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.

Waiting for Results: A Meditation

Me and Serena, enjoying a *little* sun (with a lot of sunscreen) at Jordan Lake, Aug 2023.

I'm waiting on results from the kidney biopsy I had a few days ago. I've been in a fairly relaxed state of suspended reality, living as fully as possible in the space before good or bad news, the space of denial and infinite possibilities. Dipping toes into the "what ifs." Taking pleasure in the fact that right now, I am ok. If this moment lasts forever, I will be okay forever. 

One Thing After Another

My one-year kidney tx anniversary came and went with little fanfare. Two of my bestest buddies sent me messages, which brightened my day. ☀️ I called my brother, my wonderful, wonderful living donor. 💜 I might not be here today without him. It’s impossible to overstate how much gratitude I feel toward him.

In general, life has been difficult. 

It started, in earnest, with contacting Covid over the July 4th holiday. While I escaped the most severe phase thanks to Paxlovid, I missed almost two weeks of work due to brain fog and inability to focus on anything except for episodes of The Mentalist. Thank DOG my lungs were spared.

By the time I followed up with my pulmonary team, it seemed very possible that my ongoing body fatigue/lightheadedness/shortness of breath upon exertion were being caused by another issue we’ve been closely tracking: falling hemoglobin. Falling hemoglobin is often associated with fatigue, but the other symptoms I’ve had can also happen. And who really knows when Covid fatigue “ended” and anemia fatigue “started.” It’s been dropping since spring, but by July it had dropped super low (7.5 for normal range of 12-16.) This is most likely caused by one of my 4 immune suppressant drugs. My kidney and lung docs talked and decided I should be referred to a Hematologist to help decode the mystery. That should happen in September. yay  

Now for the (possibly) most problematic thing happening. Let me preface this by saying that this is incredibly difficult for me to talk about because, emotionally, it makes me feel guilt, shame, and an incredible amount of sadness. There is a problem going on with my new kidney. My creatinine (measures kidney health) has been steadily rising since May (bad). Ideally, creatinine is under 1.0. Here’s a visual:

• Dec 2022: 1.0
• Jan 2023: 1.2
• Feb 2023: 1.1
• Mar 2023: 1.2
• Apr 2023: 1.4
• May 2023: 1.5
• Jun 2023: 1.2
• Jul 2023: 1.5
• Aug 2023: 1.8 (most recent)

What. The. Hell. Is. Going. On!? I feel like I’m on the fast track back to kidney failure and it’s completely too soon and seems to be despite the good and healthy things I’ve been doing. For those who don’t know, my donor brother was not just a good match for me - he was a GREAT match. What happened to 10+ years with this kidney? What happened to “such a close match” that if it weren’t for my lungs, I might be weened off rejection meds altogether with this kidney? What happened to the prolific, all-star performance after surgery? 😔

While my brain knows this is not my fault, my heart cannot help but collapse.

The 1.8 creatinine lab this week was devastating. I had a melt down while telling my boyfriend - I haven’t had the heart to tell anyone else except a close friend who asked how my labs went. Fortunately, my wonderful and thoughtful kidney doc called me the next day to discuss the results. We are going to proceed with an ultrasound and biopsy for more information. The problem could be something physiological, which the ultrasound would show, or some kind of toxicity from one of my medicines, infection, rejection, which the biopsy would show. However, none of my other labs raise suspicion for the infection or rejection options. Ideally, we would discover something that would explain both the low hemoglobin and the rising creatinine. I would love to catch that break.

  laura

Progress

I've made some progress in my living donor search. 

A couple of people that I know of have contacted Duke (for which I am eternally grateful!) but didn't make it past the initial screen (too old and predisposition to cancer). Another person did make it through the initial screening and is undergoing some further testing. But there are additional complications that would come with this particular person's donation that don't make it ideal. 

A good friend of mine made me some business cards that I can give out to refer people to Duke's living donor referral survey and website with information on living donation. The self-referral survey is confidential and is designed to see if donating a kidney would be safe for you, the donor. Please take it now if you are interested in exploring whether or not this may be right for you.

I have a couple of neighbors who have offered to test. This is a little surprising to me since, when this first came up, they were not more than acquaintances (and fellow dog owners). It made me wonder if for some reason it's easier to commit to donating when you actually don't already know the person well. Strange, but maybe there is some truth to it. It's not my way, but it's hard to not feel slighted when people you know and who care about you aren't jumping to get tested. This is my life, people.

I have also tried to be more open and forthcoming about sharing my story. Instead of saying how tired I am or how I'm annoyed by all the headaches I get, I'll work in that actually, I'm in end-stage kidney disease and in need of a living donor.

"But you look so healthy," people say. "I would never have known." I do take decent care of myself, I'm not scrawny or anything, my skin doesn't look sickly. But I am definitely feeling the effects of end-stage disease. And the fact of the matter is that by the time I am looking very sickly, it may well be too late to find a living donor without first going on dialysis. I'm not sure why, but getting dialysis before a living donor transplant isn't as good as not.

I believe that the right donor will come along without guilt, coercion, or obligation. If someone doesn't want to do this, then they are not the right one for me. My job is to spread the message of need for me and all the other patients in need of kidneys.

Health Update

My health has been fairly stable the last couple of months. My kidney numbers are still crap, but the nausea and brain fog have let up a bit. I'm still having frequent headaches, which may or may not be related, and without this little dog of mine, I'd probably spend every night on the couch binge-watching Netflix. Serena has done wonders for my health. Not only does she keep me walking every day, but getting outside is good for my mental health, and I've met a bunch of really great people who live in my neighborhood. My lungs are doing great, but my sinuses have been giving me some problems that I'm trying to address. My ENT wants me to start on Tricafta, the "gene therapy" pill for people with my cystic fibrosis mutation. I'm considering it, but am not thrilled about adding this to my regimen. It is hard on the liver, can be funky with some of the anti-rejection meds, and some people have unpleasant side effects. 

Life Update

Work continues to be very busy, and I love it. My mom's health has continued to decline after her most recent trip to hospital and rehab for her back (first, they thought she had a broken vertebra and then they tied it to severe spinal degeneration and stenosis.) She may have had a fall that set the whole thing off. However, it's honestly hard to tell because her memory is worse than ever. This has been hard on her and us. I am constantly forcing myself to be patient, but it's so hard sometimes. Her caregiver now comes five days per week and I can't see that changing any time soon. Things with Mohammad remain wonderful. Mr Kitty and Serena are great. Serena has gotten some "winter clothing" recently to keep her little body warm on those cold winter morning walks!

Want to help but not sure what to do?

The number one thing you can do is to share my story. Seriously! Tell one person. There are many of us who need living kidney donors, both to stay alive and to have a life that's worth living. Let people know that this need exists and that it can be a wonderful thing to do!

Secondly, I've set up a GoFundMe page to accept donations in anticipation of expenses incurred by those who may go through testing and eventually become my living donor. All medical expenses will be covered by insurance, but things like travel, lodging, meals, and parking costs are not. Not to mention making up for lost wages during recovery! It's my goal that there is no financial barrier for someone who wants to test for me - wherever they are.

Thirdly, if you think you might be a donor for me, read more about the living donor process on Duke's website. And, if that sounds good to you, maybe even fill out the self-referral survey.

That's all for now!

L