Lingering Suspicion

Last week, I finally admitted what I knew had been going on for a couple of weeks, which was that my lungs were once again producing thick disgusting stuff every few days. I sometimes sit on information like this until I'm "sure" it's what I suspect it is - in other words, when I'm not able to deal with it yet. I made an appointment and was able to be seen in lung transplant clinic on Friday. Though my regular doctor was not available, I was thrilled to be able to see another who followed me part of this last hospitalization.

Whereas often there are many floating pieces with my health that are difficult to tie down, this visit gave me some concrete answers to some major things that have been going on. That was certainly a treat!

• My muscle fatigue and corresponding shortness of breath sounded like classic anemia symptoms to the doctor. Completely agree. To address this, I'd already received a pint of blood on Thursday. And I'm starting on a magnesium supplement.
• The anemia was caused by the photophoresis, which explains why the fatigue had progressively gotten worse roughly since the time I started that. However, there's no plan to slow or stop the photo based on that at this time.

But, back to my lungs. My lung functions were up a little bit, which could be an indication that the photo is helping (lung function improvement is the line to measure photo success). However, my xray was a little worse than last time and tracked with the congestion I've been feeling. The doctor also expressed concern about my nutritional status since a couple of my general lab numbers were down and I'd not gained back any of the weight I'd lost this year. I've actually been eating pretty well (for me), so I wasn't sure what to say about that. In general, I'm rarely hungry and cannot eat a lot at once; making myself eat meals anyway has been a huge victory in itself and I'm sad it hasn't translated into better numbers.

Considering my antibiotic resistance and difficulty getting over my lung exacerbation this summer, the doctors are very protective of the small gain I've made in PFTs and do not want to see them drop. Because of this, we decided to start three weeks of home IV antibiotics using one of the two drugs I was on this summer. If I start feeling worse or do not feel improvement after one week, I need to be hospitalized again so that they can desensitize me to the second antibiotic the same as last time. If that happens, I intend to stay in the hospital for the duration as doing five infusions at home daily proved too much to handle.

A couple of other things:

• I had to postpone pulmonary rehab. I literally did not have the energy to both do that and walk my dog enough for her to use the bathroom properly every day. Since I was so anemic, it's no wonder!
• I have some stupid red spots on my stupid body that dermatology wants to do a larger biopsy on... This feels like another POINTLESS line of inquiry in the annals of transplant patient dermatological mysteries. This is scheduled for tomorrow morning, followed by picc line placement at noon.
• I will not be doing photo while I'm on antibiotics.
• I have a call this afternoon with my CF Legal Services lawyer to fill out the Function Report for my disability claim. Things are moving along.
  
• I've been making inquiries with estate lawyers to try to get a few of my own things in order.
• I'm running out of money again!! And I'm so tired of asking for help. I'm going to try to get some money out of my life insurance policy. If you can help, please do!
  

l

A New Direction

This entry is difficult to write, and it may be difficult for some of you to read.

What I have been living with for many months now - mostly pertaining to health matters, but also filtering down to everything - has been so incredibly difficult as to be emotionally unbearable most days. There aren't enough superlatives, upper case letters or bold fonts to express the jeu ne sais quoi the place in which I find myself.

I am anxious and depressed. I am tired in body, mind and soul. I am isolating myself from people because just making conversation takes too much effort to think about let alone to do. Few people know my "day-to-day," and while I know I need more people to be aware, to be among my circle of support, I have not been able to bring myself to open up.

My life - and the lives of many others living with cystic fibrosis, double lung transplant and an exhausting list of all the things that go with it - has been incredibly difficult. I have the tiniest capacity to tolerate or deal with all of the little fucking things that comprise my life, both on a regular basis and ones that pop up at steady, obnoxious intervals. 

Additionally, in the last several months, my mind has settled into my decision to not go through another double lung transplant (assuming I could get approved with a so-so kidney and the new super bacteria I'm culturing in my lungs) so it's not likely that the future gets easier.

What this means is that every ailment, symptom, bad test result and subsequent treatment recommendation is a choice that I am weighing differently than I may have in the past. Is it really worth it? I have come to realize that my capacity for illness, feeling bad, and other bullshit that life throws at you is finite.

