On December 15th I became disabled and no longer allowed to work. I receive Social Security Disability. And with that I will receive Medicaid insurance threw the state of Iowa. But it will only cover about 40%-60% of the transplant. Depending on what it is. Like hospital stay is covered more then medications & supplies.
It's official I am on the Transplant List. I am about 12-15 months wait & as long as the disease stays as is... or continues to go at the slower rate it's turned into, the transplant team doesn't foresee any problem with that time frame. They (at this time) didn't agree with Iowa-Cities time frame of 6-10 months. Rather that they will address it every 6 months and go from there. They do not want any of my medications changed at this time. They are in total agreement with everything my local doctor (Dr. Wong) is doing here in the quad cities. I do have to have my labs & CT scan's done more frequent then every 3 weeks. They would like them every 2 weeks. I am to continue with Pulmonary Rehab until I get my new lungs. I have to see a few more doctors and get a few more things checked out, but it's all standard testing for transplants. Like a full physical, mammogram, dental work (if needed has to be done before transplant) stuff like that. So here is what all I've done the past several days. Please pray for my friend Stacy. She was just beat upon our arrival home. She is wore out from getting up very early, going to bed late, & lets not forget pushing me around in a wheel chair for 4 days solid.
Sunday, drove the 4 1/2 hours to St. Louis. Checked into the hotel where the Apria Oxygen people had already dropped off my supply for the week.
Monday: drove the 5-10 minuets to the Huge Hospital (I was overwhelmed at the size) Arrived at the Transplant Office at
7:15 am to be handed our schedule for the next 4 days. And sent off to all of our appointments. Mind you that nothing was right next-door. Stacy had to rush most the time to get me to the next appointment. But I was never late once.
7:30 Bone DEXA scan
8:00 Blood Test (13 tubes this time) Urinalyses Chest x-ray
8:30 RVG scan (I had never heard of this before. I was given a shot of some radiation stuff, sat for 20 min then given another shot of the same stuff. It was a big fancy x-ray machine that was checking my heart. I had to lay still try not to cough for 5 minuet intervals and do it again for a total of 4 sets of pictures)
9:00 EKG
10:00 met with a social worker "Rebecca"
11:00 Contrast CT scan (they hurt my arm when inserting the IV for the dye) short break & I finally got to eat a little something and have a drink!! Woo-hoo!!!
1:00 met with a dietician "Molly"
2:00 Pulmonary Rehab (was suppose to be a 6 min walk turned unto over an hour. My O2 wouldn't level out, kept dropping in the 70's. The Therapist ended up having me on 15 liters of O2. They have since raised my O2 to 5 at all time now. I was on 3 1/2 - 4. I wasn't happy to be at 5 already but what do you do? They thought part of the problem was circulation in my hands (they were cold) so they placed the monitor on my forehead. I hadn't had that done like that before but it was ok. Still didn't get very good readings, but got what they needed.)
3:30 Pulmonary Function test (went about as good as the one I had here 2 weeks ago, failed)
5:00 p.m. got back to the hotel.
8:00 Liver Ultrasound (they said my liver looked good but said I had tons of gallstones, just what I need, I laughed & told the doctor "one organ at a time please")
9:00 met with the financial coordinator "Tricia" (she told us everything looked good, but to continue doing the fundraising efforts we have already started. She informed us that we would need approximately $1,000. - $1,500. per month for just living expenses once I move to St. Louis. As well as our share of the med bills & my anti rejection drugs will run about $1200-$1600 per month. I do have medi-caid insurance now and that will cover a huge portion of the bills but not all of them.)
10:30 VQ scan (this test was to see how my lung volume function was doing. It consisted of breathing threw a very heavy mask that resembled one from the movie "silence of the lamb." Very freaky & hard to breath threw. Then I was given another shot of radiation & placed in front of an x-ray panel. It took live/moving pictures while I was breathing. I thought it was very cool. Took from several different angles & positions.)
11:45 met with the Pulmonologist (Dr. Hachem) (he informed us that there was a possibility that I could have a whole in my heart. Which for me was horrifying, now they are again worried about my heart. But he explained that with the drastic drop in my oxygen levels that he didn't wonder if the blood wasn't flowing properly from the heart to the lung. Because my VQ test was ok, wasn't great just ok. So he ordered a few extra tests that were not on my original list of things to do. A saline injected echo of my heart and more blood work. And sent us home for the day.)
