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The scariest moment of my life

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Object Title: The scariest moment of my life

 

Page By: PAROFES

Created/Edited: Aug 1, 2012 / Nov 17, 2013

Object ID: 803637

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knowing your own body

The old saying goes: "Nobody knows your body better than yourself." Since January this year I noticed several changes in my body that made me uncomfortable, and because of that I decided to investigate, and then I’ll use another old saying to illustrate this different story: "He who seeks, finds". Here is the result...

It all started in january this year with out of control pimples, when I went off the last job I loved, and was the first which actually I got fired in my entire life. Pure politics. Canker sores worst of all I've ever had in my life (since a kid), some took approximately 25 days to close and hurt so much I had to take painkillers to be able to eat while I was with Lilianne in my honeymoon. That was just the beginning, during the trip to the Andes, commemorative trip for the anniversary of my mother in law, and at the same Lilianne was with me to see the Andes mountains, and to know my beloved city: San Pedro de Atacama. The weather was bad, the mountains were accumulating meters of snow, and with access roads closed, daily rainfall in the city, flooding, then all associated with a heavy flu made me anticipate the flight and come home.

Once I got home from that trip I rest for a couple days, and I got worse, so I went to the hospital emergency room, as I almost could not breathe well and even walking slowly was an effort, and I was very weak. Diagnosis: Pneumonia. Ten days of heavy antibiotics and bed rest, I recovered completely and easily.

After only a few weeks I went to visit a friend (Beatriz Azevedo) with Lilianne in Rio Grande do Sul, taking Lilianne won the prize in a raffle at the end of year party in her work, a trip with plain tickets and hotel paid for both of us, for a weekend in Porto Alegre. Very cool! The trip was great (we met personally Beatriz and Miriam, two virtual friends that came to be real ones), but, the trip was painful...

On the second day my toe started hurting and never stopped, only increased until I could barely walk. I re-evaluated my concept of pain after that, it hurts a lot because of the increased branching of nerve endings at the tips of the hands and feet... I even did the first removal of dead tissue myself, removing all of it at the fifth day already back in Sao Paulo, and through a friend of mine managed to solve the problem definitively anesthetized via surgical intervention, since even though my mother in law is a podiatrist, she does not have legal permission to numb the area, and I needed a canthoplasty. Without anesthesia "No freakin’ way dudes!"

From there I started to use my health insurence weekly. I started a general check-up. As I began my text, I know my body better than anyone, and I noticed a weakness greater than normal, I noticed the drop in my way of hike, getting tired faster and faster. That worried me, but I associated with inactivity in the mountains, causing the drop on my body shape.

I did a Echocardiogram, normal and "with honors". I was tested on a treadmill with light walking, heavy walking, and running. Test: Normal and "with honors". I did a new x-ray to make sure the cleaning of the inflammatory process, lungs clean. Urinalysis, normal and unchanged. I did the first full blood test: Mild changes in white cells and platelets: Situation anemic with 102,000 platelets (normal to my age would be above 300.000).

That explained my facility to inflammations as my immunity was low, not too low but enough to cause all these problems. Okay, I relaxed and started feeding better to raise the platelets, "punching" down many green vegetables, foods rich in iron, liver, lots of fried liver. At the same time, abdominal pain started daily, and this was in late march. Food for me was not difficult to change because, I eat all there is. I like pretty much everything.

New visit to the doctor, Dr. D, who gives courses and lectures on altitude medicine in CAP – Clube Alpino Paulista (São Paulo Alíne Club). As I would travel with Tacio in just a few days, she ask me to rest for at least 7 or 8 days before my return to the hospital to repeat the blood test (when I got back from the trip) and stool tests to look for worms and try to explain the abdominal pain, which was already going on for twenty continuous days.

