Home Forums All Categories Non Invasive Bladder Cancer Sorry to be off topic again.

  • Sorry to be off topic again.

    Posted by britt on July 13, 2009 at 11:53 pm

    I just wanted to mention that any hope for my post-TURB follow up is now even further on the back burner.
    On the 24th of june i had a second breathing attack. I had arrived unconsciuos at the closest hospital able to take my level of care. After awaking on a BIPAP unit i was addmitted for 4 days. I had develoed pneumonia on top of my COPD caused by my years of smoking as well as level 4 CHF. They released me and i muddled by for a couple of weeks. I was unable to sleep the entire time due to anxiety from having had my 2 breathing episodes upon waking.
    This fri i went in for the 2nd phaze of my sleep study. i had taken the first part months before and was diagnosed with sleep apnea. i had awaken 138 times during the nite from my throat closing. This test was on the CPAP machine to see how i handled it and also tto establish setting for a home unit.
    I fell asleep with the unit on about 11pm. All was well. my vitals were perfect and I didnt awake once. At 230 i had to urinate(since my turb I have a need at least4 times per nite). When the mask came off I had another shut down. They gave me 4 puffs of albuterol and I was taking a breathing treatment by the time the crash team came up from the ER. I had to make don stairs unable to breath. There I took another breathing treatment and started to get my breath back. They admitted me and kept me over the weekend for observation. I was able to sleep like a baby the whole time. now rested I feel much stronger. im still scared to be at home. id hate to have my wife go thru another one of those! She was spared this last one.

    As i said previously, all I need is a simple cysto. If I could ind a dr to do it in the lab, I would be ok. The dr the VA has on tap will only do it in surgery and the odds of my getting clearance in the near future arent to good.
    I just want to thank you all for your moral support. Ill post again when i get to where they will be able to do my follow up cysto.
    As i had said the uine screens they did were both fully negative, One was done at the VA and the other by my new uro;ogist about a month apart.
    Thaks all
    britt

    Stephany replied 15 years, 7 months ago 5 Members · 13 Replies
  • 13 Replies
  • stephany's avatar

    stephany

    Member
    July 17, 2009 at 9:39 pm

    Britt, that’s great news. I hope your sleep study gives them enough data, and that you go home with a plan.

    Thanks for keeping in touch.

    Stephany in Iowa

  • britt's avatar

    britt

    Member
    July 17, 2009 at 9:03 pm

    Due to my general health and the effects of pneumonia, i dont think I had enough time to recover, i had complained at the hospital that i was being realeased too early and didnt feel safe. i was congested the entire time and nothing was coming up. Now since the epide I had suring my test i have gone without a single attack. Im still afraid to sleep and only manage to doze a couple hours in the early morning.
    Now me breathing is clearer and I dont feel like i coul;d lock up. I de feel very congested in the throat. I also have terrible larangitis and cant even croak. I am far more relaxed and will give sleep a real effort tonite!
    Neuro called me and wants me in tues to evaluate the sleeep study. I hope they got enough data. i slept about 3 hours and my vitals were fine and I didnt wke at all. I may get the CPAP then!

