BP issues

A few weeks ago when I went to visit the high risk pregnancy specialist, Dr. M, the appointment started off with the standard height, weight, blood pressure check by the nurse.

When she checked my blood pressure it was elevated. 140/90 (or there about). She asked if I had a history of high blood pressure and I said I didn’t. She checked again at another machine. Still elevated. I told her I did just get mad at the front desk staff for not directing me to the correct department when I checked in, so maybe that was why.

(Side track: This being my first time in this part of the hospital, I walked up to reception and said “I have an appointment with Dr. M”. The lady at the front took my health card and hospital card, typed something onto her computer, printed something out of the printer and then handed them back to me and started dealing with the next patient.

I of course assumed that this meant ‘go have a seat we will call you up when it’s your turn’. Silly me. After about 10 minutes I decided to get up and ask someone else how long it would be, and they promptly told me that Dr. M was actually two desks down the hall and I had to check in over there. Wait what? So what was I doing waiting here? I was furious! Why didn’t the reception desk attendant tell me this? What was the point of me checking in with her? Now, 10 minutes late for my appointment, I checked in at the correct desk, apologized and complained about reception. They didn’t seem to mind that I was late. Phew. I waited again. But my anger just festered. So I walked back up to the receptionist. 

“Why didn’t you tell me I had to check in for Dr. M over there? I was sitting and waiting for 10 minutes right here and you didn’t say a thing.” She responded, “Didn’t I tell you?” I gave her the death glare. “No. You did not.”  I walked back to my seat. Still mad. That didn’t help. So when the nurse called me in to check my vitals about 5 minutes later, I was understandably still getting over it. When she remarked about my BP I complained again. She said she would talk to the front desk as they seem to have issues all the time.)

So I just brushed off that high BP episode. But I did have elevated BP for a while when I was on the BCP back in 2011, that was the reason I switched over to HRT instead. It had been normal for the past couple of years but I haven’t really been checking regularly. For some reason yesterday, on my way back to the office from my acupuncture appointment, I decided to check to see if the BP episode at Dr. M’s was a fluke.

144/90. Shit. That’s not good. Normal is in the range of 120/80.

I went back to the drug store today. 139/87. Better. On the upper end of ‘normal’ but still not amazing.

What gives? I’ve been really good for the past few months. I’m eating well, training to run my first 10k, lifting weights. Seriously, what gives?

Maybe the high levels of estrogen? It is listed as a side effect of estrace.  Can prenatal vitamins cause high BP? No idea. I’m stressed. But no more than usual. I consider myself having a pretty high tolerance for stress in general. But maybe this mock cycle is more stressful than I thought?

Anyways. I will keep checking for the next few weeks. If I keep trending on the high side I guess I will have to add one more doc to the specialist train.

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tingles and itches

So my V-jay is tingly and my tits are itchy. Oh wait TMI alert. Did I forget to say that from the start? My bad.

So yes. Not sure if this is all in my head or if it is the estrogen overload I am giving my body but for the past few days my vagina just feels like it is constantly tingly. Not quite itchy, but not quite a pleasant tingle if you know what i mean… 😉 I do also feel a bit bloated and today my nipples are very itchy. Not painful, just annoyingly itchy. I hope this means that it is working!

In other news, I have found one other person in the forums that has a similar Dx as me! (not sure if this is cause for celebration, but it definitely helps me feel less alone!). She is even going to the same clinic as me! She also had chemo and radiation before she got her period. She too is using DE and did manage to get pregnant but miscarried early on and is trying again soon. Although the road has not been easy, I am still just so glad to be able to share with another with a similar experience. And I really truly hope that this works out for her in every possible way! Sending you lots of good baby making wishes!

Fireworks!

 

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Image Source: Stat

So apparently scientists have discovered that at the moment of fertilization the sperm and egg create fireworks (zinc sparks)! Aside from being a pretty cool graphic, there seems to be something so poetic about the whole thing. As this article points out, the hope is that can lead to better IVF success rates if scientists can measure the strength of the sparks to determine the viability of the embryo (essentially doing away with the need for waiting to transfer an embryo).

Of course, what does that mean for donor eggs and sperm? If my sister donates her eggs then theoretically my sister’s donor egg will spark with my husbands sperm. So my sister and my husband will have created fireworks.

