Intro + Anyone Else?

Hi, all. If you're not interested in the intro, skip down to the triple-asterisk :P

I'm Matt, I'm 17, and I have asthma. I'm on the following for this:

- Montelukast 10mg, one tablet per day

- Fostair 100/6mcg, 2 puffs three times a day

- Atrovent 20mcg, 2 puffs two-to-three times a day + before ice hockey

- Ventolin 100mcg, 2-4 puffs three-to-four times a day + 2-10 PRN

I also have a Type I Latex Allergy, for which I have emergency Acrivastine and Prednisolone. I take Acrivastine daily for general pollen allergies, alongside Avamys 27.5mcg nasal spray. I use Aveeno lotion (with menthol, oh my gosh it is actually amazing) and bath oil for mild eczema. I also suffer from migraines/cluster headaches, for which I take 2mg Pizotifen daily, and 2.5mg Naratriptan on an as-needed basis.

My personal best PEFR is 350 L/m, as per the EU scale. I'm currently on my 5th day in hospital after a life-threatening attack at 2:00am on Monday, which saw me in Resus for 5 hours after ambulance transfer, on back-to-back Salbutamol/Ipratropium nebs, an IV Magnesium infusion, Prednisolone, and Oxygen. I was handed to the CCU/ICU team, although I managed to escape actually going to ICU.

After being stabbed multiple times (ABGs; I have really elusive veins and arteries), wired up to multiple monitors, and having doctors, nurses, and paramedics alike tell me that they couldn't hear anything going in or out of my lungs, I turned a corner and stabilised. I was taken to the Acute Medical Assessment Unit at 7:30am (thank goodness it's winter, otherwise I would never have slept), and stayed there for Monday, before being transferred up to a single room in a respiratory ward at 4:30am on Tuesday.

Night before last, I had another attack on the ward which stabilised after IVMg, IV hydrocortisone, and nebs, and a chest x-ray appeared to show some sort of pneumonia, or severe bronchitis. My Hb level yesterday was 10.-something (normal for my age: >12) so not dramatically low but decreased, and I had another CBC this morning which I await the results of. Ward rounds this morning concluded with "we're going to keep you in over the weekend and see how things are on Monday". *sigh*

I play ice hockey, cello, piano, and I sing as well as writing my own music and songs. I have an avid interest in reading, but I am looking at a career in Medical/Pharmaceutical Research, especially in a field such as immunology, oncology, or neurology in contact sports. I also love animals and have two working cocker spaniels (ha! As if they work!) who are mother and son.

So that's me, that's what I'm on, those are my interests, and this is where I'm at.

***

Anyway, I usually discuss my lung stuff with my best friend who has had asthma all her life, or on the Asthma UK HealthUnlocked forum; I've come over from there today to discuss new findings.

One of the respiratory registrars came to my room to do spirometry today, and found that, while I clearly have asthma (as evidenced by the attack and my response to asthma meds), I also showed a restrictive pattern on the spiro; I think my lung volume was half of the expected for my age, height, weight, and sex. So that's item no. 1.

Item no. 2 was to do with my chest x-rays. The team reviewed my CXRs over the past year, and noted that my right hemidiaphragm is currently considerably elevated. I've read about this, and know there are various causes; we have ruled out phrenic nerve injury with my history, and while I am not one for self-diagnoses courtesy of Dr. Google-my-symptoms-and-convince-myself-that-I-am-dying, my niggling concern is hepatic tumour.

I have a very strong family history of typically endocrine-mediated cancers on my dad's side of the family (paternal grandfather died from prostate cancer, paternal aunt died from a metastatic recurrence of breast cancer, another p.a. died from ovarian cancer, and there are other cancers on my dad's side and my mum's side), and I had a Stage T1 appendiceal neuroendocrine tumour about a year-and-a-quarter ago, which was the primary tumour and fully excised and all that. A follow-up CgA in January of this year was normal.

However, I have recently been experiencing abdominal pain which is like a moderate-to-severe cramping pain, as well as palpitations, flushing, nausea, decreased appetite, fatigue, and mild diarrhoea, many of which are key symptoms of carcinoid syndrome (among other things), which arises due to neuroendocrine tumours metastasising to the liver, which is of course just under the right hemidiaphragm. I haven't quite plucked up the courage to request a repeat panel of bloods and samples including CgA and 24-hr Urinary 5-HIAA, but I'm considering mentioning this.

Any thoughts, anyone? I'm not freaking out, and they are going to get to the bottom of the elevated hemidiaphragm and the restrictive spirometry pattern, but it would be interesting to know if anyone else has/has had these, and what people's experience of such things has been!

Thanks :)

Matt

6 Replies

oldestnewest
  • Wow Matt. Can't begin to take in all that. Something in you must be as tough as nails. Can't really help but I just want to hug you (very gently) and adopt you as another grandson.

    Let us know how things go

    Love K xxx

  • Welcome to you Matt and what a very interesting person you are in so many ways. Quite a medical history you have there and I think you should ask for the bloods and samples to be repeated as that makes sense to me.

    I am carer for my hubby Pete who has sarcoidosis, COPD, osteoporosis to name but three but nothing like you have to put up with. Pete has a raised PSA level and is loathe to go to the hospital next Friday but it has to be faced, just in case.

    I do so wish you well with everything and hope that you do get to have the career you would like to have.

    Do let us know how things go for you and hope you get to go home very soon.

    Wishing you well. xx

  • Goodness me Matt...i think your going to get more questions than replies to that post you sound more like a consultant. I didnt understand most of it but would like to say welcome to the forum.

  • Hi Matt I suffered from severe asthma I'm my twenties sounds like u have brittle asthma, my lung function tests were also very poor for someone of that age, not sure if u smoke but if u do please stop xx

  • U may also be suffering from irritable bowel or something similar, with all the tablets u are taking, u might be getting palpitations from having a lot of nebulizer they make me feel shaky x

  • My goodness, you are ver knowledgable for 17, I sincerely hope that you will go on the study medicine.

    Please get the bloods done. I get that you're not panicking but by now you must have found out that the hospitals & medics information just isn't joined up.

    They really need to have this information ASAP.

    I wish you all the very best indeed. Don't forget that there is a helpline here 03000030555 office hours or you can email them with a copy of you post above. X Peege

You may also like...