CF Happens

Sometimes in life, CF happens…pun intended.

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  • A Long Day Of Antibiotic Allergy Testing

    My appointment for the antibiotic allergy testing was 4 hours long! 😳

    I did get answers about what antibiotics are ok for me to use. I tolerated Zyvox, Zosyn, Cefepime, Bactrim, Cipro and Azithromycin. I already take Azithromycin on Monday, Wednesday and Friday for its anti inflammatory properties, NOT for an infection fighter. My “go to” IV antibiotics currently are usually Zosyn and Cefepime. Those two antibiotics show as “sensitive” when they use them to treat what I grow in my sputum in the lab, meaning they should work on the pseudomonas that’s in my lungs.

    With that said…I will NEVER kill all the pseudomonas that is growing in my lungs because my body is constantly producing the thick sticky mucus that’s in my lungs as well as other organs. I can’t get rid of all the mucus in my lungs, therefore they will always have pseudomonas in them. When I get new lungs all of the pseudomonas that’s IN my lungs go with the bad lungs. However, culturing pseudomonas post transplant isn’t uncommon because it lingers in the body, for instance in the sinuses and airways, etc..

    When I get “CF sick” (a lung exacerbation) meaning, I have a change in my symptoms like increased cough, coughing up more junk, change in my sputum color, fevers, increased fatigue, etc that’s when we use antibiotics.

    There were two antibiotics, Amoxicillin and Meropenem, that I am definitely allergic to and would only be used as an absolute to last resort option. As well as another one, Vancomycin, that I’ve previously had a bad reaction/adverse reaction to.

    1. Amoxicillin: The doctor’s note says, “if clinically indicated in the future, I recommend an alternative agent. However, if it’s absolutely necessary, I recommend consultation with allergy team and consideration of multi-step dose challenge inpatient versus desensitization.” She’s basically saying, don’t use Amoxicillin unless it’s my only option. Haha

    2. Meropenem: The doctor’s note says, “I recommend an inpatient two step desensitization (10% dose, monitor for 15 minutes, then 30% dose, monitor for 15 minutes, then remaining 60% dose and monitor for 60 minutes) to Meropenem if clinically indicated in the future.” This is a desensitization approach in hopes that my body will accept it and not react to it.

    3. Vancomycin: The doctor’s note says, “patient experienced significant itching and erythema with Vancomycin, previously called “red man syndrome.” Not an allergy, rather it’s representative of MRGPRX2 activation of mast cells. I recommend slowed infusion rates 1000mg/100 minutes or less (may need as low as 500mg/100 minutes) and pretreatment with Zyrtec 10-20mg orally or Benadryl 25-50mg orally 30 minutes before infusion.”

    All of those fancy words and letters mean that my body has a histamine response to Vancomycin. This means my body makes it known that it’s not happy when I get Vancomycin with my upper body turning bright red and constant crazy itching. She’s saying if I need Vancomycin in the future, I need to be pre-medicated 30 minutes prior with Zyrtec or Benadryl to stop the histamine response as well as slowing the infusion way down with the hopes that my body wouldn’t react.

    We also addressed the previous reaction I had to a Kenalog/Zylocaine injection into my foot way back around 2004, maybe. It was a rather unpleasant reaction, so of course I asked about it. I started to look like Will Smith in the movie “Hitch” 30 minutes after the injection with the hives and swelling of my lips and face. It did start to make its way down into my airway as I was on the way to the hospital. She said since I’ve tolerated other “caines” (numbing meds like lidocaine) and hydrocortisone, prednisone and solumedrol, that it was the Kenalog that caused that reaction and NOT the Zylocaine.

    Of course I said, “who is allergic to a steroid, but of course it’s me.” She said that CFer’s are special when it comes to the way our bodies react to different things. Why thank you…I always knew I was special. Sadly, it’s in the medical field but hey, special nonetheless. Haha

    I know that was a lot of big medical terms but I wanted to make sure I explained things well. Also, it helps me to put all of the information here so that I can refer back to it. Haha

    Until next time…

  • 3 Month Pre Transplant Check Up

    First stop was for labs and chest X-ray. All labs were good and my chest X-ray was unchanged.

    Next up…6 minute walk. I walked 1,222 feet today with no need for oxygen. I believe I walked around 1,050 feet last time, I’d have to look back.

    Next up…lung functions. My FEV1 was 0.82L/31%. I’m holding steady.