We went to Itatiaia NP, spent five days and four nights on the east border of the park and during all this time, apart from the normal physical fatigue after strenuous days, cold nights, and my constant delay behind Tacio of about 3 to 5 minutes, which I consider good since Tacio is way more active than me, I did not felt absolutely nothing, no pain, nothing. I was okay, our trip was very good and you guys already saw several photos of it. Once I got back home I rested for 8 days and repeat the blood test, did the stool test (came out normal) and total abdominal ultrasonography (which was normal too).

Platelets had improved a bit even after 5 grueling days, to 136.000, but something disturbing came up on the test, blast cells, 5% of them, a shift in white blood cells, the body's defense. The technique itself which analyzed my blood called me very nervous and said she would recommend a more specific test, because something was seriously wrong with me, or drugs that I took for the pain damaged the exam. She recommended that I should show the test to my Doctor as soon as possible, what I could do the same day passing the access code and password so she could see it online (here in Brazil 90% of the tests we can see it online, so if you wanna show your doctor exams very fast, we can just give them the access code, password, and that’s it). She saw the test results, called me and said: "Paulo, look for a hematologist asap."

From there I realized it was serious, even by the history of my family since my mother suffered from a hematologic disorder, PNH (paroxysmal nocturnal hemoglobinuria). I was worried. I remembered that the technique told me on the phone, on such "blast cells". I went to the master of all, “Mr. Know it all”, google. Within seconds I found the concern of the womam, and I shared the feeling with a touch of despair and disbelief. But unfortunately, when I read what I read, everything was explained quickly. All my health problems. I am a very inteligent person, self learner, so I know a lot about my body, the human body.

I went consulting with Dr. P, a lovely person, super helpful, polite, fun and the best that a doctor may have, frank. Consultation with a hematologist is interesting: I got to the office, made the register, left both blood tests with her employee and waited for half an hour. At first I thought it was kinda strange to wait all this time since I was the only one waiting in the office, but then I understood.

When I went into her office she had an sheet full of notes and accounts in her hand writing, all on the side of my blood tests. She introduced herself and asked me what was happening. I spent five minutes telling all the story I just told you guys. When I finished, she said: "Paulo I just saw your tests, and you notice I have analyzed everything before you get here, I was ready to admit you on a hospital today by the poor test results. But seeing your story and seeing you here giving your testimony as well as you are and without any complaint, I changed my mind. I was hoping you d come in here complaining about several things, but you are amazingly well and it almost looks like another person, not this one from the blood test."

I’ll explain, she thought I would complain about a thousand different things, widespread pain, fatigue and on and on. She examined me: Pressure as always normal (12/8), oxygen saturation 100%, and heart rate was also normal. She felt my abdomen and felt nothing wrong (she was looking for swelling spleen – normal for my blood test). Shortly after, I confided to her my suspicion (wanted to show that I read the test and studied it, I knew the possibility and even more, I wanted her to talk sincerely with me), and she said that my hematological picture was exactly what I suspected even after spend seven days on the internet studying hours a day. I was right. She requested specific tests and told me to try to do them on my health plan, but if it took too long, she would rather admit me to do them immediately. I left her office and down the road to go back home after a 35 minutes talk. I called Lilianne who was at work and on her 28 years old birthday and I told the news. She could not contain her tears and cried. After we hung up, I continued walking the streets alone and crying for 5 or 6 blocks until I got to the bus stop.

I spent the day, May 25th, sending e-mail to the company that assists me to do exams, and to do everything she asked me, the first available date was September. We spent Saturday and Sunday at home, we made a lunch to celebrate Lilianne’s birthday, and monday morning Dr. P called me immediately to know what had happened and I confirmed the unfavorable outcome on attempts to schedule the tests. Her assistant handed me the phone at the Institute of Hematology Institute of Sao Paulo, and I tried but even with a better date, still was a long waiting list, July. The decision was immediate hospitalization.

A note: I was writing this text still in Santa Paula Hospital here in Sao Paulo capital.

