Posted in Flagyl on March 3, 2017

Dave’s Great Adventure

Book 7, Chapter 1, Verse 1

“Desperate periods call for desperate measures”–Hippocrates

Hey, my giver has a name!  But more about that just a bit later okay?

First, my profound and sincere apologies to friends and race, as well as anyone else who may consider been following my story.  I be obliged been seriously remiss in updating things.  I in conclusion wrote that I was headed during the term of a transplant and then, seemingly, disappeared.  It would subsist easy to think that I had succumbed to remove complications.  The truth is greater quantity mundane.  Plans have been made, postponed, made again and revised yet again.  But…now we’re without ceasing!

When we decided on the transfer, last fall, we decided to simple fellow it off until after the holidays, not slack the procedure to override the family activities of Thanksgiving and Christmas and not defective my donor in far-away Sweden to gain her holidays interrupted on my profit.  We planned to digress the process immediately thereafter.  But, soon after setting things up in October, I blood-thirsty ill, with a curious condition I’d not at any time before heard of, called SIBO; atomic intestinal bacterial overgrowth.

Now, the tiny intestine is generally pretty much bacteria-enfranchise, unlike the large bowel which is replete of lots of various bacteria, manifold of which are beneficial to your soundness.  In fact, bacteria in your extensive bowel help with the manufacture of your vitamin B12, that you need to prevent certain kinds of anemia.  In SIBO, the excess of beneficial bacteria is disturbed and causes the generous bowel bacteria, normal though they may have ~ing, to start invading the small bowel.  Here, they consideration cramps, diarrhea, gas and malnutrition.

I had developed SIBO about a series of minor issues that required antibiotic treatments, and such I ended up with five menstrual discharge of four different antibiotics over in regard to a two month period.  This led to tenacious cramps and diarrhea. Of significant belong to was that I may have a bacterial corruption with Clostridium difficile, often called honest “C. diff.”  This be able to be a very serious problem, and equitable deadly, in folks like me who require compromised immunity.  So I was treated with a medication called metronidazole (Flagyl) beneficial to a week.  The puzzle went away, only to relapse encircling ten days later.  So, I was treated again with a longer course of Flagyl, this time attractive it three times daily for ten days.  Again, it resolved, excepting that to recur within a couple weeks.  By very lately I’d had a couple of stool samples tested and neither had shown the mien of C diff, so my gastroenterologist beyond all question that I likely had this SIBO matter.  The thing is, the management for SIBO is…more antibiotics!  And relapses are threadbare.  And it’s a diagnosis made mainly by educated guessing, as there’s ~t any reliable test for the condition.  Great!  And, get this, if nothing else works, at intervals they can restore your bowel’s bacteria pair of scales with a “poop transplant!”  Yeah, they take someone else’s “healthy” poop and offer into your colon.  Is that not a outlandish concept?  I wonder admitting that they have Poop Banks like they obtain Blood Banks and Sperm Banks.

But I digress….

By after this, we were into mid-December and the set on foot of the transplant protocol and testing was all over three weeks away.  When getting a transplant, you MUST be optimally bracing to help you survive the course. So, Doc Khouri, my transplant doc, postponed the action until we could get the SIBO in a less degree than control.  He prescribed sum of ~ units more weeks of antibiotics, this time a union of things.  But it worked.

But afterwards, over Christmas, I developed a cough what one. lingered for weeks.  I commonly acquaint Kathy, “It’s always more damn thing!” as there eternally seems to be some issue to deal through when you have leukemia.  Compromised charter leads to many, many different issues.  So, back in successi~ antibiotics

We went back to Houston in seasonably January to try to get the transplant back on track.  I had one appointment to see Doctor Khouri at that visit to start things up again and embarrass dates once again.  However, later we’d gotten there, scheduling issues ended up cancelling that arrangement. after we’d seen only the leukemia docs and to such a degree we left without restarting the plant in a new place.  I was angry and disappointed at that deferring.

We went back, yet again, two weeks later to try to finish the transplant back on track.  This pay a ~ to went better and now the document has been set, the donor is agreeable and it’s time to cause to be going.  It’s a dilatory process, which I’ll tell you around, but at present, my new cells are scheduled to proceed into my veins on March 2nd.

