Adverse Reactions

I had an adverse reaction to my new medication — but at first we didn’t realize it was related to the meds.     I was dealing with significant nausea for days  and that evolved to no appetite (plus the nausea).   I also wasn’t sleeping.    That combination of nausea+no food+no sleep  started making me a bit manic.   It was Tim who finally said, maybe it’s your new meds?  So we did some recon, and lo and behold, one of the top 5 adverse reactions to my new medication is nausea.  Fatigue is there too,  however I don’t exactly know if that translates to exhausted and couldn’t sleep.  Either way, the doctor pulled me off the medication  yesterday and I’m sitting here waiting for the nausea to recede and for sleep to come.

I am trying so hard to be positive and cheerful and like my sister, who has the “best attitude” about her health issues.   She’s so good at being positive that everyone compliments her about it.   I find I get pretty upset when I talk about what is going on with me right now, so I’m just not talking about it.  I don’t want people to have this perception that I am a whiny, depressed brat who is looking for pity.

That of course doesn’t change the fact that I am upset and I am struggling and that I am not myself.    I keep reminding myself  that with time I will feel better, I just want that time to come now.  I also know I need to continue to go through the motions/daily routine of my life, and that will make it easier to somehow move on.

Tim and I have decided we are not going to try this baby thing in October, or in 2009 at all.    We both feel that waiting a bit longer is not going to have that much of an affect either way.    I am so relieved.   I have 2 friends in their early 40’s that are both in their 3rd trimester.   

In 2010 we celebrate our 10 year wedding anniversary and in August 2009 we will have been dating for 16 years.  We discussed celebrating us and these milestones on a trip together.     Right now I’m going to focus on that.

Catch a breath

So, prior to the diagnosis, I think  Tim and I were gearing up, both together and separately, to attempt this procreation thing in the fall.  I’m not sure if I discussed that here.  

Now,  I still don’t know what I want, but I think that for someone to go through what I will have to go through to have a child, then maybe I should want it first?

I see and read about women all the time that dream of being pregnant.  I don’t.  I haven’t.    There are women who go through immense effort and personal sacrifice to have children.  These women want it.

We have this appointment with the high-risk doctor, and a few people know about it, more than I would have liked.  I feel a genuine loss of privacy.     Beyond that, I asked myself yesterday if  I am just going through the motions? 

I do not know what I want.

I do like to be informed though.  I need to know what I am up against.

It would involve twice daily injections and additional medicines and extra weekly trips to the doctor and very close monitoring.  Is that something you do on a maybe?

This whole subject exhausts me, but it’s more than just the baby thing.  People are commenting about my behavior.  My lack of spunk.  My lack of animation.    My sister was so vocal about it at a family party that I had to ask her to stop.  Between work and the doctors appointments and the fact that I cannot shut down my brain so it’s think think think all the time I feel like I just cannot get a breath.  I would like to catch a breath.

A little bit of this, a lot of that

It’s been so up and down here lately that I find myself just wishing for a few even days.

I no longer question if starting my own business was the right route for me.      There has been so much new business lately and the bulk of it has come in from referrals.   That makes me feel really good as it means my clients are happy enough  with my work to suggest my services to family and collegues.   For the past few months,  I have been able to pick and choose which projects I want.    After years of sucking it up and taking any bone I could get, it is a nice change of pace.  In fact, I am a jumble of nerves as next week I find out if I landed my biggest project to date.         Of course life is yin and yang, because I am currently knee-deep in all these health issues…

I’ve been inundated with doctors appointments, sometimes 2-3 a week, and that schedule will continue straight through to September.  I’ve had additional blood work and have 2 prescriptions for more blood work in my purse. 

I managed to land a cancelled appointment with a well reputed hematologist (#3 but who is counting) so I took it.   I really liked him so I am glad that part of this mess has been decided.  He is bringing in a clotting specialist and there is some relief in that.  He ordered a repeat blood workup, so it’s off to the lab to have another 40+ vials taken, that happens Monday.

I felt a strong need to just be with my family (my brother/mother/nieces) so I flew to Florida for an extended week.  I am lucky that I own my own business and can work remotely.  I took 4 vacation days and then worked from Florida for the balance of the time.   It was just nice to have dinner with my parents and to drive to my brothers for coffee.  I closed the week with a surprise appearance at my nieces 5th birthday party and flew home. 