On the same day just after lunch Dr. P called me and told me to come over to the hospital to admit me, she had a friend, also an hematologyst, working there, and he was gonna look after me. There I was, I arrived on the may 28th at around 13:35h, it took me nearly seven hours to get the paper work done with the health insurance authorization, and get to my apartment, my temporary residence. During my time there I've done the tests that consisted of bone marrow biopsy, immunophenotyping, four full blood tests, red blood cell test, etc, etc, etc...in just one day they withdrew 15 tubes of blood for exams and my arms look like the arms of an intravenous drug addict.

One day, almost midnight, I went down to do a CT scan to find out what was causing me abdominal pain, which came out normal too. Now I,ll explain the scariest moment that gave title to the text.

The so-called “bone marrow biopsy”. By Crom, what a scary moment, the anesthesia is local...but even with virtually no pain, you can actually feel the whole procedure. The whole thing takes between anesthesia and bandages about 30-35 minutes, depending on the patient's body (fat or thin), the experience and confidence of the physician. He explained everything before making (Dr. A) and told me that I d feel the blood dripping or splashing, but not to worry because everything was happening at the time was under his total control.

It was very, very scary, I was scared shitless, I never got so scared in my life with something “scheduled”. He anesthetized, made the first hole, collected bone marrow samples for immunophenotyping, philadelphia, and then switched to the more complicated, bone specimen. Warned me that I d feel strong pressure, and I felt it. Wow, it was like a wrench tightening inside my bone, I felt the needle going in, but did not realize the size of the "stab".

I was sweating cold, was tense, but managed to stay perfectly still while feeling the blood flow on my back causing me tickled. lol

When he finished he cleared the wound, fixed me up and I could turn around. I asked him to show me the needle used in the procedure and to my misfortune he showed me. Although impressed, I lost no time to make the joke, "Man, if you show it to me before I wouldn’t let you collect the samples, and more, I d punch you in the face and probably d run to the hall accusing you of attempted murder". There were two minutes of loud laughs, the Doctor’s, his assistant’s, and me (on my part 20% because of the joke and 80% out of nervousness). It was good to break the ice of the seriousness of the procedure.

I do not know if you guys know what is the needle for bone marrow biopsy. Looks like a cork removal tool with cable and all! The only difference is that it is straight with no curves and a little bit thinner. But even though thinner is infinitely thicker than a normal needle, I think it is 3 or 4 mm thick, and the needle itself, without the cable, about 8-10 cm! Get out of here! That’s a killer’s tool dude!

Of course, the thinner the patient is, less is the distance between layers of skin, fat, flesh, muscle until the bone. The more fat, more needle enters and it is worse for patient and for the doctor, more difficult to perform the test. In my own case, was used about 4cms deep to take the bone and the sample was about 2.5 cms in size, so less than 2 cm of tissue to reach the bone. It was easy for Dr. A.

Already a psychologist came to talk to me while in the hospital, Dr. S, whose care did not please me much. She wanted to see me to grieve, cry, question myself, and so on. She did not believe that I understand what I could have, and I accepted one hour after the news, and understand the seriousness of all this. I may be killed in one year, two, or five, or I can live the rest of my life. But everything is due to the fact that my bone marrow has undergone a shift earlier this year, a chemical reaction that went wrong, and has not finished my blood cells, releasing immature unfinished cells into peripheral blood. The so called Blast Cells.

Photo section

Video example of the Bone Marrow Biopsy - NOT MINE

This is not me, but I did the exact same thing. The kid of that test is doing okay, he found he had Leukemia, did chemotheraphy and the transplant, and he is cured!

Back home and more

 
Me, trying to protect myself
André Rieu concert with protection!
 
Another one on André Rieu Concert
Another one on André Rieu Concert!

When my Doctor, Dr P send me to the hospital to do the tests, she was 85% sure I had LMC (Leucemia Mielóide Crônica). This is Leukemia. Now, this dropped to around 40%, not confirmed since the philadelphia test came out negative. I was tested again 4 weeks ago for Parvovirus (normaly affects dogs, but in 1975 researches found that it affects humans as well, and in serious way, destroying the bone marrow, and it was classified in the early 2000’s as “Parvovirus B19”), which also came out negative.

