My Journey with Pulmonary Fibrosis

Me....one year later !

Mon, 29 Sep 2008 19:44:16 GMT

Where has the last year gone? I know I've been busy, but this is crazy to lose a whole year without posting a single sentence. This time last year we were working really hard on our First Golf Tournament to raise funds and awareness for PF. This time this year we are working really, really hard on our second Golf Tournament which is October 17th! Anyone wanna sign up and play?!

I know that after the tournament last year we were completely exhausted and thrilled that the Golf Tournament went as well as it did. My husband and I then packed up and went to Yellowstone for two weeks to relax in the snow and among all the beautiful mountains and wildlife. The problem was he started out the trip tired and with a small cold which I then caught and became sick, really sick for the rest of the trip. There was no medical center or medical help of any type there that time of year and being stubborn I decided I would rather be sick than have to drive a day away or more to find a doctor. So by the time we did get home I found out I was getting over pneumonia :( I actually was sick the next six months off and on, who knows why.

All along we continued to develop our charity, help patients and work to raise awareness of this awful disease. We continue to lose members to the disease and we also continue to welcome new patients into the group. I have been feeling a little guilty because I am the only one of the original, charter members still around, except one guy who had a transplant.

I guess I shouldn't have even thought about that type of thing, because after appointments and tests last week I found out my numbers are way down, the doctors said they are concerned and want to refer me to the Transplant Team. For six years they have told me I wasn't a candidate, so why now?!! I have to get my mind around this. One last report came in today, the results from echo, measuring the pressure in my lungs.....it looks very bad. Pulmonary Hypertension @ 66. Not good.

I am sorry I haven't updated in a while, lately since July I have spent 19 days in the hospital with pneumonia and Crohne's flair-up then we had Hurricane Ike which was really bad and we had no electricity for nine days! What an experience!

I hope to keep things updated here, I will try harder! I promise!

Jan

Going Places, but left my mind behind :)

Thu, 27 Sep 2007 16:59:55 GMT

Man, this summer has blown by....I can't even blame it on Hurricanes or the such as we have only had one small scare! We have worked since March on completing application papers to take our Support Group and place it under an umbrella non-profit corporation and we finished the work up in early August, submitted it to the government and in record time, with no delays or re-writes necessary, they approved it within a week's time! Now we have an approved 501(c)(3) Non Profit Corporation called Pulmonary Fibrosis Association of Texas, Inc.!

My husband put in approximately 1500 hours in writing the forms and by laws, the rest of us put in about 12-50 hours in Board Meetings to help with the information and it is a done deal! The only thing that dampened our spirits was that we lost another member last week to this awful disease. For the first time it really frightened me. She was ok one day and the next she couldn't breathe. She was in ICU for almost a week, refused the vent and begged to go home. Her husband found a way to get her home, she was there 10 minutes and left this world.

Many contributions have come in in memory of her already.

We jumped into our first fundraiser, a golf tournament that will be Oct. 5th, next week. I had no idea how much there is to get one of those things going, but we managed to get a car dealer to donate a new mustang for a hole in one! It should be fun, but I don;t want to work on another one :)

Gotta get ready for a MD appt....wish me well with that...the bone pain is so much worse....now on something called Opana ER and it isn't working:(

PFT results

Wed, 27 Jun 2007 04:18:37 GMT

What a month. Last week I was scheduled for the CT Scan and actual PFT study. Prior to that I had had blood work and sputum cultures done trying to identify the virus/bacteria causing me to be so short of breath and the cause of the cough. The blood work came back within normal limits...no elevate white count....heck...even my Hct and Hmg were normal for the first time in maybe a year. I was actually hoping for an infection this time....well maybe the CT would show a pneumonia that the doctor just couldn't hear through the hardened tissue.

The day came for the CT...I waited all day till it was time to go and get it over with...NPO four hrs prior, etc. etc. I spent an hour on the bed of the scanner while they stuck me six times trying to find a vein for the contrast to go into. Usually I give them 2-3 sticks then I call it quits or find someone else to try. I just wanted these test results so badly that I was more patient. The sixth one was it though....no vein and no more patience. There was no one else there that could try and I wasn't letting them go to the neck or leg, so we had to cancel the test. I have an indwelling port, but nine times out of ten these labs say no one there can access it :(

I called the doctor the next morning and had them work on finding somewhere else I could go to get the Scan. I also went to the office for the Pulmonary Function Tests that day and while I was there they made some calls and got me right into another diagnostic lab for the CT....that day!! Success....they got the vein and were alot more professional too. I was determined to work as hard as I could to at least meet the same results as my last PFT, six months prior. I was very surprised to find it was harder than ever to blow air into those machines and pant and do everything else that is required, but I did it as hard as I could. Then the six minute walk....without my oxygen :( I only made it 900 steps in six minutes and stopped once. My po2 stayed around 84-85 as an average. Another insite into what is going on. My last walk I had come down from 1300 to 1100 steps...so this is another decrease.

