I've had increase in breathing difficulty though this is nothing that would be apparent to someone else as it's just a difficulty getting a decent/regular (?) amount of air without having to think about it. Hard to explain I guess but it's frustrating though as it's very similar to before the heart surgeries. I do think this hot humid weather isn't helping but even when inside it's not all that great so I think there's more to whatever is causing this.
It has been ridiculously hot/humid here and from the start of the Humira study the bigger concern was being sure this drug didn't cause heart failure in my case (an issue we dealt with and managed before my 3 OHS but has been stable and not an issue really since). I shared pictures of the intermittent swelling w/my PCP then saw her a couple weeks ago as she was/or is concerned the symptoms I am experiencing may be heart failure acting up or heart related and possibly related to the Humira.
At this point if it is she thinks we can manage with the Lasix as long as my symptoms improve which after she upped the Lasix dose back to the 60mgs 2x a day I had been on up till about 6mo or so ago symptoms have improved atleast some. Dr.Simpson requested my Cardiologist input (I talked to his Nurse last wk as I was getting INR results from her and she was going to pass Dr.Simpson's notes to Dr.Earing albeit a week later and she (Dr.Simpson) has had to leave a few more messages.
Jane had emailed the INR results on Tues last wk (was super low on 2 different occasions last week but then the level was just above range and slightly high on Tues and then today (a week later) was high again (Coumadin could drive a person to drink its insane!).
I'm not sure why Dr.Simpson isn't hearing back from Cardiology, its weird actually, usually my Cardiologist is great about returning providers calls and yet nothing? For now I am continuing the Humira and we just hope we can figure something out, hopefully Dr.Simpson can get a response from Dr.Earing?
My Study dr had asked me to let her know what he (Dr.Earing) said so I just have been giving her what little updates I have; it's all a little confusing being completely honest with 3 different drs involved albeit all 3 are very good and I know we'll figure it out at some pt. Soon would be great though b/c seriously right now it makes me feel a little nutty! I know I should trust myself, I KNOW my symptoms are real and the issues is real but when you continually have to rely on others to help it IS hard incredibly hard for me.
What I really want is to not need the Lasix (I hate that med) and yet to be able to stay on the Humira! I'd gladly give up just about any of my other meds minus a couple that have clear impact/help for me but the Humira has made a really big difference in the spine-nerve bladder stuff and that's so incredible after so many years! I wish this breathing/swelling stuff where just simple and Cardiology would return my PCPs call. I completely get that Drs are busy but it's hard when you don't feel good and I guess as i've written about before I think I have gotten even worse at trusting myself since the whole (kind of) mess with my Nrsgn and his note questioning that I understand him. I just want to feel good once, to be able to breathe normal, to not need all this med to get/keep fluid off and all the other meds on top of the headache/shunt stuff. I am tired I guess of it all albeit that never means I am giving up, just that at this point it is frustrating.
My Study dr has also been weighing in and is involved + they all are figuring out what if anything we need to do. -- Hopefully NOT discontinuing the Humira! There are some meds I take I couldn't say for sure how they help but the Humira I can say exactly the ways it does and it's been such a relief. Say a prayer my Team can figure this out and we finally hear back from Cardiology I guess!?
Pulmonary - normal f/up but good timing (see if she can help)
I also see my pulmonary dr tmrw (Weds) at FMLH so we are hoping maybe she might have some thought or insight and maybe be able to help. My case just seriously never seems to be clear so I never get my hopes up but I still do hope Dr.Biller might be able to help somehow? My PCP thought getting her opinion was worth it especially since I was seeing Dr.Biller anyways.. She's been part of my Team since I was 1st diagnosed with the MPS I so she knows me well.
Seeing Peds Neurosurgeon - UofMn
On 2 separate notes I am seeing the Peds Neurosurgeon at UofMn when I am there in a few wks to get his opinion. I don't know that I am overly optimistic but I hope he can weight in and maybe give some advice on symptoms/the pressure-headaches (shunts). Is worth a shot.
Giving A Talk on 'Transition to Adult Care'
On 2nd note I have been asked to give a short talk on 'transition to adult care' at the International MPS Conf., which is the conference this year hosted by the US MPS Society but including all countries MPS Societies. Should be good! I hope I am feeling better by then but if not I guess wouldn't be the 1st time I traveled when not feeling that great.
Hand Surgery date moved up:
And a 3rd note, the hand surgery which has been scheduled for Sept was moved up today to Aug 10th. The Hand Clinic called needing to change the date and the 10th was 1 of a few dates they had which I could do. This will be my 4th surgery on my R hand but a new surgeon. Odd that in needing to change the date they could actually do sooner but guess that's ok.
Only bad thing is the pre-op is not with my PCP and she is sooo familiar with my history and issues so has always been phenomenal at rounding everything up before each surgery. The (new to me) NP I see instead will have a bit of figuring out to do but I guess we'll figure it out.
I've already left a msg for my Endocrine dr atleast so that pre/post surgery cortisol dosing will get sent to Hand surgery for the surgery.
I'll try to do an update sometime soon when/if we hear from my Cardiology Dr and also with how the Pulmonary (Lung) Appt went.
PS as a quick side note in just a few days it will be 5yrs since the 1st of the 3 OHS. Amazing actually all that's happened since then. 5yrs ago I certainly never expected would be like this although the OHS's really did help, just I guess not as much or maybe not for as long as I would have hoped? I'm not exactly, entirely sure given the continual seeming changes.
Thanks for stopping by,
Erica
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