Low T-Cell - Bone Marrow Biopsy

Oh my goodness, Maria! I just didn’t see your latest reply. I’m so sorry!! Usually I get a notification and for some reason it didn’t happen. Again, my apologies!!😢

I’m glad you returned to the ER. It’s absolutely frighting what you’re going through so pushing for some treatment is the best thing for you. I’d hate to see you flying alone for that long flight! It’s also really reassuring that she’s ordered this test within the next two weeks so you can do this before you have to head back home. Is your insurance paying for this I hope? I know that can be a grey area sometimes the tests can get pre-approved.

This doctor sounds like she really is working to get this heart issue solved! That’s a relief. Is she taking into consideration your dad’s prior history? Genetics can certainly play into this especially if it’s an obscure situation. But if this doctor is fairly certain that’s not the issue, you may put on the back burner for a while.
Taking the Ativan (lorazapam) will at least reduce some of the anxiety. She may be right in that any time you get this feeling it also triggers a type of panic attack. So it will be interesting to see if this helps you out a little. I don’t think she’s saying it’s all anxiety! She sounds very knowledgable and trying to work with you to get to the bottom of your symptoms. These new ones are really troubling and I know they freak you out!

Again I’m so sorry for missing this reply, Maria. I have to ask, have you tried an Ativan yet? That is my anti anxiety med when I have stressful medical tests like my 3 hour MRIs. ☺️ Even a small amount helps take the edge off. You can break the little tablets in half and just take part of it to begin with.

@loribmt no worries ! I just wanted to make sure you were alright, really 🙂 glad to hear from you

Well, I’ve mentioned to the doctors (not that one) but the previous one at the ER my family history and they seemed to think that as a woman it’s not the same risk at all. They said that on the CT scan they saw the main arteries and it was fine but my dad heart attack was on the small one. I asked my dad again and he only did the cardio test with ultrasound (the one I will do on Wednesday) 10 years ago. He was just doing the regular running test every year and they missed it.

I am taking Ativan, trying half, its helping a bit but I still feel my weird heartbeats. One is better. But I’m scared to become addicted in a few weeks. Also Im taking sometimes 1-2 beers but worried its not a good idea. The pharmacist said it’s ok but not too much as I might become drunk.

Im supposed to go camping for 2 days with my sister 45 minutes for the city tomorrow and I’m super anxious that something will happen to me. Again the doctor seem not to think so but I’m worried about sudden cardiac arrest with all my issues. The doctor seem to say it’s not autoimmune as there are no fluid around the heart so that something else.

Aw thanks for checking in. Other than me apparently not seeing postings right in front of my face, I’m perfectly fine. 😂. I still don’t know how I missed your reply.
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I know how anxious you are about possibly having a sudden cardiac arrest. You do feel a little better being on the Ativan though you can feel some irregular heartbeats. But since taking the Ativan, have you had any of these really upsetting episodes? While it can be addictive with longterm use, for now if it’s working for you it’s ok to use. Just stick with the smallest dosage as needed. Ativan stays in the system longer than Xanax. So it will require less pills because it will provide anti anxiety for a longer period.

I hate to see you missing out on some of these rare moments such as getting to spend time with your sister camping for 2 days because of ‘what ifs’. Thinking of our mortality can certainly instill fear. But it can also paralyze us from enjoying the life we do have. ‘What ifs’ can rob us of quality of life and it’s wasted, negative time. I’m one of these people who would rather pull off the bandage with one zip…meaning I’d go and enjoy my life and push that envelope of comfort. Either something will happen or it won’t. And most often, what we fear most never happens.
Your doctor has been pretty reassuring with saying she didn’t feel this would lead to a sudden cardiac arrest. I’d be inclined to go camping. Your sister is aware of your medical situation and she seems comfortable with taking you. I think this could be some good bonding and relaxing time with your her and a break from the norm!
What you can do is have a plan. 45 minutes from home isn’t very far. See where the nearest ER is located just in case and then try to enjoy some girl time with your sister. Does that sound feasible?