    Last stop for the day…appointment with the doctor. I’m doing well and holding steady. I don’t have to come back for 6 months!! That will be a nice break from every 3 months. Of course, if I need to be seen sooner, I will call them.

    Thursday I am seeing the allergist to do antibiotic allergy testing. They want to narrow down my antibiotic allergies because I’m allergic to quite a few. They want to make sure they have a list of antibiotics that can be used post transplant. There may be antibiotics that I’m allergic to that could be a last resort choice if needed. They could possibly try to desensitize me to them along with pre-dosing with Benadryl to make my body not react to them if I were to need them in the future.

    I’ll update after my appointment with the allergist on Thursday.

    Until next time…

  • Finally Saw The Rheumatologist Today

    I have been having arthritis pain for a very long time. The pain got much worse when I was finally able to stop needing Prednisone all the time back around October, I believe. It took a while to get into the rheumatologist for a new patient appointment but today was the day!

    I liked the doctor. While he was examining me, he was squeezing my joints in my hands, wrists, knees, shoulders, etc. (ouch!), he noted joint swelling as well as tenderness/soreness. He was able to make a quick diagnosis. I do, in fact, have Cystic Fibrosis Related Arthopathy (Arthritis). It mimics rheumatoid arthritis but it’s not really labeled as rheumatoid arthritis. It does have the same joint pain and swelling, etc. Due to it being related to CF, it makes this a different class of arthritis in a sense but mimics and looks like rheumatoid arthritis.

    Here is the treatment plan…He prescribed a medicine called hydroxychloroquin (Plaquenil) 300mg once a day. This is a rheumatoid arthritis medicine. Unfortunately, this medicine doesn’t start to work right when I start taking it. It can take up to 3-6 months to start to feel the full effects of it. So fingers crossed that it does in fact help and I don’t have any of the noted side effects. As you know, my body doesn’t like to play nice or by the rules, so here’s to hoping that my body accepts it and it helps! What’s another 3-6 months of pain, right? I mean, I’m in some sort of pain all the time anyway.

    He also prescribed a different anti inflammatory medicine called nabumetone (Relafen) 500mg twice a day as needed for the arthritis pain. I am stopping the anti inflammatory, Meloxicam, that I was taking for the arthritis pain. It’s not doing much anyway.

    I have an appointment to see him again in 3 months to see how I’m doing on both medicines. Obviously, If I have any issues before then, I will call and get an appointment before the 3 months.

    Until next time…

  • Winter Is Too Long…Mental Health Check In

    Winter is my least favorite season. I hate cold weather. I want to sweat, not shiver! I dislike the lack of sunshine. Thankfully, here in East Tennessee we don’t get much snow. When we do get snow, it is usually melted away within a day or two.

    Now for the reason I’m pointing this out…this winter has seemed to be dragging on forever. Winter is my least favorite season for another reason. Winter is when my depression gets hit really hard.

    I get the “winter blues” ( seasonal depression) starting around mid November or so. This of course is on top of regular old clinical depression.

    The winter months have been brutal this year. Yes, I have “good” or “decent” days where I have more motivation to do things and those days I do all that I am capable of doing. Then there are the not so good days. On those days getting out of bed, doing my breathing treatments and holding the couch in place all day is what gets accomplished. I’ll try again the next day.

    This winter, there has been hard life things that have happened to throw a major wrench in my “decent” days.

    November was a shitty month, to say the least. November 4th we had to help our last fur baby, Otis, cross the rainbow bridge. He was 15.5 years old and had developed doggie dementia and progressed rather quickly.

    He had defied the odds before when he was around 10 years old. He was diagnosed with Immune-Mediated Hemolytic Anemia (IMHA). IMHA is a severe, often fatal autoimmune disease. Thankfully our vet caught it quickly. He stayed in the doggie ICU for about a week and received a blood transfusion. During this whole ordeal, it was discovered that he also had the beginnings of lymphoma. So to say he defied the odds is an understatement. Losing Otis was really hard.

    Then on November 20th we lost one of our best friends. My husband served with him in the Air Force here in TN. They moved back to TN when he retired. My husband was able to hire him on where he worked at the time. I can’t really even put into words how hard his loss has been in many ways. So much for pushing through November. It was more like trying to swim in mud but all I was doing was sinking.

