Low T-Cell - Bone Marrow Biopsy

@mariabrat Hi! It’s been a long while since we’ve connected and I’m wondering how you’ve been feeling. Any improvement or any treatments with your EBV?

I know it was a relief to finally have a name attached to the symptoms. Not that it makes the virus go away but at least puts you on a path to getting help.

Have you gotten to see your family this summer? How’s everything else going for you? You always have such a positive, ‘move forward’ attitude and that’s so important for your continued health and well-being. Though I know having a chronic illness can take its toll.

My friends in the Thuringia area of Germany are sweltering. Is it the same in Munich? It’s been the same where I live and believe me, I lose my cherub-like demeanor in hot, drippy weather! LOL. Take care and keep cool! 😎 Lori

I guess it is time for a long reply. .can't help it as there is so much going on. Getting off the subject: The temperature will continue to do as it will. Of course we the people must be the caretakers of this planet. We do not do well with our polluting of the air, the oceans, inlets, cannels, etc. AND what we do with the habitats of the animals and the animals themselves who share this planet with us to me is a disgrace. Shame on all of us. So many of us worry and work hard to bring together the research to help to the many ill and dying humans and animals and then there are the others who destroy the advances we work so hard on.

Anyway getting back on to my little but many health issues: The fingernails on my right hand have been brittle, completely destroyed and revealing the nail bed. Painfull. BUT GOOD NEWS: I started taking hydroxychloroquine about five weeks ago. GUESS WHAT? After seven years of this nail horror the nails are healing. Much of the pain is gone and you can see the smile n my face around the world. Still strugeling with the pain of three autoimmune diseases and other medical problems. My time is almost up with the Pancytopenia. The osteitis pain is horribly painful so why do I continue on? Again, the will to live is very strong. To enjoy a delicioulsy good meal, an interesting and exciting movie, a good and interesting conversation with another human being, to watch a bird, a sunflower grow so fast, to see the most glorious morning glories, to watch the clouds roll by as I lie outside t get some twenty minutes of sun (vitaman D). And all this done with the great pains that come with the Psoriatic arthritis, rheumatoid arthritis, diabetes, hypothyroidism, copd, sleep apnea, ground glass on the lungs, chronic venus insufficiency, A-Fib, kyphosis, osteitis, chronic kidney disease, (also quite painful) Cannot do much about this as there is a MONOPOLY in my county. A monopoly of nephrologists and they do take advantage of this. Cannot be bothered to look up the rest of my afflections. So if my time does not come soon enough then? Sorry, I am feeling very sorry for myself. Some times it helps. To go to a self help group would be a good help but not being able to drive with my now "Low Vision" (Yes another health problem) The most frightening one of all blindness a horror to me.. I am trying to stay strong but it gets harder and harder. Dear God I am waiting for you whenever you are ready for me. Please excuse me.

@peach414144 I’m so moved by your reply and in the process of writing a longer message to you and will talk to you tomorrow. I don’t know how I missed your last posting and for that I’m truly sorry. Praying you have a peaceful evening. Hugs, Lori.

@peach414144
As a mentor with this outstanding forum centered around caring, empathy and hope, I’m moved and humbled daily by the stories and journeys fellow members share. I do my best to respond with compassion, honesty and factual answers. I freely admit, there are times when I’m reduced to tears and overcome with emotion. This response from you is one of those times. I simply want to reach through this computer and hug you.

I don’t know how I missed your previous post in this conversation and for that I’m genuinely sorry. Reading through several of your responses in other groups, as well as this one today, I can feel your despair with the overwhelming number of medical issues you have happening at this time. And I can feel you’re also carrying the weight of the world on your shoulders with concerns for longevity of our planet, its population of people, critters, and resources. No wonder you feel helpless and hopeless.

You’ve been in the Connect family for many years and obviously have helped numerous members with sharing your stories and experiences. Since I’m not often in the groups where you’ve posted, I don’t know a lot about you. Do you live alone in your own home? Are you in an assisted living community? Would that be an option for you?
Any family members, friends or neighbors who call on you regularly?

With your eyesight failing it’s understandable to be frightened and I’m saddened to think that you’re alone. You’re obviously in a great deal of discomfort daily and have some critical medical issues. I’m encouraged that you have this inherently strong sense of survival. In our house we call it “the spirit of endurance”. To enjoy those seemingly small moments of pleasure, such as sitting in the sunshine, indulging in the colors and beauty of nature around us, to share contact with another human being or a beloved pet, is so important and leave a huge positive impact on our psyche.

Since you enjoy nature you might like our group https://connect.mayoclinic.org/discussion/whats-outside-of-your-picture-window-today/
We leave the medical world behind and post photos of the beauty around us. It provides a wonderful distraction and helps boost morale.

As I close this lengthy message it is important to address the pancytopenia. Your bone marrow is deficient in producing red/white blood cells and platelets, which directly impacts your immune system.This sets you up for the continued threat of infections and autoimmune responses. I’m so sorry for what you’re having to endure with your list of medical diseases.

Have you spoken with your primary care provider regarding palliative care? Palliative care is not an ‘end of life’ or hospice situation. Palliative care (known as palliative medicine) addresses symptoms directly to improve how the patient feels regardless of the cause. It’s specialized medical care for people living with serious illness and focuses on providing relief from the symptoms and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.

