Need of assistance (health advice)..

Hello All,

I'm dealing with a difficult time.. And it feels like I'm at the end of my rope.. I'm not ending anything, but I need to help my wife. I took her to the ER, and was sorta diagnosed with possible lymphoma. Needless to say we're pretty devastated, but she can't go to the bathroom, she feels like she can't even pass gas she only burpa, like she's backed up. She eats very little and throws up mostly everything. It's not even confirmed but if anyone has dealt with something similar, How can I help her go?? She was super dehydrated so I'm trying not to induce diahrrea and dehydrate her further. I've asked the doctor's office but have not gained any traction, it seems everyone is dragging their feet. Have an appointment for next week for a ct scan but that's about it....
Can anyone help me, please.

 

How long has this been happening?
Give her only fluids, fruit drinks and milkshakes.
I'm not a dr, sooooo.......

 

Fluids lots of fluids and if it is possible get her to a Gastroenterologist ASAP and be polite but firm with the doctors office. If she is in pain I would get to the ER and see about getting her admitted. I hate to even say that but it sounds like she has some things that need attention. I hope it all works out

pedialyte

 

Yup. Take her to ER not UCC and ask for physician not PA or NP. What city you in? What tests were done? What finding was the “possible lymphoma” diagnosis based upon? If they give you any resistance ask for second opinion from a specialist.

 

Palmdale, CA. They didn't see the need to intake her, I was sitting there when they did lab results.

 

Been giving her lots of fluids All she really intakes

 

Noticed about 2 weeks ago she went from solids to fruit drinks until I took her in last week. ER doxtor said no sugar drinks

She is lactose intolerant.

 

If she can not keep anything down y’all need to get her to the ER where they can get her comfortable and get some fluids in her. They can do a CT which only takes minutes and at least start to narrow down possibilities, and have some possible answers for y’all. I wish y’all the best!

 

That's already been done. We were released the next morning. She got CT scan, xrays and ultrasound before being released. She can hold down fluids for hours before getting nauseas and having the need to throw up... I got her to not throw up in 30 hours, gained 7lbs of water weight in 2 days. The issue is solids. Where are they going?? She can pee but a little.
I give her plenty of water, laurel tea, water with lemon no sugar. I'm calling gastro tomorrow and getting that ball going.

 

She got bloodwork done, but they didn't Ppear to be concerned with that, just small balls in the abdomen where there outcome was... I'm thinking massive ball of poo, but am no doctor and don't know how I can help.

 

Assume you went to PRMC or AV hospital. Might be worth the drive to UCLA MedCen or another big teaching hospital.

 

Best I can describe now is she is becoming bulimic but in this case for digestive purposes.. not to lose weight.

 

She feels she can't make the trip.. which is why I feel jammed... plus we have a special needs son that I will need to keave somewhere.. Don't have anyone that can handle him..

 

Yes PRMC.

 

A radiologist ought be able to distinguish radiographic features of obstipation from more ominous findings. In the old days plane film abdominal X-rays were the norm in ERs but CT is pretty much done nowadays in all but small rural facilities. Do you have access to the X-ray reports in the patient portal?

 

Return to an ER within 72 hrs of a prior ER visit should get the hairs on the back of their necks standing up. Hospitals are graded on this metric and others. ER returns should trigger a thorough evaluation to be sure nothing was missed at first visit. Be sure to accurately report symptom onset, duration, character, past medical and surgical history as well as all medications, allergies and treatments.

 

No improvement in a week, recommend she go to ER. If situation warrants call EMS. Wishing you the best.

 

Radialogist stated small balls consistent with lymphoma, so she's scheduled for another ct scan with contrast this time..

 

Considering this heavily... She didn't want to stay just to sit down and get fluids, which is what they offefed

 

I really want to go down the laxative route, but I don't want to harm her in anyway... Just feeling the pressure of the world on me... and feel useless in assisting her..... feels like I'm in a mud pit in a fwd just turning my wheels and chucking chunks everywhere while digging myself in deeper.... I may need to consider retirement at this point or switching to a wfh scenario which are now going away since I can't see clearly a way to move forward....

 

Contrasted CT improves specificity and sensitivity of test. The gastrointestinal tract is the most common site of extranodal lymphomas and as you say the radiologist already noted findings consistent with lymphoma. Diagnosis of GI lymphoma is dependent on histologic evaluation of an adequate tissue biopsy specimen. If she has not yet been referred to a general surgeon, recommend she return to the ER for further evaluation. Watchful waiting is not a good option. Wishing her prompt diagnosis and treatment. Please keep us posted.

