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What Is On Your Medical Calendar For October?
Is your medical calendar looking scary this October or are you “treating” yourself to a month off or at least one that isn’t very busy?
Share your schedule so we can offer our support wherever your PH journey is taking you next.
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36 Replies
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October 6th, Level 3 cardio-pulmonary exercise test at Wellesley-Newton branch hospital of Brigham and Women’s.
Just went through Hurricane Ian passing over my area in the middle of NC. Lost power for 24 hours. Generator wouldn’t work. Lots of work needed to be done to manage things, and I am now at about an 8 out of 10 in terms of feeling like I need to fall over and lie still for 2-3 days.
Some anxiety about the procedure as well as about the people DOING the procedure.
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Hi @brendad53, We are with you as you travel to Boston this week. This has been a long time coming, and I can only imagine the anxiety you’re experiencing. So many questions, I know.
I’m sorry that you had to experience the hurricane as you’re preparing for this important day.
Please let us hold your hand as you travel and go through this test on Thursday. This week, I’m sending you extra love, hugs, prayers, and light. You can do this; I think you’re more prepared than you believe. However, the emotions are all over the place, as I would expect with your past.
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@brendad53 I can imagine the physical and emotional stress the hurricane put you through. I’m so sorry!
During the exercise test try to think of something happy that easily distracts you that might help take your mind off of the concerns surrounding you. The more relaxed you are the better and more accurate the results will be.
I know, easier said than done but I agree with @jenc, you are more prepared than you give yourself credit for.
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I’m prepared for the test itself. But fairly anxious about the people and how they will behave. A “wham, bam, thank you ma’m” approach to doing the test, on their part, is not calculated to be a winning strategy for me. Slow and easy, with lots of information and talking along the way, will win the day.
I’ve thought that I’ve been handling my stress and anxiety pretty well, but last night I had a nightmare and woke up very anxious. Here’s the crux of the nightmare:
<p style=”font-weight: 400;”>The doctor began cutting on me, tracing a large-ish circle on the right side of my neck. He appeared to take off a layer of skin, and that was it. That was the “first phase” of the procedure. I was supposed to wait 24 hours in the hotel with my parents and then come back for the rest of the procedure the next day. </p>
<p style=”font-weight: 400;”>I got up off the table, still wondering where my parents were, and I got a good look at the doctor. He was gray-black in color, wore sandals, and had on a short white jacket (a bit dirty and rumpled) like medical students wear. I watched him clean off the implement he had just used to cut on my neck. It was an Exacto knife, and he wiped it on the grassy ground under his feet, then on his shirtsleeve. I got the impression that the blade may not have been too sharp. It looked a little “used” and like it needed to be replaced. </p>
To say I was appalled would be an understatement. I was outraged.As you can see, it’s not the test per se that frightens me. It’s the people administering the test. I can prepare myself for the test by learning about it. That diminishes my anxiety about it, though of course there is some residual concern. But there is NO way to prepare for the people and how they will behave. There is no way to know what they will do or say as they try to do the test. Will I be treated like a car on an assembly line? Or will I be treated like a person? In theory medicine only does the latter. In reality, this ain’t necessarily so.
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@brendad53 what I often find is that I put myself through a lot of anxiety and worry over things but once I’m in the situation it’s not as bad. I’m praying the people working with you will help make that happen for you! Sleep well tonight! No nightmares ok!
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I told myself that all through cancer treatment. Didn’t always work out that way. I have a whole book manuscript about this looking for a publisher. If you’re not careful, I’ll ask you to be a beta reader for me. I think you’d see things a bit differently if you read my story.
That said, one always goes in with very, very guarded hope. And sometimes it does work out well. Sometimes it doesn’t.
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Hi @colleensteele, I love your posts each month. You are such a creative soul. I wouldn’t say my month is scary, but it is busy with appointments.
I have a psych appointment and a mammogram (10/4) tomorrow. Next week I have my PCP appointment and will ask about the neurology consult. The following week is my PH appointment, and the next is my nephrologist appointment. Who knows what else will pop up, plus labs as usual?
How about you, Colleen? When is your next appointment or procedure scheduled?
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@jenc you made me want to run and hide when you mentioned mammogram. I think this time last year I was promising I would schedule that and the “other” appointment. Ack, why did you have to remind me! LOL! Good luck tomorrow.
I don’t have anything scheduled yet this month but Cullen sees Endocrinology on the 6th.