Now, the line of thinking is Bone Marrow Aplasia, maybe temporary, maybe definitive. In either way, probably I’ll need to do a Bone Marrow Transplat to keep going on, anyway, I don’t know yet what I have...

My platelets still very low, 85.000, so I have to avoid cuts, too much people, infections and all that...Even so I was hiking a few days ago and felt great, a little short of breath (since I don’t have also enough red blood cells to carry oxygen), but it was okay. Right now I can’t go higher then 3.500m, I would probably die of Cerebral Edema in just a few days. The abdominal pain is still here, 24/7, never ending. It gets stronger after 6pm (GMT - Brasilia) so I never get online here after that hour, and this explains why I never upload any material and don't vote after 6pm, in general I am in my bed watching The Big Bang Theory, ER or Breaking Bad lol...

This article was published to share with my Sper friends who got worried about me and care about me, if you don't fell like or don't want to, there is no need to vote. This will be updated as soon as I have news, my next doctor appointment with Dr P in on August 9th, and a few days before that I have another blood test to do, wish me luck!

Special Thanks to Liba, who looked at some of my tests online from home to give me a third opinion.

I am sorry about english mistakes, and one last thing, wish me luck! :^)

Parofes

Timeline - UPDATE IN Aug 7, 2012.

Decided to establish a timeline of the events so I can have all data organized, it's for the best.

>Dec2011 - First symptoms appear, difficulty of the body to fight small infections such as pimples, canker sores.

>Feb2012 - Pneumonia out of the blue. Hard to cure.

>March2012 - Some fatigue, weight loss and a hell lot more pimples.

>Late march2012 - It starts the abdominal pain, first blood test shows anemia.

>Early may2012 - I gave another push on my project to summit all 35 highest brazilian peaks (no one has ever done that before) with Tacio Philip at the east border of Itatiaia NP. That was pretty damn hard but I felt normal and I had no idea of my illness whatsoever.

Mountains we summited:
Maromba Peak
Marombinha Peak
Cabeça de Leoa Peak
Cara de Gorila Peak

Elevation gain in 4 days and 4 nights: 10.670 feet
Distance hiked/ scrambled: 34kms


>May2012 - A week after I came back home from Itatiaia NP, I went to my first visit to a hematologist, she tells me I probably have Leukemia.

>Late may2012/ early jun2012 - Six days in a hospital for all the tests which would confirm or reject the Leukemia theory.

>Jun2012 - Pimples hit a fantastic number, all over my head (around 15 big ones), beard area and pubic hair area. Hematologist gave a prescription for antibiotics to fight the huge pimples. Ten days of treatment with that.

>Late jun2012 - Pimples controlled for now, new blood test, still very low on platelets (but a bit better, 105.000) but the bad cells (blast cells) are now so low the test not even detected them. The certainty of leukemia dropped from 85% to around 40%, great news! New theory in on Parvovirus B19 and Aplasia.

>Late jun2012 - Finally came out the result of the test on Parvovirus B19, negative for that too, theory now is Bone Marrow Aplasia (could be temporary of definitive which would require a Bone Marrow Transplant).

>Early jul2012 - Bored as hell, felling a lot better I set up a visit to my friend Pedro Hauck on Curitiba to hike a easy mountain and see how I am doing. The mountain is Capivari Grande, very beautiful mountain with fantastic views, and easy, very easy. Only 1.270 feet of elevation gain and we divided in two days to go easy on me. Felt great.

>Late jul2012 - New doctor appointment with Dr P in on August 9th, looking foward too!

>Late jul2012 - Feeling very confident in myself I decided to take things to the next level, bigger altitude gain, so I set up a trip with Tacio Philip and Aline (his GF) to two brazilian mountains. One very popular and another no one heard of for years.

>Late jul2012 - Game face on, meet with Tacio and Aline and went for the unknown Mitra do Bispo Peak, which was way easier than we thought. Elevation gain of 1.870 feet in one single push, 2.5 hours. Felt great with a little fatigue on the way down.