 

So I was sent to her pcp and requested an oncologist and I was sent to get a CT scan a week and a half from Monday.... I wasn't given a specific position or area just the general lymphoma term and we've been looking stuff up and really coming up with random answers. I really want to take her to Burbank hospital, or as mentioned UCLA but my financial options are limited... Plus distance puts me in a difficult predicament.. Its going to hurt in either direction... My special needs son, especially...

 

Sorry to hear about your wife.

I understand that she didn't want to wait for fluids, but if she's not keeping things down she really needs to go back and get some IV fluids. She is possibly having an electrolyte imbalance and needs fluids to correct this. I know blood work was done, but without looking at the numbers it's hard to say.

Depending on location of lymph node enlargement, this can cause issues with digestive system. If the spleen is enlarged it can put pressure on the stomach and make things hard to get past and continue on the digestive tract.

Remember if nothing is going down she's not going to have anything to come out. Continue with fluids. Increase protein in fluids. Boost, ensure, ect are going to have higher caloric content than fruit smoothies and milk shakes. If she's losing weight she needs calories.

Get in with PCP (primary care provider), depending on age she may need to see a gastroenterologist. Esophagogastroduodenoscopy(EGD) maybe needed to check for H. Pylori, and colonoscopy to see what's going on with the lower half of digestive tract.

I understand the frustration this is causing. I wish I could be more helpful. More information is needed, both on reports of what's already been done and what needs to be done as follow up. CT contrast can be harmful to kidney's, so try to get as much fluids in her afterwards to help flush it all out.

Good luck and keep us posted. Squeaky wheels get the grease. Keep searching for answers and appointments with who is needed.

 

As a former RN and not really able to give medical advice, but I can tell you that a glass of warm prune juice with about 30cc of MOM does wonders for getting things going. In my experience, if you can't do number 2 then the rest of the body doesn't do too well. The juice really doesn't taste bad at all.

 

First, let me say that I'm sorry to hear about you and your wife having to deal w/this. Dealing w/medical stuff sucks w/o running into roadblocks, but it's 10 times worse when you feel like people are turning you away or not providing you with due diligence in caring for your loved ones.

Something to keep in mind is that most hospitals/facilities have what's called a 'patient advocate'. Their role is to be a go-between and liaison on your behalf when disputes or discrepancies arise in patient care. A lot of folks feel like they are only there for dealing w/after care (billing and such). However, they can be a good resource in being 'heard' when it comes time for you to start bending ears a little. Another thing they can be very helpful with is pointing you toward additional resources or options to consider for helping you w/decisions, courses of action, and even providing possible resources/ideas for you on how to best accomplish caring for your wife and helping her get through this while still maintaining the needs of your son.

Also, don't forget about other resources such as neighbors, friends, family, co-workers, employee assistance programs, chaplains, etc.

Take a notebook w/you to each and every appointment AND take notes. Writing down what you are being told by Drs. and other staff will help you more accurately process what information you are being given. Don't hesitate to ask for clarification when you don't understand something or if something doesn't make sense. Ask the questions you want to ask (write down your questions prior to appts, etc. and refer back to your notes during appointments). If you are not satisfied w/an answer or disagree with something being said during an appt, speak up and voice your concerns/questions.

Finally, as someone already mentioned, places like UCLA can be awesome in dealing w/complicated cases (not sure you're there yet), but start creating a 'packet' and timeline of symptoms, visits to Drs/ERs, tests, etc.... and if you end up needing to visit a speciality hospital such as UCLA, Scripps, etc.. you'll be prepared to advocate on your wife's behalf....

I wish you folks the best!

 

Don't think I've ever been closer to God since my ship was run out of the med during OEF.... I'm lining up to go visit the Gastro office tomorrow either on a long break or after work.

All her results with organs came back as normal size. HCT on her bloodwork, came in high like 50points over. There were a few other things that came up a little high, a little low rounding out 5-8 points, but I don't remember what they were. The 1st one stuck since it was the highest from the normal range.

I'm going to a local GI office today. PCP after if I need a referral, I do feel PCP office is kinda roadblocking or not taking my urgency into account, once I set my wife up with all she needs, I will fire them and establish care at another office. I need them right now, so it's not an option at the moment.

Man I bought a jug of prune juice right before I took her to the ER. It's been sitting on the counter for a few days, maybe it's time to crack that bad boy open.