The New Weekly Routine

This past week, I completed my third week of photophoresis and my first week of pulmonary rehab. The photophoresis has gone smoothly. I got a port, the treatments are a little over two hours long, and I haven't had any noticeable side effects. I get these done on back-to-back days twice per week at the bone marrow and blood cancer infusion clinic.

Pulmonary rehab, which I'm doing three days per week, has overall been easier than I expected. There are definitely challenging aspects, like when I'm five minutes into riding the exercise bike, cannot conceive of how I'll make it to 10 mins, and feel the urge to grab for oxygen tubing even though my oxygen sats are nearly perfect. Rehab seems shorter and more streamlined than the program I went through both pre and post double lung transplant. I am in a medical group with people who have all kinds of issues. So far, I've met a man who had his esophagus removed and a woman dealing with nephropathy (nerve damage) in her feet due to a side effect of chemo treatment. Every class, we walk on the indoor track, ride the bike, and do weights, balance, and stretching exercises. Each session the time, difficulty, and resistance is increased.

It's not difficult to imagine that having five regular appointments per week, three of them involving physical exertion, would be tiring. I expected that. What I did not expect is for my muscles to take so much time to recover. I'm not talking about being tired after a workout, I'm not talking about being sore the next couple of days. I'm talking about an internal fatigue in my muscles in which my legs feel deeply and undeniably exhausted and out of energy. It feels like, "maybe if I rest for an entire week doing absolutely nothing my legs will feel normal again." I try to remind myself all the reasons that my body is taking its time recovering from physical effort, such as chronic lung rejection and super bacteria hanging out in my lungs. In addition, I know that processing the emotionally charged decline in my health takes an enormous amount from my body, too.

So, there you have it.

8/8/22: Nathan and I's Two-Year Kidney Transplant Anniversary & An Update

 
Two years ago today, I received an invaluable gift from my brother: he gave me one of his body's organs -- a kidney! What a loving, selfless, and brave thing for someone to do. This act of kindness has allowed me a longer and better quality of life than I was otherwise facing. And I'm forever grateful.

Hospital/pneumonia update: Being home was extremely challenging for the first few weeks. Progress was slooooow and my overall health felt overwhelmingly horrible. Fortunately, little by little, I was able to do more, then do more without oxygen, and then finally do more without shortness of breath and acute fatigue. I was surprised and incredibly grateful for each development, as it was a very real possibility in my mind that I would never regain all that I'd lost. 

Now, I am able to do most of my usual dog walking with not too much stopping and very little shortness of breath. My IVs ended at the end of July. I had my pulmonary recheck yesterday complete with the first PFTs since my hospitalization in early July. While I'm feeling loads better, my numbers were only slightly higher than last time.

Chronic rejection update: a treatment called rATG ("rat-G") had been tossed around as a serious possibility after IV antibiotics were finished. However, considering the new super-resistant bacteria in my lungs and the low probability of success in slowing down or stopping chronic rejection with rATG (10%), my doctor and I agreed that it's. not worth the risk of wiping out my immune system's immune cells when there's a very real chance that suppression could also cause my antibiotic-resistant lung bacteria to blossom. We were fortunate that I had a good response to the IV antibiotics, but there's no guarantee how many times they may continue to work, and the effectiveness of other options is much less reliable.

Instead, we are going to try to get insurance authorization for a treatment called photopheresis. It's a similar concept to dialysis in which they remove your blood, treat it with a chemical found in lemons, zap it with UV light, and give it back to you. I would get a PURPLE POWER PORT inserted to do this. It's a slow and potentially long endeavor and goal is to encourage the presence of more "good" immune cells and filter out the "bad" ones. The time commitment can be cumbersome, but the side effects otherwise are minimal. Here's hoping!

Lots of love,

l

Clinic Recheck #1: One More Week of IV Antibiotics

Hello friends. 

I’ve been out of the hospital for about 10 days and the transition to home was much more difficult than I expected. I knew that I would be responsible for administering my medications, but I did not realize what a challenge every single other thing would be. 

