one day at a time . . .

Posts tagged ‘pft’

Losing Control…

It’s been a while since my last post. Been trying to get things back to normal after 101 days on IVs for 2010. Also attempted to wean off the prednisone since October of 2008…

Well this past Saturday was 2 weeks off the prednisone and I was going through pretty bad withdrawals. Very achy and it only got worse by end of day, feverish at times, and slight breathing decline. Then Sunday, started with a cold. Off to the dr Monday, and my breathing got real bad, and I blew a 33% PFT! 33%!! Haven’t seen that in 20 years!

So, back to the drawing board. Started oral antibiotics, and only 10mgs of prednisone. Had a long talk with my dr. Took bloodwork, key number to check is the IgE. I suspect it’s elevated again, which of course is treated with — prednisone. We plan to stay the course until Friday, and if not better, re-start IVs. Well my IgE did come back in fact elevated – but she chose not to up the prednisone until we retest it on Friday. We also discussed my sinuses. About 20 yrs ago, the ENT suggested surgery, but once I got my firm CF diagnosis it was determined it was not necessary. Then, back in 2008, when I had my 3 month migraine and saw an ENT, and had a sinus CT scan, he found chronic sinusitis and a deviated septum. He recommended surgery to clear out my sinuses as well as correct the septum. My CF dr decided against the surgery since my sinuses have not been causing me any problems. Now, she wants to repeat the sinus CT scan, have me visit the ENT again, and evaluate any progression. She’s not pushing the surgery, but wants to cover all bases now that I’ve had 2 bad years. She also suggested, as a precautionary measure, to get back with the transplant team over the next few months… “just in case”… I hate going there…

Deep down, I am so scared. On the outside, I am smiling, and believe I can fight through this like I always do. Just typing that brought tears to my eyes. No one really knows what the future holds for me besides God. I fear for how all this will effect my son. Takes me back to the day he was born and I realized that my CF may one day hurt him so deeply. I can’t do this to him. He needs me. He’s only 15, almost 16 and so anxious to get started driving. More fears for me.

Please, I need to find the strength. I have the best family support system anyone can ask for. My fight is just getting harder. Tears are still rolling down my face. Then, there’s the prospect of transplant. After befriending quite a few transplantees, that really scares me. I cannot believe the myriad of problems that exist. Every one different than the other. I just don’t want to go there. Sorry to you transplantees that are reading this, it’s just how I feel.

I realize, in order to be ready for transplant you have to be very sick, and it will be another chance at  more time. I just can’t get out of my head that once transplanted, my days are numbered by ridiculous statistics out there.

It’s so hard. It’s so scary. I’m a control freak. I feel like I’m loosing it. It doesn’t feel good.

Please God, help me to heal… help me to get back to a manageable baseline… help me to be there for my son…

I apologize to anyone reading this for the negativity… I just really need to get this off my chest and cannot burden those close to me with this. It’s therapeutic to get it out and write it down.

Off to the dr on Friday, and we’ll see where my CF Journey will take me.

Best wishes to all you CFers out there…

My Latest IV Experience

This coming Monday will make 3 weeks on my IVs. Not sure when I will be done.  This was a scary IV experience. I haven’t been this sick since 1999. My oxygen went below 90, my breathing was horrible, my mucus production more than ever. I ended up on triple IV antibiotics, and IV prednisone before I started to feel any relief.  High blood sugars were also added to the mix. My dr wanted me in the hospital, but I insisted on staying home.

Scary. While going through this all I could think of was, is this ever going to turn around; will my doctor start the transplant discussion again; will my breathing ever get better; will I have to stay on o2 long term…..

Now things finally turned around 🙂   …. no transplant discussion…  breathing improving … no more o2 needed … what a relief. And my sugars returned back to normal!

My concern now is will my fev1% ever return to baseline. It hasn’t over the past year. I’ve been on prednisone since October 2008, unable to wean off. Through this my fev1% has declined.

Please Please Please let me get back to at least 45%… My last fev1% prior to being sick was only 37% 😦

2011 BETTER be a better year. I’m sick of IVs – four times this year alone – ugh!

IVs… PFT Rollercoaster…

Hello!

