Medical Update

beyerdug

New member
I saw a pulmonary expert last Thursday and got some preliminary results about my cf. I was of course hoping he would say I wasn't treating my asthma properly and that my cf was still dormant. He took one look at my chest x-ray and said he could see cysts and an abscess in my lung. He said the damage was "moderate". I think that was a way of saying "I don't know until I see a ct scan". I did the pft and again he said "there is a moderate amount of blockage". Very vague. He put me on two wide spectrum antibiotics. I gave a sputum sample and blood for all the blood tests. I will get a ct scan on Wednesday and see him again next week. That is when he will be able to tell me what "moderate" is and set up a treatment plan for me. This means I know that my cf is at the forefront now but I'm not sure how bad it is. I still feel healthy but that might be because I have gotten used to feeling sick. I am dusting off the bicycle and plan on getting back on a regular exercise routine. I already eat a healthy diet and stay active so it won't be hard for me to get back to exercising. My wife and family have been very supportive. I felt bad for my mom because she already lost my sister to cf nearly 32 years ago. She died in the hospital the night before mother's day. She was in denial about my cf like I was. We had a good cry then started to be more optomistic by the end of our conversation. I like my doctor too. He went to med school at the university of Wisconsin where I was first diagnosed and where my sister died. He has worked with several people that have cf and has connections with the cf foundation. He knows about treaments and how to "cut through the red tape" so I can get them. He is already checking with my insurance to see what they will cover so he can find ways to cover what the insurance won't. He seems very proactive and wants to please me, not the horrible insurance giants. I just want to thank everyone who responded to my last posting. I recieved some invaluable advice as well as support. I am learning now to accept my disease and to "play the hand I've been dealt", as my dad would say. Good luck to all and I hope to hear from some of you from time to time. I need the support and I think I can be supportive too.

Ta Ta For Now
Doug
 

JazzysMom

New member
I think considering that you are 40 thatt moderate is till pretty damn good. Its just a notice that CF is going its usual path of progression & you must stay on top of things.
 

nikkig

New member
Doug,
It makes me more and more hopeful reading your story and knowing my niece and everyone else with cf has a chance. Your 40, that is fantastic... I just started on the forums and you seriously made my day today. Living that long with cf and you didn't even have the technology and knowledge that they have today. I am happy to hear you only have moderate damage to your lungs...sounds like you have alot to hope for. Good Luck with everything. Nicole
14 month old Niece Alexis w/cf
 

anonymous

New member
Hi Doug!

Thank you for your update. I have been thinking of you. Your pulmonologist sounds wonderful. Having a good relationship with your doctor is so important. The ct scan will be very helpful along with sputum cultures and blood work up. Once all the results are in and a plan of action is decided upon you will mentally and physically feel better. It was good also to read that you and your mom had "a good cry." together. We all need them from time to time but I am sure you will both be feeling so much better once you are in the routine of taking care of your cf. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Wishing you all the best and please let us know how you are from time to time.

Janet 47 CF
 
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