Here’s my “perfectly adherent day:”

6 am - IV zerbaxa 

9 am - IV meropenem; albuterol/saline nebs and airway clearance; Advair inhaler; morning pills; sinus rinse; breakfast insulin; long-acting insulin 

2 pm - IV zerbaxa; lunch insulin; vitamins

9 pm - IV meropenem; albuterol/saline nebs and airway clearance; tobi neb; Advair inhaler; night pills; sinus rinse; dinner insulin

Other - EAT, exercise, secure portable oxygen, feed and pet cats, clean my body, change clothes, keep my kitchen clean, refill meds, work on disability paperwork, text friends, talk to family, schedule appointments, stretch, rest, relax… blog. 

Take the perfectly adherent day, which has not happened a singe time since discharge, add in a smattering of “other” tasks that need attention, but which I have not had the attention to devote to them, and you will quickly see how I have had not the time, energy or (frankly) the inclination to update my blog. I have one more week to go on these two IV antibiotics.

Symptoms

My main symptoms right now are still shortness of breath and fatigue. Even by the short trips between rooms in my house, I can tell that my breathing and stamina are a little better every day. However, they are merely the first grains of sand falling through the hour glass - I’ve fallen so far behind, become so deconditioned from six months ago that I’m constantly reminded of how long, slow, tiring and frustrating the journey before me will be. It’s too easy to minimize small progress, but that’s my lesson to learn right now: Stay focused, stay present, and keep trekking.

Hospital, Day 9

 I’ve managed to inch through recovery enough that the docs and I agreed to discharge me tomorrow. I feel confident I can manage most of my meds on my own at home, and I have a friend staying a day or so to help me with the house and everything else until my step mom can drive down from Cleveland to stay with me for a bit. I’m so incredibly glad she is able and willing to do this. Three cheers for Nurse Mary Ann!! (In addition to her caring nature and desire to help others, she’s a retired nurse  

I’m still walking and talking with difficulty from lack of breath. I’m resting and eating well, but as soon as I’m unhooked from my IV, I take the opportunity to walk some laps. KEEP PUSHING. It’s one of the few things I can control right now. 

It’s hard to tell if I’m “feeling better” than when I came in as my shortness of breath and anxiety became much worse while here. My chest does feel somewhat clearer, and I’ve gotten a lot of junk out! The anxiety has also been addressed adequately for now. I seem to be on the right track. If I didn’t think I was, I wouldn’t be leaving.

When the first antibiotic was started, I felt fevered and funky for a couple of days. When the second antibiotic was started, I had to adjust to having both on board for a couple of days. Today, the duration of my two antibiotics was moved from 3 hrs to 1 hr and 3 hrs to 30 mins in order to be easier for me to manage at home. I have not noticed particular symptoms so far, but I know my body still needs a lot of respect and caring from me as I continue to heal. BEST case scenario from treating this infection is that I’m able to reclaim some of my lung function and my shortness of breath and fatigue will improve some, too.

That’s all for now. 

L

Hospital Update, Day 7

 Hello friends,

You likely know what a fan I am of long-winded updates, but this will not be that. I'm writing this to start a central place to keep everyone informed with my situation, which has become quite serious very quickly. If you wish to follow, you may click the "follow" button all the way at the end of text on the right-hand side, and you will be automatically emailed new posts.

Summary: In January, my lung function started to decline. By March, I was officially diagnosed with chronic rejection. This is a terminal condition: some people last years, some last weeks. Treatment options have very low success rates. The only "cure" is getting another lung transplant. (Much more later on that.)

When I entered the hospital this time, my lungs were a little above the "transplant window," a decline which had happened rapidly happened since January; and, I was fighting off a bad infection with very resistant bacteria. Given that my number one symptom is shortness of breath, I was having terrible trouble "catching" my breath at times, no matter how zen I was. I'm frequently short of breath at rest. I am back on intermittent oxygen. I am doing four inhaled meds per day and airway clearance consisting of the vest, acapella, and dragon breaths. My lungs are constantly wheezy, and my chest frequently feels "super tight." I have started using a roller-walker to improve my walking. Breathing through a mask in the hospital is torture!! I am back to so much of a similarity to the things of end-stage CF that it's just eerie.