>Late jul2012 - On the same trip, with only one night rest we went to the very popular Papagaio Peak, which had a bigger elevation gain, but supposedly easy. It is easy but I went for the traverse against my body decision and this was a bad idea. Elevation gain of 3.330 feet in one single push, almost killed myself...Bad call Parofes, bad call.

TR available today on SP: Bad blood doesn't help much

>Aug2012 - New month, August comes and with it the abdominal pain hits the number of 120 days, 24/7. Damn that's a "pain in the ass"!

>Aug 06, 2012 - Just heard news from Dr. P, her secretary called me last night and said Dr P had to suffer a surgery (she didn't tell me what for of course) and had some complications, the appointment is off for undetermined time...
I feel bad for Dr P, she is a lovely person, and got worried about me of course.

>Aug 07, 2012 - I just called my health insurance and found another hematologist with the best luck ever, new appointment with new dorctor on Aug 13th. After all, a second opinion is never too much...And the best thing is, I already have all the tests done. Pimples are getting back slowly, but still big ones.

Timeline - UPDATE IN Aug 10, 2012.

>Aug 10, 2012 - Good news about Dr P, she's okay back home and will be back at work by monday, so her secretary called me again, my new appointment with her is on Aug 13th, next monday! I feel better already...

Timeline - UPDATE IN Aug 14, 2012.

>Aug 14, 2012 - Yesterday I was at Dr. P for my appointment. We talked for about twenty minutes and after that she said to me she decided to go for the Bone Marrow Aplasia. So, She gave me directions to see another physician, a Bone Marrow Transplant Expert, as a transplant candidate for a bone marrow.

So the appointment is for tomorrow, August 15th, here in São Paulo city center. Soon, more news...

Timeline - UPDATE IN Aug 16, 2012.

>Aug 16, 2012 - So I saw the transplant expert, he thinks I have bone marrow myelodysplasia. Different, and he must know what he is doing, I don't know...

So as his new patient I just had to do almost all the tests again, Myelogram, karyotype, Immunophenotyping, Philadelphia, all over again! Today. And I did...The anesthesia is wearing off, so I'll lie. Sorry folks, I won't be voting today.

 
Not again...(unfortunately yes, again)
All over again...photo from today, Aug 16, 2012.

Timeline - UPDATE IN Aug 21, 2012.

>Aug 21, 2012 - Well, I talked to my two sisters that still live in Rio de Janeiro, so they will come to São Paulo to do with me the test of bone marrow compatibility. Hope it will be really high, over 95% (with luck of course...Brothers and sisters normally reach around 75-80%, and that is not good enough to be sure).

Timeline - UPDATE IN Sep 4, 2012.

>Sep 4, 2012 - News finally. Just got off the phone with the hospital, and the date is set for me and my two sisters to show up to perform a HLA test.

The HLA test (human leukocyte antigen) is the name of the major histocompatibility complex (MHC) in humans. The super locus contains a large number of genes related to immune system function in humans. This complex test will tell me how much me and my sisters share our compatibility, so they can donate me some bone marrow.

The test will be in sept 18th. So I expect to know the results within a few weeks after that maybe.

In the meantime, I'll keep enjoying some coffee...
 
Coffee?
 

Timeline - UPDATE IN Sep 10, 2012.

>Sep 10, 2012 - Went to Rio de Janeiro to visit my family. Long time no see. Especially my aunt (15 years!). So I did a few cool shots. Here they are...
PS: The big day is close, sep 18th...

Timeline - UPDATE IN Sep 19, 2012.

>Sep 19, 2012 - Went to Hospital das Clínicas with my two sisters to do the test which will tell me how much me and my sisters share our compatibility, so one of they can donate me some bone marrow.

Got the results for the last tests, a new name came up: Bone Marrow Hypoplasia. Now I have some to read about for more 18 days, the time it will take for me to know the compatibility test result.

