Sunday, February 3rd
I was able to come home Thursday afternoon WITH my new port. The surgery/ placement kept the surgeon on his toes as what usually takes about 30 minutes took three tries and two hours with part of the port having to be placed through my neck in addition to the more standard incision in the upper chest. The more involved procedure meant for a bit more recovery time, discomfort, etc but in the end I'm thankful to have the port at all so am not complaining (at least not too much!) Obviously the bigger issues remain but for the moment I'm crisis-free.
Many thanks for all of your prayers!!
:-)melissa
Monday January 28th
My port was removed on Thursday and various testing has satisfied the surgeons to the point that they're willing to - hopefully - get a new port placed. The surgery is scheduled for tomorrow morning at 8am (Tuesday) so any extra prayers, good thoughts, etc are appreciated!
1/23/08
Yes, I have now managed to far surpass any & all of my prior delays in updating. I can hardly believe & am thoroughly embarrassed that it has been over seven months since I’ve updated anything at all. For those of you who have kept checking thank you for your persistence. You may be happy to know that there’s now a feature wherein you can sign up to receive an email notification whenever I do update something on the site. The link is at the bottom of this page.
I was also featured in the Dysautonomia Information Network’s Summer Newsletter “Meet the Member” column. A few details are now a bit outdated, but if you’re interested the link is: http://dinet.org/summer07/sum07news3.htm.
And now to tackle the task of providing an update that won’t take days to read. In the interest of everyone’s time and sanity there will be a lot of summarizing, glossing over, omission, etc. Even my “short” versions tend to be lengthy but here goes…
End of Summer/ Back to the Hospital/ Food Fun
August brought a visit from Tim (“little” brother) after his summer in Europe & - as a much less welcome intruder - another emergent hospitalization. This stay was just under a month with the first week spent in ICU. Many things were similar to previous battles with septic shock, though familiarity doesn’t make the situation more comfortable or less precarious. One thing that was new this time around was that the fluid resuscitation used to keep me alive in turn caused serious pneumonia & pleural effusions (fluid around the lungs) that required additional interventions.
I somehow “bounced back” from this bout of sepsis better than I have in the past. It would be easy to obsess about the whys & hows of this but while there are several things that may factor in the only foolproof answer is that we just don’t know. While recovering from the acute respiratory issues in the hospital we discovered that I needed a different type of machine to better treat my sleep apnea so amongst other things that change may have helped with the better rebound.
The most significant change that occurred during the hospital stay though was in how I receive my nutrition. Since March 2005 I had depended solely on IV nutrition & hydration and our attempts at tube feeding into my small intestine hadn’t been too successful. A persistent medical team this go around was able to find a specific formula that – on most days – my body seems to do well with such that I was able to wean off of the IV nutrition, something that is MUCH better for the liver & the body in general. I still need the IV hydration as my intestines can’t handle enough fluids, but all in all my body seems happy with the change.
But while this change is considered significant from a health standpoint, from a “real world” standpoint not eating is still not eating. Which brings me to the truly fun news. A change in medication (something we’d tried before but in a different & less successful way) has allowed me to forgo being attached to gastric suction/ drainage 24/7 and actually have some bites of real food!!! It’s not every day, it’s not always successful, I still get sick at times, & some things are off limits, but it is SO pleasurable to be able to even sample some of the tastes & textures I’d been without for quite some time. There’s no way to know whether this improvement will last but I’ll take it while I can!!
SSDI Update
September’s highlight was my long-awaited Social Security Disability Insurance (SSDI) approval. Though the extension of my private insurance through 2009 removed the urgency the approval was ultimately still important and it’s a great relief to have it off the table. Thankfully the hearing date was a week after my hospital discharge and – pumps & tubes & wires in tow – I was able to get there.
The hearing was the shortest and easiest that my attorney had been to (or even heard of). It took about a half hour, most of which was procedural jargon that had to be read. Other than that the judge asked me two questions, acknowledged that those who had looked at (and denied) my case previously “obviously didn’t understand the severity of the situation”, and approved me on the spot. For as long & drawn out as the entire SSDI process was (almost 2 ˝ years) the hearing itself was quite painless, though dealing with the system (even now that I’m approved) continues to be….well, interesting.
Fevers/ Sepsis
The dominating health issue these past months has continued to be sepsis, though in a slightly different fashion. Toward the end of September – less than two weeks after my hospital discharge – I started having fevers. Initially it was almost a relief to realize that I could experience a fever & NOT have it evolve into imminently life-threatening septic shock within hours. The fevers range from low-grade annoyances (99-100 compared to my normal 97-98) to quite high (up to 104.7) accompanied by severe chills/ shaking but have been almost daily for what has now been four months. When the fevers are higher I am quite sick by any normal standard but compared to the times I have been hospitalized with septic shock I am nowhere near as ill.
Because I didn’t deteriorate between the higher fevers (but rather continued to do relatively “well” – for me) and because my white cell count was normal (generally not the case in the presence of infection) the possibility of sepsis was largely dismissed for quite some time. With infection & a reaction to medication thought to be ruled out the general thought was that it was “just” an autonomic issue. Body temperature is yet another thing controlled by the autonomic nervous system – the part of me that, to put it bluntly, doesn’t work so hot – so while this seemed a bit extreme it was the “answer” that seemed to make sense.
