Tag: medication

Holidays and Hospital Stays

Holidays and Hospital Stays

Last week we got back from 10 days in Northern Cyprus. We had a lovely time, Little T, particularly so!

The flights over were fine, but the layover in Istanbul was beyond stressful. Mum and my Bro went missing as we were separated getting off the plane, i had their passports and boarding cards, so they were stranded, and it took well over an hour for someone to take me seriously. This all because my Mum uses a wheelchair when travelling.

Anyway, we got to the hotel in 1 piece. Mums wheelchair spent the night at a different hotel mind you as it was unloaded incorrectly from the transfer!

My Grandad then passed away whilst we were there, but we tried to make the most of it. I think that’s what he would have wanted.

Little T was known throughout the hotel and down in the harbour. He managed with the heat incredibly well but isn’t a fan of a shower. He discovered chips and ate them everyday, along with Cyprus sausage, he learnt lots of new words and took lots of walks (not independently yet).

Since being back, I’ve booked Christmas dinner in Leeds, only to be told 20 minutes later, I’m having my MS treatment the week before Christmas and that kinda is the worst timing ever.

Ill be in hospital for 5 days from 17th Dec. Ill be given Lemtrada via infusion over those 5 days. The medication will bind to and destroy my white blood cells so ill be immunocompromised following the treatment. So being in a pub full of people 4 days later isn’t ideal!!!

Mind you, nor is handling strawberries due to the Listeria risk, but you gotta live, so ill be sat in the corner come Christmas day, keeping away from people!!!

I honestly thought after losing 2 babies and doing 9 rounds of IVF, I’d paid my dues, seems that’s not the case!

No rest for the wicked

Love, Little Miss PMA xxx

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Hand forced?

Hand forced?

So i had a call on Thursday from my GP, he told me he had had a letter from my MS doctor and i wasn’t to have steroids during an MS flare up.

Fair enough.

Today i got a copy of that letter and its terrified me.

I’d contacted the secretary of the MS doctor to advise we would like another baby so he asked me to come in this week (Thursday). In the mean time he wrote to my GP to say

  • I have relapsing remitting MS
  • Its rapidly evolving severe
  • My MRI’s showed that between 2015 and April 2018 there was a significant increase in lesions
  • Between April 2018 and June 2018 there were THREE MORE lesions (explains all the symptoms i was having)
  • As i was considering another baby, he wants to try a different medication, Lemtrada, as it provides a long lasting effect and will hopefully prevent relapses during pregnancy

Lemtrada does not sound pleasant, at all

The long term effect on disability is uncertain

Its given by drip over 5 consecutive days and i HAVE to be admitted to hospital as nearly everyone has an allergic reaction, treated by antihistamines and IV steroids

I’d need a second 3 day course in a year.

1 in 3 people develop under or over active thyroid requiring lifelong treatment

1 in 100 develop a blood condition

There have been a few cases of people developing a kidney disorder too

These conditions can be life threatening so I’d need blood tests every 4 weeks for FOUR YEARS after completion of the infusion

But, its PROBABLY safe to get pregnant 4 months after the last infusion. Probably.

What the fuck am i meant to do with that??

Head is up my arse.

I refuse to Google.

Love, Little Miss PMA xxx

Reconciliation

Reconciliation

How do you reconcile being broody versus having MS?

How do you know its not just jealousy? There have been a fair few pregnancy announcements of late.

How do you know when the time is right to try again?

My head’s a mess. I really do want another baby. Sensible me thinks i should wait, my heart doesn’t think it can take it.

If i start MS meds, i have to be med free for a year before doing IVF again.

The longing for another pregnancy and baby is overwhelming at the moment. The idea of waiting another 18 months at least, scares me, the thought of feeling like this for that time is miserable.

I worry i won’t manage with 2, practical stuff i can sort, but the idea of Little T fighting with his sibling scares me.

I worry Little T will be jealous, but i worry he will be lonely.

Its a complete head fcuk.

My main problem is lack of information. I don’t know if i should start meds and then have a break and then IVF, or whether its easier to try again sooner rather than later, then start meds after a potential pregnancy.

I don’t want to waste anyone’s time, the NHS or my consultant (who is sourcing my medication). The problem is, I’m not seeing my consultant again until after we have been to Cyprus, which would be a prime opportunity to do FET (frozen embryo transfer)

Doesn’t help that my body is being weird, namely longer periods and random aches in the uterus area. I think its all in my head to be honest but its just messing with me.

Why does this have to be so hard?!!!!

I’m so back and forth

Love, Little Miss PMA xxx

And now we know…

And now we know…

Today i had my appointment with the specialist MS doctor.