She has refused to go out of the 30 mile range from home since she is in so much pain and just wants to lay down and thinks about her son needing her.

 

This is my reality...

I really want to take her out of this valley, but I'm in a real jam. I do have 2 kids, 1 is 15 the other is 22. The 15-year-old is normal kid just a teen, enough said, the 22-year-old is Autistic, severe non-verbal, my forever kid. We had a process to get him schooling and work study requirements, but because he is really hands on, on people sometimes, nobody wants to deal with him. Unfortunately, that's how he is there is no way around him. I've worked with him for years and I've come to terms that he isn't changing. We discontinued SSI, since we kept getting smacked with overpayments year after year, because of my income, lack thereof or receiving benefits from the county. We discontinued Respite as we've had some nannies just up and leave him home alone or would leave him in a neighbor's care, because they had something they needed to take care of. There is a limited amount of hours regional center will provide, 24 hours in a quarter, outside of those times it's our problem. He does need assistance with everything from eating to self-care and bathroom usage. Think about your 2-year-old in a grown man's body...

In reality every time we need to do something I've been between a rock and a hard place. He is sometimes difficult to deal with sometimes he is cool, he can be emotional and that's far more difficult to soothe him. My mom can't watch over him as she's had her neck fused to her head, and he can turn aggressive at times, so that's out of the question, unless I want to lose my mom in the process. My brother and his wife work in Santa Monica, so they can't assist either, they leave their kids with my mom, and she can barely keep up with them... My MIL is gone to heaven, my SILs 2 of them, pretty much turned their back on us while going through the court conservatorship proceedings as they didn't want to deal with him. So, I'm basically on my own in this, I may need to try to reconnect to at least try to get her blood transfusion or bone marrow if I can't find suitable donors for her, then again, it would be up to them to actually come through.

So, this is just a brief summary on a pretty complicated life, I'm sure there are people with far worst things going on and I feel for them as I've been exposed to a lot of those as well.

On a follow up, last night while I sat at my kid's extracurricular activity it dawned on me that I can call the telehealth 24/7 help line. When under so much pressure you start to miss a lot of the signs that are in front of you. I finally got some help, not a lot, but something is better than nothing. I'm starting to think that there was a language barrier between her and the physician and not everything was taken into account. In this case I took the lead and explained everything in detail and didn't omit anything as it will only cause more harm than good. Which is my goal, no harm, just help.... Well after my detailed explanation I got her prescribed laxatives plus multiple OTC options, and strong pain meds for her, at least the ones they can provide. I was also given a few med options to take to my PCP for extended use. He was seriously puzzled as to why the ER discharged her without addressing the pain in the abdomen area...... The PA or doctor on the other side of the phone line did ask some very interesting questions which my wife and I both looked at each other asking the same thing. I wasn't allowed to follow her into the examination room in the ER because of covid or whatever, so I kinda feel like there was a lot missed.

Celebrating that last night, she was able to sleep 4 hours on drugs, which is a lot more than the 45 minutes before the pain would wake her up for hours, this morning I asked her to take the EXLAX around 7am, so that she can at least make it out of bed with day light. TBH, if she didn't make it, I wouldn't care, I'd be happy to clean it all up... Double celebration this morning, as she has taken a dump... she was like I went and they were massive.... Don't think I've ever gone that big, lol... So, 2 things down from my list.... I can sorta rest. Thank you all for the support.

In the end a victory is a victory, but this is just the beginning. She needs to sleep to be able to recover. I left for work early this morning and will continue a bridgehead to get her the care she needs in different offices. I can't stay home and sit on my hands, and I don't want to waste my PTO to visit an office and be told go to your PCP and get a referral. I'll build my time, as much as I can and go on FMLA when the time comes. It's been a rollercoaster in just 4 days, but I'm happy I got some good insight and feedback from you guys. I'm really grateful at this moment. I will continue to update as needed...

 

Gastro appears to catch the urgency a little more.. Got an appointment for tomorrow, so I'm skipping work. I got my notebook and paperwork ready to go. She seems stronger this afternoon than the last few days, complaining of leg cramps, assuming dehydration got her electrolytes and pedialyte and some supplements last night. I really hope this was just a scare

 

I'm no nurse, but my wife is...and this is what we use when we need to. 30 ml of prune juice with the same amount of milk of magnesia and warm for 30 seconds then drink.

I disagree on the taste, though. LOL! I cannot sufficiently convey just *HOW* nasty that concoction is, but good Lord does it ever work. O_O