    December was my 3 month pre transplant check up. They wanted to see me back in 3 months again. Being seen every 3 months verses every 6-12 months is a little heavy for a number of reasons.

    January 19th was the 10th anniversary of my mom’s passing. January has been a hard month for me for the past 10 years for the obvious reason. I don’t even have to be purposefully thinking “oh it’s January, here it comes.” January comes in like a wrecking ball and there’s no stopping it.

    January 26th, I lost a good friend to cancer. January was not a good month either.

    Then February 1st comes…my 46th birthday. I tried my best to “shake off” the bad January vibes and celebrate. It was a weird birthday this year. The friend I lost to cancer, her birthday is the day after mine. That may have had some to do with it feeling off this year, among other things.

    I’ve obviously been dealing with other medical crap as usual…bad arthritis pain, lower back pain where my surgery was, the cold weather making all my aches and pains worse, carpal tunnel pain, bad acid reflux, trying to find a new pancreatic enzyme because the Creon I was using changed manufactures and stopped working, being tired and worn out often (some of which is depression related and CF related), the list goes on.

    With all that said, I am still trying to swim through the mud as best as I can.

    Until next time…

  • CF Clinic Check Up Day

    Today’s clinic appointment was a good check up!! My lung function was (FEV1) 33%. At my last CF clinic appointment in November, they were (FEV1) 30%. I am holding steady in that respect, so I’ll take it. My lungs sounded good as well.

    We really only had one thing on the docket to talk about. I am pancreatic insufficient due to CF. When you are pancreatic insufficient, your pancreas doesn’t produce all of the digestive enzymes it needs to digest the food you eat so you can actually get the nutrients from the food. Without getting too descriptive…if I don’t take any digestive enzymes when I eat, the food goes straight through my system, it doesn’t “pass go or collect $200” (Monopoly reference haha). Which means, I get NOTHING from it, no nutrients. I end up with a bad upset stomach and on the toilet shortly after eating. No fun all around.

    Ok…now that I set up that lovely image…the manufacturer of the enzymes I have taken for a very long time (Creon) changed. Unfortunately, with the change in manufacturers, they stopped working for me. I have tried a few different options with no luck so far, We are onto yet another brand, Pertzye, for me to try. The pharmacy has to order it because it is not a regular med they keep in stock. I’m hoping this one does the trick because I am very tired of my gut being all jacked up. It’s been months of this. I’m 100% not a fan of this “crap.” Pun accidentally intended. haha

    I believe that covers everything from today.

    Until next time…

  • 3 Month Pre-Transplant Checkup

    Surprisingly enough, it’s already been 3 months since my last transplant checkup. We were up bright and early…ok maybe not so bright, but it was very early.

    First stop was for an echocardiogram. They did the echo without contrast and then with contrast. Thankfully it was an RN that came in to start an IV for the contrast. I mentioned that I have a port. He said, “you have a port? Well then we’re using your port!” Hallelujah! Haha

    Next stop…labs and chest X-ray. All is good with my blood work. There were no changes in my chest X-ray as well. We grabbed some breakfast and wasted time until my next appointment.

    Next up…6 minute walk. Today I walked 1,087 feet. The goal is to walk at least 1,000 feet. My oxygen saturation was fine during the walk so I didn’t need any oxygen. I also didn’t need to take any breaks during the walk. During my walk in September, I walked 1,116 feet with no breaks and no oxygen needed. So it’s not a big difference between the two.

    After a gap in appointments that allowed for time to rest, it was onto the next one…chest CT without contrast. There were no big changes in my CT.

    Second to last stop was for lung functions. My FEV1 was 0.72L/28%. They are down from the last time I was here. The last time I did home spirometry on December 4th for my follow up after IVs, they were 29%.

    Final stop on today’s, very long appointment schedule, was with the transplant doctor. She said that my X-ray and CT showed the same damage in my upper lobes that it’s been and most likely some left over stuff in my lower right lobe from my recent exacerbation. I need to get my butt in gear and actually start exercising. I have to work through the fear of not being able to breathe when I exercise. The really bad asthma attack I had in March solidified my fear of not being able to breathe.

    Many people ask me, with my lung function this low, why am I not listed for transplant yet. The low lung function number does NOT automatically mean it’s time for me to be listed. There are A LOT of factors that come into play when making the decision to be listed. Yes, my lung function is really low but I’m still able to do a lot of things. I do need A LOT of breaks to catch my breath while doing things but I push myself to do as much as I can. I know that someday I won’t be able to do those things, so I will do them until I am unable to. If the frequency of my CF exacerbations increase, then that will be another factor to consider along with other things. So to answer your question, no 28% lung function does NOT automatically mean I’ll be listed for lung transplant.