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Ah, yes. The annual squish-o-gram. What a delight! LOL! Those of us in the breast cancer community, who must have squish-o-grams every year, have been known to observe that if they scanned for testicular cancer using the same method, someone would’ve figured out a less painful way to do it by now!
Hope your results are a firm negative, Jen.
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Hehe, @brendad53, yep, I made it through my squish-o-gram yesterday afternoon. That doesn’t bother me much. But I cracked up reading your comments about if they used this to test for testicular cancer. Too funny.
Thanks for your good wishes. It was just routine.
You can do this, @brendad53; it’s almost time. Soon you’ll be back telling us what they had to say after all of your tests.
@colleensteele, you should schedule it this month, as I do, so I don’t forget. Call and schedule. It isn’t bad.
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Thinking about you today @brendad53 and praying you will get some answers.
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Thanks, Debbie. The test is done. I survived with minimal caterwauling. At least, the lead nurse said she’d had worse! LOL! I did almost break down in tears a couple of times. When I’m really stressed and at the end of my coping rope, that’s what happens. That’s how I can tell when I’ve pushed myself too far.
I’m still not sure of the results. Mamabear has been helping me thing them through. I walked away from the experience thinking, “Well, no answers again. They probably all think I’m just a fussy old lady.” But Mamabear makes me think perhaps that is not right. Maybe that’s not what everything boils down to, and maybe that’s not what they think.
BTW, Colleen…you were right. The folks were very kind, explained EVERYTHING and didn’t spring things on me that I’d have to cope with afresh on the spot.
When I get a final word on the results, I’ll let everyone know. Mamabear thinks she sees them saying, “mild PH.” If this is mild, I do NOT want to know what moderate or severe PH is like!!! <<with a shout-out to all the phriends here who are living with moderate or severe>>
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@brendad53 you did it! I’m sure it wasn’t easy but you got through it and I hope it’s the start of you collecting some good medical experiences. It makes my heart happy to hear they were kind to you. Now we stick by you as you wait for answers.
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The results of one test say that I have very mild pulmonary hypertension. The blood tests (of which there were 22) show certain abnormalities in my blood. As I read up on the meaning of the different tests, I am led to think that I might have something called polycythemia vera. It’s a very slow-growing type of blood cancer. As I read up on the symptoms of PV, it does sound like the things I’ve been dealing with. Including an explanation for why I suddenly began having blood clotting problems again in December 2018. (I said at that very time that the clotting meant I had cancer in some way again. Looks like I might be correct.) Why for the last couple of years I get full quickly, when eating a meal. And other things. But who knows whether that is the correct interpretation of the test results. We shall see what the doctors say. The Travel Gods willing, I’ll be home (at my house) by about noontime tomorrow.
This was my second right heart cath procedure. When they insert that cannula, it just hurts. Even though numbed up with lidocaine. And since they were going to do an exercise test, they wanted arterial blood, so they also jabbed a 12-inch needling into my wrist on the opposite side of where they put the catheter. (Well, OK. I may be exaggerating a LITTLE bit about how long the needle was.) But having that stick really hurt, too. When they were finally done mauling both sides of my body, I said, “Whew! I didn’t know my butt cheeks could clench that tight!”
Now they had a dilemma. They were supposed to be treating me in a “trauma-sensitive” way, and were doing a good job of it. But when I said that, they wanted to laugh. Which was what I had intended, of course. But they weren’t sure. And they didn’t want to be INsensitive! So I guess you could say, after they stuck me, I stuck it to them in return. LOL! Of course, I let them know that it was intended as a joke, to be funny, so that they could giggle.
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I told you, @brendad53, that you could do that! I’m incredibly proud of you and happy to hear that all went well. I’m sure you’ll reach out to other docs once you’re home and rested. With your “mild” PH, did they say anything about treatments? What’s next?
Didn’t you and I discuss possibly polycythemia vera a while back? I thought we did.
Your humor even kicked in; look at that!
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Not a word about treatment. The “mild PH” comment was in the written report from the catheterization. I won’t get an official opportunity to talk to my local pulmonologist until 3 weeks from now. As for Dr. Waxman, here in Boston….he didn’t meet with me at all after it was all done. I think he was just doing the procedure for Dr. Ford, and leaving all of the patient interaction work to him.
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Ahh, I see, @brendad53. We’ll be patiently waiting for your appointment with Dr. Ford with you to see what they decide.