Today I went in for all those results. My total lung capacity dropped 13 points :( That is more than it has ever dropped. FEV's dropped slightly and the DLCO dropped three. My total lung capacity is now 2% of predicted. That is pretty low...and I am apprehensive. He wants to repeat the sputum culture/sensitivity and see if maybe there is something new since two wks ago growing in the lungs, since he did hear more noise in the lower lobes today. He diagnosed me with Bronchitis today and wanted to try a triple antibiotic regimen, but I am allergic to the family of two of the drugs (Rocephin) and something else, so he told me to take 750mg of Levaquin, wait for the culture reports and he will talk to me Friday about what he finds.

He is hoping that the cough will go away and any infection will clear up on the increased antibiotics so maybe he can get me back to where I was a month ago. He said he didn't want to talk, today, about what it means as far as the PF goes, if the antibiotic doesn't work. I already know what he doesn't want to say...the disease has taken a big downward spiral and there isn't much room for any more loss of lung capacity.

The funny thing is, I tried to talk to a couple friends about this....I just wanted to tell someone I was worried...everyone just wants to say they are sure it is an infection and I will be fine. I know they have the best of intentions...but I want to be heard and I want to be able to talk about the "what if" which is actually a 50% possibilty.

No one listens or hears....

The upper respiratory infection that wasn't :)

Sat, 16 Jun 2007 01:08:43 GMT

For three weeks now I have been fighting an infection. It started with scratchy throat, a little sinus symptoms so finally went to the doctor. He wrote a prescription for an antibiotic for me to have on hand, when and if more symptoms showed themselves. Two days later I had it filled because I was still running fever. It was for a Z pack. I finished it up in the five days and still had the same problems, only a little worse. Last friday I called and talked to the doc, told him I thought it was URI because I was starting to cough a little more and we decided to try another antibiotic....I was sure I would feel better in two to three days on Levaquin. I hate that antibiotic, by the way, it causes nausea, so I take it at bedtime to sleep through the side effects. Ha...that is almost funny as I don't sleep that much anymore despite all the meds I take at night to help me sleep :(

Here we are seven days later, went in to see the doctor because the cough is so much worse and only have three more antibiotics to take. I was afraid that tomorrow, being the weekend, I might get caught with more symptoms and I wanted to be sure I didn't have bronchitis or pneumonia. He listened to my chest and other than the reduced air flow that I always have he only heard the crackles that Pulmonary Fibrosis cause....no congestion at all, despite all the phlegm and coughing I am doing.

He wrote up blood work orders, Cat Scan orders and a variety of other testing. His thoughts are that it is either pneumonia, hiding under some of the hardened tissue that he can't hear through or my Pulm. Fibrosis has taken another dive and has progressed further. I don't really know how much more it can progress, but I guess as long as I am breathing, it can always harder. I am just so tired of the coughing and ready for it to be GONE....soooo....short of my little complaint about it, there isn't much I can do but rest, cough, and be merry:)

Tomorrow will be better.....

Happy Fathers Day to those of you have children...aren't they a blessing! Then they just produce further wonderful blessings in their children :)

Tags: PF, Pulmonary Fibrosis, CT scan

Is it really this HOT or is it just me?!

Fri, 08 Jun 2007 01:03:39 GMT

I am having a very hard time dealing with the heat which we are having here in the deep south. We had a really nice, cooler than normal spring, but the last two weeks have been miserable. I have never had a drop of moisture appear on my forehead, never, ever until last year. This year it must be going to be worse. Now if I just cross the doorway, forget a "drop" it is like an instant tub of water has been doused on me. Or more like those football players pouring a huge tub of water over their coach at the end of a winning game/season...thank heaven there is usually no one to see me looking like they do! I did check into this symptom though and the doctor says it is a side effect of one of the pain medications. I begged him for something else to no avail. Apparently all opiate type meds cause everyone who takes it the same severe problems in the heat. My makeup washes off, my hair falls straight and limp, but the heaviness of the air and humidity too has the only really important problem and that is it is so much harder to breathe. So the only option is to not take the medication and be in unbearable, mind altering pain, or take it and be unbearably hot and "misty"....I don't want either one, but I really cannot take the pain, so the choice is made for me :( The medication by the way is Duragesic Pain Patch, 75 mcg, every 48 hrs. with Morphine for break through pain in between. I fought this medication for a year and had to give in to and accept taking it because I was literally going to lose my mind from the torture of the pain in my bones. The meds usually make it pretty tolerable.

