I went from being very active to being very sick in a short amount of time.
In July of 2003 I started coughing. From the coughing became more persistant & more frequent, my chest always hurt, so I ended up going to the doctor's several times. I was told I must have bronchitis or pnuemonia and I was given several types of antibiotics over the period of 6 weeks or so, with no relief of the symptoms. By mid-September I was much worse and one of my aunts said she didn' t believe the doctor was doing her job, so my aunt sent me to her doctor. That was on Friday September 19th. This doctor ran a bunch of tests and even though that perhaps I had whooping cough. One Monday afternoon I had spoke with this new doctor and she said if I wasn't feeling any better or breathing any better she wanted me to go to the ER. So as soon as Gary got home from work he took me to the hospital. From there I was admitted and so began my story.
I was admitted with shortness of breath and coughing. When admitted my oxygen saturation was 64. I underwent a full battery of test over the next several days. Blood work, CT scans, X-rays, echocardiograms, a Bronchoscopy, biopsies & LV functions for blood clots. I was in the hospital for 12 days, with IV Steroids being treated for Hypersensitivity Pneumonitis. My oxygen levels improved as well as my breathing. I was placed on Prednisone, antibiotics and pain medication then released from the hospital. All the while my pulmonary doctor (Dr. Wong) was still running test and getting results. He tested me for just about everything you could imagine and then some. He went threw my work history and tried to find something anything he could attribute to lung problems. But every test came back negative. I was tested for Lupus, bone cancer, lung cancer, and allergies to everything including my birds. You name it I was tested for it.
In November I underwent a lung biopsy. I was in the hospital for 5 days then sent home to await test results. Again doctors thought possibly cancer, but they needed to find out for sure what was going on with me. Surgery went good, says the surgeon. They ended up cutting 4 places, gathering 7 pieces of tissue for biopsy, and once to place in a chest tube. My oxygen dropped and they decided from then on I would be placed on oxygen upon my release from the hospital. When I returned home the hospital had the oxygen delivered to my home. It was a very humbling experience. I bet I cried for an hour seeing all these machines and tubes all over my home.
On December 3rd we went to the doctors office to get my test results from the biopsy. At that time Dr Wong assured me that I did not have lung cancer, but rather a lung disease called; Interstitial Lung Disease with Pulmonary Fibrosis. Unfortunately there is no cure for this disease. Doctors can try to slow the disease down with treatment, oxygen and medications. Which is what they tried to do for me. I was placed on another medication called Cytoxan, its main use is for cancer, but it's also used with Prednisone to try to slow down the ILD. The side effects of the medication are horrific. So Gary & I just prayed that God would protect me from as many of the side effects as possible. I did end up getting very sick. Threw up all the time, lost a lot of my hair. (it got real thin & was patchy, but I didn't end up bald) Since November I've lost just about 60 lbs. The doctors watch my blood counts, liver enzymes and lung size very closely. I have blood work done about every 3 weeks and CT scans every 3-4 weeks.
In February I had another Bronchoscopy. You can read about this procedure on this site, but I wanted to let you know what it did for me. When I had this done (twice) the doctors goal is to go in, look around, scrape the walls, clean out the lungs, take tissue for biopsies and rid me of blistering bubbles that grew in my lungs. Where did they come from? Or, How did they get there? No one knows, but they hurt I assure you.
Having this procedure done does give temporary relief of coughing and allows me to breathe easier. But it's a quick fix and doesn't last very long. The doctors can't keep redoing this procedure however, because when you touch the lung sacs and walls it causes scarring. Which when you read about the disease on this site you will note that it's all about scaring of the lungs.
From the last Bronchoscopy the results showed that even with the doctor's best efforts and medication the disease was out of control and Dr Wong recommended that it was time to go to another specialist in Iowa City. So Gary & I headed to The University of Iowa Hospital to see a Dr Geist there. She basically told my husband and myself that there was nothing she would have done any different then Dr Wong did here in the Quad Cities. She would have did everything he did and in the order that he did it. She then went on to say that there is also nothing they could offer for us either. We had two choices: 1. We could try to keep me comfortable and continue doing what we are doing now, oxygen & medication. Let the disease run it's course and eventually I would die. Or 2. Get me on the transplant list and hope for a new set of lungs before it was to late. Gary asked the doctor how much time were we talking here?? And she simply answered him she should have been on the transplant list yesterday. The doctor then told Gary & I to go home inform our kids what was going on, get my house in order, make finial arrangements, hope for the best and plan for the worst. So that's what we did. We came home had a few meetings with our family & friends. Told our boys. Made funeral arrangements. And waited to hear from transplant hospitals.