I went to the dr today, my 37th day of IVs. I was sure I would have great PFTs – like 47% or 48%. The past 2 days I finally felt better – not winded anymore and not junky.

So, I blew a 44% – but the blowing sound was awesome – no junky or wheezie sounds – just clear air! So why only a 44% – I don’t know – but what matters to me right now is that I FEEL better. The PFT roller coaster can be very frustrating, especially when it doesn’t go in the direction I’d like it to.

Dr said my right upper lobe was FINALLY clear.

The decision is to infuse my last 2 bottles of IVs, which I am doing right now – then I can pull the peripheral out!

WHOOOOPIEEEEEEEEEEE ! ! !

I am down to 7.5 mgs or prednisone and will keep it there for about a week then touch base with my dr again and hopefully drop to 5mgs.

I had  my last xolair injection today. Not sure if I’ve mentioned this before. She tried it as a long shot – but after 6 doses, it didn’t really seem to do anything.

So for now – I will enjoy my IV freedom and hope for 3-6 more months of this freedom!

IVs – Day 24ish – 4/16

So I went to the dr yesterday, my PFTs are up 2 more % – 44%. My right upper lobes are still junky. Depending on how I feel in 5 days – we may stretch the IVs to 5 weeks.  My breathing isn’t baseline, I’m still winded. My prednisone is down to 7.5 mgs – this is when it gets scary – my breathing trouble always worsend when I’m ready to stop the prednisone. SO for now, I’m staying on 7.5mgs.

So, 4 weeks of IV, maybe 5. This is a first in 20 years! I can’t help but to wonder what changes are going on with my CF. I mean, 3 weeks and I still have a junky cough! So when I finally stop, will the bacteria begin to  multiply again? Am I on a downward path?

I hate that there are no answers. This is one of the worst parts of CF – the not knowing what tomorrow will bring. I’ve always come through my IVs and done well for 3-6 months. I haven’t had a good month since the summer of 2008.

I just want a ‘breather’… a ‘break’… 3 months would be nice. 3 months not to be constantly fighting. 3 months where I can live a semi normal life. Get back on a normal CF routine.

So I’ll push through it like I always do, with a smile on my face and fear in my heart.

PFT History

Went to the dr today. Got a printout of alot of missing PFTs.  I updated my spreadsheet – and here it is!

I’ve had another 2% increase in PFTs – yet my upper right lobes are still junky. It’s day 23 of IVs – may extend to 5 weeks – we’ll make a decision next week.

I’ve noted IV times to the best of my records. And there’s also an entry from when I was 10 weeks pregnant!