Yeah, I thought we discussed PV in either an email or somewhere. I recall it may have been when you mentioned blood clots and itching. But like you, I have CRS and can’t remember all of that conversation.
Yeah, because often, those with PV go years without many symptoms. Of course, SOB is also a symptom. It is certainly something I would ask more about, either way.
How are you feeling after the trip? Relieved? Exhausted? Anxious?
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Jen, I’m in an angry and depressed place at the moment. None of the test results are wildly, markedly out of the norm. In my experience, modern medicine ignores things that are only a little bit out of the norm.
To reinforce this impression of mine, I got a call today from Dr. Ford’s scheduler. It seems that he wanted to change my appointment with him on the 27th of this month. For a brief moment my heart skipped a beat. Maybe this meant there was something important that my tests showed and that he wanted to discuss with me as soon as possible?
Not so. He’s going to be out of the office on the 27th, and wanted to move my appointment to the 26th. And if I couldn’t go on the 26th, his next available appointment would be in February.
I told the scheduler that this appointment was to discuss recent test results, and she sounded surprised to learn that. I told her it was hard enough to wait 3 weeks for the official word on the results. Waiting until February was out of the question. So I’ll see him on the 26th of this month.
But I’ve been in an angry and discouraged pit since then. My symptom constellation / its effects on my daily life as compared to the test results are not in sync. I figure that at the rate I’ve been declining, in 2-3 years I will be bed-bound. Why can’t we do something NOW to prevent that from happening? But we can’t do anything because the tests say I’m just not that unwell. In fact, the tests say I’m *barely* unwell.
I want to do something that would shame the whole medical profession. The only thing I can think of doing is walking away from them, getting progressively worse, and then dying. And it all could have been prevented if they had simply acted. But they were too ignorant with their tests and diagnostic processes, so the disease was not “caught” and I died.
But the truth is, that kind of thing happens to other people already. Right now. Today. The medical world wouldn’t bat an eye if it happens to me. They certainly would not feel shame.
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Hi @brendad53, I wish I had some answers for you, my PHriend. My hope and prayers are that you’ll have more answers after your visit with Dr. Ford on the 26th.
All of your emotions are not unusual with your past experiences with the medical world. I, like you, am angry and frustrated, but I want answers and for you to have some relief.
Don’t forget that keep your amazing sense of humor as you struggle with these mixed emotions.
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I asked my PCP to go over the test results with me in an unofficial way. We did that today at 1:00 PM.
I said, “As I look at the test results, what I see is some values that are a little out of the standard range. But they aren’t very far out of range. Based upon my experience with the world of medicine to date, these look to me like test results that are not going to be meaningful and suggestive of a problem when doctors see them. Am I correct?”
We talked about them for about 30 minutes. But the bottom line was, yes. I am right. He doesn’t think that the pulmonologist will see anything too remarkable in the results.
I in a hopeless position.
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Oh…and regarding Polycythemia vera…I don’t remember. Did we? I’ve made up a list of the PV symptoms and whether or not I have them. I have most of them. And the diagnosis would make a lot of sense of a lot of things that have been going on for the last 11-12 years.
We shall see. You have thoughts on this subject, Jen?
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Started out October was going to be a great month – getting our new Golden retriever puppy and bringing back more Golden love into our home. Still getting him on the 14th!! Finally got our appointments with new dermatologist. Oct turns scary. I have two malignant melatonin stage 2 on one and need surgery and possible therapy if lymph nodes are involved. Really angry – the last dermatologist never caught them 3 in all and that was in Feb. It all will be taken care of. The new dermatologist is incredible, we both like her and never have had such a thorough check up. The surgeon I have already met several months ago and we both felt very confident. I see him for a consult on the 27th and will schedule the surgery. Our new puppy will keep us smiling and busy for sure!!
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Well rats! So sorry to hear about the melanoma. But hopefully they will get good, wide, clean margins and it has not already escaped into your system. Will be holding good thoughts for you. If, as the Bible says, a merry heart does good like a medicine, your new pup should bring you some good medicine. Puppies are nothing if not happy little (mischievous little) creatures!
Brenda D.
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Thank you Brenda for your king thoughts and always a touch of humor. I was so glad to hear your tests went well and the techs explained everything clearly- it does make all the difference to calm our anxieties. Hope you hear back on your results soon and the report is good!! Take care of yourself and have a great weekend, Carol Volckmann
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Oh, @cdvol3gmail-com, I’m so sorry to hear about the melanoma. I’m frustrated that the previous dermatologist didn’t catch it. SMH.