More 18 days of waiting...

Timeline - UPDATE IN Oct 2, 2012.

>Oct 2, 2012 - Against all medical records and orders, went to Sierra Fina range with SPer Flavio Varricchio to keep going on my brazilian project and to enjoy some nice photos. We spent 4 days and 4 nights at the Sierra and summited these mountains:

Capim Amarelo Peak - 2.500m
Melano Peak - 2.566m (soon to have a mountain page in SP)
Mina Rock - 2.798m (sixth time for me)
Pico do Avião (or Plane Crash Peak) - 2.704m
Cupim deo Boi - 2.542m (second time for me)
Pico dos 3 Estados (or 3 States Peak) - 2.665m
Pico Alto dos Ivos - 2.524m (soon to have a mountain page in SP)

Now I have several serious facial sun burns, lip burns, sore throat, fever, and multiple bruises all over me.

Good news, I was waiting for it to confirm so I didn't spoil the fact, the abdominal pain finally stop! \o/
This makes me very, very happy, after over 140 days with it...


Have to be more carefull...

 
Summit of Capim Amarelo Peak
Summit of Capim Amarelo Peak

Timeline - UPDATE IN Oct 16, 2012.

>Oct 16, 2012 - Damn...No results back on the HLA test yet. Just got off the phone with the hospital, they say they're sorry but it's just taking too long this month to get results back. Sick of waiting...It better be good news so the waiting can be worth something...

Last night me and Lilianne completed one year of marriage! So, I'll put here a link to the article about our marriage, if someone wants to read a fun story: "A Mountaineer's wedding"

A photo of our wedding cake (we did the fake cake, me and Lilianne!):
 
Our wedding cake!
One year of marriage!

Timeline - UPDATE IN Oct 21, 2012.

>Oct 21, 2012 - No results back yet...damn...hate that.

So, We adopted a 3 months old dog. We love to help and since she was born, she have been living in a shelter for homeless dogs and cats along with 150 others. The funniest dog ever! We named her Mussarela ahahahahha...

She doesn't have a defined race so we (brazilians) just call that here as a joke: "Street Dog" (in english, not portuguese, so it can be fancy hehehe)

Maybe a little friend to Duchess? :P

 
New family member: Mussarela!
"Hey, I am Mussarela!"

Timeline - UPDATE IN Oct 23, 2012.

>Oct 23, 2012 - No results back yet. Now I lost my temper. Really Fxxxxxx SICK of this terrible waiting...

Now I HAVE the phone of the damn laboratory which was supposed to perform our test. I'll be calling them next week.

Timeline - UPDATE IN Oct 29, 2012.

>Oct 29, 2012 - Called today to the lab, they said the results were ready, and e-mailed me a pdf file with two pages, in one page my name and my older sister's name, and on the second page my name and my youngest sister's name. In each page, letters and numbers. I don't know how to interpret HLA test results and I don't have to because that's the Doctor's job. So I set a new appointment for Nov 14.

Hate all that waiting...I wish I could start the quimo already and just do the bone marrow transplant...Sick of looking at my wife working her ass off for both of us...

Timeline - UPDATE IN Nov 15, 2012.

>Nov 15, 2012 - Yeah, not very good news folks...I have now an oficial name for my illness: Bone Marrow Hypoplasia. This can of course evolve to a Bone Marrow Aplasia (when the bone marrow stops for good).

Last afternoon I was at the hospital with my wife for the appointment and I got sad news. My sisters can't be donors.

The best compatibility on the HLA test, and it was very good, it was with my younger sister, Gabriela, but to our disappointment, we found a small mismatch. This small difference is just in the most significant part of the bone marrow, which prevents the transplant, as the chance to go wrong because of this mismatch is very big, and going wrong, the likelihood of me dying after transplantation is too big to take risks.

So, no bone marrow juice for me. Have to look for donors at brazilian national bank and world bank.

So please, be a donor, you can save my life or other people life. W