Re: Re: New to this board

[Guest guest]

i am way behind in responding/welcoming patti and darlene, sorry you need us, but glad you fournd us

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: New to this boardTo: Breathe-Support Date: Thursday, May 28, 2009, 4:19 PM

>> Hi,> I have recently been diagnosed with IPF, like within the last fiveweeks. I immediately went to the internet to find out all that I couldand got way more than I bargained for. I managed to freak myself out,get angry with everyone and have cried myself to sleep a few times. Ifeel so helpless. I have always been blessed with pretty good health. Nomajor illnesses and always strong enough to get through just aboutanything. I am 55 years old and have learned that there is very little Ican do about changing other people, places and situations but havealways been able to control what is going on with myself. I feel like

mybody has just turned into my head and heart's enemy. I am married, andhave a wonderfully big family with 5 kids and 7 grandkids. You know Ihave been blessed. I really have no excuse for feeling as negative as Ido... it really is not like me and I'm not loving this side of me.Acceptance is difficult. I have only been feeling poorly for about sixmonths. I started noticing that I would become a little winded when Iwould climb the stairs at work (something I do at least 5-6 times eachday). My boss was concerned that it may be something with my heart (shejust experienced congestive heart failure 4 months ago) and she keeppushing me toward the doctor until I decided to have it checked out.Good news! My heart is in great shape! After the nuclear stress test andbefore the heart catherization, I got a terrible migraine headache andhad to go to the emergency room. They did fix the headache but afterthey

put that little finger oximeter on me they didn't concentrate onanything but my O2 levels. I spent a week in the hospital being stuckand re-stuck. I had CT, MRI's a bronchoscopy and the heart cath, as wellas what ever else they did. They made the diagnosis and sent me home onO2, which I'm on pretty much 24/7. As long as I'm sitting quietly, notdoing anything more than breathing my O2 levels are ok, but if I standthe levels drop right away. I am starting a pulmonary rehab this week,hopefully the exercise will help me cope a little better. I havereturned to work, I have a desk job, and I carry my O2 with me. I'mhoping that I can count on you all to remind me that it's not over untilit's over and help me feel like I do have some say in how things go.>> Thanks for letting me go on...> Darlene>Dear Darlene,I read your letter and felt a little like I was reading about

myself.I'm newly diagnosed-though have been having exercise or stress inducedshortness of breath for about 6 months. My new doctor sent me for astress test-my heart was fine but when walking up a hill on thetreadmill my pulse ox dropped down in the 80's. I compensated shortlyafterward, and he pushed me to check it all again on the treadmill andit did the same thing. The next thing ordered was a PFT, which I didpoorly with. After that a high resolution chest CT, which confirmed thefinding of pulmonary fibrosis. I've seen a local pulmonologist. Hewants me to see Chapman, a lung specialist at Cleveland ClinicFoundation in Cleveland, OH. He also said to have a bronchoscopy andbiopsy if he orders it. Needless to say I feel stunned with all thisinformation, overwhelmed to the point that I can ony read so much aboutthis disease and then I have to back off. I think that is selfpreservation. I'm 53

and I would like it if this would all go away. Iwant to live a long and happy life. I have grandchildren and morehopefully on the way. I want to see my daughter get married.I've had Sjogren's for about 13 years-with eye and mouth dryness andarthritis aches head to toe, treated with Placquenil and Prednisone.I've been able to live with that, but I never dreamed this would happen.We don't have any history of this in my family.Now to top it off, I have to have a thyroid biopsy, and possiblethyroidectomy. I've been treating hyperthyroidism with Tapazole for oneyear. The CT showed increased nodules on my thyroid.To me it seems the finger is pointing at Sjogren's as the culprit,whether that information will benefit me or not time will tell.Some days are better than others. I'm not on O2. My six minute walk testI stayed in the high 90's. I'm not bragging, I'm curious how much time Ihave

left at this level. I'm thankful for all the information that thegroup is providing. I still have not told my kids. My husband andbrother know.So thanks for any new information in advance.Pattis