Now that I am actually getting to the point of listing it is sinking in how sick I really am. I am sleeping about 12-15 hours a day and even more if I take a nap. You may say how is that possible or wonder why I am sleeping so much. My body is very worn out just from working to breathe and then there is the coughing on top of that. My body is sore from all the coughing I do. Continue reading
I arrived to St. Louis Sunday evening. My sister joined me early Monday morning since she was coming from Kansas City and me from Knoxville, TN. I must have someone (caretaker) with me at all my transplant appointments, it’s part of the deal. Luckily I have people to rotate, haha. Continue reading
Day 1: There was a group on 3 of us doing the evaluation testing this week. I was the only CFer which meant I was the youngest by at least 10-20 years. The other 2 were being evaluated due to Pulmonary Fibrosis and COPD (from his job). We were all given our information, schedules and sent on our way.
Day 1 Started bright and early. Up at 6am to get ready, do a treatment and the usual morning routine except that I was NPO (no food after midnight) for labs first thing. I had 9 tubes drawn after 2 sticks of course. They needed a UA (urine sample) but I couldn’t produce since I had already gone before leaving the hotel for the hospital. I was able to drop a sample off later in the afternoon along with my sputum sample. I also had a 12 lead EKG and a chest X-ray in the morning. We had about 3 hours to kill until our next appointment so we went to Einstein Bagel to grab a bite to eat. The hubs worked on some homework and I watched a documentary.
Next text was a VQ scan. A ventilation–perfusion (VQ) scan is a nuclear medicine scan that uses radioactive material (radiopharmaceutical) to examine airflow (ventilation) and blood flow (perfusion) in the lungs. The aim of the scan is to look for evidence of any blood clot in the lungs, called pulmonary embolism (PE). For this test I had to inhale gas mixed with oxygen through a very tight mask and sit in front of an X-ray machine so they could see the gas do its thing. Then they injected radio active stuff into my hand (thick sticky stuff) and I sat in front of the same X-ray machine while it did its this again.
Next up was pulmonary function tests. It was the full gamut, gas chamber (aka the test where they shut the door of the glass testing box for one of the tests) and all. My fev1 on their machine was 38%. That is up for me from what my clinic back at UT shows. I would be curious to see what they would show right now to see if they are comparable, every machine is different. My numbers are up which is good. After the PFTs was the 6 minute walk. I did decent and didn’t need my oxygen. My sats stayed above 90 the whole time. I did however get short of breath which seems to be a given.
After the 6 minute walk we had a mentor meeting where there were 2 folks that were post transplant. They talked about the process and what it’s like from the patient side. Then we were finally done for the day! We got back to the hotel room and the mister went to work out while I rested for a bit. We later went to dinner at Bar Louie. Then it was in for the night.
Day 2: First up was the RVG scan. A radionuclide ventriculogram (RVG) is a test that provides information about how well the heart can pump blood. During the test, pictures are taken of blood flowing through the heart. The amount of blood pumped with each beat can be measured during the test, which is one way to see how strong your heart muscle is. First, I was given anothe radioactive injection but 2 injections, 15 minutes apart. They attached a 3 lead EKG machine to me as I was laying on the table. The. They positioned the X-ray machine to view my heart from 3 different angles for 10 min each. I fell asleep on the table. I was one tired chick this morning.
Next up, chest CT (without contrast). I was probably still glowing from the RVG scan, hahaha. Then we met with the dietician. Nothing new here since I see a dietitian every clinic appointment and I know the drill. Eat a high calorie, high fat diet and add drink supplements when I can. My weight is right on point for my height as is my BMI. I have room either way as far as weight goes, not that I want to or need to lose weight, for transplant purposes.
Last but not least, the appointment with the pulmonolgist. He asked a lot of questions about my health history and such and also told me some new things like I’m a little anemic, I have gallstones and I also have bronchistasis which is widening of small airways due to infection and infection hangs out in there. There’s a list of things I need to get accomplished like; get up to date on ALL vaccines boosters included, get up to date on ALL female matters (pap and mammogram), get started in Pulmonary Rehab, get iron infusions (for the anemia), stay up to date on eye exams and dental exams and I’m sure there was more. I will receive a letter with the list of things to do.
He examined me and then had the transplant talk. He said that we did the right thing by getting the transplant process going now. With CF I have a gamut of other health problems besides crappy lungs so with that comes some more risk. For instance when someone who has pulmonary fibrosis/COPD/etc. when they get a lung transplant their disease is gone and cured because their disease was in their lungs only. Now when it comes to CF, I have pancreatic issues, have had the acute kidney failure and elevated liver enzymes before so with that comes for risk later.
Right now the benefits of lung transplant don’t outweigh the risks due to where I am at health wise. The sicker I get the more the benefits will outweigh the risks. He encouraged us to keep up what we are doing by fundraising and getting everything situated and lined up for when the time comes. I will see him again in 6 months. If I have a significant decline I can be seen before then. If I’m doing well and don’t feel like I need to be seen then, I can wait a few more months. But generally I will be seen every 6 months to see where I’m at on the transplant spectrum at that time. The sicker I get the more often I will be seen at Barnes. I won’t have to relocated closer to Barnes until I am listed for transplant. I am able to do my follow ups by coming here when needed and am able to do pulmonary rehab at home.
It was all good news. Yes, I will need a lung transplant at some point but not yet. So we have some time. I’m sure I will adapt to my new baseline/norm as I always have and I won’t feel so worn out all the time, or at least that’s my hope. With all that said, one major exacerbation and decline and I could be listed quickly after they try ton”tune me up” as much as possible to make sure they have fought off all that they could first.
There was so much information in today appointment with Dr. Y (the pulmonolgist) so my head is spinning a bit. I’m sure I missed something in this post. Feel free to ask any questions you have in the comments (I have to approve your comments first so they won’t show up until I do) or by email at LTLHOOK@yahoo.com.
We will see the social worker tomorrow morning and then we are free to head home!
Until next time…
Just wanted to fill you in on some of the important doctor appointment dates that I have been waiting on. Of course they are not soon enough for my liking but I shall deal with it.
Before I even get into these appointments, YES taking care of me IS a full time job that doesn’t pay well, however my reward is my family. Continue reading