    I understand that if you aren’t familiar with CF or lung transplant, this seems stupid. There is a reason though. The goal is to use up the lungs I was born with for everything they have to give. Post transplant is a whole new ballgame in many ways. So I am “A OK” with holding off as long as I am able to.

    I’m set to come back in 3 months which will be March.

    Until next time…

  • My Method For Staying Organized With All The Supplies While On Home IVs To Make Them Go Smoothly

    I had a CF friend suggest that I share how I store my IV supplies along with how I prep my doses after I showed her pictures of my system. haha.

    My first step when my supplies are delivered…I open ALL 972 of my saline and heparin syringes so that I get really frustrated and angry at those stupid wrappers (that RARELY make into the trash can because of the static cling) all at once instead of with every dose. The saline and heparin aren’t in sterile packaging so you can open them all at the same time and don’t have to wait until it’s time to do my doses. For me, opening them all at the same time helps with how I do things. (Picture below for proof that those stupid wrappers go EVERYWHERE)

    Next step…I put all of the saline, heparin, huber needles (port needles), dressing change kits, Tegaderms (I don’t use the cheap Tegaderm that comes in the dressing change kit, they irritate my skin), auto claves, end caps, etc. in the drawers where I keep all of my IV supplies. I also keep my non refrigerated inhaled meds, extra Pari nebs, travel nebulizers and much more in the same drawers. (Pictures below to show how I organize my supplies along with a picture of the all of the drawers. I got the drawers from Costco. Unfortunately, they are no longer available…sad Shannon)

    Now, onto how I do my doses. This is what works for me. It may not work for everyone but I thought it may give people an idea for a way to do things. I have quart size baggies with the dose times written on them with magic marker. I reuse the baggies over and over again. I don’t toss them each time, that would be silly with how many doses I have and how many times on IVs. I put 2 saline, 1 heparin and an end cap in the baggies so that all I have to do is put the dose in and go. It makes it super easy if I’m going to be gone at my dose time. I can toss it in my purse and go. Even when I’m home I still use the baggies so I can grab it and head to the couch so it’s there when the alarm goes off that it’s dose time. I have 2 days worth of baggies with dose times that are loaded with what’s needed for each dose on the kitchen counter ready to go. If I’m on more than one antibiotic, I use the same system. I just put in the number the of saline I need. If you are not familiar with SASH that you use when on IV antibiotics, here’s what the acronym stands for…SASH is saline, antibiotic, saline, heparin. If there is 2 antibiotics you add in an extra saline between doses. (Pictures below)

    The antibiotics are stored in the fridge. I take them out before the dose time so it gets to room temperature. If you aren’t sure how long the dose is stable at room temperature, Google is your friend. Of course, the IV pharmacy tells you to take your dose out 2-3 hours before it’s time to infuse…however…most antibiotics are stable for much longer. I personally take out my next dose when I get finished with the current dose with most antibiotics I’m usually on. The baggies I showed are for every 6 hour doses (obviously haha). Depending on the antibiotic…the doses are every 6 hours, 8 hours, 12 hours or every 24 hours.

    I think that covers it. If you have questions, ask away. You can comment on this post. Don’t worry when your comment doesn’t show up right away. I have it set to where I have to approve the comments to be posted. It’s a way to stop the spam comments. You can also send me an email at LTLHOOK@gmail.com.

    Until next time…

  • ‘Tis The Season…For IVs

    I woke up Tuesday morning coughing much more than normal. My cough at least was productive sounding and not tight sounding (asthma inflammation type cough). I woke up feeling like utter crap Wednesday morning. I canceled the appointment I had that morning and slept until noon. I just so happened to already have an appointment with CF clinic today, so it was good timing.

    My lung functions were 29% and 30%. So they are stable compared to the 31% I had at my last appointment, 6 or so weeks ago. With my increased cough, increase in sputum production (I should say, actually having any production at all for once), fatigue and over all blah feeling we decided to go ahead and start home IVs. I will be doing IV Zosyn every 6 hours for 14 days.

