I guess it's been too long since I blogged but the last month(s) or so, has been a bit ragged. Apart from my modem being fried by lightning and the new job having a bit more restrictive internet policies, I am starting to have major fatigue issues and I don't know why. Every moment that I am either not eating or working, I just have to sleep. I lay down for a "second" of rest and I find my self waking up four hours later. I do nothing but sleep over weekends and during the week, I go to work, fight blurry-eyed to stay awake, get home, eat and sleep...
I know, I have to get to the doctor at some point but what do you tell him? "Duh...I sleep too much..."
I actually did want to go to the doctors this weekend but I had a Marfan's meeting. This was the first time I went to a S.A.M.S.O. meeting and it wasn't all that bad...it was actually hillarious. My parents went with me and they were gawking at the people walking in as we waited for the meeting to start... They had a 99.9% success rate at guessing who was coming to the meet-up... They recognised me in almost everyone that was there. Initially it was a bit of a tense situation as they wanted to discuss ending the organisation due to a "lack of interest" but after seeing the turn-out, the voting was a mere formality as there does seem to interest after all. I guess the major reason why the "community" gets so silent is because the major areas that research focus on is the heart and the eyes. All the other probelms (Alltough they are more prominent and actively irretating on a daily basis) are secondary and too diverse.
The lady was very helpfull and had all the answers if you asked about the right topic (i.e. Heart & eyes) but when it came to other anomilies...the general response was "Shrug, That's Marfan's".
After that, the doctors was allready closed and my folks didn't want me going to after-hours consultation as it would cost me twice as much. I can't stay away from work either as my problems are generally not always diagnoseable (It definately exists but the doctor just says "It's because of the Marfan's" and that's it) in which case the doctors note might read something like "Marfan's Issues"? I doubt if the company would accept that as a valid sick-leave, especially if it occurs more than once.
My intestines drive me crazy with irretating ache's and pains but it's not enough to go to the doctor and have him find something other than "Indigestion", give me a script for it and still have no change by the time the script is finished. My chest pains regularly and my whole body jerks, from my heart thumping away, when I lie down but it's not enough to phone an ambulance stating "Ack! I am having a heart attack!". I ache allover in twenty different places twenty times a day and I have become so used to it that if you asked me how much pain I had during the day I would say in all honesty "None".
As for developments in the Marfan's community and some general information:
- Losartan (Experimental drug used for aneurisms):
They are busy with human trials after the successfull completion of trials on rats but it is available for patients with severe aneurism of the aortic-root. The drug however, significantly reduces blood-pressure and like Beta-blockers has side affects and therefor is only available after carefull concideration by your Cardiologist. Note also, that in order to qualify for medical assistance, this medication (As with most other medication) should be prescribed for the actual problem arrising from the Marfan's and not for Marfan's in it self. Suggested prescription is something like "Blood Pressure control" rather than "Aortic rupture prevention due to Marfan's".
- Dural Membrane Patch
Medication has been available for some time, to seal up holes in the dural membrane after having had an epidural or spinal tap. This medication is however now also available to Marfan's patients having Dural-Ectasia with rupture of the dural membrane due to it. Once again, the medication has certain consequences and should be used under advisement.
- Treatment of Spontanious Pnuemothoraxis (Lung Collapse) with Chemical bonding is NOT ON!
There is three solutions to the treatment of lung collapse (Which is very frequent in Marfan's patients). The one solution however, which involves medicine that chemically bonds the lung to the chest wall, and so doing keeping the lung inflated should, under NO circumstances, be concidered for Marfan's patients as Marfan's patients will undoubtably need aortic surgery at some point in their lives and having your lung attached to your chest wall will severly complicate and hamper such surgery or any other corrective surgery partaining to the heart or aorta.
- Foot and hand surgery in Marfan's patients has a VERY low success rate
Corrective surger of the feet, toes and hands (Especially surgery such as Carpul Syndrome surgery) should not be concidered lightly by a Marfan's patient. There is an extremely low success rate for these surgeries in cases of Marfan's and should only be concidered if it is the ONLY solution to improve mobility. The surgery will either not give any improvement or fail horribly, leaving the patient with even less mobility.
So...that's me for now... Hope I haven't been missed too much ;D
In Austin, Texas
6 months ago