Hi @loribmt

I like your philosophy in life: I’d probably do that and hope nothing will happen as the doctor were not concerned. I will do some small walks and relax by the river, nothing too intense.

I will see on Wednesday if something is up.

My friend is mostly drinking a bit at night but I’m sure we can find neighbors in the camping to drive us if there is anything. I don’t think there is anything less than 30 minutes drive, so if my heart stops nobody will know. But again this should not happen right?

One Ativan definitely calm my panic.

Maria, that truly is my philosophy in life. It has been liberating to let go of worry and anxiety. I wasn’t always this way. I had an ahah moment many years ago about how much life I wasted worrying about those pesky ‘what ifs’. And now, I’ve faced the absolute worst head on and no longer have any fear of death whatsoever. Do I want to check out early? Nope, I’ll go done fighting till the end but I won’t let anxiety or worry for the future cause me to lose one moment of my life.
So, pop that Ativan and head out for some Nature Bathing. It is truly healing. And I like your plan. Let me know how it goes!! Have fun!!! ☺️

Good morning @mariabrat, I’m curious about how you felt on the camping trip. Were you able to go? When does your testing start to evaluate your heart?

Hi @loribmt,

Thank you for reaching out! The camping trip was WONDERFUL- I am so grateful I went. The weather was beautiful and we were in a very stunning space without many people. I did feel my heart racing a lot and started to feel strange (chest tightness) while kayaking. I did take my Ativan and it at least help me not feel it that much, even if my heartbeats were still high. I do feel like absolutely unable to do sports, 2-3 steps in a slop and my heart is pumping like crazy!

I had my appointment for the electro a few days ago. I was running 10 minutes on a treadmill and the cardiologist was doing an ultrasound before and right after the sport and also monitoring my blood pressure. The heart structure and everything was fine, but the blood pressure did drop after the sport which is not normal - She said that she doesn't know why sometimes its a small infection that we can't see on the ultrasound. From what I read that would not go hands-in-hands with POTS syndrome...Which now makes me super confused why? They were not able to tell me.

I am flying back home on Thursday, and seeing my immunologist and the infectiologist next week and a cardiologist the week after. Hopefully, I will have the results of my cardiostat by then. I am very convinced it's a part of the undiagnosed autoimmune/infection condition that I have. One part of me is scared that they do not have anything to tell me and that they send me home again.

Maria, I’m so happy that you went on that trip and had such a wonderful time!! 😀It was a much needed break from all the stress and worry you’ve been going through. What a relief that the Ativan is helping reduce the anxiety. Just taking that edge off the worry helps a great deal, doesn’t it?

You surely are a mystery woman to your doctors. But I think these tests you’re having, especially this latest, are all pieces to this big puzzle and should bring you closer to some answers. I really hope too, that with the results of your cardiostat test, it will give your local clinic more to work on. It’s great that your heart is in excellent condition but the bp drop is what they’ll need to pinpoint next. You have a good team back home from what I’ve been reading in your replies. They seem very dedicated to finding out what’s going on.

Are you happy to be heading home? It was so nice to be with your family for a while and I’m sure they’ve missed you too. Would you ever consider moving to be back near all of your relatives?

Thank you very much I will re read the information
The last diagnosis from the oncologist was MZL- nodal type; however there seems to be several overlapping areas concerning light chain numbers.
He also is in persistent afib , on Xarelto 20mg each day, along with cardiac amyloidosis with a smaller concomitant amount of AL
For now, continuing active surveillance.
Renal US showed 4 L kidney stones and cyst, R kidney 1 stone and cyst, and bladder containing 40+ gravel/sand. Started on alopurinol 100mg every day as of 9/10/22.

received 2nd Evusheld on 9/12/22
Kappa free light chain 180.7 H
Lambda " " ' 10.63
Kappa/Lambda ratio - 17.55
Serum
IgG =3054 H
IgM=13 L
IgA =13 L