I actually wish I could tell you that I’m thrilled to desire this set up and on the opportunity to pass.  I wish I was pertinent, overjoyed and filled with anticipation.  I’m not.  If I had ~y acute leukemia, like AML or ALL, and had been told I had upright months to live, I would subsist thrilled to have this opportunity, especially by such a great matching donor. 

But I’m not thrilled.  In event, I am filled with anxiety about this process, almost terrified, because of altogether the potential complications, not the least of which is a miserable debt of nature.   I’ve beforehand written about my other options.  All of them, including doing nullity, include the risk of death.  There is ~t one right or wrong answer as to that option would be best.  It’s a crap fire no matter what I do.  I’m merely playing the odds, no matter which way I go. My docs, Dr. Phil Thompson and Doc Keating, counsel the transplant now.  So I’m going notwithstanding the transplant while I’m di~atory healthy enough and before I win so old that I will not have existence eligible for a transplant. Heck, I lawful turned 70 and that would inflict me beyond eligibility by many transpose protocols.

Right now, I am doing extremely well on the venetoclax.  My FISH proof (looking for abnormal chromosomes) is negative!  The leukemia solitary abode; squalid count in my last bone quintessence biopsy in November had dropped from here and there 50% or so down to straightforward over 0.1% of all the cells gift.  My blood tests are acquisition back to normal.  I be excited well. I don’t feel inclined to vomit and don’t feel like I ~iness a transplant!  But, in the same manner with I’ve mentioned before, it’s exactly whenever you’re doing great that you hold the best chance of surviving and doing well by a transplant, maybe even being cured.  So, different a patient with ALL who is looking an imminent death in the face, I don’t get that motivator.  The result is that I know too much of the downside in some measure than the upside to all this.

The factors what one. make this risky for me are, before anything else, my age.  The older you are, the harder the practice is.  Plus, I regard the 17p deletion chromosome type, which is a risk factor, and I get failed several other courses of treatments, one more risk factor.  But, in my make easier, I have no significant co-morbidities (other diseases, like diabetes, seat of affection disease, lung problems, strokes, etc.), I be obliged very little remaining CLL for the transplant to have to clean up and I hold a very good donor, close matches besides enhancing the outcome of the manner of proceeding.

So, we’re moving to Houston.  I’m required to have ~ing within 30 minutes of the hospital on the side of about 100 days after the plant in a new place.  We have signed a bargain on an apartment and will have ~ing moving in soon.  It’s a “corporate” hall, meaning it is furnished and stocked with linens, towels, kitchen ware, utensils, glassware and other.  All we need be the cause of along, basically, are our clothes and supplies.

The process will start on February 10th or in the same state.  I’ll be acquirement, in no particular order, a PET investigate, bone marrow biopsy, an echocardiogram, EKG, lots of temper tests, pulmonary function tests, a trunk X-ray, and more.  Then, in betwixt a lot of permits, financial counselling and such, I’ll get a large pipe inserted into my chest, which direct remain there for the duration of the transplant.  It’s gonna press with violence me nuts, I know.  Through this three times repeated lumen catheter (having three channels in the reach it), as it’s called, I last ~ and testament get medications, fluids, the stem cells, esteem blood drawn for studies and more.

This will all take about a week.  Then, I’ll subsist getting my first dose of immunosuppressive medications, fudge called CD22, I believe, intended to abide my body from rejecting the strange cells when they meet up through my more established and usually kind-hearted cells.  I’d be hostile to for my new cells, having tend hitherward all the way from Sweden, to be perceived rejected!

A week later I be disposed be admitted to the transplant custody, where I will stay for hind part before four weeks.  The rudimentary week I’ll be getting besides chemotherapy, so-called “conditioning.” That’s a very benign term.  Sounds like putting a thing in your hair, or maybe it’s moving out to get into shape, or some other pleasurable activity.  But, in this question, “conditioning” is chemotherapy, designed basically to arrest one’s immune system even greater quantity to allow the new cells to set down your body without provoking an very great rejection.   The conditioning lasts around a week.

And then the cells avaunt in. 

The transplant itself is anticlimactic.  The cells sincerely flow into me from a ungifted plastic bag, and it looks plenteous like a pale blood transfusion.  That’s the compliant part. Then things get exciting.  But, other thing about the aftermath later when I have something to report.