    We are NOT doing any prednisone right now. The goal is to stay off of prednisone for as long as possible but especially until after my appointment with pre transplant clinic in 5.5 weeks. They wanted me off prednisone if at all possible. I made it this far, by golly I’m pushing through! Yes, I am VERY wheezy but it’s “manageable.” It’s the tightness combined with the wheezy that makes it very hard to breathe. I’m NOT crazy tight at the moment. *fingers crossed*

    Next order of business…the amount of arthritis pain I’ve been having. I’ve just been dealing with it for quite a while now but it’s gotten pretty intolerable. So I finally caved and asked for something to help. The mornings are the worst. My hands and fingers are very stiff and I’m unable to make a fist. I have trouble gripping things, opening water bottles, typing on my phone, etc. They hurt like HELL!!! I am going to try meloxicam (an arthritis oral med) to see if it helps give me any relief. I’m also being referred to a rheumatologist for further evaluation.

    Since I was getting my normal labs drawn that I always do when I start IVs, they added in inflammation markers to see where they are. One stick in each hand and nine tubes later, we got all the blood needed. For those wondering…my port was not accessed to get labs drawn from it. Also for those wondering…the only place I have left for blood drawls are my hands or some random places they find when they have to get creative. The bends of my arms are ALL scar tissue from years and years of being stuck. If you stick a blood drawl needle in that area on either arm, the person “trying to” drawl blood will feel the pop of scar tissue as will I and I basically can hear it. It’s so much fun. NOT!

    If you didn’t know, there is such a thing as CF related arthritis. CF is the disease that just keeps on giving. Just add it to the list of issues I have. I’m just lucky like that. CF is not only a lung disease. It involves many aspects of the body.

    Here’s to hoping that I start feeling better soon.

    Until next time…

  • Caregiving Is Selflessness

    The topic of caregivers and caregiving has been on my mind quite a bit lately. I’ve come across different reels or posts on social media regarding caregiving. They have shown what it takes to be a caregiver and what they sacrifice as well.

    Being the sick person, I am so thankful for my husband for being the great caregiver that he is to me. As I’ve said before, he prefers being called a “CFers husband” verses a “caregiver.” His reasoning in saying that I…”I just do what I’m supposed to do for my wife. That’s just what a husband does.” No matter what you call it, I’m thankful to have him by my side in my life with this CF journey.

    It is not lost on me the mental and physical load he endures being my person. If you are not a caregiver you really could only imagine the things that go through a caregivers minds when it comes to their loved one who is sick. In a sense they can deal with the stages of grief while their loved one is still here. You can imagine the roller coaster that can be and how physically and mentally draining that is.

    Stress might be one of the top emotions they feel. They worry about the future or the lack of a future, the outcome of different testing or procedures all while feeling a lack of control in it all. Of course they also feel guilt. They often feel like they aren’t doing enough or doing the right things to help their loved one. I’ll say this, as the sick person, sometimes there’s nothing you can do to help except to be there showing/reminding the sick person that you are there and that you love them unconditionally.

    Many times caregivers feel guilty or selfish for taking time for themselves. I tell my husband all the time to take his me time at the gym or time with his buddies. I don’t want him to lose himself while taking care of me. If he doesn’t take care of himself, he won’t be able to take care of me the way I need. That’s not to say that there hasn’t been times when I just want him to be with me because I’m struggling mentally or I’m just scared with where I’m at health wise. My husband is my safe place, my “safety blanket,” so to speak. He helps keep me calm in stressful situations surrounding my health.

    I know there are plenty of times that being a caregiver is very frustrating. Of course sadness, anger, exhaustion, burnout and anxiety come along with that as well. If you’re a caregiver and you feel like you’re losing yourself, take time to feel the feelings and don’t push them to the back burner. They will definitely come back full force when you least expect it and most likely when you are needing to be at your best. Do something to help you deal with these feelings and emotions. Obviously, I’m a big advocate for counseling. It helps so much having an outside person to give you insight and ways to cope and deal with your feelings and emotions. It’s not worth being angry, irritable or absent a lot of the time.

    Being the sick person and needing the help from others is not an easy thing. You don’t know how much I would love to be able to work again, I miss feeling like I had a purpose in the work force. I feel guilt knowing I need help. I don’t want to need help. I would do everything in my power to be a “normal healthy person.’ I would absolutely love to be able to walk more than a city block without needing to stop to catch my breath when we’re out and about. Same goes for being able to climb flights of stairs without stopping, just to name a few things.