It is so hot that I can water my flowers or yard in the morning and by 2pm the dirt is just as dry as if I hadn't watered in a week. Some of my flowers and plants are just burning up:( I don't know if that is because I haven't been able to keep them up with my hand surgery the last month or it is just the heat. The hand is still healing...

I hope it is cooler where you may be! If it is do you have a spare room?!!! LOL

What a month :)

Wed, 16 May 2007 19:51:21 GMT

It doesn't seem like so much time has passed since my last entry, yet other days it seems longer. I have had two hospitalizations since my last entry. In April I developed some increasingly by the hour abdominal pain and severe headaches. On the second day of it the doctor admitted me asap to try to see what was causing it. It was decided the ugly head of Crohns Disease was reminding it was still there. Crohns was the 1st autoimmune disease I was diagnosed with maybe 9 yrs ago now. It bothered me consistently till I was dxed with Pulm Fibrosis 4 yrs later. Seems my body started attacking every other organ and system sequentially till it hit my lungs and decided to stay there. Now it is starting the cycle again five years after getting comfortable in the respiratory system. This attack could have also been caused by doubling the dose of Cellcept two days before the pain started. My body has a hard time tolerating the therapeutic dosages of these heavy drugs. To be safe we went back down to the half dose to see if we can try up ping it again later to slow down the PF.

Then, four wks ago I cut my hand fixing breakfast one morning. Due to blood thinners we couldn't stop the heavy bleeding and rushed to the ER. That is a story in itself for another time! Due to the lack of care I received there, and in spite of dressing the cut every day and using antibiotics, the cut got worse vs better. I have a high pain tolerance but 2 wks later went back to my own dr. to see what was wrong with my hand and why the pain was so severe. Within 24hrs time the skin was turning black and a huge mass was growing out of the center of the cut. This was last week. He sent me straight to the medical center, 36 miles away, and called a particular hand surgeon he wanted to care for me. I drove myself there, as my husband had an important, time sensitive obligation at work that day, plus I do played the risk of the hand to him too! My daughter-in-law offered to drive me but I refused. Long story short, they went to work forcing my PT times down so they could operate asap and two days later the specialist opened up the hand, repaired the artery I had clipped and cleaned out the Cellulitis that had infected it all. I came home last Saturday, with my left hand bandaged, stitched and in a sling. I am typing this with one hand so if there are mistakes, please excuse them :)

I never realized how much one cannot do, easily, with one hand! Like make-up...fixing ones hair..even making a simple sandwich! I have to get dressed before my husband leaves in the morning and wait till he gets home late in the evening to change. If this were to be a permanent situation I know I would learn and adapt. I am so lucky it is not and have more empathy for those who do loose a hand! Seems because of my lack of or lowered immune system I am at risk for a simple cut to become life threatening.

We can handle that!

Daily Living

Sun, 25 Feb 2007 07:29:17 GMT

Seems I've messed up my one New Year resolution....to blog more frequently :( I am not sure many read my ramblings anyway, but I do enjoy thinking that there are some who do and may learn something from my words!

My excuse this time is my husband and mother-in-law was in the hospital at the same time, different floors, and I spent many hours this month going between floors trying to manage her dementia and medical condition in between the times I was with my husband ensuring he was not having a heart attack. There was good news in the end on that one....he definitely did not have a heart attack, just a rare new virus that emulates coronary symptoms. He was out two weeks then came down with visual disturbances....stroke?? No, but it was a tear in his retina, threaten loss of vision. He had to have laser surgery to correct the tear and he is recuperating slowly at home, thank goodness!

My PF continues to deteriorate though at a slower rate right now than it did at other times. They say that is the way it goes, slow, fast, faster then slow again. It will drive you crazy watching the numbers go down down down then regress a little. Giving you a false sense of hope until the next tests in three months. But so we go....never giving up just patiently waiting for the next regression! No new drugs to try, no new theories, just patiently wait!

Christmas Eve Eve

Sun, 24 Dec 2006 04:12:49 GMT

All the presents are wrapped, the shopping is done, the groceries have been purchased and my tree is still not decorated! Tomorrow is another day. In the haste and growing stress of checking my lists (yes plural!) I was sitting at a stop light and the definition of Christmas softly wandered through my mind. It isn't the shopping and the rush and hurry, it should be more simple than all that I think. I decided at that moment to reflect and keep ever present in my memory what it is we are celebrating and like someone else has said all along, the Reason for the Season. Yes, it is so exciting for me to see all the little ones in our family taking in all the lights, sounds and smells of our holiday home and especially them slowly learning that a wrapped box probably holds some new treasure for them to play with and they should tear into it with abandon, but instead of worrying the rest of the day about "getting it all done" I met my husband for lunch during his break in shopping, came home and rested and now I will make a Birthday Cake so all our little ones, that I am so lucky to have been given the time to meet and love, will start early in learning that the reason for the season is Jesus birth.

