How’s it Going?

Hello, friends. I’m doing OK. The past 10 days I’ve been adjusting to my new normal. My health is improving ever-so-slowly. The pain is still lingering from the muscle injury, but I’ve been seeing the physical therapist daily the past 2 weeks and I feel that has helped tremendously. My range of motion is improving, though I am still unable to tie my own shoe (on the left foot) so I’m wearing sandals. I’m starting to decipher which pain is from the muscle injury and which pain is from the knee surgery. I was supposed to have a follow-up with the ortho doctor but I felt that I couldn’t distinguish between the pain so postponed that. Speaking of doctors though, I’ve been seeing quite a few of them.

Monday was my appointment with my primary care doctor. Dr. Ciechna is in the same building as my OB/GYN. In fact it was her (Dr. Delind) who recommended that I establish care with a family doctor back when Clayton was born…and then again after my hysterectomy last year. She recommended Dr. Ciechna because he had lots of kids and she thought I would like him. So last year, I went and met him and decided he was great, and had all the kids make appointments with him, too. He did back-to-school exams for the little ones. Russ changed over to him too, and I was pleased that we had a family doctor again after many years of just going to the guy in town that never had a wait to schedule an appointment for sports physicals annually for my big kids. It wasn’t until I met with him this week though, that I learned what a disservice I had done to myself and my family by not doing this sooner. I came in with my stack of paperwork – the folder from Morris Hospital complete with the disk of my scans from that first ER visit; the spiral bound book that was given to me at RUSH in preparation of the kidney surgery; a bunch of pamphlets about Birt Hogg-Dube Syndrome from the genetics counselor including the clinical introduction that I was told should be given to any of my doctors; my chicken-scratch list of medications that I’ve been taking noting time, dosage, other vital signs as well as side effects; my genetic testing results; and some miscellaneous mail that seems to have gotten put in with my pile of important papers. They told me at the emergency room to follow up with my primary care doctor back in July. I did call and leave a message, but honestly, what the heck was he going to do about a mass on my kidney anyway? So I really didn’t think much about it, and kept moving forward with the urologist and then Dr. Stephenson at RUSH. I did put Dr. Ciechna’s name down whenever they asked for my primary care doctor, but since I really had only met him a handful of times a year ago, I didn’t really expect much. One day, I got a call from a home health care place (not the one where Nurse Bob was from) and they sent a phlebotomist to my house to draw some blood…and she said it was Dr. Ciechna who had ordered it. So I called to follow-up again, and that’s when I scheduled this appointment. As I was trying to summarize the last couple of months and explain the BHD as I understand it and ask about the medications and the weird rash that popped up on my left leg, Dr. Ciechna just took right over. He listened and understood, he formulated a plan, he prescribed a couple of medications to help and made sure I stopped taking the extra ibuprofen that might have been the cause of the rash. I showed him the report from the latest scan from RUSH (that I don’t have on a disk) and asked questions about the lung cysts and nodule that was mentioned there. He wrote up a referral to a local pulmonologist that he knows and also one for a dermatologist in Morris. I left his office feeling like I had just been in a huddle with the quarterback and he was positioning my team of doctors that are going to be taking care of me…or maybe he would be the offensive coordinator? Whatever. It’s 2am, so if my analogies don’t make much sense, you’ll have to forgive me. Or just laugh…that’s fine, too. 🤣

Dr. Ciechna’s office is like 5 minutes away from my house. There’s only 1 stop light between his office and my subdivision. Before I even got into my neighborhood, my phone rang and it was someone from the pulmonologist’s office. They had gotten my referral from Dr. Ciechna and wanted to schedule something. I WASN’T EVEN HOME YET! So we did, and Dr. Walsh had a cancellation for Wednesday and I took that appointment. Later that day, I got a call from the dermatologist and was able to squeeze into one of her cancellations for an appointment on Thursday. Since it looked like this week was going to be a little busier than planned, it reinforced my determination that I wasn’t going to take any more narcotics even though Dr. Ciechna did write a Rx for some Norco. I didn’t want to have to be driven around, and frankly, I needed the extra help at home from the big kids to help supervise remote learning which was shaping up to be an even bigger disaster than my healthcare worries, believe it or not! Tuesday I had to take Amy to the dentist, she has been complaining about a toothache…but only at bedtime. I’m glad I believed her though, because they took an xray and saw a big cavity on one of her back teeth. Had to get a referral to the pediatric dentist in Joliet again (Dr. Rita) who had filled the girls cavities a year ago, and as luck would have it, she had a cancellation that afternoon. It wasn’t an appointment to have the cavity filled, just another consultation and scheduling. Dr. Rita did prescribe an antibiotic though that should help with any pain before Amy’s next appointment. I am pleased to report that at age 6, Amy is SO good at taking her medicine. I imagined (or remembered) how awful it was to try to force-feed kids medicine 3x/day for 10 days, so this was a pleasant surprise.