I shall try not to think about that and just enjoy the GIF.

 

Acupuncture and vacations

Had my second acupuncture session today. One week away from the lining check appointment. I will be back again on Thursday to give it one more boost. We are treating this like it is an actual transfer appointment, so trying to build lining as much as possible and prep my body for pregnancy. My naturopath explained she was stimulating the blood retention and flow points along my body to encourage lining building and also stimulated my ovaries for good measure. Sure. Why not.

In other news, my 4-month old nephew and I are planning a short weekend trip to New York in July. Of course he has to travel with his entourage (my sister and her husband), but I’m not complaining. AG will most likely also be in New York for work so it should be a fun trip. Also I guess if all goes well we can discuss more DE/Surrogacy related issues, but that is not the point. For now it is a great excuse for me to spend some quality time with my darling nephew and my sister gets to travel (making full use of her maternity leave while she can!) Cant wait!

Microblog Monday

Microblog Monday

Something about this last ‘all in’ mock cycle has me really anxious. I have spent the last week or so scouring the ends of the inter-webs looking for those that have gone through the same experience as me…POF and ART after chemo/radiation. Or have specifically experienced a successful pregnancy with smaller than average uterus. Something to give me hope, something to show me that I am not alone in this.

The thing I love about blogging is that there is a whole community of people that are sharing their experiences. Ive searched the forums such as IVF.ca and fertilethoughts.com. I loved perusing STIRRUP QUEENS’ Completely Anal List of Blogs That Proves That She Really Missed Her Calling as a Personal Organizer. I poured through lists of blogs I thought might offer some insight. I’ve been binge reading DE IVF blogs, POF blogs, and even those that experienced complications during pregnancy and still survived.

Yet I still feel like I am alone. Anyone else feel like even though you are surrounded (virtually) by people who are going through IF in their own way, you still are alone in this? Just like a finger print, or a fart (yes I went there, sometimes a girl has got to make herself laugh). Everyone has their own unique brand of IF. And no one quite has that magic answer that makes you rest easy, that everything will be ok for you too.

Anyways, to avoid getting bogged down in the depression of it all, I decided to partake in #MicroblogMondays. At the very least it passes the time.

Get on the specialist train

Met with my next specialist today: the high risk pregnancy specialist; to start to look at how we can be prepared to ensure a successful pregnancy, if that is something that we achieve. Big If.

Dr. M at Mt. Sinai is my pregnancy specialist. Overall, she seemed very knowledgeable and experienced. She broke down all the risk factors very clearly and how she would handle them. Most of the information she provided I was prepared for, and had some knowledge of, (thanks to my excessive googling habit). We discussed the risks, and what I will need to be careful about. Some of it was new though, and has provided much more Googling fodder for the near future. Generally though, she was hopeful that we can do our best to manage all the possible risks and give me and baby the best chance possible.

On a side note,  I wanted to mention how different the experience is at a teaching hospital compared to a private clinic. Every time I want to see a doctor I need to go through my ‘history’ with a fellow or a resident, who then reports to the senior doctor, who then, if needed will speak with me directly with the associate in the room. Today’s fellow was super annoying. Primarily based on her lack of experience and perhaps my lack of patience for people who know less than me about my particular brand of medical issues. She seemed very nervous/anxious and while she mentioned that she and Dr. M had read my file before hand, she didn’t really seem like she knew much about my case. I mean she hadn’t even read the referral sheet from Dr. Go.

I mean I had assumed that as my doctor (with my records, from the same hospital), you would know I had a history of chemo and radiation and had been seeing a fertility specialist, which is why I am here to see you. Nope. No idea. “Oh you had a bone marrow transplant?”. Yes. I also had chemo and radiation which damaged my uterus and lungs which is why I am here. Obviously she is learning and I am just a guinea pig. But it gets frustrating speaking to someone who knows nothing about what you have been through.

Dr. M on the other hand, she is most definitely in the know. She seemed to have done her homework and was familiar with various risks that we need to watch out for. And she added a few more concerns to the list (because we all know that my list ain’t long enough already). Anyways, I do feel like a teaching hospital is probably the right place for me, as at the very least these guys are up to date on the latest research and can hopefully pull from a wide knowledge base to help figure me out.

