10 Things I am thankful for...

A friend of mine posted a similar list of her 10 things she is grateful for (her son has MPS II-Hunters, another form of my disorder).

No particular order:

1. The family I have who are there when I need them to be there, especially my parents! Family and friends who come to visit when I am in the hospital and my parents and sister, the ones who take the time on Holidays for us to be together.

2. My nephews and nieces, especially the ones who love to come visit or spend time together. :)

3. For a space to call my own, for my car and for the work I have with Gene Spotlight which affords me the ability to have extra spending money outside of the disability income. I am grateful to work for GSF as well b/c it allows me the opportunity to peak in to what is coming as potential treatments for MPS I!

4. For providers, especially those who email or text message and who care enough to answer my questions about the care they give. For the providers who are willing to work with other specialists on my 'Team' and who believe me despite when things are not always black and white-textbook.

5. I am grateful to not be spending this Holidays in the Hospital (!!) and I am also grateful we will be able to move the 2nd (Thoracic) shunt back to it's former location in Jan!

6. I am grateful for my Church family, most especially for my 2 fellow Sun School Teachers (obviously there are more teachers than just the 3 of us but I consider these 2 particularly close) who I consider great friends, who have visited while I have been in-pt and who I never feel like I have to apologize for having an opinion.


8. As much as I sometimes don't want to go I am thankful for Aldurazyme and I am thankful there are potential drugs on the horizon to compliment what Aldurazyme doesn't help.

9. Specifically regarding the MPS I am thankful for my Primary Care dr who despite knowing nothing about MPS when I started with her has learned. I am thankful for my Peds Neurosurgeon who has stuck by my care through many hills and valleys- always seeming willing to try and think of another approach or thing we can try. I am thankful for my Pain Mngmt dr who gave me back my life when chronic pain was affecting my daily life significantly and no one else would really help. I am also very thankful to my Cardiologist and his Team who made the 2 open heart surgeries go smoothly despite some set backs. I am thankful for his skill in ironing out the complications following the 1st OHS and then knowing what to do to help the issues/symptoms following the 2nd surgery. As well I am grateful he and Dr.Bragg (neurosurgery) each have a good team who answer calls, they both answer emails and all 4 of these drs have worked together through all of the many surgeries. Last, I am grateful to my Endocrine dr, she reaches out to the rest of the team and they to her in order to make sure the cortisol issues are well managed pre, during and following surgeries.

10. I am grateful I don't need someone else to tell me what I need to do, that as much as I dislike it I am able to pick up the phone on my own and call whomever I need to. I am grateful I can make my own decisions and I am grateful that although I am stubborn I also get along really well with the vast majority of people I meet! - I know there are people who dislike me and I am ok with that too!

What are you thankful for?
Thanks for stopping by! - Happy Thanksgiving!

Erica

A range of things, Happy Thanksgiving!

I had Labs today for Cardiology due to the CoQ10 addition and Jane, Dr.E's Nurse called with the results. The INR was to low at 1.75 whereas goal range is 2.5-3.5, they will re-check this and other labs next Thurs., a week from now prior to Cardiology Appt fup.

The Pre-Op Appt for Dr.Bragg's surgery with PCP is set for early Jan., with her (PCP) plan being to contact Cardiology and get their 'ok' on her pre-surgery bridging plan. From what my PCP shared her plan is to bridge with lovenox injections for 3-5 days prior to the shunt/spine surgery + stop the Coumadin during that time and nothing the day of surgery. Lovenox/Coumadin are then re-started at Dr.Bragg's discretion the day of or following surgery and monitored daily till labs are back in range.

I talked to Dr.Bragg's Nurse today and she (Dr.Bragg) hadn't decided on a valve yet for the surgery which after Lisa said it didn't surprise me to much. I said to Lisa, often she (Bragg) will come in to pre-op the morning of surgery and talk about how she was still thinking over what she was going to do or change the night before my surgeries and what she finally decided on. Sometimes Dr.Bragg wouldn't have decided until she was in surgery and then make a decision. She knows her stuff so I trust any decisions she makes. I do like information ahead of time, it helps me deal with things but I also know taking her time and thinking things over is Dr.Bragg's style so it is fine not knowing.

Next week is another week of pure craziness, I am not entirely sure when i'll get Cardiac Rehab in (usually Mon, Weds, Fri and I almost always already miss Mon's due to ERT) but maybe they will let me come to an earlier or later class on Thurs as I will be in Madison Weds. (seeing the new physical med rehab dr., does the spine-muscle botox) and Thurs see Cardiology. On Monday I am going in to CR after infusion to their 2:30 class whereas I normally on Weds/Thurs am in the 1:00 class so maybe will do the same or earlier 11:00 class Thurs. I will never get done with CR at this rate as there is always some other Appt conflicting w the Cardiac Rehab times! Anyways, Monday is ERT (infusion), Tues is Endocrine, then meeting a friend for lunch, Weds the PMR Appt in Madison and Thurs is Cardiology. Hopefully all this will calm down soon, right now seems like a lot bc of Cardiac Rehab and 3 and 6 mo fups w several drs. - Is CRaZy!

Anyways, I guess that's all that is new on the MPS/medical front. Thanks for stopping by - Happy Thanksgiving!

Erica