  • britt's avatar

    britt

    Member
    July 16, 2009 at 5:57 am

    The way my attacks have orrured have been consistant. Each has been witin minutes of awakening. Im croupy and when i cleared my throat all the sudden my lungs immediately locked up. I had the exact same reaction on my last stress test. They gave me andemmison to speed my heart rate. It was 15 min before it abated. the dr said that was a common reaction to the med. While i was at the sleep study I had just taken the mask off for about 6 min to urinate when it happened. Up until this last two events the nebulizer had pulled me right out of it. I had about 4 good ayyacks similar to my first and 1 breathing treatment did the trick.
    I just happend upon the staticus asmaticus while looking for something else.
    Now I didnt even have incipiant panic when it happened. it didnt strt to dtress untill the breathing stopped.
    The put me on trazadone and zoloft this last stay. I askec my nurse about getting counselling. Ive already been treated for PTSD. That was a different form but still hits home. Now its health and hospital related rather than violence. It really effects my sleep. Along with the sleeo apnea waking me up I awkw shaking and have to gey out of the room.
    My nurse says that I have too much on the fire at this time and wants to get further tests done before any Psyche work! I know its needed.
    Just to mention. After the last MI I spent a year unable to sleep due to unability to breathe prpoerly. If i lost ruthum i would gasp for breath. They finaly got my diagnosis right it was caused bt CHF. Ath that point my ejection fraction was under 15%! When i got on correg it actully went up to 45% last year. now with the new stuff the echo they did in the hospital a few weeks back showed me under 22% now.
    I do try to stay as calm as possible but Im still scared of sleep. Mon when i got home i didnt doze off till 530 and slept to 1030 without incident and last night it was from about 6 to 10 and i was OK. On top of sleeping like a baby in the hospital I sould be on the mend. I just dont think I had come back from the pneumonia yet and the compounded fatige was too much. Also I was badly congested when I took the sleep test. I feel much clearer now
    Thanks all

    briytt

  • stephany's avatar

    stephany

    Member
    July 16, 2009 at 3:44 am

    Britt, Julie makes a good point, too. Getting the anxiety under control could make a big difference. Having lived with panic attacks for several years, I know how disabling they can be. And it doesn’t help that any medication for anxiety makes you feel different, so you worry about the side effects of the medication, and then you are more anxious, and there you go again!:S

    It sounds as if you’ve got a pretty good idea that this is contributing to your problem…..do you think you have someone who could help you get this under control? My father has problems with anxiety, and he has never been able to stay with any medication long enough to get help, because he always stops after a few days, thinking it either isn’t helping or is causing more problems. You need someone who will listen to you, help you monitor and work through the medication issues, and keep you on track with managing the anxieties. Don’t give up.

    Perhaps a nurse practitioner who works with psych meds, or a board certified psychiatrist who specializes in anxiety disorders might be able to take the time to give you the help you need. When you can move the major anxieties to the back burner, you can work on the smaller problems.

    Stephany in Iowa

  • wsilberstein's avatar

    wsilberstein

    Member
    July 16, 2009 at 3:20 am

    britt wrote:

    I had read about something called staticus asmaticus that really hit home and woriies me. The Pulmanry Dr attending me this wekend hadnt heard of it. Its scary the things we find on the internet while lookning for something else!
    britt

    I don’t know why the pulmonologist told you he hadn’t heard of “status asthmaticus.” Anyone who has ever done a medical or pediatric residency has heard of it and treated it. I suspect your pulmonologist was trying to avoid a discussion or make light of it to get your mind off it.
    Don’t make it more than it is. Status Asthmaticus is an asthma attack that doesn’t break with the bronchodilator medicines used at home requiring emergency treatment and additional medications. As you already know from your own experience difficulty breathing can be serious, but even status asthmaticus is treatable. Don’t look at the worst outcomes and think they must apply to you.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • stephany's avatar

    stephany

    Member
    July 15, 2009 at 3:32 am

    He wore it at night, and when he napped during the day. He didn’t wear it when he was awake, but everytime he slept. I do hope you get some relief, so you can cope better.

    Stephany in Iowa

  • britt's avatar

    britt

    Member
    July 14, 2009 at 5:01 pm

    Julie, Ive seen the unit that I sould get from VA. They have an attachment to add distilled water to humidiy the air so as to prevent drying of the throat.
    The difference between the 2 units is quite a lot. The BIPAP unit not onlt forces the air in abut on the exhale it removes it. Its an odd feeling. If you get off pattern you miis your breaths and cant breathe, Similar to hyperventiilating. When I panicked that first time they removed it i was catching less then 1 out of 20 breaths. The big unit in ICU had a monitor to display how you are matching the in/out cycle with the machine.
    I had some aniety last nite. I didnt doze off until about 5AM. When I woke at 1030 I was a bit disoriented and confused. My chest was congested and I got a bit worried. The attaakcs Ive had were just out of sleep and when clearing my throat. I sat there doing “purse breathing” for about 5 min until I was sure I was ralaxed and OK. I did a nebulize treatment and feel pretty good now. I am amazed at how well rested I can feel off 5 hours sleep.
    britt

