi all!
Thanks so much for caring about me and asking how I was doing. Sorry I've been MIA for so long. I've been dealing with a lot of stuff lately and I was afraid I might say the wrong thing.
To cover everything that's happening would make this a VERY long post. So, I'll make it as short as possible and if you have questions I'll answer them.
Not sure if you all know but I've got a blood clot in my SVC (Superior Vena Cava) it's been there almost 4 years now. Yes, I've been on blood thinners this whole time. Not only do I have the clot but the SVC is narrowed. 4 months ago I met with the Vascular surgeon to see if anything could be done. I'm turning purple in the face and my usage of oxygen has increased greatly. At that time he said there was "NO WAY" they would risk the surgery on me. However, he'd present my case to his fellow surgeons and let me know what they decide.
Well, I saw him 4 weeks ago or so, and I'm not sure what they saw on my scans, but he's willing to take the risk if I am. So, I have decided to go ahead with this surgery and they will attempt to remove the blood clot and then put in a stent into my SVC. They really want my port out of my arm and back into my chest.
My surgeon explained to me that I stood a chance of dying on the table right out the shoot. He said that the 2 biggest challenges would be when he first tries to remove the clot. If he bumps the clot out of my SVC, it will most likely go directly into my lung, or it could go into my heart. The other possible problem could be when they place my stent into my SVC. Apparently, my SVC is VERY close to the atrium of my heart. When placing the stent it could puncture the SVC and go into my heart.
With either situation, I would need immediate intervention, so my Vascular surgeon plans on having the Cardio Thoracic surgeons in the OR with them. If either problem should happen the Cardio guys will take over and crack open my chest and either go into my lung and get the clot, or repair my heart if it's punctured. They would also go in and open the heart if the clot goes into it.
After everything is done, the intervention radiologists will step up to the OR table and place a new mediport into my chest and remove the old port from my arm. So, basically I'm preparing for major surgery, the plan is to do it at the end of September or beginning of October. My cardiologist is all for this and feels it will make a huge difference for me. My heart is in good shape he says, it's my lungs that is the huge worry. I see my pulmonary Dr on Monday I need her approval on this. Of course, the Anesthesiologist has to agree to this and that's where I might run into issues. I will need two them in the OR, apparently if you have heart surgery and need to be on the heart/lung machine it's special training and not all anesthesiologist do that. Last year when I had my foot surgery the Anesthesiologist that handles the really sick folks did my surgery and he most likely will handle this one. My Vascular surgeon told that the Anesthesiologist is weird but he's a genius and will take great care of me.
My Vascular surgeon told me that he can't make any promises that this will fix everything or anything but it is worth a try, if I'm willing to take the chance. He told me that he really likes me and will do everything in his power to keep me alive on that table. Even if that means them cracking chest open and doing whatever is needed. I may spend a couple of days on life support but that's okay, been there done that. I'm totally alright with the risks that are involved with this and I look at it this way, if I die on the table that's the best way for me to go. I'm terrified of suffocating at my death. AT least on the operating table I'll be asleep and hopefully won't even know that I've moved on.
As to all the other stuff, yep my pelvis is still fractured. I now have 5 fractured ribs 2 on the left and 3 on my right. My cut that I had to get stitches in is open and the area around it is looking terrible. The wound nurses are worried I may have an infection in the bone. My foot which I had surgery on 1 1/2 years ago is STILL a major problem and I'll have to have that foot reopened in another surgery after I get through my big surgery. I suspect I'll have my foot done around December sometime. My Vasculitis is as bad as ever and my Rheumy is refusing to give me more IVIG due to a reaction I had to it. Even though several of my other Doctors feel I should try the IVIG again, but at a lower dose and with IV benadryl.
They are worried that my Leukemia is starting to become more active, will see an oncologist on the 2nd. My regular oncologist is away on emergency leave until further notice. So, I'll be seeing someone who doesn't know my case at all.
Overall, I'm weak, fatigued, in terrible pain, and under a lot of stress. I feel like I'm coming apart at the seems and there is NOTHING that can be done for me. Half the time I'm praying that I die on the table and the other I'm praying that it improves my life greatly. If you have any questions, please feel free to ask away. Sorry this was so long but I wanted to cover most everything so you'd get all the information.
I hope that you are all doing well and feeling better. I'm reading the posts and I'm sorry I've not been responding. Like I said I've been in a really funky mood and am afraid to respond at times due to my moods.
Thank you for your loving support and I'll try to be around more and respond more. Hope you all have a great weekend and please take care of yourselves.
Hugs,
Barbara