Having experienced both private clinics and hospital settings now, I believe that for someone with a rare and unique condition such as myself a teaching hospital, specifically one that is leading in its field is crucial to get the type of care and skill necessary. If I do manage to go all the way and give birth, I have no doubt this will be the hospital where I shall go to deliver. They just get me.

Ok now back to the appointment itself. Here is the rundown on the risks:

  1. Thalessemia Major – that pesky thing started this whole problem. Beta Thal was cured after the bone marrow transplant. So no real worry that it will affect any future child. Phew.
  2. HRT – Since the bone marrow transplant has left me in premature menopause, my uterus does not have the hormones it needs to sustain a pregnancy. So I will need to continue HRT (basically prometrium) throughout the pregnancy to ensure the uterus has what it needs to develop the fetus/placenta etc.
  3. Hepatitis – Apparently my old records show that I tested positive for Hep B and C. No doubt as a result of my hundreds of blood transfusions from the age of 2 to 12. Hep C I was aware of. I have been seeing a hepatologist (liver specialist) who had me taking Harvoni, a new medication to cure Hep C, for the past few months. By July we will have confirmation that I am all clear, no further meds needed. Hep B, he has never mentioned to me. So I will follow up with him about that. But even if I am a carrier, it is only a concern if we have to do anything that will cause my blood to mix with baby’s blood e.g. amniocentesis, fetal monitoring etc. So we will just have to avoid that, and to ensure we vaccinate baby when baby is born.
  4. Heart Issues – now this was a new one. Apparently certain chemo meds can impact the heart, which can become an issue during pregnancy when there is so much pressure on the heart. Luckily I have my discharge report from my transplant which shows exactly what meds I was given. Dr. M will go through that to check what risks, if any, become apparent. But for now we shall do a heart ultrasound to see if there is anything to be concerned about, and to establish a baseline to compare against, in case I do get pregnant.
  5. Lung Issues – Bronchiectasis as a result of the radiation and chemo. I know that I have small than average capacity lungs for a woman my age. I also am constantly wheezing so need inhalers to help control my symptoms. To date though it hasn’t really affected me much other than I am susceptible to chest infections (had 3 last year!) and don’t have as much stamina as most people do.  I am seeing a new pulmonologist (lung specialist) in September and will have a baseline pulmonary function test done then. I will have them fax my results over to Dr. M, so she has that too. Essentially, there is a risk that with a growing belly and the diaphragm being lifted up during the later stages of pregnancy that my symptoms may worsen. But given that I am so active now and can control my symptoms with inhalers we should be able to control any of this risk. And worst case I will have to be admitted to monitor my and baby’s oxygen levels and maybe administer oxygen. Also I will need to avoid getting sick for 9 months or keep the pulmonologist on speed dial.
  6. Uterus – Dr. M, will review all of my ultrasounds and other uterus related tests to confirm if there is any damage to the endometrium from the radiation. Essentially, I am at higher risk to miscarry so we will need to monitor any pregnancy very carefully by doing progress ultrasounds, checking to see if the placenta is attached properly and the baby is growing normally etc. So not much follow up here other than be prepared for a whole lot more doctor visits if the pregnancy happens. (I am beginning to really appreciate being a Canadian and having free healthcare!)
  7. Esophageal Varices – this is another new one for me, and ties to the liver issues from Hepatitis. Apparently when the liver is damaged (sclerosis)  veins in the liver can be blocked, so other veins take over their job. Sometimes these are smaller veins that can’t handle such a high load of work. These smaller veins are located along the lower esophagus, and can burst during pregnancy because of the increased blood pressure. An endoscopy can help rule out if this is occurring, but seeing as my liver specialist did not raise any concern about this, Dr. M said she would speak with him but did not think this was a high risk in my case.

And that’s it folks. I don’t think I have any body parts left to be concerned about. Follow up in a few months when all these test results are in and Dr. M has reviewed them. Likely sometime in October.

I don’t think people realize what it means to have a ‘miracle baby’ or ‘precious baby’. This baby, should it manage to overcome every single one of these hurdles, will truly be a miracle.