The first hospital to call was Loyola in Chicago. And we made an appointment to go to there hospital to be evaluated for candidacy for lung transplant. But upon learning that I was un-ensured by my husband, and only having disability insurance from the state. Loyola informed us that they would not be able to help us because they did not accept Iowa Medicaid. My husband spoke with them on the phone several times. I would have had to be on a pre-pay case. And just the 4 days of testing to see if I am even a candidate for the 10-12 hour long surgery of a transplant would be around $43,000. And the transplant would need to be paid in full before I could even go on the UNOS (United Network of Organ Sharing) list. So needless to say Chicago was out. So again we waited by the phones for another hospital to call us. Then the phone rang and it was Wisconsin, then Minnesota, then St. Louis. So here is what I decided to do. After talking with the doctor here, we decided that after the whole Loyola incident we would go see Wisconsin, because that appointment was made first. Minnesota sent me a packet and I just held on to it. After several days of making the appointment with Wisconsin, St Louis had called, so I kept the appointment with them as a back up, just incase something happened with Wisconsin.
The second hospital we went to was in Madison, The University of Wisconsin. But this was just a doctor's evaluation appointment. We took all of my CT scans, X-rays & Biopsy slides with us. There was a whole team of doctors, nurses, pulmonary therapist etc. that we seen that day. They seemed to want to be very thorough in their findings. And informed Gary & myself that they seen something other then ILD & PF on the biopsy slides. Gary asked them If I had been misdiagnosed & did I in fact have ILD & PF?? Both doctors in Wisconsin agreed that yes, I did have this too, but they see something other then that. I asked What did they see?? but they wanted to run a battery of test to see what was going on and what all was wrong with me. So they never did answer us at that time. What they did tell us was. On one hand (there prognosis) was that yes, I had PF and my lungs were sick, but not with the urgency that Iowa City had expressed to Gary & myself. So I asked Would we still run the 4 days of test to see if I even qualify for a transplant?? Dr Neralla answered us As of right now he didn't think I would pass the test, and they were placing the transplant on the back burner until they further decided what all was wrong with me. Talk about frustration. Now I have this doctor telling us to wait on the transplant. Then Dr Meyer informed us that on the other hand I might in fact need a transplant but for now there was more pressing things that needed to be fixed in my body. Said the shape my heart is in, I'd surely die of a heart attack before my lung killed me. So these two doctors decided to start all over. They want to draw their own conclusions from their own test. So I had 18 test tubes of blood drawn as well as two smaller tubes. The people drawing my blood were very nice. I just teased them that I wanted a cookie & some juice. But the guy working on me said it was just under a pint so I should be ok, to just go get something to eat. So a few days went by after we were home, and Dr Meyer called us. He informed us that a few of the test were back but he thinks I have a fungus growing in my lungs. Again surgery can't fix it, so he informed us that he would be calling in another prescription for me, an antibiotic. And informed me that I would more then likely be on this for the rest of my life, or until I had a lung transplant. I have an appointment in Wisconsin on May 21st. But by then I will have already been to St. Louis and back, so I will keep you informed if I keep the appointment in Wisconsin or not. Here was what I felt was the problem with Wisconsin. I go there for transplant evaluation. They said not right now, lets see what else is wrong with you. So we wait for test results. Then they don't want to see me for another 2 months. So I was very nervous that Iowa had stressed an urgency to us and they were just dismissing it. So I was very very glad that Gary & I decided to keep out appointment with St. Louis and we leave on the 25th of April. The medications I am on at this time are: Prednisone 60 mg. (steroid), Cytoxan 50 mg.(cancer/chemo), Prevacid 30mg.(stomach), Bactrim 800/160 tab. (antibiotic), Zithromax 250 mg.(antibiotic), Promethazine 25-50 mg. (nausea),, I also have some pain medication prescribed, but I don't take it unless I absolutely need it, most the time I take Tylenol (pain med is Lortab 5/500). I've recently had more medications added and they are: Amitriptyline 25mg x2 @ bed, Prempro 1 daily, Actenol 35mg once weekly, Temazepam 50mg, Tramadol 50-100 mg every 4-6hrs, Neurntin 300mg x2 daily, Xopenez HFA 2 puffs, Zyflo 600mg x2 daily, Hydrocodone-Guaifenesin Syrup 1tsp @ bed, Ranitidine 180ng @ bed,. Albuterol or Duoneb inhalers & nebs. as needed, Blood sugar supplies, test stripes & lances. Oxygen 3-4litres while sleeping w/ by-pap & 2-4 litres w/ exertion-while oximeter/O2 level is 90 or below. So that's my story so far, thanks for reading about me. Please check back frequently my Medical Updates pages have been & will be kept updated.