  • julie's avatar

    julie

    Member
    July 14, 2009 at 4:02 pm

    Britt, My husband wore a CPAP for years. He was even more comfortable when they came out with nasal pillows instead of a face mask as he was much more comfortable. Whenever he was in the hospital I would bring in his own CPAP machine so he could use it. If they wouldn’t allow his machine I would bring in his head gear so he could have the set up that fitted instead of whatever they had lying around the hospital. The last 18 months he was on oxygen and there was a place to insert the line so he got oxygen in his air.

    He would wear the CPAP whenever he was lying down. So if he was reading in bed for instance he would be wearing it. I think you might feel better if when you wake up you sit up on the side of the bed with the apparatus on then turn the machine off. If you start to have breathing problems you can turn the machine on again until you are comfortable then turn off the machine. When you are breathing without the CPAP then take off your head gear.
    This is not medical advice just from the wife of a CPAP user.

    Regarding CPAP vs BiPAP when they did your sleep assessment they would determine which you would need. Dick never did wear a BiPAP but the hospital staff kept referring to his machine as one as they didn’t note the difference.
    After we moved to Tucson when he got a new machine he got one with the ability to put moisture in the air. I think it is much more common these days to include the vaporizer. My daughter, son-in-law, daughter-in-law all use the same set up and they are in Minnesota and Washington State. All of them report much better sleep.

    Are you getting in help in managing your panic? Sounds like the start of a vicious cycle when you start to panic. Julie


    Volunteer Coordinator
    ABLSC
  • britt's avatar

    britt

    Member
    July 14, 2009 at 4:16 am

    Stephany,did he only use it at nite or did he have bad spells requiring him to wear it during the day time? After my 1st nite on the BIPAP they took it off when the day crew came on. With in 4 min I was panicing begging for it back! It was a matter of panic. I just couldnt articulate my breathing and wasnt geting air. The next morning I was fine and the same the last nite on CPAP. Honestly i upset the dr for not wearing it this weekend. the 1st day i was too afraid and the second I had done nothing but sleep and was not up to the thought of wearing it all nite +while awake.

    I sure hope this is temporary. i could live with being short of breath thats been my life for years now. Ive just learned to breathe. Locking up like that all the time will drive me past my limuit to endure. Im nearly there now!

  • stephany's avatar

    stephany

    Member
    July 14, 2009 at 2:48 am

    Britt, my husband had a bipap for home use, and he got to the point that he went nowhere without it. It took awhile to get it calibrated, though. I hope you can work through all the problems and get some relief.

    Stephany in Iowa

  • britt's avatar

    britt

    Member
    July 14, 2009 at 1:36 am

    Thanks folks. It will be a CPAP not BIPAP. Im not sure if they even offer the BIPAP for home use. Its such a shame that they had to drag their feet on this. if we would have done it in Feb all would have been well.
    One thing I do have to address is the attendant derpression that has developed thru all this. On top of that the anxiety alone can trigger an episde.
    I had read about something called staticus asmaticus that really hit home and woriies me. The Pulmanry Dr attending me this wekend hadnt heard of it. Its scary the things we find on the internet while lookning for something else!
    Take care all
    britt

  • mmc's avatar

    mmc

    Member
    July 14, 2009 at 12:27 am

    Britt,

    Wow! :blink: What a scary thing. Glad you are doing better now and have a CPAP.
    Those cytologies should give you some assurance though.

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • stephany's avatar

    stephany

    Member
    July 14, 2009 at 12:21 am

    Hang in there, Britt. The Bipap machine may make a difference. Once you start to get better sleep, you’ll be able to cope better, I hope. Keep in touch!

    Stephany in Iowa

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