I hope everyone has a healthy, happy and fun holiday season :) I am going to take a break from Pulmonary Fibrosis and do that very thing!

Holidays, Dr. Visits, and children !

Tue, 19 Dec 2006 07:33:42 GMT

One week from today, Christmas will be fading away for another year. It will be over, for all intents and purposes, packed away for another twelve months! All the fun, the preparing, shopping, wrapping, getting the perfect gifts, all comes down at this point to be seven days away. The stress of it all! I still have a small amount of shopping to do, in between more doctor visits, babysitting little ones in our family, getting our home "ready" for the holiday meal....and oooops.....I haven't even started baking the cookies my adult children still look forward to every Christmas.....Moms Ginger Cream Cookies....I'll get to it somehow!

I wouldn't take anything for all the stress, the happiness, the excitement and ok.....a little fatigue thrown in for good measure! My first Christmas, after having had been diagnosed with Pulmonary Fibrosis, as I was putting stockings away, so they would be fresh and unwrinkled for the next year, I slipped something into each persons stocking that they would find on their own twelve months down the raod!

Oh, I cried as I wrote each of my children, my husband and grandchildren notes, from me to them to find the next year. I had been given such dire prognosis that April in 2002, it seemed almost impossible to hope that I would be around for the next holiday, so I planned a way to make it easier for my family to be able to have it without me there. I told each person an example of how they had blessed me, told them I would always be near, and how I loved them so much. Then I told each one how they had brought such joy to me in their lifetimes and cited examples here and there.....I could almost hear them laughing across the months as they were to read them the next Christmas.

Christmas 2003, 2004, 2005 and now 2006 have come to invite me to stay awhile still and I try to make each added one very special for my family, I'm so greatful to be able to still be here with them. I have those letters put aside, knowing they will be found one day, in the right time. But now, I try to keep enough energy to get through parts of every day, and often have to swoope down and pick up a two year old running to jump into my arms and my heart sings with peace and joy!

The doctor visits aren't going real well....seems I will soon have to have a ventilator of sorts at home to use off and on during the day when I need assistance breathing. I had been having some pain in my back, across the right lung. It turned out to be the diaphraghm. It is getting weaker and tired. The doctor checked it out and said my body is getting tired of working so hard to get oxygen to me and a non-invasive ventilator will help me not be so tired while forcing oxygen into my lungs with no help from me....that is the assumption anyway! We will see how it works :)

We are back, but before my update on the trip, I get to say I was Queen for a Day :)

Thu, 16 Nov 2006 09:23:00 GMT

I am trying to sit here a few minutes and write down my thoughts to share with you on a wonderful, undeserving, tribute this past Saturday. (My pain level is quite high at present, but I am going to try to write this)

We returned from Montana and Wyoming last Tuesday. I spent the rest of the week unpacking, gathering my notes from the trip and doing laundry! In between all that I tried to help a couple others from my lung group prepare for our PF Support Group Meeting on Saturday. They had offered to handle the meeting for me since I was going to be on vacation, wish I thought was very nice. In phone calls and email they pretty much let me know everything was done and I could just show up....that was most unusual as I have done the meetings for all of the last three years, so I didn't stress over it.

We got to the meeting on Saturday, and as we walked in everyone stood up and started clapping.....I thought they were just glad that we showed up, my husband and I ....then I noticed balloons, roses, everyone came up to hug me, there was a wonderful luncheon set out and name cards at place settings, cameras going off here and there. It took a little while but finally someone said to me that I was to sit under the ballons, which all said "Thank You!" and it became clear they were having this meeting for me and John. I found out afterwards though, my husband had known about it for two or three days ahead. I kept trying to hide behind him and he wouldn't let me! Once everyone had lunch each member and their family stood up and said in their own way, 'thank you' and mentioned a particular way they felt I had helped them in their walk with Pulmonary Fibrosis. There were 25 or thirty people there and I had to sit and listen to people saying such nice things, that was harder than one would think it would be. I had to fight tears much of the time because I never did anything that I did the last three years thinking anyone would ever feel like they had to thank me! I also thought of the members we have lost the last thirty six months and wondered why I am still there fighting, but I am glad I am, there must be others finding their way to us for solace and information. I was so humbled.

Afterwards my husband took me shopping a little and then had made dinner reservations at a wonderful steak place in downtown and we had a wonderful meal. After that we stopped in to a club we used to frequent regularly for dancing. He asked them to play "our song" and when they got around to it.....he held me on the dance floor and we tried to dance to it a while.

I really was Queen for a Day Saturday, it is held right up there close to my Wedding Day in significance and memory!

Just wanted to share that with you, as well as, say Hi, I am back again!