I’ll keep you in my thoughts and prayers, my sweet PHriend.I know you and Dick are excited to bring the new golden pup home and spoil him. Take care of yourself, and know we are here to support you.
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Thank you Jen, sweet friend. I’ll keep you posted. We are both looking at this as it WILL be fixed!!! New pup coming home a week from today! Will keep us busy with lots of joy.
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I look forward to watching him grow up with you and Dick. That is exciting!
Your positive outlook on all makes life better! @cdvol3gmail-com
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Agh @cdvol3gmail-com I am so sorry to hear about the melanoma. I apologize for not remembering, have you dealt with skin cancer before? My mom has battled it for decades now so if you have any questions or concerns I can reach out to her and get back to you. Praying for you as always!
But I’m so excited to hear about the golden retriever! I’m sure the bundle of fur will bring you lot’s of joy!
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Thank you Colleen for your kind words and prayers. What makes me so angry is a mere 6 months ago the previous dermatologist did not catch any of the 3 which were very obvious!
I need to put the anger behind me and be thankful we both found an incredibly capable dermatologist!
After my consult with the surgeon and results are in, I may very well need to reach out to you regarding various therapies that may be suggested if the cancer has gone into my lymph nodes. Thank you!
We will be picking up our golden Thursday going very close to Bellinghan on our way to Lynden, WA. Will wave to you!
Thank you again Colleen – that reminds me, did you make your mammogram appointment yet?
Sending hugs and gratitude.
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@cdvol3gmail-com I’m praying so hard it hasn’t gone into the lymph nodes. My mom has not gone through that and God willing you won’t either!
It is inexcusable that your doctor missed these! My mom’s doctor won’t let ANYTHING slide to the point that she sometimes argues with him a little. I’m so sorry! It sounds like you are in excellent hands now though!
No, haven’t scheduled my appointment but it was on my mind today before you mentioned it. On my mind….
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Colleen, I can feel your prayers … thank you. I’ll keep you posted. I see the surgeon this coming Monday for a consult. They are a bit concerned about anesthesia because of my PAH, but I am not as my levels at rest are 95-99 and I have not had any issues so far with anesthesia. We shall see. Thank you again, sending you a big HUG.
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Carol
This is discouraging to hear. I had a spot on my ear that was cancerous but when it was cut out that was the end of it. Hope it is that simple for you.
As for October I had an echocardiogram and the results were better than I expected. My right heart pressures went down somewhere between 10 and 15 mm/hg in the last year. My treatment is doing well.
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Thank you Ralph for your positive thoughts. I have had issues before taken off but not stage II. I do have confidence that this will go well.
Great to hear your pressures have improved- YEAH!! It really is so reassuring when our treatments work!!!
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@ripple76 you slipped in here with your good news! Every bit of progress with treatments is to be celebrated. I’m so happy for you! Very hopeful for you that results will continue to look improved!
As I mentioned to @cdvol3gmail-com my mom has been struggling with skin cancer all over her body for decades but my dad has had some problems with it too…his ear, just like you. He drove a tractor trailer for a living and his doctor said the sunlight coming through his window and shining on his ears all those years were what got him. His cancer was just removed as well. Didn’t need more than that.
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Hello all.
I am happy for you Brenda that your appointment is behind you.
I love your sense of humor. You make me smile quite often.
Carol, I am sorry to hear about your diagnosis but feel positive that all will be “fixed”.
I will be sending positive vibes your way.
Yay Randolph! It is encouraging to hear your treatment is going good. It gives me hope in my own treatment.
I myself have a heart cath coming up this Monday.
I am not looking forward to it.
I have only had one before and I agree with you Brenda, they are not painless like they say.
It’s not a terrible pain but very uncomfortable.
My doctor wanted to put me on a new medication along with the meds I am already taking. I am taking so much medication I asked her if we could wait to see the results of the heart cath before we make that decision.
I am already taking Ambrisentan and Tadalfil.
Now she is thinking of adding a medicine that she says is in an inhalor form and it may cause jaw pain.
I forget what it is called.
I would really lie to avoid that but we will see.
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Thank you Susie- I will keep looking with a positive attitude- whatever needs to be done, it will be done. Thanks again for your encouragement.
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