 

Studies (or why Googling is bad for you)

I have been a busy Googler. It seems the few years since I started my IF journey, there have been a few more studies now that have started to focus on the impact of radiation and chemo on fertility, and some even specifically look at the impact pediatric radiation has on fertility and uterine function. So I thought I would share the information I have collected so far. So here is what I know so far. And let me warn you, this will be depressing (for me).

Problem No. 1: POI (or POF) is an almost certainty after total body irradiation (TBI) or pelvic irradiation. I am almost certain I had both. Although my records from the bone marrow transplant are not clear on this point, and do not show exactly how much radiation I received. I plan on asking my parents if they recall the actual treatment regimen I was on and discuss this at my next RE appointment.

Ok, so nothing new here. We knew my ovaries were dunzo. So we will overcome the lack of viable eggs with a donor egg from my sister. So far so good.

Problem No. 2: “The lack of oocytes may be compensated for by oocyte donation but these patients also seem to have a uterine factor” Doh!

A paper published in 2000 in the Oxford Journals studied three women who had overcome childhood cancer with a bone marrow transplant which included TBI. Only two out of the three had a successful pregnancy, and only one of those resulted in a live birth.

Essentially it boils down to what age you had TBI and the size of the uterus at the time. For those who were exposed to TBI pre-puberty the uterus remains relatively small. While after puberty the size of the uterus is more normal and seems to have a better chance of carrying a fetus to term.

“An adult size uterus measures about 7.5 cm in length, 5 cm in breadth at its upper part, and about 2.5 cm in thickness”. A further paper on Biomed Research International in 2014 looked at the impact of uterine radiation on subsequent fertility.

“The irradiated endometrium is atrophic, with thickened and smaller blood vessels. Hence, radiation may reduce reproductive potential by damaging the myometrium, the endometrium, and the uterine vasculature. The uterine volume in women with premature ovarian failure (POF) is often reduced, with poor blood flow and a thin endometrium. Radiation exposure may induce further damage, resulting in a reduced uterine volume and decreased elasticity of uterine musculature.”

Quick health class lesson: During puberty, the uterus continues to grow until the age of about 20. So at age 12, I was in the very early stages of puberty, and if I remember correctly I had just stated to develop outwards signs of puberty. Tanner stage 2 or 3 at the time of transplant. I did continue to develop externally after the transplant, but the question remains how did this impact my uterus?

Time for a picture break:

uterus

Illu_cervix

“Direct high dose radiation (>25 Gy) in children commonly leads to irreversible damage to both vasculature and muscular function of the uterus.” Darn.

Lets assume I received a decent amount of radiation. Maybe not >25Gy, but maybe half that. It still looks rather bleak. The paper also refers to another study where women with spontaneous POI were compared against women with radiation related POI. It was noted that the women with radiation related POI had a significantly smaller uteri than the other women (4.1 cm v. 7.3 cm respectively of mean uterine length). Additionally 70% of the women who had irradiated uteri had almost no detectable blood flow to the uterine arteries, compared to the other women who retained normal blood flow.

“[Hormone] Replacement therapy of 3 months or more increases uterine volume, increases midluteal endometrial thickness, and restores uterine vascular supply in women exposed to TBI in childhood or adolescence.” But what it does not do is fix any issues with uterine size. Also a longer period of HRT does not seem to improve the results beyond what the first 3 months could achieve. So there does seem to be a limit in how much HRT can improve some of the issues caused by radiation.

So what is my uterine size and how does this compare to the average adult female uterus? Another question for my RE follow up next month.

Problem No. 3: Those pesky 37 weeks of gestation. So even if we were to find an embryo, and sufficiently boost blood flow to build an endometrial lining for it to stick, there is a high likelihood of very serious complications during pregnancy due to the damage done to the uterus. These include:

  • Spontaneous abortion/Miscarriage/Stillbirth – in many cases women would experience this loss in the second trimester, around the 17 to 20 week mark.
  • Preterm delivery
  • Low birth weights
  • Premature labour
  • Placental hemorrhage
  • Preeclampsia

The complications seem to be more common in those that get pregnant with ART. And the chances are significantly higher like in the third to a half times more likely range.

So there it is. I not only have to focus on building a lining, but also, even if we are successful at implanting an embryo, the chances that I will see a baby born are limited at best. Almost feels like it isn’t worth the effort.

Sigh.