Low PFTS with no explanation

[anonymous]

Hello,

This is my first post. I am almost 26 and for the first time in my life I had to go into hospital on IV's as I had an inection. However 2 months after getting out I am on home Iv's (first time ever) for the same infection. I feel fine, my sputum is white/light green. The only symptoms are low PFTS (mine are usually high) and pluritic chest pain. I am really worried as I was perfectly healthy up to a few months ago. I think living in a damp apartment might have triggered it off. I was exercising for a 1/2 hour a week and walking about 4K a day (to and from work) after I got out.


My question is: Is there another reason for reduced PFT's aside from an infection? The exercise seems to have done nothing and I am hoping the IV's work. Its not too bad as I am able to go in to work and keep going. i feel fine aside from the (now mild) chest pain. I dont understand how PFTS can not increase even though exercise is involved. There is Pseudomonos and Aspergillis and if there is no improvement on the IV's ill start the aspergillis treatment. i am hoping I get over this and can get on with my life. I really want a future with my girl friend (she is a doctor by the way) but I need to get over this first.

Sorry if this has been deiscussed before.

V

 

[luke]

PFT's are a strange animal...as for acute decreases it is normally due to some sort of infection but not always. If it is not because of infection theye might be a secondary cause. You mentioned you cultured aspergillus, have you ever been tested for Allergic Broncho-Pulmonary Aspergillosis(ABPA)? This definitly would explain a acute decrease.

What I would like to impress upon you is that PFTS's don't always rebound quickly, give it time. Take all of your IV's, do all of your inhalations/CPT and continue your walking. Redo your PFT's in a month or so and try not to worry. So long as you feel fine that is what matters, if numbers dicated life a lot of posters would not be with us.



luke RRT, 29/cf

 

[anonymous]

thanks luke.

I dont think that I have been tested for ABPA but the doctor did mention something about a possible allergic reaction causing the reduction in PFTS. Is it possible that an allergic reaction to the aspergillis is causing the airways to close and cause a decrease in PFTS? I hope so as this would abe a lot better than having an infection.

One other thing, if I go on the aspergillis steroids will I put on weight on my face, to give that puffy-just-had-my-wisdom-teeth-pulled look?

I dont mind putting on weight ( I am 5' 11"/6 FT and 68-70KG) but am anxious to know if it will be predominantly on my face.

Its hard working all this around my job.

Thanks again,

V

 

[anonymous]

Allergies can absolutley cause a reduction in PFT's. However, ABPA is a pretty serious thing not like being allergic to cats or something. So it wouldn't be something you would "hope" for. It would probably be better if you ended up just having hyperactive airways or something related. As for prednisone there are many side effects one being the "swollen" look. When I was younger I was on high dose prednisone and did not tolerate it real well. It effects everyone differently but to me I looked like a whole other person. Of course I was 16 and vain like most 16 yr old would be so it effected me mentally more. I do not want to discourage you because living is the most important thing but it can change your appearance dramatically. Please keep in mind everyone is different and it really depends on how much and how long you are on the prednisone.

good luck infusing!

P.S. ABPA is not an easy diagnosis to come by and you really need a good doc to get a definitive diagnosis. I would not let them treat you with high dose prednisone for it until you get that diagnosis.

Luke

 

[luke]

I do want to add one more thing, the apergillus by itself can drop your PFT's without having ABPA. Any infection will drop your numbers, fungal or bacterial. Are they treating you for the Aspergillus with Amp-b or something already?


What were/are you PFT's?

Luke

 

[anonymous]

I had aspergillius and they ran a blood test to see if I was allergic to the aspergillus. They had to send the blood work to California or someplace too. Luckily, it came out that I was not allergic & praise God, the next sputum culture didn't show it was there. It may return, though?
The only new med I had taken between sputum cultures was doxycycline that I can remember. I don't think it's normally used to treat aspergillus, but maybe it worked??
Are you on any inhaled antibiotics?

 

[anonymous]

I am not on anything for the aspergillis. I might go on something if the IV's dont do anything. I have an appointment tomoorw. Ill have to rush out on my lunch break. Not sure what the % was but it was high. My highest ever when I was very active was 4 litres. Usually arounbd 3.5-3.8 when I am not that active. They dropped to 2.6. I got them up to 2.9 after 12 attempts so it is quiet serious.

I just hope there is some improvment tomorrow on them I really do. This is the most worried I have ever been about anything.

I am on Colomycin in the Neb i was on tobramycin last month. The Iv's are the usual Tobramycin and Fortrum. I was told that the Dutch give their CF's Iv's even at the slightest sign of an infection and their life expectancy is around 10 years longer than anywere else in the world. It makes me feel a little bit better. I think here (ireland) they are taking that aggressive approach to it.

Damn I hope my good lucks arent ruined by the steroids. (<img src="i/expressions/face-icon-small-smile.gif" border="0"> honestly though something has to be keeping my girlfriend around!)

Here is hoping it all goes well. Thanks for the replies.

V

 

[buggygurl321]

V,
My daughter was in last year for a clean out and even though she was on 3 wicked strong IV antibiotics her numbers were plummetting while IN THE HOSPITAL. She also lost weight (approx. 5 lbs in a week). You didn't mention whether this was the case for you. In any event, it was an allergic reaction to the aspergillis. (I am sure there was some in the hospital bathroom as well). They treated her with prednisone for a couple of months and that really seemed to help. She is doing much better now. They told us that approximately 50% of all cfers have this allergy as do people with asthma. I am wishing you well and know that you will be feeling like your old self before you know it. Take good care,
Gwen (Buggygurls mom)

 

[anonymous]

Thanks Gwen, I feel a lot better for that. I lost a little bit of weight. Not much but I have put it back on (most of it). It is so soon after my hospital stay thqat thats what I think it is. After the I'V's i begin the aspergillis treatments. However my blood tests do not so up any aspergillis. Ill just have to togh it out.

V

 

[anonymous]

Your problem could be just a hardy infection. However, you could have picked up a bug/parasite randomly and it is taxing your system, such that when your system is taxed the first thing to suffer or be compromised is your lungs, as they are already weak and susceptible to physical changes.

Regular physicians will either typically overlook this or dismiss it.

I had a combination of 6 parasites and fungi for over a year before I was properly diagnosed. The CF docs kept insisting my ailments were the result of just a "tough infection".

Now that I am without the parasites, I am better. However, being ill for so long permanently affected my lungs, causing me to lose 25% of my lung function. My life will never be the same.

Depending on where you live, I would run parallel tracks and not only have your CF or your main doctors test you, I would have alternative practitioners run tests. I recommend you try to find a legit alternative practitioner, they can be tough to find.

Best of luck!

 

[Grigsbone]

For what its worth my experiences were much like yours though it has been a few years ago. upon a simple bronch they found it was asprigillous but acid reflux that was causeing it. Once on prilosec for couple week pfts came back up to norm and the "pluridic pain" (that wasnt really that but a refered pain from the damage in my espophogaus) went away though i never gainedeverthing back and most times we dont after and exacerbation but it help tremendously almost back to perfect.

So just a thought to consider.


Well wishes and healing angels