Speaking of flying, the Lovenox injections were a piece of cake.    I had read that the medication itself can burn going in, but all I felt was  a tiny pinprick from the needle.  I did ice the spot on my stomach before injecting though.   I was a bit uncomfortable flying with the needles and notifying the security people that I had them, but it’s just one of those things you have to get over, I guess.

While in Florida, hematologist number 2’s office called to schedule a follow-up appointment as the doctor wanted to discuss the results of the additional blood work he ordered.    I informed her they could fax all paperwork to my new hematologist and hung up.   Within 5 minutes I got a call from the doctor himself (on his private cell phone) stating that the blood work did “not come back as planned” and there are “additional complications” and he “reverses his diagnosis and treatment plan.”    I hate to be cliche, but I did not know whether to laugh or cry.    On one hand Iwas relieved that the hematologists 3  diagnosis and treatment match,  I was also devastated to learn there is an additional factor that make me more  susecptible to blood clotting.  He described it as a “Lupus Inhibitor.”   Incidentally, the day he took those tests, he felt rather strongly that “everything would come back fine” and then I could “stop worrying.”    I guess I proved him wrong, huh?

This week I had my first appointment with the heart doctor and he has started scheduling tests to determine if my increased risk of clotting has affected my arteries.  I also picked up an additional medication.     As each new doctor is introduced, they ask “so what medications are you on?” and gone are they days where I can respond with “none.”  I confess I have been struggling with that.

We have made no decisions on the baby front and are waiting to discuss our particular situation with the high-risk OB/GYN before we do.

My new cholesterol medicine can cause muscle ache and fatigue and that’s been fun in tandem with the Precision Nutrition workouts.    The first day of the Lean Eating program  I overestimated the amount of weight I should use and couldn’t walk for for days.    It was pretty amusing.    I guess I was just excited to start?   We are in the middle of the third week and it’s been very educational.    For the first month we are practicing core exercise moves and stretches 6 days a week.   There are also daily lessons (read this article or watch this interview or think about this an resond, etc).   I just submitted my photos (not pretty but I am a work in progress!) and will submit my measurements tomorrow.   I’ve always been a cardio girl, so  I hired a trainer to explain some of the exercises as they are completely foreign to me.    I start with her on Tuesday.  The program preaches patience, patience, patience, so they have yet to delve into the full nutrition aspect.  Nonetheless I’ve been able to figure the bulk of it out from the general PN message boards.    The first nutritional habit is to take concentrated fish oil, but I am already doing that as per the heart doctor and the hematologists 3.

Lean Eating with Precision Nutrition

I was fortunate to land one of 100 spots in the 6 month Precision Nutrition Lean Eating program.  I am not only intimidated, but compared to the other team members, I also feel out of my league.   In fact, there are a lot of trainers, athletes, gym owners and the like participating.     Nonetheless, I am forging gamely on.  My immediate goal is to be healthier, my secondary goal is to lose 40lbs, as noted by 5 (count ‘em) 5 doctors.  Every single doctor (and I bet the new one on Wednesday) have prescribed increased activity and significant dietary discipline. 

This week we are concentrating on exercise and today we had to practice 13 movements including squats and lunges and deadlifts.  Oh my! 

This was my first time doing a workout like this.  Historically,  I’ve always been more of a cardio girl. I brought a friend, my printed images of each workout, and then setup shop in the more casual weight room off the women’s locker room of my gym.

For the most part I did 3 sets of 5 reps each with 5lb dumbells. I was a bit wobbly after and my hamstrings and butt are feeling it now.

They don’t start in with the nutrition part of the program till next week, however after poking around the message boards I see what’s in store for me.  I confess I’m looking forward to it.

Conflicting Diagnosis

While Hematologist #2 confirmed I do not currently need to be on oral blood thinners and that I don’t have to do a complete retake of my bloodwork, he was a complete asshole, and I won’t be returning.  Furthermore, some of his diagnosis contradicted the first doctor (and a lot of my research), so I came out of the appointment confused and upset.

He completely blew off my Prothrombin Gene Mutation, Hetero MTHFR, and slight Protein S difficency — saying they were not a big deal!   It was such a departure from what I had learned from the inital doctor and what I had read on the internet, that I was really taken aback.  He did, however, draw additional blood regarding AntiCardioLipin IgM (we are waiting for the results still) — but explained he didn’t think it was an issue either.   He also felt I did not need to medicate to fly and I did not need to medicate to have a child either.   There is a significant and drastic  difference between injecting yourself with blood thinners for 1- air travel and 2-  twice daily for the duration of trying to conceive and pregnancy and, you know, not doing that at all.     