After much discussion of symptoms, and a few physical tests, it was decided i do have MS but dont present in a traditional way. Most people get worse through pregnancy as the immune system is lowered, whereas i am symptomless in pregnancy. My symptoms very much come and go, which the Dr thinks seems to indicaye my issues seem to resolve themselves after a period of time.

Im to go back in 3 months, i had blood tests today to check im compatible with one of the four drugs suggested for future treatment, and ill have another MRI before seeing the doctor again. He also wants me to have high dose steroids to tide me over whilst an MDT (multidisciplinary team meeting) is carried out to decide the best course of treatment.

Im happy its MS. I was dreading them saying they didnt know what it is, and having to start again.

Its obvious there are more inflammation spots on my brain since the MRI 5 years ago.

That i can manage.

But! The drugs arent ideal if i want to get pregnant again. I’d need to stop treatment for 12m before trying again. Plus, is it even fair? Do i put all my energy into being healthy for the one i have, or risk my health for a possible sibling?

My head says, stick with one and be the best you can be, but my heart is gutted. I’d like a sibling in time, but can i justify it? Will i be well enough to have 2? Will the break from meds make me experience more and more extensive symptoms

Its hit me harder than i thought tbh, i don’t know what to do with myself. I wanna run away but also know I’m so lucky to have my friends/family and son.

I just feel a bit meh.

Love, Little Miss PMA xxx

Final Cycle – Day 21

3 days past a 5 day transfer/8 days post ovulation or egg collection

I had another, mostly, lazy day. I caught up with my counsellor, straightened my hair for the 1st time in 12 days, did some shopping (only light stuff Umit, i can hear you frowning as you read 😘) and did some washing.

I may aswell list my symptoms as i cant stop myself from noticing

  • Headachey
  • Crampy on and off, sometimes mild, sometimes strong
  • Some sharper pains in uterus at times
  • Sleepy
  • Craving bacon/food in general
  • Heavy/full feeling in uterus
  • Needing to pee more
  • This one may be a bit too much information for non IVFers – increased cervical mucus
  • Dizzy spells
  • Sore right nipple (although i do ‘check’ it regularly which probably isnt helping) 
  • Achey hips
  • Increased sense of smell
  • Mr Me says im short tempered, occasionally, my temper is now very short with him following that statement! Kidding, he is right tbh, im easily annoyed at the mo! 

Any and all of them could be explained by the meds, i know that and im trying to stay grounded, but im a little bit excited.

Love, Little Miss PMA xxx

Feeling foolish….

Feeling foolish….

I feel like such an idiot. Im so embarrassed about my outburst over the weekend. So not like me. 

Luckily, i have an awesome support team. Be it the clinic, friends, family, or my blog followers. Youve all helped me this weekend. Im grateful beyond words!! 

Having looked at it rationally, i realise that the steroids could be masking my rash, so there really was no reason to lose it like that. Over one bloody symptom. Tsk!

I spent yesterday with M, we had a BBQ in the rain, typical British summer! It was great to be around her and her family, they really help reassure me, and also she gave me a little talking to. Today she even told me that she got the sense it had worked, her mummy sense tingled. Id trust her over lack of symptoms anyday!! Didnt tell me until id sorted myself out, she wanted me to get there on my own, shes a good egg, and a sneaky beak but i love her!

M2 has also been wonderful, her humor is my humor and she can always put a smile on my face, and her tough love is very much needed at times! Couldnt do it without everyone, these people that go it alone, hats off to them, i need the help!

I saw my counsellor today and filled her in on everything, she said id analysed my thoughts and feelings over the weekend well and had come out the other side, all on my own, without direction from her, so im happy with that. Im seeing her next week as she is desperate to know the result!!!

So, 4 more sleeps. Im working the rest of the week, so thatll keep me busy! Im truly back in the ‘it’s worked’ camp and im just waiting to confirm that. Much prefer this version of myself!

Love, Little Miss PMA xxx

Seven minutes and £350 later….

Seven minutes and £350 later….

Today i had my scratch done! 7 minutes i was there for!!! It was a nice clinic though and the nurse was very friendly. The consultant was very interested as to why i chose Cyprus (how long have you got?!) and even asked if i knew why i was there (well yeah, i booked it) and wanted to go through what would happen. I chuckled and said “im a seasoned IVFer, whip my pants off, legs akimbo and jobs a good un!!” (hilarity ensued)

I even got see how many cells she removed, it looked like a good few.

I had a full bladder as assumed itd be ultrasound guided, but no, she did it by eye! I was impressed!

So we are officially off, for me this marks the beginning of the cycle. 

Hermes, the courier, now have my meds so they should be with me soon and i take my last contraceptive pill on Monday. 

Eeeep!!!

Love, Little Miss PMA xxx