Platelet Jagged Edge

Check this out, my platelet jagged edge.

Twenty-one months of platelet measurement for a chronic Thrombotic Thrombocytopenic Purpura (TTP) patient. Zero is bad, 200 is good. Doctors like to see platelets above 150. I like to see mine above 200.

Your body seems to work normal if we keep the platelets above 40 or 50. Once it drops down, then shit starts to happen. Everything starts to get sick, headaches, stomach aches, bruising, shortness of breath, …

When I’m healthy, I go to the clinic every four weeks to check my blood. I also check the week before I go travelling. I’m trying to make sure the platelets are on track. Eleven days before my last TTP detection, my platelets were at 224, well above the 150 barrier. I’m not sure how fast the platelets changed, but I was showing symptoms, just 9 days later. That’s life or at least my life.

When under TTP recovery, we measure the platelets everyday. If the platelets are up, there are a bunch of high-fives and we go on to the next day. If the platelet jagged edge goes down, then there is concern. Is TTP creeping back? Does Prednisone work? Do we up the level of plasmapheresis? 

As you can see in the chart, even when healthy, the platelet line is not always smooth. It is a jagged edge, as you probably have good days and bad days when it comes to the creation and the use of platelets. I guess I just need to roll with it.

Thanks, Bruce

@BruceFightsTTP

Don't Waste Your TTP

Don’t waste your TTP. This concept was brought forward to me by a former colleague, Gerv Markham, in his blog called Thank God For Cancer. Although Gerv’s blog does discuss how his cancer was designed for him, my interpretation is Don’t Waste.

Thrombotic Thrombocytopenic Purpura (TTP) is a blood disease which depletes the platelets. It has a low survival rate with no treatment, but about a 90 percent survival rate with treatment. Luckily, I have had successful treatments three times and am now working on my fourth.

TTP recovery can be a long process. For me, I am usually in the hospital for about 2 weeks. Then, I am discharged, but may have a month or three to receive drugs to try to prevent a TTP recurrence. I have had TTP four times, but I have also had the advantage of not wasting TTP repeatedly.

We do have choices. We can waste. It might be so much easier to grab some snacks, curl up on the couch and watch Netflix, forever. Problem for me is copious amounts of Prednisone - the steroid used to halt the auto-immune disease. I can’t just sit around. My mind keeps racing, so I need to be doing something useful.

I do a few things. I work on rainy day tasks and I help promote support for TTP patients.

Don’t waste your history. I am the oldest member on my side of the family, no parents, no grandparents. I have become a historian. I have worked on family genealogy. I have scanned hundreds of negatives, slides and pictures. I have prepared photo books to show the history and memories of our family, grandparents, parents, aunts, uncles, cousins, siblings, nieces, nephews and children. I have done wedding, birthday and family albums. My hope is that old pictures will not waste away in a box in the basement but will be presented as a collection to bring back memories and provide knowledge to my kids that their grandparents and great grandparents were real.

Don’t waste space and clothes. Look in your closet, your drawers. What is all that stuff? When did you last wear it? Does it bring you joy? I have my favourites and the others are in the way or are waiting for a room to be painted. Take a few minutes, be ruthless, and make some donations.

What’s in your basement or garage? Are these just storage places. I wrote a blog called Taking Back Your Home. I cleaned and took back our garage and we have had two fabulous winters with our cars nice and clean with no snow. Never did get to the basement, but then I have more TTP not to waste.

Finally, I enjoy writing these blogs and getting the message out. Our family supports the Answering T.T.P. charity and have joined them for their spring Chance for Change event and International TTP Day in the fall. In fact, @BruceFightsTTP has raised over $8,000 in 2017 and over $6,000 in 2018. We are looking forward to the 2019 events.

Give blood, hug a nurse and don’t waste your TTP.

Thanks, Bruce.

@BruceFightsTTP

Normal

I don’t think that I intended this blog to be a Thrombotic Thrombocytopenic Purpura (TTP) status update place, but, whatever, I have TTP for the fourth time, TTP #4. I guess we can debate as to whether I have TTP all the time or just occasionally.

I wrote another blog called Ignorant, Stupid, Chronic. All about how I have learned about TTP and have accepted that I am a chronic TTP patient. I’m not really fond of the word patient because normally I am not a patient, but I have to accept that I will be a patient. 

Being a TTP patient is a now a state of life for Bruce Morton, normal …

A time in my life to set back, take it easy and reset my blood. Too bad, no beer or Scotch, but whatever, normal …

I do have to ensure that I am productive in the so called regular season. Things need to be closed off. Not good to procrastinate and leave things open for the reset season. I think I have progressed at that and this should help Alanna, my boys and co-workers. 

I’m not sure what people think about Bruce and his TTP disease. Is it starting to get old? What’s the big deal, he keeps on coming back.  Frankly I can’t figure it out either except that it is now, normal …

And what am I supposed to do when I’m not fighting TTP. Just hang around the home waiting? Well, in the 20 months since TTP #3 in 2017, I have learned to curl, skated at Parliament Hill, saw a Concorde and Enola Gay, went to Vegas, was in a Blue Man Group show, saw the Hoover Dam, Red Rock Scenic Drive, Death Valley and the Alabama Hills. Saw plays Come From Away, The Hockey Sweater and went to London and saw The Book of Mormon and Bat Out of Hell. Toured to Edinburgh, Pitlochry, Inverness and the site of the Battle of Culloden. Enjoyed the Canadian Canoe Museum, went wide open in a bass boat, enjoyed the Ottawa River with our family and friends and had lunch with some Hell’s Angels (well, sat beside some Hell’s Angels in the restaurant). Enjoyed our 30th anniversary at Black River Resort, a week in Shanghai, another in Punta Cana and saw Sequoias in Yosemite National Park.

So now I’m just going through my reset, normal …, and starting to look forward to Greece, summer in Sheen, the bay and fresh Guinness in Ireland.

Normal …

Thanks, Bruce.

@BruceFightsTTP