-
What Is On Your Medical Calendar For January?
Happy New Year, I hope!
What is January looking like for you in regard to appointments, procedures, new treatments, etc.? Medically speaking, how are you feeling going into this new year?
Give us an update on where you’re at medically and what plans your doctor has for you this month.
As always, we are here to support you!
-
23 Replies
-
Good morning, y’all. Medical month, prospectively?
(1) Talk with my PCP about my thyroid tests and adjusting my thyroid meds.
(2) Talk with my hematologist about the impaired systemic oxygen extraction thing and ask him to just mull it over and see if he can figure out a treatment for it from a hematological POV.
(3) Hopefully get my oxygen concentrator for overnight use. I’ve been tracking my O2 overnight using two kinds of pulse oximeters, and I swear it’s getting worse. I have no idea why.
(4) Marvel (with dismay) at the fact that I have so many darned “-ologists” in my health care world!
Brenda D.
(5) Oh, yeah…. I forgot. Get an MRI of my right axilla (underarm) because I’m having symptoms that could possibly be a recurrence of the inflammatory breast cancer. There’s another plausible explanation for the symptoms, but it always pays to be cautious and not overlook potentially important things.
-
@brendad53 funny/not funny, I think many of us can relate to the crazy amount of “ologists” we see. Cullen has more after transplant than he did when he had PH! I’ve nicknames them “Ollies”, as in, “Which Ollie does Cullen see this month”?
I will be thinking of you throughout the month but especially during your MRI. Once it’s scheduled let us know when it will be.
-
Good luck with your appointments this month, @brendad53! I love that you have it all planned out. Hoping you get more answers to some of your symptoms. Ativan is a great choice to take ahead of time, Brenda.
Too funny, yep, “ologists” and “Ollies” get old pretty darn quick. I need to remember the ones I have. Now, that may be a great topic, “How many Ollies do you have on your medical team?”
Best of luck to all this month. I have PCP, and I had Nephrologist visit virtually today after yesterday’s labs. I also have a dental appointment and a psych appointment.
Does a hair salon appointment count? It is much needed, LOL.
-
A psych appointment, Jen?!! Oh heck yeah. I have those AAALLLLLLL the time! So often that I even forget to include them in my list of medical appointments.
Shows you just how far gone I am, eh?! :).
-
Hi @brendad53, too funny! I saw her monthly, but I can go every few months now. I often forget when I go monthly, but now that it’s more spaced out, I remind myself here that I have that appointment.
You know, we all have seen a psychiatrist at one time or another.
-
-
-
I like that, Colleen. “Ollies.” 🙂
My MRI appointment is for January 25th. I fear they are going to make me lie face down to get it, simply because that’s how they image the breasts—you lie face down with the girls hanging down through big holes. The fact that I don’t HAVE a right breast any longer will probably not make a difference. I hate lying face down like that. I feel like I can’t breathe. Panic ensues, that I struggle to control. I keep telling myself that I’m NOT suffocating, I AM breathing, and this will only last for a few minutes, so hang on. Nevertheless….
The alternative explanation for the itching and pain is lymphedema. I’m collecting more fluid in my surgical-side arm and axilla that isn’t moving out very efficiently, so the tiny, swollen lymphatic capillaries are impinging on nearby nerves, and those nerves just happen to be “let’s send itch signals” nerves. The pain is a more recent development. But I just got a lymphedema pump to help move all that fluid, so perhaps the pump is moving even more fluid, which is further taxing the lymphatic capillaries in that area, and they are now impinging on nerves that say, “let’s send ‘ouch!’ signals.”
So it might not be a recurrence. If it is a recurrence of inflammatory breast cancer…I don’t know. I don’t know how I’ll handle it. IBC tends to be very aggressive, and the fact that I’ve been in remission for this long (13.5 years) is nothing short of a miracle of good medicine and grace. I don’t know what I’ll do or how I’ll feel if it has returned. I haven’t given it a lot of thought. Guess I don’t want to.
-
Hi Brenda, Thinking of you and me when you mentioned having underarm concerns. I was on spironolactone for at least eight years. Retrospectively, I have realized that the entire time, I had a mammogram plus an ultrasound each year because of “dense tissue”. I had a small area in my R armpit that was also occasionally tender.
When I stopped taking Spironolactone, within 2 weeks, I noticed the tenderness disappeared and no more ultrasounds needed after my mammogram. I had only noticed it when putting on deodorant
and no other time.
Possibly a coincidence but I don’t think so.
Wishing you pretty good New Year with no new diagnoses added to the pile ! -
@brendad53 I don’t know how you would feel about it but I wonder if they would be willing to give you a little sedation beforehand. Do you think that would help?
-
I plan on taking an Ativan or two beforehand. But I’m hesitant to take too much because I don’t want my respirations decreased because of being sedated. That’s why I don’t like products containing codeine. My breathing gets so shallow that I suddenly feel like I can’t breathe.
Notice how “breathing” is a recurring theme in my life? I’m starting to wonder about the symbolic significance of this.
-
-
-
Thanks, Vicky. I really think that it’s highly likely this is lymphatic fluid stuff. But I could be wrong. I hope my situation is like yours—caused by something NOT related to cancer!
-
Hi @colleensteele, I know you and Cullen are in Seattle today. My thoughts and prayers are with y’all. Please update us all once you get home and rest tomorrow.
That’s always a long and busy day for you both. Plus, the added stress of not knowing what’s happening. My poor buddy has not had the best luck the last few weeks. Prayers and much love are coming your way.