2:30 left the hospital, almost back to the hotel when I asked to use Stacy's cell phone to call Gary. That's when we noticed that her phone was missing. So we turned around & went back to the hospital. It was found right where she thought she laid it, at the doctor's office in the waiting room. So we were very happy she didn't loose her phone. We also tried to go the Arch that afternoon, but it was sold out. So we grabbed something to eat and back to the hotel around 6-ish.
Wednesday: Arrived at the hospital around 8:00 a.m.
8:30 got signed in for my Cardiac Catheterization.
9:00 a nurse ran me a few floors down stairs for my Echo. (I had a normal echo done, they decided from the lung biopsies that it was to dense, they weren't getting the pictures they needed. Gave me some shot of something made from eggs.. LOL Then they did some more testing. Then I was given the shot of the shaken up saline (they needed bubbles in to trace where it was going) Finished the test then back upstairs to the 14th floor for my Card Cath.
11:00 EKG
11:15 I Started my allergic reaction meds for the dye (I'm allergic to shell fish)
prep'd me for the procedure. Stacy finally got to come back to my room for a while. Then a tech came and got me for the procedure. They told Stacy it would be about an hour till she would hear something from a nurse about how I was doing 3 hours later.....
The cath lab was extremely busy that day. They also had a few emergencies come in too. During my procedure (which was only suppose to take 20-40 min. ended up being about 2 hours) I had some bleeding problems, nothing major everything is fine now, and my oxygen dropped in the 60's again. So we were a little freaked out for a while. But I'm fine it's done & everything is ok. Little sore & bruised is all.)
3:30 The nurse pulled my tubes out of my leg (OUCH) and it bled pretty good again for a bit. Then I was told I couldn't move my head or my right leg at all for 2 hours.
4:00 Moved back into the room, and they let Stacy come back again. She informed me she was getting worried because of the time. But they explained everything to her and assured us I was doing ok now, I just had to be watched close for a while. They sat me up around
4:30, gave me a lunch tray & Lots to drink... I was so thirsty. You have to know/remember every night so far I wasn't aloud to eat or drink after midnight because of the test. So by 1 everyday I was thirsty & hungry... LOL And on this day I didn't get anything to eat or drink from Midnight till 4:30... So the drink was very welcomed!!!!
5:15 I had to get up, walk a little, and go potty. LOL
5:30 they let me go back to the hotel where I slept all night!!! I woke up a few times & Stacy had made me some pasta & got me drinks.. But then back to sleep I went.
Thursday: We got to sleep in!!! & I couldn't sleep. LOL I thought Stacy would kill me, but she was ok. I got up around 5:30 she got up around 7.
8:00 I got to eat breakfast for the first time!!! (wouldn't have been a big deal but the hotel had a nice, free breakfast &I wanted a waffle, it was good too!!)
9:00 or about.... Stacy & I got cleaned up, packed up, loaded the car, checked out of the hotel....
11:00 Lab work (11 tubes this time) chest x-ray Urinalysis (I got a pregnancy test.. LOL can you imagine.. I just laughed... ohh I am not pregnant just incase you wondered. You should have heard Gary when I told him they were testing me for that... It was priceless!!!)
12:30 - 2:00: Long wait, walked around the hospital. Read our books, sat in the café.
2:30 Assessment Meeting!! Met with Dr. Hachem and the Lung Transplant Coordinator (Masina) They informed us that in fact I did NOT have a whole in my heart. I was so relieved. I was placed on the Transplant Waiting List for a Double Lung.
3:30: Left St. Louis (Barnes Jewish Hospital) heading for Home!!! Many of you knew that my blood count has been very high, and my liver-count also. Well the liver is still elevated but not as drastic as it was. But now my blood count is way low.. Makes no since to me, I haven't changed a thing... But now my count is 2.8 (probably wont mean a lot to most of you but it's low. Nothing to be worried about just needs to be watched.) So there you have it, my week in a nutshell. I assure you I am doing fine. My arms & leg is a bit sore, but nothing major at all!!! Thank you all for your prayers & concerns!!! I will update you again when I know something different. It's May 1st!!!! Happy May Day!!! 21 days till the Benefit!! I hope you will all be able to make it!!!
All updates are in chronological order.
