Well here it is I am back from Mayo Clinic and no real answers just fears..I resume with home health and waiting to hear something...I pressumed from Vanderbilt..
I noticed on Tuesday that my central line didn't seem to be working right..I had trouble flushing it but but heparin in it and went on..At that time I wasn't getting meds in it I was just getting phenegran every now and then when I would get sick at dressing change..So I asked nurse who said as long as it flushes you are alright might be against the wall of a vein..Just keep it flushed and heparin in it..
On Wednesday morning I was sitting on the porch and got a call come in from Mayo Clinic from the dermatologist I had seen. His said Miss Vivian Listen closely I got your blood work back don't know exactly what the clotting disorder is because we didn't get enough to run all the testing..But it is vidaley important that you go straight to Vanderbilt right now and get the central line out..He said I was told By Your Doctor at Vanderbilt that it is hard to flush due to nurse calling..He said since you have lost so many with no explanation I believe there to be a clot in it..DO NOT flush it again go right now..I said I don't know if I have a ride..He said Vivian this could be a matter of life and death go NOW..So I made calls got aunt to agree to go here we went to clinic at Vanderbilt to see the doctor..
While on the way I was thinking how bad can it be it still flushes but then it was in the back of my mind him calling all the way from Mayo not Vanderbilt doctor..When we got there is was waiting on me and said we have to go to radiology..We think there is a big clot in the line that is all that makes sense with your disorder so we have to get it check out before anything else is put into it...
At radiology he looked at it and said Miss Vivian don't sneeze or cough if you can aviod it..There is a huge clot even though you have heparin in it and if it moves before I get it out it might go to you heart and you will surely die..Great news Right? So he took the sticthes out and he said I am going to start slowly pulling it out let pray nothing dislodges..I was terrified already had clot hit lungs that was not good I knew if it hit my heart I would never survive it..So slowly he pulled and said any chest pain I said no...So he got it out and said Whew...In relief..After it was out he let me see it and sure enough right in the center of it was a big clot..He took a suringe with saline and flushed it out on the drap I had over my chest..It was hard thick and big..He said it is obvious that heprain isn't enough to keep your lines clear..So doctors will have to decide something else for you..
We discussed it then Vanderbilt doctor said let me call Mayo Clinic and you come back next week and we will decide what we will do..So I came back home to home health and packing..We continued this and by the next week when I went back I had red streaks going up my arm and new holes that were opening and already black..
I was told we would do Rocephin injections One a day for 30 days and go from there that way no lines involved until him and Mayo Doctor could decide what to do..And follow up in a month unless worse..
The shots made me so sick and were really painful we did them the entire month and arm seemed to calm down but developed cellulitis in my right cheek of my behind..It was a hugh knot that turned red and hot to the touch..Oh My it was so painful..Was admitted for IV meds..Ended up couldnt keep a IV line in so decided to do another picc line which I had had several with no real problems just won't last long. So we I was taken down for a picc line they got it where they thought it should be useing ultra sound..All of a sudden I had severe chest pain said something isn't right my chest hurts..The lady who did it on me had done it many times before on me she called over another co-worker and said I don't know about this she seems to have chest discomfort..He was looking and saying it looks like blood from vein I said hey it is getting worse..Next thing I knew I was being run with down the hall into a surgery area because it was in the artery to my heart and wouldn't let her pull it back out and she knew if it broke or tip came out I would die..So I remember them saying we are giving you something to relax you when I came too the line was out and they said not again will we picc line you much to dangerous since they don't know why you can't keep central lines in..So we finished that stay to get rid of cellulitis on IV meds with IV being moved almost after everybag..To date that was my last line in me..
Came home with them still packing the holes in the arm and waited to see what they would decide..We tried many different meds..Some allergic too some just did nothing some was even experimental like cellcept..I went to cancer center and was infused with it several times with no real results..
By then my hip was hurting more and I noticed one day a large hard feeling spot back there..Showed it to the nurse turned out to be a spot like the ones I have in my arm..So we started getting into tub and irragating it..It went alright until one night a hunk fell out and we found out that we had a tunnel that was 13cmm deep straight up in my hip..We spent the next 4 years working on it with my arm packing and washing with hibeclens trying to get it to seal..
In the meantime I got notice from workers compenstion that I was going back to Mayo Clinic for more testing..Seemed they needed more blood work and it could not be drawn and sent there had to be there and give it while there..Was informed it would be a 4 day stay and they would get back to me with it..My oh my what a mess..I did not want to go back but they gave me no choice in the matter..They scheduled it like last time said I could take one person aunt agreed to go..It was about one year from my last visit...I had been through so much in this time and didn't really hold any expectations this go around as to whether it would work or not..I did not know..I just felt I had no choice I drew their check and they held the cards in their hands..Goodness knows by this time we had been to Court a few times them arguing that the pyoderm did not start from the spider bite because it can come from other things..So with it being only income and them paying the bills I felt like this had to be done..Doctor at Vanderbilt assured me it was a good ideal because they needed to see the wound in my right hip and arm still with all the holes and mostly black..He said the test they wanted to run on my blood could not be done at Vanderbilt that Mayo Clinic is the only Hospital he knew of that ran it..
So off we were to Mayo Clinic for the 2nd and last time...
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