So Wednesday rolls around and I find my way to Dr. Walsh’s office. If anyone is wondering, a pulmonologist is a lung doctor. I didn’t know before all this started, so don’t feel bad. Dr. Stephenson had told me at our last appointment that I would need to see one, but I kind of felt like he was downplaying what the scans had shown in my lungs because it wasn’t as pressing a concern as the kidney tumor. The radiologist that read my CT scan with contrast at RUSH summarized 4 things, first was the kidney tumor, of course. But the second thing on the list was “Numerous bilateral basilar predominant pulmonary cysts of varying size and morphology.” And the 3rd thing on the list was “Focal 1.4 cm hyperdense subpleural nodule, possibly a calcified nodule.” Neither of those sounded like something that could just be brushed aside. So armed with that same stack of paperwork that I brought to Dr. Ciechna, I came to Dr. Walsh and recapped the last 2 months with him. I’m getting pretty good at summarizing my story, though as you’re reading another long blog entry, I know you are doubting that!! Dr. Walsh’s eyes lit up a little when I told him about my Birt Hogg-Dube Syndrome. He explained that it’s one of the questions on the board exams, so he was familiar with it because of that but had never treated anyone with it. Rare diseases are fun for doctors, apparently! They loaded up the disk from Morris Hospital, and even though that was just an abdominal scan (not chest) he was able to see the cysts in the lower part of the lungs that were captured there. He also was able to see the hyperdense subpleural nodule. He pointed them out to me and told me what he would do. We need to watch it. Since that scan was from July, he wants me to have another scan done in October so we can see if that nodule is growing. It’s outside the lung (that’s what subplueral means, I guess) and if it changes at all, he might want to take a biopsy of it. The cysts in the lungs did look a little worrisome to me, but Dr. Walsh seemed to think they were OK. OK as in, I didn’t need to have another surgery or anything anytime soon. He explained the spontaneous pneumothorax and told me signs to watch for. He also advised that I don’t go skydiving or scuba diving. I haven’t actually written out a bucket list, but if I had and those were on it, they would now have to be removed. I felt comfortable and liked Dr. Walsh, he seems very good and leaving his office I mentally checked “lung doctor” off my list.

Thursday morning I headed to Morris to see Dr. Jenkins. She’s the dermatologist. The only one around, it seems. I had actually seen her once before, it was 4 years ago. When Clayton was just a baby, I noticed a lump on the back of my head. Dr. Jenkins said it was a lipoma and we could remove it…but at the time she wanted to put me on antibiotics before the procedure and I was still nursing Clayton. So she said not to worry about it, just come back after he weened. Haha. That kid was on the boob for 18 months! So I forgot about it. And it was JUST a lipoma. And yes, it is definitely striking me as something that I should have paid more attention to. BHD literature doesn’t say anything about this, but is the genetic mutation that makes me have weird growths elsewhere maybe part of why there’s a mysterious lump on the back of my head? ANYWAY…back to my appointment. All the doctors offices have been very good, they all have to ask the same Covid questions before you come in. You wait in your car until your appointment time so there’s not too many people in the waiting room. I’m used to the new drill already. Dr. Jenkins office doesn’t seem to be. They had me fill out some updated paperwork and then told me to wait in the waiting room. For a half hour. Maybe that isn’t a big deal usually, but the waiting room is small, and there were 5 other people. And my muscle injury wasn’t cooperating and I couldn’t sit, it was too uncomfortable, so I was standing in the corner. They took back 2 other patients who came in after me before they finally called me back. Slightly annoyed, but still appreciative that I was out of the house without any kids, I started filling in the nurse about what was going on. Then I had to get undressed and wait for the doctor. For another 15-20 minutes. When somebody came in, it wasn’t Dr. Jenkins but her new physician’s assistant. She was very nice and everything, but kept telling me since she was new she couldn’t do anything and Dr. Jenkins would be in soon. She did get very close to my face with her magnifying tool to study the bumps on my face. They aren’t that bumpy or noticeable, really. Or maybe I’m just used to looking at them. Anyway, when Dr. Jenkins came in and we rehashed the story again, just like Dr. Walsh, her face lit up when I said Birt Hogg-Dube, and she also said that was a question on her board exam, too. What I thought were fibrofolliculomas she diagnosed as angiofibromas along my nose. That’s another BHD thing. The tiny white non-zit thing under my eye she called a “milia” and offered to remove that, though it is benign in nature. Since I’m on blood thinners still from the kidney surgery, she said we should wait a month to do that or else I would end up with lots of bleeding and bruising most likely. They did a full body scan which I will have to do regularly going forward, and nothing else popped up. Until she got to the lump on the back of my head. Apparently, she had taken good notes the last time and it was 1.7cm last time I was there 4 years ago, but now it’s at least 3cm. And because it’s that big, she has to refer me to an ENT doctor. I’m still a little uncertain as to why an ear, nose, and throat guy would be the one to see about a lump on the back of my head…but I’m not a doctor. So one more referral to go, and hopefully that will be my team of doctors. I’m thinking I might also need an oncologist, but I will wait and see what Dr. Stephenson says on Monday when I go back for my follow-up with him.

As of right now, since I was curious and just stepped on the scale, I’m 14 pounds less than the day of surgery which was one month ago today. So if you count the extra 30 lbs. that they put on me with the IV fluids, I’ve lost 44 lbs. in a month! I am moving much better, and usually you can’t tell that I have a limp except when I’m really exhausted and when I’m up in the middle of the night. I have been able to do a little grocery shopping, though I am much slower than I used to be. I’ve been spending time in the kitchen, trying to cook more since we were eating out way too much and I was tired of paying for crappy food. I’m also spending a lot of time out on the back patio. I know I promised a blog post with before and after pictures, but I’ve been spending my late nights watching season 3 of Ozark, and also I discovered the BEST live stream ever. It’s a South African safari. They are literally driving their jeeps around looking for cool animals and then talking about them. It’s amazing. Baby elephants, baby cheetahs, crocodiles, water buffalo, and LOTS of lions, leopards, hyenas, wildebeasts, even a pangolin. And since it’s on the other side of the world, it’s happening when most normal Americans are sleeping. During the day between physical therapy and all these other doctor appointments, I’m helping the girls with their school, trying to keep Clayton entertained enough to leave them alone, and I’m trying to squeeze in a nap whenever possible. Though my 2-hour limit in the bed has been stretching to 3-5 hours sometimes, I still have been unable to get a good 8 hours all at once. It’s ok though, I’m adjusting. I feel better. I know I’m not all healed yet, but I am confident that I’m moving in the right direction, one day at a time.