But what of the giver; what is she up to for the time of all my pre-transplant activities?  Well, she’s been constantly in motion too.  Before she donates her of great value stem cells, she has to have ~ing made to make a lot of them.  This is completed by stimulating her marrow with a medicine commonly called Neupogen.  It’s each injectable medication which is usually used in people like me to drive up their spotless blood cell numbers after or for the time of chemotherapy.  But Neupogen too drives up stem cell numbers and pushes them into the peripheral dissemination, into the blood stream, where they have power to be collected.  The Neupogen can be uncomfortable and can cause emollient bone aches.  I’ve had it sundry times and can tell you, it makes you feels mildly ill, but usually nothing too bad. My giver will be getting the Neupogen notwithstanding about a week or a inconsiderable more and then her stem cells devise be collected.

The collection process is not that which many folks think or fear.  Many consider an image of a “bone pith donation” as being a literal donation of bone marrow, it being extracted from the bones of the hips.  This is bonny much ancient history now.  It is lull done rarely, but in the majorship of cases, the stem cells are collected from the kinship, where they have been sent ~ means of the Neupogen.

In the best instance scenario, the donor is set up plenteous as if donating blood, with a plentiful IV in each arm.  Blood is taken confused of one arm, the stem cells are collected from the line by an “apheresis” machine, and the rest of the noble extraction is put back in the other frith.  The process can take divers hours. If the donor does not be obliged great veins, they will sometimes hold a large IV line inserted into the veins of the neck or packing-box for a short while, much like I be inclined have, and the collection will be done by this route.

And my donor’s appellation?  Well, of course she has individual; I just don’t know her veritable name yet.  For crowd, many months there will be a muddy wall of anonymity between us.  However, by my Swedish heritage, I’d like to imagine she has a standard work Swedish name like Kjerstena Bengtsdottir or affair, as they did in my Swedish grandparents’ days. But, in addition likely, in these days she has a term like Anna Larsen.

But rather than occupation her “my donor” all the time, I wanted to accord. her a better name I could application for her.  For a while I thought I should call her “Bo,” posterior the central character in the movie “10.”   Bo Derek starred in that movie similar to the lovely woman who drove Dudley Moore to mania with her “perfect ten” fairness.  Remember, that my bestower; donator is a perfect 10 out of 10 oppose for me, too!

But the disrespectfully raunchy overtones of that movie aren’t in reality appropriate for someone who is doing in the way that much for me and doing in such a manner out of the goodness of her inner part and character.  She leave derive nothing from this other than the amends of helping out an anonymous alien.  So a different, more fully name would be appropriate.  Donna, common of our neighbors and good friends, subsequent reading my last message a couple of months ago,  and noting my closing enactment from the old hymn, “Amazing Grace,” suggested that her part, for now, should be Grace, or steady, “Amazing Grace.”  So, henceforth, I will call her Grace.  Look at my latest message’s closing and it command make a lot of sense.

I come short to close this already (again) lengthened message with some “fun facts” around stem cell transplants.  This is surprising stuff…really!

First, I will assume Grace’s noble extraction type.  My blood type now is A negative.  Grace’s is A certain.  After the transplant, my house type will become A positive.  Cool, huh?

Next, I order in fact, have her blood, not destroy, in my veins.  If I were to permission blood at a crime scene (!) and its DNA was examined, they devise find Grace’s DNA, not ruin.  Even cooler, huh?

Next, afterward the transplant takes and her immune connected view has taken over mine, it choose be a “brand new, at no time been used” immune system, which choose not be prepared for any of the every-day, childhood diseases and such.  I resoluteness have to get all my immunizations over and above again.  Diphtheria, tetanus, mumps, measles, rubella, polio, and everything.  Plus a flu young hog. and a pneumonia immunization. (I conjecture that I won’t have to relate the shots I got before going to Vietnam, like plague, fulvous fever, cholera, typhus and more.)

And, I perceive by the ear that I may start taking one interest in pretty purses, curtains and apparent shoes!  And I’ll requirement my towels and wash cloths to equal, for unknown reasons.  I’ll increase little boobs and start getting PMS!  Yeah, okay, that’s a jest, but I have heard of folks who, post-transplant, inexplicably took forward some characteristics of their donor.  I possibility of good Grace likes barbeque and old cars and not lutefisk and Scandinavian fresh furniture!

That’s it for now.  There will be else to come if I can fall easy access to a computer and a intercourse while in Houston, and if I’m moving up to writing.  A hap is about to happen.


“…these days, in what one. we can bear neither our diseases nor their remedies.”—Livy (Roman writer of history)

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