I think the reason that hematologist #2 is Mr. Casual is due to my never having a clot -or- a miscarriage.  He flat out told me he would not prescribe Lovenox until I had multiple miscarriages or a clotting event.  I think that’s heartless, frankly.  Especially since he didn’t feel there would be harmful side effects to me while on the Lovenox?  Without the meds, a woman with my situation could miscarry often and/or throw a life-threatening clot during pregnancy – so why not be proactive?  He actually questioned why I had the tests done in the first place?  Hi- there is a huge family history of stroke from these types of mutations.  My husband and I didn’t particularly like his demeanor so I won’t be returning.  He started off with some pretty offensive comments and then was cracking jokes and implied we were wasting his time as he sees people “so much sicker than me.”  I kept thinking, but I am here now, and this is very real to me, and you’ll have no problem charging $400 for this 30 minutes, huh?  He also made some snarky comments at Hematologists #1 diagnosis and protocol — and I think that’s very unprofessional.

Tim and I have had a few days to digest everything and I think we have a plan of action now.    For the time being, I am going to stick with Hematologist #1.  For peace of mind, and the slim chance I will clot on a plane, I will inject Lovenox before I fly.   Both doctors informed me I should not try to conceive prior to consulting with a high risk OB/GYN.   Given this, we have decided to table even the decision to have children till after I get through all these tests and sit down with a high risk OB/GYN.   It’s just logical that we cannot make such a decision without knowing all the risks.  

We have since located a well-reputed, high risk OB. In fact, this doctor has a specialty in dealing with women with my type of genetic mutations.  He also practices at the hospital my family is comfortable with.   That’s helpful, because while I will be my own advocate and choose the doctors I want, it will be significantly easier if my family is on board.     The first appointment the OB had for a “pre-conception consultation” was August 5, so I took it.  While inquiring about the high risk OB, I asked for the name of the best hematologist around.  At the end of the summer, I may get the “tiebreaking” opinion from him.  

I have not yet told the bulk of the people in my life what’s going on.  I’ve been visiting doctors nonstop for the past few weeks and have also become withdrawn.  At first it was because I really didn’t understand it (so how could I explain it?)  coupled with an intense need for privacy.  It’s still some of that now.    People are asking me why our relationships have suffered and I don’t know what to say.   I am just tired all the time.   I don’t want to be pitied, I don’t want to be the center of attention, and I don’t want to have to re-hash this again and again.    Right now, it just upsets me — so talking about it over and over and reassuring people doesn’t help me. 

We are flying to Florida to visit family in a 10 days and I’ll be bringing my needles.    I’m not at all upset about injecting blood thinners to fly, because as my primary doctor said, if there is a 1% risk of clotting, that’s enough.  I’m more worried about explaining the needles to my mother and my traveling companions.

Diagnosis from Dad

I have an appointment with the second hematologist tomorrow.   My husband and father are joining me.  This will be their first interaction with one of my doctors and while my husband and I are (mostly) on the same page, my father is in a completely different library.   I must confess that part of the reason I agreed to the second opinion is because my father is either treating my diagnosis casually or demanding protocol neither of my doctors agree with.    He is demanding that I go on oral medications; mind you these are medications I am not allowed to take if we want to try to conceive.  Furthermore, my doctor is unwilling to prescribe them even if we opt to not have children.  My father also feels my prescription for blood thinning needles prior to flying is “reactionary and ridiculous.”       Not to mention, he is also suggesting a complete redo of my blood work.    

I am hoping the face-to-face time with the hematologist will demonstrate the realities of my situation to my father so he can get out of his alternate universe and on board with my doctors.   It’s exhausting dealing with him.  Right now, I’d really like to focus on me.

I am a 34 year old woman and I believe I finally understand my diagnosis and Tim and I are working with my initial doctor on a treatment plan we are comfortable with.  I have also done a significant amount of research and am ready to advocate strongly for what I believe in. 

Yesterday I point blank told my father how MY appointment with MY doctor will proceed tomorrow.   I explained the format:    I want to hear this doctor’s diagnosis.  I want to hear his care plan/protocol recommendations and what my precautions and proactive behaviors should be.  THEN I have a list of questions.  THEN my father can speak. 

