Update: Tom from Ohio
Like many of you, I’ve been worried about our dear friend, allogeneic stem cell transplant recipient, Tom from Ohio, ever since his wife, Whitney, shared that he was facing another setback and had been rushed to intensive care. Whitney kindly took the time to email us about how Tom is doing:
I guess I should start off by saying things were actually going pretty well. We had an uneventful holiday season, medically speaking, and enjoyed family time. Tom was even able to get out and watch the kids sled one day.
He was improving and able to do up to an outing a day. Tom was planning on attending the Myeloma Beach Party, and also wanted to take the kids to Florida for spring break. We had just bought new walking shoes and some flip flops when things took a turn for the worse. He blames the shoes!
Tom started feeling bad in March. Max, our youngest, and Tom both had a bug for a few days but that seemed to pass. Then flu like symptoms started; achy, sweaty–no fever but something wasn’t right. He was able to make it through his monthly checkup OK, but within a couple days he couldn’t walk on his own anymore. His muscles hurt so badly that he literally couldn’t move. I had to help him in and out of bed, bathe him and dress him again. We got him back to the clinic. There he tested positive for the rhino virus. Just the common cold, so I really didn’t think that could be causing this pain.
I remember it was a Friday because Tom was desperately trying to not be admitted. Love the clinic, but not much happens over the weekend. The doctor said if he got two bags of fluid and promised to come back early the next week, he’d let him go home. I gave in. He’s been there so much the last year and half, I felt bad pushing. Fluids seem to be the only thing that gave him relief.
Well, the relief didn’t last long. He was admitted April 1st. By then he could barely move at all. They said the virus was attacking his muscles including his heart. OMG! I thought. This is it. Our biggest fear has been something like the common cold is going to take him down for good.
He had a number of tests done. Blood work showed his enzymes were high. EKG, echo’s and MRI’s of his heart revealed it was inflamed, but there were no signs of a heart attack or long term damage. Myocarditis was the diagnosis, which was great news all things considered. You never want an inflamed heart, but it shouldn’t kill him. Physical therapy was on it and said he could do inpatient rehab and be home soon good as new. Sounded like a good plan.
This is when I left for Spring break with our kids. Tom made me take them so they wouldn’t be disappointed. Once I felt he wasn’t dying, I figured OK, I’d do it. They reassured me he’d be moving to inpatient rehab for 10-14 days. Great! He’ll be under good care., so I flew away.
Four days later Tom called and said there had been a huge turn around. The pain was gone and PT said he can go home. I said, “What?” Happy that he was feeling better. But as a loving caregiver, this was not anywhere close to the plan. I tried to hold my tongue, so the new plan was he’d go to his dad’s house until we returned, then we’d go home and start out patient rehab there.
Honestly, the complete turn around was hard to believe. I was scared. Tom and I both thought he was dying the week before. We were both caught off guard by this drastic turn in his health. I think we thought we had gotten over the hump. Emotional I was a mess and wished I was home.
Before I could make it home from Florida, I got a call that Tom was back in the ER and being admitted again. My poor man was struggling. This time it was light headedness; Tom and his doctor were worried about his heart. So back in the hospital he went. I was by his side two days later when I returned from Florida.
Once again fluids were helping, and he already felt better. They seemed to be sticking to the ‘this is a virus’ theory. Still no heart attack, so that’s what we believed, too. A virus that would eventually work its way through his system was much easier to swallow than his heart never recovering. Tom was released again; it was a Wednesday. I guess the dates don’t really matter at this point: every time Tom left he returned within two or three days. It happened again, returning to the hospital for a third time. This time is was shortness of breath. Crazy scary shortness of breath, like “press the red OnStar button in the car” if I don’t make it. Here we go again.
Bare with me, I’m starting to get confused by the dates and lack of sleep. He’s back in the hospital. The date is Saturday, April 18th. Monday morning at 4:30am, I get the dreaded “missed voice mail from the hospital.” Tom was being moved to ICU (intensive care). He was struggling to breath and needed to be monitored more closely. They gave Tom a Cpap mask, and that seemed to be the only thing that helped. By this time his body wasn’t happy about all the extra fluid he was retaining; his arms looked like Popeye! From what I understand, the extra fluid put stress on his lungs, causing the lower lungs to collapse. That’s why he couldn’t breathe. Oh, and his hemoglobin dropped during these stays too, so he got blood transfusions to help with that. No signs of bleeding anywhere, which was good.
That brings me to today, Thursday April 23rd. After three days in the ICU, Tom was moved out and back up to the transplant floor. They are now more focused on his lungs. I hesitate to say he is out of the woods because of all our return trips to the hospital. Tom’s hemoglobin is low again, so he’ll be getting more blood. They just took him away for a chest X-ray, and are deciding on whether to put him on Lasix to help with water retention.
I’m afraid to think about what may be next. Crazy huh? I know a lot of your readers have been through similar situations–some much worse–so I know they can relate. It has been a long two months. This has really scared us both. A few extra prayers would be greatly appreciated.
Thanks so much Pat,
So sorry, Tom and Whitney! All of this is happening 18 months post transplant. Anyone ready to run and and undergo an allo?
I understand why it may feel like an afterthought, but despite it all, I can’t help wondering how Tom’s myeloma numbers are. Whitney, can you let us know?
And please, please get in touch with me once doctors figure out what’s going on so I can pass the news along to our readers.
Good luck! Our thoughts and prayers are with you both.
Feel good and keep smiling! Pat