-
@jenc and PHriends, I took Cullen to Seattle today for a full respiratory viral panel and a COVID PCR test. What we originally thought were his kidneys acting up (which still might also be the case) he also developed a bad cough. Home Covid tests have been negative but lung transplant doesn’t trust them. Said the home tests can have false negatives. No results yet.
Parking was horrible at the hospital so for the first time ever I used their valet. Well guess what! They LOST my keys! A valet found them 45 minutes later on the dash of another car they parked!
It was one of those, “when it rains it pours” kind of days. Got home from the hospital and the vet contacted us that Mellows ashes were ready to be picked up. So, that was hard of course.
Then tonight my cell died and won’t charge. Says there is fluid in it. I have it sitting in a bag of rice but the phone is old and I have the feeling it just decided it was done. Not having my cell has made me realize how much I rely on it! Fingers crossed it starts up in the morning!
Thank you for listening to me vent about the day I had!
-
<<MASSIVE hug>>
-
Ugh, when you texted me that the valet lost your keys, I was livid for you! Knowing how bad my buddy Cullen was feeling and your stress from worrying about him and traffic getting there, you had a tough day, my friend.
I hope y’all at least had a Starbucks treat on your way home.
How’s Cullen feeling today? How about you? You sounded a bit nasally, and I know you had been coughing, too.
Since I talked with you yesterday, I assume your phone has dried out. I’ve heard rice will do it!
Geez, what a few weeks y’all have had. I hope you take some time to rest and do something that makes you smile this weekend. As I said, 2023 can only improve from here.
-
@jenc both Cullen and I are feeling better. We both go into an occasional coughing fit. It’s like a tickle in the throat that we can’t clear. All of his tests came back negative for anything viral so I guess it was just the common cold. Grief does a number on a person, even if it’s for a pet. I think Cullen caught something on his flight home and since we were both emotionally run down it stuck around for a bit.
Yes, the rice worked! It was raining that day so I guess that is where the water came from because I know I didn’t spill anything on it.
-
Hey @colleensteele,grateful you both are feeling better. As you know I think that cold came my way. Let’s hope it’s just a cold. I’ve been sick for 2 days now. Resting lots and sipping hot tea and eating homemade chicken soup.
My coughing is worse at night or moving around. Of course. Manny keeps me on the couch or in bed when he’s home.That guy, but I’m appreciative of him.
Manny wanted me to take a home COVID test however I realized all of ours expired between June and August last year. I’ll have to call my PCP is this isn’t better later today.
The worst is having to reschedule my much needed hair appointment again!Hehe.
How was Cullen’s kidney labs? Any changes?
-
-
-
As we near the end of January, how did your appointments go this month? Is there anything we can support you through as we close the first month of 2023?
-
Very good talk with my hematologist, who may have some insights about why my blood doesn’t wanna give up its oxygen to my cells—and I hope some ideas for how to ameliorate it.
Didn’t get the MRI of my breast and chest to check for cancer recurrence. Was having trouble breathing that day, so canceled. Will re-schedule.
On my way to KS soon.
-
@brendad53 I’m sorry to hear you had to re-schedule your MRI due to a bad breathing day. Do you know when the next attempt will be?
It sounds like you have an excellent hematologist! I will be anxious to hear what attempts will be tried to improve the blood vs. o2 situation.
-
Hey, Colleen. The next attempt will be when I call them and try to re-schedule. I’ve been so focused on trying to get my ducks in a row and get out of here that I haven’t done that yet. I was going to fly out tomorrow on Southwest. Got my boarding pass & everything. Then about 4 hours later they sent me a message saying they were canceling my flight. And when I tried to rebook with them, they couldn’t get me out until Friday. So I canceled the entire trip and am now flying United. I hope!
-
Hi @brendad53, I’m happy to hear that your hematologist may have some answers. I hope that you will see him soon. However, you’ll be in KS soon with your dad.
My thoughts are with you; I know this can’t be easy. I’m concerned that you’re struggling with your breathing enough that you canceled your MRI. Do you feel the added stress and being so busy trying to “get your ducks in a row” to be with your dad?
Please take care of yourself. We can’t pour from an empty cup, my dear PHriend. Safe travels and hugs.
-
Sitting in airport waiting for my flight out of NC. Southwest Airlines canceled on me yesterday 3-4 hours AFTER I had printed out my boarding pass. So today I’m flying United. Feeling sheepish that I asked for wheelchair assistance…but just got up to go to the loo and wash my face after eating lunch, and got back to my seat panting like I’d run a marathon.
OK. I guess I might could use the wheelchair.
Just got a text from my brother. Speech therapist says Dad’s cognitive impairment is moderate to severe. It seems that it’s getting worse each day, not each week or each month.
The breathing problem that caused me to cancel my MRI was that feeling of fullness around your diaphragm that makes it feel like you can’t fully move your diaphragm. When you try to take a deep breath…you can’t. You have to really hike your shoulders up and reach hard for a deep breath. Breast MRIs make you lie face down in the machine. That impedes the motion of the diaphragm, for me. I can’t get good, deep breaths in the MRI. I didn’t want to go into the test already feeling like I couldn’t move my diaphragm! The last time I had a breast MRI, when it was over I sat up on the edge of the table and cried just a bit from sheer stress.
-
Oh no, @brendad53, I’m sorry to hear that your dad’s progression is quicker than you thought. I’m hopeful that you made it safely to KS after such frustrations on the flights.
Please take care of yourself while there and don’t worry about us. If you have time to update, we would love it. However, time with your dad and family, and resting when you can is the priority.
Ohh, I got you with why you canceled your MRI. It would be difficult and quite uncomfortable when you can take those deep breaths in as needed and it then stresses you and wears you down.
I’m sending you and your family warm thoughts and prayers.
-
-
Log in to reply.