Sunday, July 5, 2020

Shunts (infection), ostomy issues, etc.

I am very good these days at thinking about writing an update here but then not actually doing it. There's a fair amount going on, a fair amount on my mind so I figured writing usually helps me anyways.

1. Re the (seeming) never ending ostomy issues this has been less then smooth the past couple months but especially the past few wks. I saw my General Surgeon a few wks ago for which she wanted to see how the cancer scans looked (stable thank God!!!!) before deciding if she'd be willing to fix the ostomy. Right now the ostomy is significantly prolapsed and thus causing the parastomal hernia to be painful to put it slightly especially when the ostomy prolapses to the full extent it does (sometimes it will go in partially and swelling around it not be quite so bad). That f/up appt is Weds and I am so-so praying. Not that I want surgery but to make this less uncomfortable, to make it easier to eat and to make getting dressed and finding shirts that atleast semi hide the bulge and outward area just be simpler would be really nice!

2. Cardiology - I met the new Cardiologist last wk. I've actually emailed with this dr. since she 1st came to CHW (not even sure when that was, maybe a year-ish ago but can't remember for sure). My (long time, 15+ yrs aka the longest provider on my team ) Cardiologist left CHW to move to Chicago about a month ago and super bummed to have had him leave though I do like the new Cardiologist  and fitting we've chatted numerous times (via email) before she actually became my dr. due to her interest in and having trained at several MPS I treating centers. My former Cardiologist had told me her recruited her specifically due to her interest in MPS disorders.
That appt last wk went well, things are for the most part stable but overall good news. I'll take it! She does want to see the pulmonary function test results I have next wk and see if that might give us any insight on the on-going (worse as the day goes on) cough.
She feels like my Lung dr and PCP that likely this issue is multi-factorial though. Likely due both from the heart and lung issues.

Cancer - scans where done last month due to a slight uptick on 1 of my cancer labs that are sometimes used to track cancer longer term but the scans came back stable. I was happy for that and my cancer dr said the particular lab result is 1 he'll continue to watch but won't specifically worry much about going fwd. My cancer seems to be a slow growing one so that is atleast good if ya gotta find something good in having cancer.
I was temporarily taken off the capecitabine (oral cancer med) after the CT Scans (chest and abdomen) showed a CSF (spinal fluid) buildup in the lung (pleural) space for which a thoracentesis was scheduled. That test was a couple wks ago and was definitely much easier then the one done last winter at St.Mary's. A friend went with me and then we stopped and had take out (eating outdoors) from a restaurant I like in Madison + she'd never been to.
Initial results from this test where unclear but show a mild infection in the lung space (the side my shunts both drain to). Peds Neurosurgery scheduled a shunt tap to pull off spinal fluid from each shunt (done last wk) and is running labs now to see if the infection is spread throughout entire shunt systems. If it's only in the pleural (lung) area then only that portion of the shunts will have to likely be removed (per my Neurosurgeon).
If the infection is throughout the entire shunt systems then the entire VPL and L-LP Shunt systems will have to be removed and replaced. Not something I am looking fwd to  (especially given COVID) not to mention if my General Surgeon is willing to fix the ostomy hernia and prolapse (I cannot tell you how much I am praying she will) will that have to wait till after the shunt stuff is sorted?
 I get my risk that hernias just recur but the 1 repaired last summer has held well and I think if I wore the stomach brace I have now consistently we'd have better luck. Anyways I am not sure if she is willing to fix this would that have to wait till after the shunt stuff was cleared. I  hope not!!!

 Almost above all I just want the hernia repaired so hopefully less discomfort and maybe food would go through easier (keep getting partial blockages which is apparently not uncommon with this issue). I like food and I like to eat what I like to eat though I do always try to be careful both before this hernia and prolapse and now. Please say a prayer with me if you wouldn't mind.


A few wks ago I tried to figure out if I needed to complete renewal paperwork for my Apt (it's been a year now i've been here. Time flies in some ways!). I never really got a clear answer and then Fri got paperwork saying my funding grant would expire the 31st if I did not have it in before (yet it was the 2nd when I got the paperwork and notice). Cue much stress and worry over the past few days. I immediately signed and emailed in the paperwork and mailed a print copy this wknd but am nervous! I pray this are able to be sorted easily!

Otherwise just a little stressed about stuff I can't control and hoping this pandemic doesn't affect the part time work I do. I love my job, it's flexibility and that extra income makes such a huge difference in being able to pay bills and have a little extra. I really hope I get to keep this work. I can't say what a difference it makes and how grateful I am for it.

I say it probably every time but will try to be better about updating sooner. Stay cool and enjoy the warmth!
With God all things are possible,


Friday, June 5, 2020

Long over due (though not alot) update

It has been another long while since I've written here. I update on fb but not very good about coming here to update. Sorry for any who read this and aren't on fb!

Not actually a lot to update really. Still struggling with the ever annoying, ever increasing in size parastomal hernia and ostomy. I saw my General Surgeon the other week who then talked to a colleague of hers on the colorectal side and saw that dr. earlier this wk. This 2nd opinion was very nice but clearly very skeptical to do anything with the ostomy prolapse and hernia due to my underlying MPS I and the cancer. Honestly it is very frustrating when drs. repeatedly go around to how this cancer will be terminal and she wasn't sure fixing it would help longer term. I do understand this thinking but feel quality of life is important in the grand scheme. She in turn talked to Dr.Henkel who sent me a mychart msg today.

The plan is after I have the CT Scan for Oncology and see him then my General Surgeon will talk to him, see what his thinking is and if stable (please God, I beg that it is ) she said we could discuss how to deal with this. I pray (as much as I don't want surgery) that we can somehow fix this and make it less noticeable and thus also the ostomy not leak so much. Please pray if you will. 

Otherwise I saw Rheumatology last wk and restarting the humira (was my decision to stop it for a little while). The benefits are worth the small increased risk for infection and heart failure so this should perhaps help the seeming increased joint stiffness. 

I see Cardiology next months with Echo. Sadly my Cardiologist (for 11yrs in August :( ) has left CHW and moved to a new practice in Chicago (where he is originally from so I was not to surprised even if it stinks). I am seeing 1 of his newer colleagues; Dr.Gerardin who trained at both UofMn and Emory - 2 MPS treating centers. I've emailed with her numerous times since she has been at CHW re our mutual interest in MPS and see seems very nice so I am hopeful she will fill Dr.E's very tall shoes! I will definitely miss working directly with Dr.E's nurse (Jane) who is woeking w/other Cardiologists now.  There where concerns for R heart failure and some other pulmonary-heart issue on last scans so hopefully that isn't a big issue (but no one seemed overly concerned so maybe a good thing). 
I say it every time but will try to update again sooner then this last time!
Thanks for stopping by,