    The fact that I know the amount of care/help I’m going to need is going to continue to be more and more, does not make me happy. I feel guilty that I cause my husband, or others who has jumped in to help out when needed, any stress and to be exhausted.

    I also carry a guilt that I know I’m going to die one day most likely due to CF or complications of transplant (rejection), etc. I know people are going to hurt and be sad over my passing and that makes me sad. Please don’t do the typical thing and say, “we are all going to die one day. I could get hit by a bus.” Yada yada, I’ve heard it all. When you are born with an incurable genetic disease, it’s kind of a given what the end looks like for me. I feel like I need to try and “prepare” people for when I die. I don’t want people to hurt but it’s a given that it will happen. Mostly, I feel so guilty/bad that I will one day no longer be here with my husband and kids. It’s just the harsh truth folks.

    There were years that I didn’t want to get close to people or let people get close to me because that meant that was another person that would have to deal with my death when it happens. Now, I’m an open book so that people with CF, families of CFers or even other diseases can try to understand what the person with CF is really going through and feeling. Trust me, I don’t have it all figured out…not even close.

    I’ve been in a funk with my depression for a month or more. Some days are better than others. I know being the caregiver of a person who deals with depression is difficult. If you, the caregiver, don’t personally deal with depression or mental health issues in general, it is foreign to you and you don’t know what to say or do. Honestly, just say, “I don’t know what to do to help you.” Just be there for them in whatever way they need you. Trust me, if I could make my depression go away with a snap of my fingers, I would have done that a LONG time ago. I keep on pressing on, some days I am able to push harder than others.

    To bring this post to a close, I just wanted to say that caregivers deserve all the recognition for being selfless and willing to care for their loved ones. Your sacrifice is not lost on the people you are caring for. We just don’t really have the words to express our love and appreciation for all you do for us. THANK YOU!!! November is National Caregivers Month, but I didn’t want to wait to share what’s on my heart.

    Until next time…

  • Yearly (Pre) Lung Transplant Clinic Check up

    Transplant check up days are always long. I just have to say…I appreciate my husband so freaking much for being my person! I am so thankful that he’s with me through everything when it comes to my health. He’s my safe space and my “safety blanket,” so to speak.

    First stop was for labs and chest X-ray. All my labs looked really good. My chest X-ray showed my normal volume loss in my upper lobes.

    There is some change in my upper left lobe. There is a slight increase in nodules, compared to my last chest X-ray that I had last September. The nodules are most likely attributed to reoccurring infections and inflammation. The right upper lung is unchanged.

    Next stop was for lung functions and an ABG (arterial blood gas). My ABG was good, within the range it should be. My first test was 30% (FEV1), my second and third tests were both 28% (FEV1).

    Next stop on the fun day of appointments was my 6-minute walk. The goal is to walk more than 1,000 feet. I walked 1,116 feet. I didn’t need any oxygen and I didn’t need to take any breaks. All great things!

    Last stop was clinic to see the doctor. We talked about all of asthma issues I’ve been dealing with. He’s not as convinced as my CF doctor back home is that it’s mainly asthma causing the issues. He did say with Tezspire being my 3rd asthma biologic I’m trying, it should give us a better idea if the eosinophilic asthma is a/the major culprit.

    It could just be the trifecta of CF, asthma and bronchiectasis all causing issues. With the decline in my lung function as well as not getting my lung function back up to what was my baseline/normal of 32% (FEV1) shows a descent enough decline. I’ve been averaging between 25% and 30%.

    He would like for me to go down from 5mg of prednisone to 2.5mg of prednisone soon. Then of course work at getting off prednisone all together. It’s not an ideal thing for me to be on prednisone long term (pre transplant).

    When I am totally off the prednisone, he wants me to do lung functions and a 6-minute walk to see where I’m sitting at without the prednisone in my system. He also is curious how the Tezspire will perform without prednisone in my system.

    He wants to see me back in 3 months. When I go back in 3 months I’ll do all the normal things I do with every time I have my (pre) transplant appointments which are labs, chest X-ray, lung functions, 6-minute walk and see the doctor. He wants to add in a chest CT in as well. Hopefully we can go back to every 6 months after the next day of appointments.

    I think that covers everything. It’s a good thing I have my husband at these appointments with me because I remember half the stuff. Haha

    Until next time…