My father informed me today his plan for how the appointment should go.  I reminded him AGAIN of the above and reiterated the discussion we had yesterday.   I know my father loves his children beyond anything and he is probably in denial or trying to treat this casually because he feels that’s what I need.  However, we have been through this with my sister’s MS diagnosis and he was a domineering and in fact damaging influence then.  He kept vital medical information from her (she’s 22 not 16) until she had to intervene and demand her HIPPA rights.   

I will be relieved when the appointment is over.

Needles Round 1

Tomorrow I am heading to my Hematologists office to learn how to shoot myself up with Lovemax. Sigh.

Infertility?

The more I am learning, the more I see that these genetic mutations I’ve inherited are serious contributors to infertility.

It’s been a really shitty couple of days. I’m upset and worried and probably need to talk to my doctor about some anxiety — I cannot be walking around waiting for a blood clot.

Complicated

So my blood tests are back, and I have inherited multiple genetic blood clotting factors.   

Part of me had hoped this genetic ass-kicking would have passed me by, and I was pretty upset when the doctor was explaining it to me.  I finally asked him to write it all down and I would reflect and get back to him, and honestly nothing was processing anyway.  Furthermore, Tim is away on business, working 18 hour days, so I have been dealing with the aftermath alone.  I had to schedule 5 additional doctors appointments, yesterday.  That’s FIVE different doctors  prior to June 2.

To be detailed, I have:

1- Hetero Prothrombian Gene Mutation (also referred to as G2021A and/or Factor II)
2- Hetero MTHFR
3- CardioLipin IGM Autoantibodies at a 34, <10 is a good number.
4- Protein S Dificiency at a 53, just shy of the normal 60+
5- An LDL of 194, while all my other levels (triglycerides, etc) are average.

The top 4 are all “increased risk of blood clotting” and my LDL is also worrisome as both my parents, but more particularly my mother, had quadruple by-pass in their 50’s.   So increased risk of clotting, plus a family history of heart disease, is a shitty combination.  Simply put, blood clots can lead to heart attacks.

I am scared but trying to educate myself.  I am also in a precarious position.  The oral medicines (like blood thinners and cholesterol medicines)  prescribed to someone with my particular cocktail of blood clotting issues cannot be prescribed to someone who is trying to conceive.

In fact, if we choose to have children, it would be a high-risk preganancy, not just because of my “advanced age of 34/35″ – but because normal pregnancy increases your risk of clotting.    My factors contribute the risk of increased miscarriage, clotting in the placenta, throwing a clot during delivery, and a few other things.   To combat those possible outcomes, I would need to do blood thinner needles twice a day, while we try to conceive and during the entire pregnancy.    However, there is also a risk with the needles/injections too, like hemorraging and increased bleeding, etc.     In my online research, most of the women who have been diagnosed with the same, are discussing it in conjunction with infertility.  It seems people normally run this gambit of genetic testing, after multiple miscarriages.     Currently, my entire family is in the process of being tested, ever since my uncle was diagnosed with multiple genetic clotting mutations in the late 90’s.   In one respect I am lucky, I did not inherit all the factors he did – and my factors are heterozygous, meaning they only come from one parent – not both. 

I often wonder if there is a cosmic agenda?  What if after I had gotten married at 25 we had immediately attempted to have children?  I would have put myself and any possible babies at great risk.  Furthermore,  my husband and I have always been against the birth control pill.   A woman with the prothrombin gene mutation who uses oral contraceptives has a risk for deep vein clotting sixteenfold.  16x.  Damn.   Birth control could have triggered a clot for me!   Maybe everything really does happen for a reason.

As we are not currently trying to conceive, I  am learning what my risks are HERE AND NOW.    In the meantime,  I have been prescribed folate, baby asprin, and omega 3’s.  I have had to change my diet and increase my phsyical activity.   I have to inject myself with blood thinners before airline flights and long car rides.  And I just scheduled an appointment with a second hemotologist — second opinions are always a good idea.  There is not much I can do but protect myself.  In fact,  I am still reacting, reflecting and researching.  It’s still to new to me.

New Year’s Eve

My friend Jill is getting married on New Year’s Eve and I am in the wedding.  My goal is to lose 30lbs prior.  I have 8ish months.    Today I drank a boatload of water and counted calories.  Day 1, down.  Tomorrow we are going to the gym. 

I am waiting for the test results from my Big Blood Test.   It was 30+ vials.   I have to go back tomorrow for them to redo 1 test.  Something about a data entry error.