I suspect I'm beginning an unpleasant and scary journey

Me: 50yo female. 15 year history of hypertension and high cholesterol, both controlled. Complicated medical history beginning with a ruptured appendix at age 14 that went undiagnosed for 7 days (although I was hospitalized the entire time), resulting in chronic PID and multiple abdominal surgeries over many years, but otherwise fairly healthy.

Developed a nonproductive cough with some shortness of breath X 3 weeks. Then I completely lost my appetite/ability to eat. After 4 days of not eating, I saw my PCP, who found tachycardia. She wanted to call an ambulance; I drove myself to the ER instead.

After more than 8 hours in the ER, I had an EKG, blood work and a chest xray. Initial diagnosis was r/o pulmonary embolism. Had a CT scan with contrast. No PE, but many nodes in the chest and abdomen, a splenic mass, spots on the kidneys, and fluid in the lungs and around the heart. ECG ruled out congestive heart failure. I was admitted with a diagnosis of pneumonia.

Over the course of the next couple of days, I saw pulmonologists and an oncologist. They suspect lymphoma. Initially they were going to do a lymph node biopsy while hospitalized, but in consultation they decided to wait four weeks in order to treat the pneumonia first. I surely don’t prefer to wait four weeks for a definitive diagnosis.

The oncologist opined that I have a “low grade” lymphoma, which seemed encouraging at the time. That is, until I got home and did some research and learned that low grade lymphoma is basically incurable.

Also while hospitalized, I had a thyroid ultrasound which revealed some nodules, which no one seemed particularly concerned about and I uncharacteristically failed to ask about.

So right now the pneumonia is kicking my butt – I have zero energy, little appetite, and have coughed so hard that every muscle from my diaphragm down hurts like hell. And the cough is still nonproductive.

Not looking for sympathy, but if anyone would like to chime in about their experience with either pneumonia or lymphoma, I’d certainly like to learn. Literature suggests I should be feeling better by now. I had 3 rounds of 2 IV antibiotics in the hospital. I just finished a 3 pill Zpac and have 7 more days of another oral antibiotic.

Also, for the medical types, I’ve had no fever or night sweats (that I’m aware of).

I’m a bit frightened, I’ll admit. My best friend died of lymphoma 14 years ago, and she went through hell.

Thanks for reading/listening. All input welcome.

And after some thought, perhaps this should be in IMHO.

Cheerful Pessimist

Wow, I don’t have any experience or advice for what you’re going through, but it sounds tough & scary, and I wanted to at least let you know that someone read your post and heard what you said. Health issues are, at best, no fun to deal with, and at worst, enormously frightening. I hope someone with more information for you shows up soon.

Ouch! Almost the same thing happened to my Daddy, he was 60yo. He had lymphoma and had many different treatments, Hoping for remission. It never happened. He died at 86 from a brain aneurysm, not thought to be connected to the lymphoma. Those 26 years he called them bonus years, He lived a happy and active life, and was working up to the night he died. He was an amazing man, no doubt. So…I have high hopes for you. You must keep healthy and eat good. And get your rest, listen to your body, when it says stop, do it. Good luck!

No help with the lymphoma, unfortunately, but I was just in the hospital for a month with pneumonia and septic cellulitis. My advice is stuff you already know. Follow your doctor’s orders. If you have any questions for your doctor, ask them. Don’t over exert yourself, and if you have friends and family, make sure you stay in touch with them through this.

Sorry to hear you are going through this, ESPECIALLY since your best friend died from the same disease. That would seriously put me on edge.

Best of luck to you, I hope you start feeling better ASAP. Keep us posted.

I don’t know anything about lymphoma, but I had pneumonia a couple of years ago. I ended up in the hospital for a while. Even after I was released, I felt extremely weak. My husband had to go out of town the day after I was released from the hospital. It was a completely unavoidable situation but those first few days without another adult in the house were really rough. Do you have someone at home who can take care of you? Did they give you any medication other than antibiotics? What about an inhaler? Definitely try to keep your strength up by eating well though I know that lack of appetite can happen with pneumonia (as you have mentioned).

Best of luck and take care of yourself!

Thankfully, my husband has taken off work to help. He was planning to return today, but I am feeling too weak to take care of even basic needs. Having been on antibiotics for six days now, I thought I’d be feeling much better by now – I usually bounce back fairly quickly from things.

I do have an inhaler for SOB, but I haven’t experienced much SOB due to lack of activity.

Thanks to those who have responded. I will continue to monitor.

I’m trying to write you a big comprehensive reply, but it’s not going too well. Feel free to PM me if you have specific questions.

I have B-cell lymphoma, which is incurable because it is caused by a chromosomal translocation, which probably occurred at my conception. There are a jillion kinds of lymphoma, and it’s all very confusing. My particular brand was treated with a monoclonal antibody and radiation. Monoclonal antibody treatment is like chemotherapy, but my oncologist gets annoyed if you call it that.

After my treatment, my oncologist said that typically my kind of lymphoma would show up again in three years, when it would be more aggressive and harder to treat (cancer is evil). It has now been eleven years with no new symptoms! I get a CAT scan annually.

Waiting for a diagnosis is definitely stressful.

My big pieces of advice are:

  • Find a doctor you like and respect. Find a clinic with a great staff. Some places treat patients like cattle.
  • Take life one day at time. Don’t worry about tomorrow, next week, a year from now. Do what you have to do today, be that biopsy, chemo, etc.
  • Remember that people do get through this.

Thanks for sharing, and for the great advice, ioioio. So far, I like and trust the oncology and pulmonology teams. And my PCP is great - she called me yesterday while on vacation, and while she expressed complete confidence in the team, she did say that we’d get second and third opinions if I wanted.