Mitzigirl

dSo now we are up to the first trip to Mayo Clinic In Rochester MN...I am sorry I can't remember the year all this illness and meds have taken away my ability to know years and write numbers a lot of time..So please bear with me..

My aunt was allowed to travel with me since I was already have so many breathing problems, the clot and holes all in the arm..

We arrived the first night and at the hotel that connected to the clinic and had an appointment with the dermatologist the next morning at 6am..I sure didn't have no ideal in my wildest dreams what all this would entail for 5 days..

We arrived at clinic early to do all the paper work and saw the doctor at 8am..He explained after examining me that he would send me to nurmerous doctors there within the clinic each day and they would decide what they wanted run and last day I would follow up with him for results..He agreed it looked like a brown recluse bite and agreed it looked like pyoderma gangrenosum but did not have any ideal why I was not healing or what caused the clot..While there I still had a central line in my chest where we used when needed that I had to care for...So he looked at it said well I guess it is necessary dont let them do blood draws through it until we know more..

At the front desk they made me back to back appointments for everyday while I was there..I had to go to a regular MD..An Infectious Disease Doctor, Heart Doctor and Another Docotor to check this hernia in my abdomen that seemed to be growing..All of them ordered their own test..It was back to back appointments..Blood work..EKG..CT Scan Bond density test and many more I cant think of all of them right now..The infectious Diease Doctor didn't seem to believe me and started are you sure your not doing this to yourself..I was beside myself I said I have been through this before the answer was no then and still no now. Why would I put myself through all these surgeries and procedures that are so painful live off very little income and have to fly after having a clot which I know is dangerous..I just want answers and want to get well..He sent me to a doctor about my lympatic system who said my arm had been through so many surgeries that it wouldnt drain right now and that is why it stays so big..He recommended wrapping it everyday with an ace bandage to help it drain..Which I still have to do to this day..Between him and infectiou Diease Doctor I was then sent to a shrink...He gave me the usual run down all the testing and told me he thought me to be clinically depressed..I already knew that one..He recommended a shrink for me when I got back home at Vanderbilt which I had already seen..So all week we ran from clinic to clinic test to test and I had gotten to where I was so short of breath I could do all the walking and had to use a wheelchair some..I couldn't wait to last day there to get the results because I just knew they would surely have the answer..

The morning of our departure we had an 8am appointment back with Dermatologist where I started to get all the results and hopefully have a soultion to all of this..Then we were scheduled to fly out at 4pm that evening...When we got there and he called me back and started going through mounts of paper work...and shaking his head..

He said well according to CT scan it isnt just a hernia there is a tumor behind it and we dont know what it is or what it is connected to...He said I dont see them doing any surgery to fix it right now with pyoderma gangrenosum raging wild it will not hold the mess it will take to get intestines to stay in place but will have to be addressed later..

When on to tell me that the Heart Doctor said my heart is enlarged probably due to all the medicines and many pain pills I had to take and really nothing to do about it..

Said MD thought that like Vanderbilt said I showed signs of chemical sensitivitie syndrome and hopefully if I got over the pyoderma and get the holes to seal then in time my body hopefully would desensitive itselfs when less meds had to be given but there was not gauratee so to always keep to epi pens on me at all times incase of anapylaxis reaction again..Because they would probably come..

He said now for the bad news we still dont know exactly what the clotting disorder is I called and asked your workers compensation to give us 4 more days while you are here and they refused..He said so I dont have all the blood work run and will call You Doctor at Vanderbilt with the results and he will call you when to come back in and follow up..

By then tears was falling I said you mean I took the chance to fly all the way out here can't breath good and no answers..He said well if we get more out of testing of course you will be notified but they didnt give us enough days as complicated as you are and since today is Friday and we have no clinics on Saturday or Sunday then they would not agree to room and board you both to come back for approximately 4 more days to complete but I will get all of this together and get it too your Doctor and we will go from there..He said continue with home health and wound care procedures of packing and washing it out and wait until you here from me or him one..Someone will be intouch with you..

So here I was leaving Mayo Clinic with no more answers than I had before I went..We left went back to room got our things and I was oh so let down..I didnt know if they could cure me but I had more expectations than this..The only thing I knew different was heart enlarged cant fix, some sort of clotting disorder still dont know what..and Lungs that were not functioning properly that he said was damaged from all the many meds and living with smokers the first 18yrs of my life..and her I had never had lung issuses before the clot. And a large abdomenial hernia with a tumor that I didnt and still dont know if it is cancer or not..So we flew home me ever so discouraged by the whole week not understanding if they paid for me to go why on earth would they not leave me there to get the answers?

So home to Tennessee I came called Vanderbilt Doctor who told me as soon as I hear something you will be the first to know that was on Monday..He said let home health continue and we will get the answers and I will get back to you Vivian..

So here I was same thing wrong no answers no soultion of being fixed knowing I have an enlarged heart,tumor shot lungs blood clotting disorder and chemical sensitivity sydrome but nothing else...So I wait..That seems to be the history of my life since this has started..