“I get words all day through;
First from him, now from you!
Is that all you blighters can do?”
9/6/2013: The following email from a fellow bone marrow transplantee arrived on my iPad yesterday while Michael and I were on our way to Hopkins. I was in the midst of vocally [profanely] dreading the upcoming appointment. Hoping the message would improve my mental state, I paused mid-rant to read it aloud to Michael as he drove. Her words resonated with both of us. Talk about perfect timing! My friend kindly granted permission to repost here.
You took the words right out of my mouth…
“I’m just saying hi and hoping you are doing well. I am doing well and enjoying a period of blissful calm. It was sixteen months yesterday since BMT.
“I’ve been reading your blog and saw your husband’s post last week and your recent post yesterday. Your husband’s post I’m sure mirrors the feelings of other husbands (mine too) and caregivers out there who have been there every step of the way with their loved one. Their loved one is doing ‘fine’ and everything is mostly ‘normal’ again, but there is always this undercurrent of issues to be dealt with at times, mostly physical but also mental. I sensed a great deal of frustration in both posts. That’s just my take on it. Because me and my husband have felt the same at times. Once we left the cocoon of constant monitoring and frequent visits to Hopkins, it was a little hard to cut the apron strings, but we eventually did it. We then had to transfer to our ‘local team’ for future issues that may come up. In my case, I am still being monitored by Hopkins because of the mixed chimerism. I found a local eye specialist (thanks to you), and am now asking around about a local dentist. The one I’ve had for the last fifteen years is in Parkville, and I really am so done with driving that far to see him. And his eyes sort of glazed over when I talked about GVHD of the mouth. I’m saying this after all the mileage we accumulated going back and forth to Hopkins. Go figure.
“So, we are sort of pushed out of the nest with gentle prods and glowing words to fend for ourselves. Don’t get me wrong. I’m so grateful for the world class hospital, doctors, medicines, etc. that I have access to and to my wonderful donor daughter especially. But in my mind I believe that all transplant survivors are very unique patients. It is really not like any other transplant situation, even heart, kidney, liver, etc. It is much more complicated, even though other organ transplants can cause problems too long term. I think that the follow up care and consultation with BMT survivors is severely lacking. The big teaching hospitals like Hopkins or University of Maryland are in the business of saving people, in the business of research and clinical trials, and to a certain extent the follow up care of those patients. But the follow up of issues that may return maybe two, three, four or more years later is pitiful. You would think that this would be a priority for them to gain as much knowledge as possible from former patients as to quality of life. We have all filled out some survey forms and have been very open about what is happening to us on a daily basis, but that ship has sailed in many ways. They are on to their next BMT patient, to give them the chance at life too. And now we are reduced to feeling like specimens in a lab when we try to get an answer to a physical symptom or condition. And if I hear the term ‘new normal’ again from anyone, I swear I’m going to throw something. That’s a term that has crept too much into the doctor-speak lately. An issue may be new, but it certainly ain’t normal. Someone at some seminar must have told medical professionals to start using it to help quell patients’ anxieties about disturbing symptoms. It’s not working. Not with me, at least. LOSE THE TERM.
“I’m on my soap box today a little bit. We just want to be taken seriously and given the respect of being treated well. And that includes a good conversational rapport coming from doctors, residents, interns, whatever, when they are examining you and talking about you, around you, but not to you. Hell, we’ve been through a lot. It’s the hardest thing we have EVER done in our lives. We want a gosh darn medal for heaven’s sake! Well, maybe not a medal, but a ‘job well done’ pat on the back. I’m crazy about my doctor at Hopkins and all the other medical professionals that helped me, but REALLY? I will see him again on Sept. 26, and will definitely quiz him about many things, especially the mixed chimerism.
“I am now off of all medication. I took myself off the Dapsone almost three months ago. They didn’t know it then. And then THEY said to go off the Dapsone and the Valcyclovir at my last visit. I have since found out that those two medications were the sole reason for my problems with eating and tasting and anorexia. Also the low red cells. Since I have gone off of those meds, the red cells have come up to almost normal, I no longer feel anemic. And I can feel hungry, I can eat anything and I can taste everything. Hooray. I spent a lot of months of anxiety, frustration and sometimes depression worrying about the red cells and the eating issues. I began to feel like I was crazy, Why couldn’t I eat?? If only my doctor had said to me, these two meds may be the reason for that, but just hang in there a little longer, and these issues will probably resolve themselves when we take you off them. He had originally said I would be on them another couple of years!!
“Thanks for listening to my rant. And I want you to know that I am always pulling for you. You’re coming up on three years. Wow. What a miracle. Blessings to you and to your ‘caregiver’ (husband). What would we do without them?”
I couldn’t have said it better myself!