Waiting…

When you have a chronic illness waiting is part of life.  Waiting to get better, waiting/holding steady or waiting to die.  Yep, I said it.  It’s a part of my reality and when I have friends waiting for lungs and others who are not candidates for transplant or don’t want to go that route who are basically waiting to die.  Maybe you could call it “living to die.”  Whatever it may be, it is life. Continue reading

CF Clinic day

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

A bunch of jumbled thoughts

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

Depression; It’s real

I received an article via email titled “Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis.”  The first line of the article is the following, “Cystic Fibrosis (CF) is a life shortening disease, however prognosis has improved and the adults with cystic fibrosis live independent lives and balance the demands of work and family life with a significant treatment burden.  They administered 3 standardized questionnaires to 67 CF patients aged 18-30 years; Medication Adherence Scale, Major Depression Inventory and CF Questionnaire.  One third of the participants reported systems of depression. Health-related quality of life scores were especially low on vitality and treatment burden and symptoms of depression were associated with low health-related quality of life.  High depression symptoms scores were associated with low adherence.  All of that mumbo jumbo means that depression and CF go hand in hand.  The higher the rate of depression, the lower rate of adherence of treatments and meds, etc. and vice versa.   Continue reading

Week of transplant evaluation events

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…

If I didn’t have CF

What if I didn’t have CF?  That is one open-ended question.  This topic for this post has been on my mind for a while now.  I just didn’t know how to go about writing it and then there was the whole coughing up blood thing that got in the way.

The “what if I didn’t have CF” question/statement goes way back to childhood.  I think I am just going to start to list things and elaborate when needed. Continue reading