In early November, however, I spiked one of my high fevers at a doctor’s appointment (my autonomic specialist). He felt that we needed to run blood cultures before we could entirely be confident that infection was not an issue. My white cell count was still relatively normal so none of us really thought that the cultures would grow but the next day we got word that they did. In other words I had sepsis again – and probably had for over a month – but somewhat amazingly my body had somehow been managing it without becoming critically ill. It was a mixed feeling at the time…excitement that the fevers had an answer and thus weren’t my new “normal” and relief that we’d figured it out without a hospital stay and/or without my deteriorating further. But also disappointment that the GI-based sepsis wasn’t a thing of the past. We had had hopes that my transitioning from IV nutrition to tube feedings might help to resolve this recurrent problem; there’s still no way of knowing whether the change might have something to do with why I haven’t gotten as sick, but in the end the problem isn’t gone.
After several days of antibiotics there seemed to be some improvement but within a few days of their stopping the high fevers returned with a vengeance. Again blood cultures showed infection, as have all of numerous cultures that have been run since, both with me on or off antibiotics. Along the way the sepsis has caused two symptomatic bouts of pneumonia as well as various abnormalities on lung & heart testing (that don’t cause me symptoms but aren’t the best in terms of what’s going on in my body).
Additionally my port – the IV access that I am dependent on daily - has also become infected. Though not the initial source of infection, once a port is infected it is difficult and often impossible to treat and, as such, it then becomes a continuous secondary source of infection. In most circumstances a port would have been removed long before now, but because I have had so many central lines (a port is one type of central line) scar tissue is making it harder & harder to place new lines. This presented quite an obstacle during my last hospitalization and the current reality is that there is the possibility of not being able to place a new line. Because of this (and because I was stable enough health-wise) we have tried anything and everything (including numerous combinations of IV antibiotics at all odd hours of night & day) to avoid having to remove the port, but ultimately it now has to come out.
The protocol for removing and then replacing an infected port entails removing the port, ensuring the body is free of infection, and then inserting a new port. I will be in the hospital throughout & will have temporary IVs after the port is removed but that is where the certainty ends. While port removal and placement typically fall fairly low on the totem pole as far as surgical procedures go, the surrounding issues in my case make the situation much more complex and quite ominous.
To begin with we aren’t certain that we’ll be able to get my body infection-free once the port is removed. If in the short-term we are able to get me infection-free, the next hurdle is trying to place a new port, something we know isn’t going to be easy and could be impossible. If a port can be placed then the next reality is that, most likely, it will only be a matter of time before it too is infected by the intestinal bacteria. Which then puts us back to square one with fewer antibiotic options (as the problematic bacteria are now resistant to all but a few.)
So, in short, it’s not a good situation to be in. I’ll leave it at that for now with the intent to delve into deeper issues later (no, not seven months later!).
The Day-to-Day/ Other Bits & Pieces
As I mentioned earlier, I rebounded better from the August/ September hospitalization better than I have in the past. In terms of my functioning on “good” days this “better” trend has continued but it’s a hard concept to embrace because while my “good” days/ hours are better than they were this time last year that is only one slice of my day-to-day reality. Most people see me during my better days/ hours & don’t see the “rest of the story” so to speak. So while it is truly amazing that I can get out on my own at times (yes, including driving) after not being able to do so at all for a year, that doesn’t mean that everything is better and that I don’t pay for pushing to do what I do. It also doesn’t mean that the underlying reality of my deteriorating health has changed. But since I find it hard to comprehend that – externally – I can be in some ways functioning better in the midst of a four month bout with sepsis, it’s understandably difficult for others to grasp.
In being able to get out at times one highlight has been being able to attend church with some regularity as well as bible study meetings at times. While I may not always articulate it enough, my faith is instrumental to my very being. God has nurtured me during the times when I haven’t been able to attend church or engage in studies with others but the fellowship is always missed.
Holidays
My most treasured holiday gift this season was avoiding the hospital (though not without thanks to some creative doctors) for Thanksgiving, my 28th Birthday (though I think I aged more than a year in the preceding 12 months!), Christmas & New Years. Last year I was unable to join the rest of the family on Thanksgiving due to others being ill, I spent both my birthday and New Year’s in the hospital, & Christmas was nice but tough in that I had just gotten out of the hospital. While underlying issues lurked and I can never truly take a break from illness, this season was, relatively speaking, a bit less engulfed by the medical than last year. Fevers continued as a constant companion throughout but thankfully were never at their worst on the actual holidays such that – during the better moments – I was able to partake in some things in ways that I hadn’t the previous year(s), such as attending church on Christmas Eve.
My Grandma was here for the week surrounding Thanksgiving, as was Tim, and despite pneumonia I managed to make it to Columbus for the traditional gathering. It was great to be around family who I don’t often get to see (even if from my “parking spot” on the couch), but I was especially excited to visit with my Nana who I hadn’t been able to see for two years. She is in a nursing home close to my aunt in Columbus and God blessed us with a visit on one of her better days which was wonderful.
Wrapping up
I’m actually finishing this up from my hospital room as I didn’t quite make my goal of posting it prior to this morning’s admission. After cardiac testing tomorrow morning (a transesophageal echo for the medical folk in the audience) the port will likely be removed sometime later tomorrow and we’ll proceed from there.
As always your prayers and good thoughts are appreciated…for the immediate events of the week but even more so for the bigger issues at hand.
Thank you to all of you who continue to walk alongside me on this journey.
~melissa
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