Once more into the bright light!

Julie, I havent had a cysto done since the did my TURB. I have had 2 tests of my urine for spurious cancer cells and came up clean. When I did see the uro who was set to care for me his thougt was that due to my type of cancer and his take on the pathology report and the urine screens he doesnt expect any troubles. His guess is that Im clean or at least not in any immenint danger.
I have so many issues. 2 months ago this breahing issue came at me out of left field and Im at whits end. i dont know that I could survive another experience as I had wed morning. As of now i was already rife with medical related PTSD. Now with these new fears Im not sure Ill ever sleep again. The last 2 times I had gotten any slepp at all, the next am when I cleared my throat is when my lungs locked up. Its a living hell just to sit tere and stare at the walls all nite!
God bless you all and thanks for the support. Cynthia will probaly suggest that i stop these posts as they have little to to do with the letter or intent of this board and I amy just be bringing all the rest of you down.
Thanks to all for your kind words and concern.

Britt, you have a multitude of medical issues. It must be difficult to figure out which is a priority. It seems to me that the heart and lungs are the most urgent concerns. I hope being able to use a C or Bipap will really help. It seems a lot has to happen before you would be medically ready to have another Cysto.

I know you are worried about the possibility of having the Bladder Cancer return. Has anyone done a urine cytology recently to check for abnormal cells. If they don't find any this may help relieve your anxiety about bladder cancer to some degree.
I hope the VA will be able to treat your heart swiftly.

I went back and read your posts since you joined the forum. You have been really abused by the VA system. I did see that you had a cytology test a month ago and it came up clean. I also read why you don't want a spinal due the needle breaking when they did one before.

The only way I know of to get the VA to move is to either involve your Congress member or your Senator. The way you have been run around is inhumane.

Julie

Thanks Stephany. The VA was pushing for me to do the defribulator a few years ago. I even travelled the 180mi ea way to cleveland for a consult. I get all the way up there and the idiot foriegn dr looked at an old test result. I couldnt get him on the right page. He even refused to call my cardio that refered me toget the correct info! All I got from him was that "hes the dr!". Ill tell you, the way some of the VA specialists treat us is just beyond shame. The are full of anger at having to fill the commitment to VA for their training and preks(citizenship, education, homes, ets) that they cant go out and hang their shingle quite yet that they can be intollerable. Thank God they arent the norm!
My PC wants to see me as soon as Im out. So mon my clinic will be open. I hope I can get right in and he might be able to fast track me a bit. Unfortunatly their hands are a bit tied due to red tape and procedure. Most of this is in the direction the were heading for me tho. my current dr knows my condition. Its unfortunate that there isnt much he can do and as such only sees me every 6+ mo when I need more hands on.
I wonder what they can do for me. If I can get a cysto done, what if they do find the cancer has returned? Without anetshetic a TURB isnt going to happen and I dont know if i have it in me to do it with a spinal. With my nerves and hospital fears Im afraid Ill need to be out.
Thanks for the reply.
Britt

Oh, my, Britt! This will certainly get your VA team to sit up and take notice, won't it? Maybe that will be the good side to your ordeal.

Those breathing machines (bi and C) can be a real sleep saver, I found from my husband's final acceptance of them. I hope you continue to recover.

How is your wife? Has she recovered from the scare? Does she ever get on the computer? Maybe some of us "cancer wives" could correspond with her.

Best of luck,

Stephany in Iowa

I had been really weak for the last month and hadnt slept at all. Tues. nite i finally got about 4 hours slepp. I woke up wed Am and tried to clear my throat. After that I couldnt get abreath! I put my nebulizer on right away as that has done the trick before but this time it was no help at all. I had my wife call 911. It too about 20 min for them to get there and by then I was on about my 3rd treatment and just trying not to go into a total panic since i couldnt get any air at all. In the ambulance they couldnt do anything so the tried to intubate me with an airline into the lungs. The idiots kept missing and pumped my belly full of air!. They finally used a hand pump to manually ventilate me which was the only thing that kept me alive. It was a living hell! I must have finally passed out. I awoke at the hospital on mechanical breathing device.
It turned out that instead of taking me 15 min to the county hospital it took over 40 as the had to get me to a level 1 trauma center.
According to the Dr i had been carrying around pneumonia for for about 3 weeks and with my weak heart it became to much and finally shut me down. thats why I had been living off that nebulizer these past weeks but it finally went beyond all that.
By late the 1st afternoon i was able to breath normally on Oxy. That nite I had to go back on the mechanical breather and slept like a baby. After 4 days of IV antiboitocs, breathing treatments and rest, they discharged me tonite. The fisrt 2 nites I was on BiPap and last nite they went down to the Cpap machine. It seems that the laboring I did frurther damaged my heart so things arent looking all that great. They couldnt do anything else for me. I was sent home to rest with instructions to get with my VA team asap. The Cardio I saw there said I needed to get a defribulator put in asap. They did an Echo Cardio Gram again and my ejection fraction was under 25%!
All in all I was verey lucky. Pulmunary ICU(where I spent 4 days) told me how lucky I was to make it.
On top of all this, they were giving my IV steroids to combat the pneumonia. this caused my TypeII diabestes to kick in big time. I was running in the high 300's each test and getting a couple of units od insullin. I was also getting a shot in my left abdomen of heparin due to bed confinement. They were also giving me plavix and asparin. This AM I awoke and my gown was crusted with dried bllod(quite a bit). Tis morning i expressed my concern to the nurse but she said how important it was. Again I got the heparin, plavix and aspirin. Just from the puncture of the syringe I was bleeding soo bad they had tho put a compress on it!. That was at 6AM. at 4pm before I left there wast still a drop of bright blood on the compress but it was stopped. I do have a big bruise there. Both instances were in the same spot. Ill surely be careful now. I had talked to my PC at the VA on Thur and my nurse wants my to call and come in ASAP!. The Pulmant Dr didnt wnat to send me home w/o a CPAP unit in case of emergency and also he seems to think me in danger from my apnea.(Ive been diagnosed since Nov). I couldnt do the CPAP due to panic/claustrophobia attacks. After this past month of wearing thje mask from the nebulizer and wearing the BiPap in the hospital Im all past that. Againg I slept like a baby under the BiPap. I went into a panic the 1st mroning and wanted it back on but they helped me to to relax and realize that it was panic that was getting me..

Well with my EF way down there is no way Ill get surgical clearance to do my bladder procedure. Rock and hard place time. Im just praying that with rest my correg will bring my heart where it should be. When this 1st started my EF was under 15% and I lived in the mid 20's for a couple of years.
Guys and gals, I just dont know how much more this guy can take!
Thanks for all your your concern here
britt