I had a CF clinic check up yesterday and all is good. My lung functions are up 3% to 36% from 33%. They said I sounded good and looked good. My BMI is great at 24, yes I have some extra weight to help fight off infection. When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection. Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess. If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading
The first bit of news is that my dad is here to visit for a week…yay!!! He was able to be here for my CF clinic day so he was able to meet the team, or at least most of them. Everyone that came in my room seemed to be surprised seeing him and not my husband. hahaha
Today was a good clinic day. First of all, I actually made it to a check up appointment and I didn’t have to make an appointment before for being sick. I have been having good days and bad days as per my normal so I was curious how my appointment would go today. Continue reading
I called my nurse today and asked for the obligatory 3rd week of IVs. 14 days never seems to get me over the hump. Although, I would love to be needle free tomorrow, that will have to wait another 7 days. Continue reading
I managed to get myself up and out the door for 2 doctor appointments. I had a very hard day yesterday, emotionally and physically. I finished my Effexor taper the day before which brought on the emotional bad day of crying spells out of nowhere, rages, screaming/yelling out of frustration, brain zaps, can’t find the right words for things, wobbly, dizzy, etc. Physical symptoms are non productive cough which sucks. I can’t sleep for more than an hour at a time it seems. I can’t get comfortable. My anxiety is through the roof. Yada yada yada yada. Continue reading
I hope I can write this and let it make sense because it is all jumbled in my head…. It feels like a game of ping pong with my thoughts in my head. Hmmmm let me divide it into topics….hahahaha 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…
3am = coughing up blood time I guess. I coughed up about 15-20 cc. My CF Doctor came to see me around 8am and decided he wanted to do a bronch to see where the blood was coming from. I went down for the bronch at 9:15am and I was back in my room by 11:30am. He said he didn’t see any active bleed areas. His next thought was that it was drainage from my sinuses/nose. He looked and said he saw some blood there. Continue reading
Yesterday (5/5/16) was good ol CF clinic. Nothing spectacular to report there really in the sense that we didn’t change anything or add any extra tests. My PFTs (lung functions were) basically the same. My FEV1 was .93 L/ 31%. My first 2 attempts were identical at .89 L/ 30%. If I were a healthy (NON CF) Shannon the predictable FEV1 I should get is 2.96 L. That is based on my age, gender, height, weight and race. Continue reading
It was great to have my sister and aunt here for a few days. They got here Wednesday afternoon and once we had some girl talk we decided to go for pedicures. Thursday was mom’s birthday so we were off to mom’s favorite Japanese steak house for lunch. After lunch we were just out and about. I had to cut our outing short because my stomach was not treating me nice and I needed a good breathing treatment, not just on my travel nebulizer. Continue reading
I have people asking how I am and wanting an update. I wish I had more news to share, good news at that. I still have the really bad pain on my right side. I can pinpoint the pain and push on it and it hurts. The past few days they have been working on pain management, what pain med regimen works best and what timing works best. All I have to say is, they haven’t figured it out yet or the pain is too stubborn and doesn’t want to be controled Haha. They have been trying pain patches as well, with no luck so far. I have an unusually high tolerance for pain meds. Unfortunately, It usually takes more than you would think it should to work. It’s a pain in my side that isn’t being dulled that is the problem. Continue reading