Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Hi All, I just wanted to finally take the time to thank everyone for their caring thoughts and concerns while I was in the hospital in Boston. Also, a special thanks to RH who coordinated getting the balloons and stuffed animals from the group. Thanks, everyone for your kind thoughts. In retrospect, if I had to get a serious blood infection, I think I was at the best place. (I was in Boston seeing my mito doctor, but I live in Philly). Dr Korson and the metabolic team were very involved in my care and I feel like I got extremely good care. They did an amazing job advocating for me and being proactive to make sure I didn't get any sicker. I was inpatient for 2 weeks and got discharged last Friday. I stayed in the Boston area over the weekend with a friend. I am starting to regain a little bit of energy, although I think it is going to take time to feel back to my baseline. I had a procedure yesterday to look at the PICC line since it was causing pain in my arm and they found another narrowing in my superior vena cava, the vessel leading into my heart. This is what they originally found in Boston that told them I had a blood clot. But, last week, after the tPA therapy in the ICU, the narrowing was completely gone. The fact that it's back again probably means another clot has formed, although it's not as big as the first one--yet. The interventional radiologist seemed very unconcerned about it which is totally opposite to the doctors in Boston, so I need to follow up with my PCP to find out what the next step is. It's always something! Thanks again for your thoughts and prayers. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 Hi, I will have your name re-added to the prayer lis at my church, Dolores Malilibear@... wrote: In a message dated 4/24/2005 3:33:59 PM Eastern Standard Time, rakshasis@... writes: Have you gone to a cardiologist for the clotting issues? Do they think the TPN could have caused the clotting problems? Hi RH, The current PICC was placed by an interventional radiologist in Boston. This is one of the reasons why I feel like I am in between two hospitals right now. They saw firsthand what happened there, but I have to rely on my doctors here now to put all the pieces together and adequately take care of any remaining issues. The IR doctor mentioned that he would suggest having me on anti-coagulants and suggested getting my hematologist at Penn involved. They think the clot was caused either from the infection (infection can cause an inflammatory cascade which can cause platelets and fibrinogen to aggregate, causing a clot) or b/c my old central line was so hard to get out since it had been in for 8 yrs. The surgeon said he had to brace himself to get it out. When he pulled so hard on it they could have irritated the vein and caused a clot to form. They cleared the old clot with the tPA drip, but it's kinda like an open wound that hasn't healed...the body still tries to send more clotting factors to heal it. So that's probably why I have another potential clot. The doctors in Boston didn't anticipate this though. They thought I would be fine once we got rid of the old clot. The PICC line actually ends in the subclavian vein, which is a few inches from the superior vena cava, where the clots are forming. They didn't want any central lines in the SVC for a good month or two b/c they were afraid of another clot forming just from the irritation of having something there. Looks like it formed anyway. I'll try to keep you updated on what my PCP says when I talk to her. Hopefully I'll have a plan by mid week. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 --- Malisa, Just wanted to let you know you are in my thoughts and prayers. keep us posted. DawnA In , Malilibear@a... wrote: > > In a message dated 4/25/2005 11:30:15 AM Eastern Standard Time, > rakshasis@e... writes: > > Interesting, I wonder if they could use a stent (is that the right > word?) to minimize local damage to the svc. Did they do a CRP (C- > reactive protein) to see if you have signs of generalized > inflammation? > > > > > HI RH, > Before they discovered I had a clot, they actually were first worried that I > had something called intimal hyperplasia which basically means that the > vessel wall has overgrown and caused a narrowing. They talked about putting a > stent in for the intimal hyperplasia, BUT it is in an area where there is > another vein feeding into the SVC and if they put a stent there they would actually > block the other vein's blood flow into the SVC. Luckily, they didn't need to > even think about this after they realized it's a clot. > > The hematologist at Penn is pretty good. I see Dr Emerson, who is the chief > of the dept. He specializes in strange blood diseases so I am a pretty > straight forward case b/c I mainly see him for my iron deficiency anemia issues. > > I talked to my PCP today and she is actually pretty concerned about the > clot. She had a long talk with my ID doctor whom I see tomorrow. They want to > order the venogram as soon as possible and also get a repeat chest CT and VQ > scan to make sure I don't have any clots or fungus in my lungs. There were some > spots on my CT scan from a few weeks ago which may have been fungus. They > also want to put me on lovenox, which is an anti-coagulant. I'm not sure if > they'll end up doing tPA again or not. I guess it depends on how big the clot is > when they finally do the venogram. > > Thanks so much for your concerns and your input. I will let you know how my > appt goes tomorrow. > Malisa > > > Quote Link to comment Share on other sites More sharing options...
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