We’ll be speaking again. As you can see, I’m long winded. 😉 Hugs, Lori

You hit the nail on the head, Thank you. I live alone in my house. (A long story.) The doctors have given up and seem to have such a load on their shoulders that they do not want to reveal their emotions. They seem to be so emotionless and uncaring or just a "Go Away" attitude. Or perhaps, when she leaves then I can do more for another patient. I am sure that I am not the only elderly patient to feel this way. Also THE BIGGEST FEELING THAT I HAVE IS: This younger generation of doctors do not have the empathy or the caring as was in the past. I am very positive on this. (Here is one example: Last month a doctor said to me "What makes you think you are different than any of the others?") When I help others whether animal, bird or human is when there is a glorious feeling within me and nothing else matters. Thank you for caring as I truly appreciate you. Love, Barbara. By the way the definition for the name Barbara means "Stranger from a forien land."

Hello Barbara -
I'm sorry that your are having trouble finding the right care team for all of your complex conditions. And I am sorry at how our medical practice, along with so many other aspects of life, has become so specialized that it seems broken. Science is moving at such a fast pace, and all aspects of care have become so advanced, that the GP or Family Practice doctor couldn't begin to keep up with everything if they studied all day and never saw a patient! On top of that, medicine is such big business ( and such a huge part of our economy) that is often seems like accounts are making our care decisions instead of the doctor and patient.

I know a lot of younger doctors, and find them not lacking in caring or empathy, but under tremendous pressure to perform in our modern medical system. I think is sometimes comes across as cold or indifferent. On top of that, many are facing a huge load of student debt from the cost of their education.

I like your positive attitude in the face of all your ailments, and I don't blame you for succumbing to depression occasionally. Perhaps, as Lori suggests, it is time to seek out a palliative care physician, who is usually part of a group with nurses, social workers and others, to try to bear some of this load with you.

Wishing you a peaceful day todaay, Sue

I have low white blood cells since 2008 and just found out when I complained of low energy (No more Zumba for me). The new doctor in 2019 (at the time; she has retired) asked me if I knew. I had no ideal!
She arrange for me to give blood work every 3-4 months.
I have taken alot of Xrays, but nothing found. There’s something wrong. I have skin infections, swollen throat glands (ultrasound found a cyst). No discussion of removing and when I took the Pfizer, my shoulder bones/lymph nose was swollen and there were 3 tinder to touch and moveable lumps/bumps on the R/side (in additional to). They’re no longer swollen, but took about 1-2 months.
My question to you is, how painful was the bone marrow? People say its unbearable.
I want it to rule out cancer. No doctors has requested.
I pray no cancer.

@lmclark I’m sorry you’re having all of these symptoms without getting any answers. It’s frightening and of course our minds initially go to the ‘worst case’ scenario.

However, you’re getting way ahead of the game. You’ve had low WBC for years and if this were cancer, without treatments, things would have progressed quickly by now. So please try and put positive thoughts in your mind as you wait to find answers. I’ve had the ‘worst case’ scenario and I’m alive and healthy! Never give up hope!

Do you have a current PCP where you can sit down and discuss your bloodwork? You mentioned the doctor who set up the blood tests in 2019 has retired but you’re still continuing to have the test taken. Who reads them and are you ever contacted personally with the results?
Have you ever had an appointment with a hematologist. (No, I’m not thinking cancer) A hematologist specializes in blood diseases and would be the next step after a discussion with your PCP.

Having a low WBC reduces your body’s defense against disease so you are more prone to infections and illnesses.
Causes for low white counts can be attributed to a variety of reasons from latent viruses, underlying infections, medications, stress, autoimmune diseases, blood cancers, etc..
Are your other CBC (complete blood count) numbers normal?
These numbers all work together to paint a picture of what’s happening inside your body. It’s difficult to see the whole picture by just looking at your WBC.
Have you been tested for Epstein Barr Virus? It can cause a host of issues such as the symptoms you noted here.

Swollen lymph nodes are a normal body response to an infection or inflammation. It can take weeks to months for the nodes to return to normal. There have been reports of the Covid vaccine triggering such a response but it’s temporary. The fact that your nodes have gone back to normal is a good sign. ☺️

In answer to your Bone Marrow Biopsy question…I’ve had over 12 in the past 2 years. They are not unbearable but if you have the option of being put under a mild sedative such as the one used for a colonoscopy I’d suggest that. If that’s not an option, have your doctor give you a prescription for Lorazapam (Ativan). 1.5-2mg to put you at ease during the brief appointment.

I’ve posted 2 sites below which discuss EBV
https://www.cdc.gov/epstein-barr/about-ebv.html
https://www.mayoclinic.org/diseases-conditions/mononucleosis/expert-answers/mononucleosis/faq-20058564
Do you have a doctor’s appointment coming up soon?
Wishing you all the best, Lori.

Hi! I’ve had 2 transplants and multiple biopsies. They do gift a lot, but just for a moment. Some friends I know are put to sleep to have it done! All will be well

Hot weather is a huge benefit as this pancytopenia creates an unhealthy cold, cold body. Often i sit in an 80 degree room with a heating pad on high and two or more blankets on me and I am still cold but at lease it stops the shaking.