It took the teams four days to decide which antibiotic to use. After the one antibiotic was on board and being tolerated, and after waiting for more test results and team consultations, a second antibiotic was decided upon. In an abundance of caution, they decided to desensitize me to this second med - giving me a little bit at a time so as to ward off any potential allergic reaction. The process went smoothly.

There is much much more to tell, but this is a good start. I don't have the energy for more...

THANK YOU so much to those who have helped, called, texted, and contributed. It has helped so much. If you want to help more, here's what I need: you. Come visit, send a card or balloons or flowers. If your job allows, please see if coming to spend a few days with me may be helpful, or things like cooking meals, giving me rides, doing errands. Any way you could give of yourself is beautiful. I am going to need a lot of help and support in the coming weeks (months?). I will also unshamelessly accept money donations.

Address: 66 Justin Ct., Durham NC 27705

PayPal: laurapancoast78[at]gmail.com

Venmo: [at]Laura-Smith-895

Apple Pay: 919.605.7199

Anything else - please ask.

Unconditional Love

This post is about love. The love of yourself despite endless temptation otherwise.

I've always struggled with self love in the sense of taking care of myself, with prioritizing my own needs and well-being. Being diagnosed with ADHD a couple of years ago shed a lot of light on this recurring, doomed-to-be-repeated theme in my life. It explained my tendency to spring into action to take care of the latest mini-crisis at the expense of myself whether with work, life, or family.             

    "A recent study also found that the ADHD brain tends to produce more Theta waves than   average brains. Theta waves indicate a state of deep relaxation ... [an] over-abundance of theta waves can them great in a crisis." - ADD.org

When there's a crisis to address, I am calm, focused, and on point, whereas, during regular times, my brain can be a distractable force in need of taming. It doesn't help that the ADHD brain is constantly on the lookout for excitement, often to the detriment of ones own self-interest. (Things like eating well, sleeping the proper amount, being mindful and keeping stress at bay.) 

With chronic disease, self-care is even more important. However, so many other daily healthcare responsibilities - taking pills, doing insulin, monitoring this and that (which I refer to as the 'blah blah blahs' of life) - add an additional layer of challenge: it's as if the brain's daily care dance card is so filled up with the 'essential' care duties that it doesn't have room for the less-sexy-but-equally-as-important other kinds of care. Plus, those other things get kinda boring!

All this adds up to a massive headwind. Perhaps this is why self-care (and the opposite, overdoing it) is the life lesson I have been doomed to repeat over and again.

The Doctor Stuff    

Kidney biopsy: I am still waiting on the official results from my kidney biopsy the week before last. I did receive preliminary results that showed no acute rejection and an indication that cyclosporine (my #1 anti-rejection medication) may not be properly processing in the kidney, leading to a build-up or toxicity. This could be an explanation for my creeping creatinine. Stay tuned.

Is this bad news? Is it good news? I don't know. For now, it just "is."

Hematology appointment: I had my first appointment with a hematologist this week. I was referred to this doctor because of my low hemoglobin. I can now add another exquisite doctor to my list of Duke physicians. This guy really impressed me. Our appointment was over an hour long. He was very thorough, asking me about my body, head to toe; he also performed a full physical exam. I was sure to tell him of my mom's hematological issues, that I won't get into now, and which may or may not be relevant to my current situation. 

The next step was to get a new set of hematology-focused labs. We talked through most of the things  that the labs would test. Man, this guy really loves blood! He was very excited at the prospect of getting a sample of my blood under the microscope to look at, in addition to the information gained from the lab draws. Meanwhile, my hemoglobin has slowly been trending up! And, symptomatically, I've been feeling better the last two weeks. Things we are checking include:

• Thyroid
• Vitamin B12
• Other antibodies, acids, and hormones

We are hoping that these will provide some answers. Possible outcomes include additional lab testing, recommendations for some changes with my medications, and the vastly less popular bone biopsy. I should hear from him next week after all the labs have processed. In the meantime, I'm trying to avoid dipping into lab results piecemeal and asking Doctor Google.

One last note: An idea was floated early on in this process that my low hemoglobin and rising creatinine could be related. The hematologist does not suspect that is the case. That bit of information makes an already intimidating situation seem a lot more messy.