*** UPDATED DATA 10/15/10 ***

Date HR Sat FVC FEV1 % Notes
01/26/82 83
04/18/84 94 83
08/12/85 69 60
09/22/86 50 45
05/18/87 56 51
07/13/87 50 45
01/10/90 39 30 nwmc
06/19/91 94 38 34 very sick – mt sinai
07/23/91 37 36
01/30/92 46 36
02/11/92 61 45
05/26/92 55 45
07/21/92 54 43
08/14/92 55 43
09/08/92 53 42
09/15/92 55 45
09/25/92 59 48
12/01/92 54 44
02/02/93 57 45
03/30/93 54 43
01/01/93 53 45
06/01/93 53 45
08/05/93 52 41
08/10/93 52 41
10/05/93 59 42
11/12/93 53 41
12/03/93 62 45 2wks after lap.. And 2wks of cipro
02/04/94 59 42
04/26/94 98 58 42
07/12/94 65 49
10/03/94
10/25/94 58 43 10 wks pregnant
12/15/94 to start iv
06/12/95 60 48 1 months after birth of joseph
07/07/95 61 45 2 months after birth of joseph
08/21/95 68 50 best ever
11/13/95 58 45 on cipro
01/22/96 63 48 started cipro
10/13/99 95 58 43
10/29/99 100 95 55 42
11/04/99 90 95 52 39
11/09/99 113 89 44 31 admitted into hospital
11/17/99 59 43
12/01/99 83 97 67 48 1st day no steroids
12/29/99 120 92 34 back on IV and steroids 60
01/12/00 74 95 64 46 still on IV and steroids 30
01/19/00 83 97 54 43 no IV – steroids 10 – tobi
01/26/00 90 94 54 43
02/09/00 90 96 46 39 had a cold
02/23/00 80 96 66 47 after 1 week colistin. Felt good
04/06/00 81 96 66 47 after having a cold. 2 weeks on colistin. felt good
06/05/00 87 95 50 42 sick – started IV 6/6
06/14/00 84 94 45 40
06/21/00 77 95 58 45 after 1 week steroids/2wks IV
09/27/00 86 96 59 49 headcold 3 days prior-on ant since
07/05/01 103 95 43 40
07/12/01 107 94 51 43 just prior to Ivs
08/02/01 82 95 58 46 follow up after ivs completed 7/21
10/24/01 97 96 53 45 had a cold
12/05/01 96 98 54 43 follow up  – felt fine
12/19/01 54 41 felt fine – n.westchester hosp
01/09/02 98 98 65 50 felt fine – zithromax 3 weeks
05/08/02 100 98 66 52
07/09/02 83 97 53 44
08/05/02 69 97 59 45 on IV
08/12/02 92 97 58 48 on IV
11/04/02 105 96 55 45 reg visit – feeling ok
01/08/03 45 sick – start IV next day
01/22/03 48 still junky and on IV
02/12/03 80 96 59 45 on IV 2nd round
07/16/03 86 96 58 42 iv
10/20/03 96 63 43 sick – oral antibiotics
10/29/03 96 63 47 ivs – feel back to normal
01/20/04 59 46
02/17/04
02/20/04
03/12/04 49 end of Ivs
09/09/04 43 after 6 good months – start of sob
09/18/09 iv start – maxipeme/tobra thru 10/1/04
09/29/04 46 day 12 IV – chest heavy/tight and sob
10/07/04 63 46 still tight/sob – turns out it’s the IGE level! Need prolonged prednisone
10/27/04 63 46 on prednisone 40
12/08/04 66 46
02/02/05 68 48
02/17/05 IV thru 3/2/05 tobra/merrem/oral bactrim
03/02/05 70 51 10 days off 5 months of prednison and last day of IV
06/03/05 IV thru 6/21 tobra/zosyn d1-10/fortaz d12-end
06/15/05 97 62 44 IV day 12
06/28/05 62 45
06/22/05 98 66 45 IV day 19
07/13/05 61 44 IV start merrem/tobra/oral bactrim thru 8/10
07/27/05 60 43 1st day IV
08/10/05 97 68 50 last day IV
09/08/05 67 47
11/03/05 62 48
02/08/06 98 69 51 just completed 2 weeks oral abx and 8 day prednisone
05/22/06 iv start fortaz swithced to merrem / tobra
06/05/06 65 47
10/?/06 iv ceftaz/tobra
2/?/07 iv ceftaz/tobra
05/14/07 iv tobra/ceftaz sw to merrem day 11
05/23/07 63 43
05/29/07 70 49
09/27/07 59 43
12/17/07 64 48
01/17/08 62 43
02/29/08 64 47
03/12/08 66 48
03/26/08 66 47
07/24/08 60 45
10/?/08 iv merrem/tobra : start of long run on prednisone
12/08/08 59 38
04/16/09 56 41 to start Ivs today
04/29/09 61 45 day 14 Ivs – merrem/tobra
05/27/09 57 40 prednisone 15
06/08/09 69 43 day 10 doxy/cipro
07/13/09 69 43 to start Ivs today
07/27/09 71 45 day 14 Ivs – merrem/tobra
09/08/09 67 41
10/05/09 61 45 IV – merrem/tobra
11/04/09 57 43
01/12/10 49 41 cipro/doxy
01/25/10 iv imipenim/tobra – 17 days
03/18/10 49 39 prednisone 30mgs
03/23/10 iu start – ceftaz/tobra – plan 4-5 weeks
03/31/10 53 43
04/15/10 85 96 55 45 day 23 IV fortaz/tobra, prednison 7.5 mgs
04/29/10 59 44
09/23/10 95 44 36 started Ivs this night – tobra/imipenim
10/08/10 95 35 switched imipenem to ceftaz 2 days agao – bad hives
10/15/10 95 39 3 Weeks IV – continue to 4 weeks

Here’s my FEV1 trendline: