Prayer/positive Thoughts Requested

[pickledfairy]

Hello DINET friends,

I have not been active on the boards for a bit now, as I just can't seem to get the energy to sit up at the computer long enough to read as well as reply...sorry for this lack of participation.

I am continuing to have severe problems with my gastroapresis and "stroke like episodes", which has been frustrating to say the least. My docs have decided it is time to start TPN (total parental nutrition) and I will be admitted on Friday at 1pm to have my Hickman catheter placed and to start the TPN. I could use all of the positive thoughts and prayers I can get, I am feeling a bit overhwelmed at the changes happening. Thanks in advance for your support...you all are a great group of people and I am blessed to be a part of this community.

Sheridan

[flop]

Hi Sheridan,

sorry to hear about your continued gastroparesis problems and the weird neuro episodes too - I was hoping that one of your doctors might have come up with something to help with them.

Hugs and best wishes for your hospital stay and for a rapid recovery afterwards. Hopefully the TPN will give your body more strength to fight, and you more energy to be yourself.

Are you going to go to TPN only or will it be alongside any bits you can manage to eat / drink?

Take care,

Flop

[Sunfish]

hi sheridan -

well, i can certainly say "been there, done that" in regard to the gastroparesis/ TPN. i was on TPN continuously for a year & a half & very well may have to return to it at some point (currently managing on calorically dense J tube feedings with IV hydration) so don't hesitate if you have any questions; i'll be happy to help out in any way i can. i currently have a port but have had numerous central lines (PICC, tunnelled aka hickman/ broviac, etc) and did all of my own TPN administration at home. it's a bit overwhelming at first but it didn't take long for me to be very comfortable with the daily routine. you'll likely be assigned a home care nurse upon discharge and i can't emphasize enough the importance of this being someone you're comfortable with; if you're not it is your right to request someone else. a good nurse truly makes all the difference, particularly when you're new to the process.

i don't want to bog you down with questions but i am curious as to why the decision was made to proceed with TPN before trying tube feeding (into your intestine so stomach is bypassed)? do you have known intestinal dysmotility as well? just asking b/c there are far fewer risks of serious complications with enteral feeding than intravenous. and is there a reason that you're having the hickman placed rather than a PICC line initially? i'm only asking b/c i've "been there, done that", read a lot, talked with numerous people who have been on TPN/ tube feeds due to motility issues, etc. it's a bit unusual to immediately have a tunnelled central line placed (b/c more invasive than a PICC) and usually tube feeding is tried or at least discussed before TPN.

if you're not familiar with it already i would also recommend the Oley Foundation (www.oley.org). they're a nonprofit with the mission of support/ education/ etc of those on hope enteral or parenteral nutrition. they have a newletter as well as numerous other resources that you may find helpful, interesting, encouraging, etc.

hang in there,

melissa

[pickledfairy]

Thanks for the warm thoughts!!

Sunfish~ We have discussed a G-J tube or just J tube, but I have severe colonic dismotility as well as small bowel bacterial overgrowth that my doc feels would interfere with my getting adequate nutritional needs from a feeding tube.

My surgeon did not think a PICC was the best option for me because of the risk of clots and as he put it "I have more patients who have to have multiple PICCs in a short time period than those with a Hickman or port-a-cath". We originally talked about a port, but he thought a Hickman would be best as the port would have to be accessed 24/7 (with needle changes of course) and would not be any less of a risk than the Hickman.

Thanks for the thoughts about home health and finding the "right" nurse. Luckily, I worked in pediatric oncology before getting sick, so I am at least comfortable being around central lines and have also done a lot of medical play with my patients surrounding dressing changes etc. Although I have to admit it is completely different when it is yourself that will have to be dealing with the line.

I hope I answered you questions....going to check out the Oley foundation web page!

Sheridan

[Guest tearose]

Hi Sheridan! Glad you took some time and reached out to us...we have someone here 24/7 and are just hopeful for you now as you take this next step.

It is great that sunfish and others can share what they have learned!

You keep focused on getting stronger and know that prayers, meditations and well wishes go to you.

Keep thinking about the smaller steps you will take that lead to a better place. Try not to be concerned about the big picture...trust that you will get to your destination, eventually. Be gentle with yourself. All things will work them selves out in time.

If you can't update us, don't worry. I too, as have others, dropped out of sight and then when possible have come back to update. We will think of you as we do for the rest of the "quiet ones"...our love, support and well wishes continue...

best regards,

tearose

[Ernie]

Hi,

Good luck with the procedure. I will be praying for you. How long do you expect to stay at the hospital?

[Mrs. Burschman]

Sheridan,

Good thoughts headed your way!

Amy

[Sophia3]

Postive thoughts and prayers headed your way.

[Rachel]

Hello Sheridan,

Thanks for letting us know what is going on. I will keep you in my thoughts and prayers. I hope that everything goes smoothly for you on Friday.

Hugs,

Rachel

[Sunfish]

hello again -

i'm glad to hear that you have talked about the different options with your docs so that it's a thought-out decision. i've heard of more than one person whose doc made a unilateral decision without any decision so just wanted to make sure that wasn't the case for you. it sounds like your docs definitely have your best interests in mind though which is a HUGE help in the midst of what is a tough situation. i'll definitely keep you in my thoughts & prayers as you move forward and am certain that your past onc experience will be very helpful. you're right that it's different when it's you, but being familiar & comfortable with medical jargon, procedures, etc is a great advantage. even just having spent a lot of time volunteering in hospitals & studying in the health field were/ are helpful for me b/c while i never thought i'd be dealing with my own lines, tubes, etc b/c i didn't have to get over the hump of being intimidated/ scared of doing things (which is the case for many).

its interesting to hear your doc's opinions on PICC lines/ tunneled catheters. in the past few years i've come to realize that different docs have very strong leanings in certain directions so in the end it seems to be very much a personal preference, with of course there being individual considerations for each patient as well. oddly enough the only time i've ever had a problem with clots was when i had my broviac line (different brand but essentially the same as a hickman). this is NOT the norm but it's what happened to me; the broviac which was intended to be longer-lasting ended up being my shortest lasting line of all (3 wks). i've now lost all central line access in my arms & on the left side of my chest but am currently REALLY liking my port (though my former GI doc, who i loved, wasn't a fan of ports for those who needed continuous access such as me).

regarding the home nursing situation, i should add that for the most part the home care nurses i've encountered over the past few years have been some of the best nurses i've ever met or worked with. i've dealt primarily with 7 people (with additional fill-ins/ subs on occasion) and all but one of them have been very good with two of them being absolutely amazing. but one REALLY wasn't so if that happens to you don't be shy about speaking up b/c there ARE good ones.

last but not least, i do want to put a bug in your ear for moving forward. i'm NOT trying to tell you to change the plans for this week and hope i'm not overstepping or overwhelming you by going on like i am but as much of your situation (at least GI-wise) sounds so similar to mine i'd feel remiss in not sharing a bit more about my experience. i too have intestinal dysmotility and was told by numerous docs that there was no way i'd tolerate tube feeds so there was no point in trying. we ended up placing the J tube (initially G/J but now i have separate G & J) for meds & an attempt at trophic feeding (VERY small amount of feeding without any meaningful nutritional value) to try to help maintain the small amount of intestinal activity i had and to attempt to quell the severe bacterial overgrowth. bacterial overgrowth has been & continues to be an ongoing issue for me to the degree that the bacteria have - on four occasions - translocated to my blood streams and caused truly life-threatening septic shock. a few months ago i was actually in the process of pursuing a multi-organ transplant b/c things were NOT good but, much to everyone's surprise, a stubborn doc was determined to give the jejunal feeds one more time at the end of my last hospital stay and we managed to find a formula that i can tolerate. it's very dense so the quantity needed is much less and while the bacterial overgrowth is still expected to be an issue for me the expectation is that it will be less of an issue than when my intestines weren't being used hardly at all (meds with flushes & a small amount of "feeding", i.e. 100 calories every 24/hrs). i am still dependent on IV hydration via 3L of saline daily b/c my intestines can't tolerate/ process enough volume to keep me hydrated. with higher volume my intestinal contents actually move backward unto my stomach & i can drain them from my G tube!

i also found the G tube to be a HUGE relief in regard to nausea & vomiting issues. for most of this year i was on continuous drainage/ suction and while i'm currently managing with intermittant drainage (due to a med change) not vomiting bile on a regular basis is WONDERFUL (something that was my "norm" even without ANY oral intake). and getting my meds via J tube was something i wish we'd done much sooner as i was hardly getting them at all when i was trying to take them orally. so...in short i just want to encourage you to realize that there MAY be other options moving forward. obviously i can't guarantee it as we're all different but even with fairly severe intestinal issues there is a possibility of tube feeding. and/or a j tube can be great for meds and/or the g tube great for drainage/ decompression. often NJ tubes are used for a trial before a surgical placement in order to try out the feeding without anything invasive though sometimes they tend to migrate into the stomach and thus aren't a good test. one good thing about being on TPN when trying to start tube feeding is that you have more room to try to work into tube feeding tolerance, trying different formulas, etc without there being a concern about malnutrition in the mean time.

having only been off of TPN for about 6 wks we know that i'm absorbing sufficiently for now but there are still doubts about how it will be long-term. other than electrolyte issues that are requiring some supplementation (as well as the hydration) i'm maintaining & have even managed to gain back the weight i lost during my last bout of sepsis. at some point i very well may have to return to TPN but if nothing else my liver is getting a break & i have one less thing increasing my chance of infection.

i'm sending lots of hugs & prayers & good thoughts your way.

melissa

p.s. do you know if your docs are planning on cycled TPN (12 hours) as opposed to continuous (24hrs)? you always have to start on 24 hrs but unless there is a specific reason that the cyclical isn't an option it's generally preferred in the long-term/ home setting. not only more convenient but also better on the liver as it gives it a "rest" so to speak.

[pickledfairy]

Thank-you all for your warm wishes and positive thoughts!!

As of this morning things have changed completely! My doc was called by my insurance company today and was told that they do not cover nutritional support of any kind. My doc is trying to appeal, but we don't know what the outcome will be. So, no line on Friday.

I am very disappointed and can't help but wonder how much weight I have to lose before I can catch a break (now down 55lbs in 5 months). I just want to halt this weight loss and gain back some energy....I want to be able to walk up the stairs or get out of the house for an appointment and not have to recover in bed for days afterwards! Medicare doesn't kick in until June (which I hear has its own issues with nutritional support) and if we wait until then, at this rate I will be a skeleton.

Sunfish~thanks so much for all of your input, it has given me a lot to think about in terms of the g/J tube issue, and now I have the time to think about it all. I'm glad it is working for you right now and giving you the ability to gain back some weight. Even if it doesn't last for the long term, like you said at least you have given your liver (and yoursefl) a bit of a break from the TPN.

Thanks again for your support eveyone....it means a lot. I will keep you posted.

Sheridan

[MomtoGiuliana]

I am sorry that you are faced with such serious health challenges. You are in my thoughts.

[morgan617]

Sheridan, you will be in my thoughts and prayers! I hope this helps you, although I know it must be disheartening.....morgan

[thejohnsongang]

Sending thoughts and prayers your way. Wishing you the best with your procedure.

Nolie

[ajw4790]

Wishing you the best and that your able to figure it all out soon!

It is awful that you are being denied the treatment that you obviously need!

[Sunfish]

unless you have a policy with only catastrophic coverage, it's hard to imagine an insurance company without coverage for TPN IF one has met their criteria. the criteria can be quite rigid though (for good reason as TPN & related expenses cost hundreds of thousand a year) and very often (if not always) require proof of inability to use tube feeding. and - as backward as it may sound - there are policies out there that don't cover tube feed as this can be considered a replacement food product and is available without a prescription. TPN, however, is a prescription IV item so falls under infusion therapy in regard to insurance coverage rather than nutritional support. it sounds like somewhere along the way some information may have been lost/ confused in regard to the information you received b/c, at the very least, it sounds incomplete. i'm not implying that anyone meant for that to happen but unfortunately it's still a common occurance.

while i know it takes a lot of time & energy, at this point i would call your insurance company yourself to try to find out more directly what the situation actually is as it's hard to problem solve without a crystal clear understanding of the problem. if the initial customer service rep doesn't seem knowledgeable (which is VERY likely in regard to this more specialized issue) insist on speaking with someone who CAN give you an answer. realize that they can't give you info regarding what your doc has planned specifically for you (aka they can't tell you it will be covered) but they CAN and MUST give you info regarding what the policy states.

i would also recommend (to everyone for that matter) that you work on getting a hold of your COMPLETE explanation of benefits for you policy as the one or two page summary consumers are readily given doesn't help much in situations beyond basic appointments. unless you purchased the policy yourself (privately) this usually has to be obtained through the insurance carrier rather than the insurance company (i.e. the company who bought the policy...for me it's my former employer) but you are entitled to a copy. it may take several phone calls but its well worth it as i can't tell you how many times i've been glad to have it as a reference; in short it's saved me a lot of time/ energy/ stress in the long run.

all the best,

melissa