How does one help from across the country?

[glavelle]

Hello all. Newbie here. *I* don't have LE but my sister *does*. I live on the west coast of the US and she lives in the midwest. I'm not sure how long she has had LE, but I believe it has been less than five years. Up until a few months ago, we talked almost everyday, and every day she would tell me how bad it was, what was happening with her body, and then the conversation went into such personal details I told her I couldn't listen anymore. She weighed over 400lbs before LE was either diagnosed or began, so tending to the condition was very hard for her, and is now impossible. The past 9 yrs she has gained over 300lbs, and she has slowly but surely became unable to do things that by now she is homebound. Fortunately for the time being, her boss is letting her work from home, but she isn't sure how long that will last. Unfortunately she doesn't have family nearby to take her to her appointments, and the doctors/therapists that she *has* seen haven't done anything for her.
I "get" that I can't fully understand what she is going through. I just feel so helpless not being able to help, or thinking that I'm supposed to be *doing* something so that she gets better. She doesn't want me to tell any of our extended family (who live a few hours away) because she doesn't want to be seen. She also doesn't want me to tell them if anything "happens" to her. I suppose when they ask about her I could just change the subject and discuss the weather....Is there anyone out in cyberspace that is dealing with LE that doesn't have a support network? What does my sister's future look like? My sis has had a weight problem for many years, and I've tried to be supportive of her diet/exer efforts, as have others in her life. Now things are worse due to the LE. And she keeps saying she wants me to understand how bad things are by telling me everyday, and I'm sorry, but I just can't take it anymore. Thanks for reading this if you've gotten this far. Help! What am I supposed to do if anything?

[bechill]

hi there i thing you should talk to her and let her know that she will need all the support that she can get. That they don't need to necessarily see her but talk to her have the verbal communication is a good thing. Some times you have to over step someones wishes to help them. Yeah she may get mad but it will be worth the support . Maybe even talk to someone that you trust first and work further into the family. I hope this helps you out

[glavelle]

Thanks for the reply. As it is now, she isn't taking care of the LE because she just can't. It has gone from her feet up to her chest. We do have family within a couple of hours of her home, and I thought that one of them might be able to help. My hubby and I have thought about moving her here, but we're not sure how we'd do that, and it would be horrendously uncomfortable for her, sitting on the floor of our van across the country (she weighs 600lbs). So, we'll continue to pray and hope that some doors open.

[glavelle]

I live in WA, and my sister lives in MI. There is a lymph clinic sort of near her, and she attempted to start treatment, but couldn't continue. The wrap did work, but would fall off while she was at work, and she couldn't wrap herself again. So now she isn't doing anything for the LE, and it is getting worse. I'm not sure how long she can go on like this.

gail

[joanne johnson]

Your sister seems to be in a serious situation. I'm glad that she has you to be concerned about trying to help her. Maybe she needs to apply for disability or get involved with services of social services with a case worker. Someone locally must be able to help her in some way. I hope that she is open to help from any available avenue. I wish that I had more ideas, maybe somebody will think of something else. Keep us posted.

[glavelle]

Update on my sis: She decided to call our relatives herself, because she wanted to let them know that she wasn't visiting because of her condition, and not because she didn't care about them. They, of course, said they didn't care how she looked, they just wanted to see her. Now for the bad news: She called this morning and told me that she was going into the hospital Tues or Wed because she was having trouble breathing. The doctor will put her in IV diuretics to hopefully get rid of the fluid. I asked about a plueral effusion, and she didn't know what that was....I will call my uncles and see if they could visit her in the hospital so she won't feel so all alone.

gail

[bechill]

that is good new that she has included the family. She will also need to let the Dr's know that she has Lymphedema

[joanne johnson]

Hi,

I am glad that your sister is going into the hospital. They will work with her to get her feeling better and find some answers. Being with family will help too. I hope that you are feeling a little relieved too. Take some of the stress off you. Try to think positive thoughts and remember that you are not alone. We are here for you also. Happy holidays

[glavelle]

Update on my sister: My sis *did* decide to call our uncles who live a couple of hours from her and touched base with them. On Tues, she was having trouble breathing and couldn't reach her oxygen tank, so she called 911. She is now on IV diuretics and something else, and by the next day she was sounding and feeling better. I'm keeping our extended and immediate family up-to-date on her status via email. Our Uncle Jim and Aunt Kathy visited Sis in the hospital (I told him to err on the side of "she's in the hospital"), and they had a great visit. They are supposed to visit again today, and have told Sis that they will help her any way they can.

As of yesterday, she has lost over 40lbs of fluid!

Now that she is in the hospital, she has had a chance to speak with surgeons about various procedures she could undergo to help her lose weight. I'm not quite sure what all is going to happen, since they are reluctant to do a gastric bypass on someone with lymphedema, nor will they do a "tummy tuck" (there is a differnt name for this, where they remove the fat from your stomach, but I can't recall it right now) because they don't think she would heal properly. An OT said that she might not return home when she is done with her drainage--she could end up in a PT rehab center. Unfortunately her case worker (the guy who is handling her as a patient) doesn't have any answers for her, and doesn't know anything about a rehab program. Sis is running out of sick leave (Family Med Lv Act allows only 12 wks off), running out of money, and isn't sure her job with the county will still be there if she can't get back to work (they are cutting staff...like everyone else is doing).

So, that's where we stand. Not sure what is going to happen from here, but I am sooo thrilled she allowed our family "in" to help her.

gail

[bechill]

i an glad that your sister is getting some help. My therapist has told my that it is not a good thing to get liposuction and other surgery like that because it will destroy the lymph nodes. I hope that she will have a job to back to has anyone tried to talk to her work and ask for extension on leave. I hope everything works out

[glavelle]

Hello again.

It's been a while since I updated re: my sister, and unfortunately the news isn't very good. I visited my sis just after Christmas, and she was back in the hospital because her kidneys had shut down due to an infection. She had lost about 100lbs with the IV diurectics the first time, then was sent to a rehab hosp so she could get stronger and be able to live on her own. Well, two days after arriving at the rehab, she developed an infection and was sent back to the hospital. After a couple of weeks, her kidneys started to function a bit, and while I was there she was removed from dialysis and off of the oxygen. She developed a bedsore that required daily treatment, and had the PT and OT folks in to help her get around. Just before I left, she was sent back to the rehab hosp, where we were told she would probably stay for about 3wks.
Well, this time around, the edema has gotten worse (probably from sitting in a hosp bed forever), and rehab was extremely difficult. She weighs only 472lbs now, and a good portion is the swelling. Because he abs have grown so large and hang down so low, she needs two people to help her walk with a walker, and needs help getting dressed, cleaning herself, etc. Basically, she has been told she can't go back to her apartment or to work. Right now her social worker is looking for a nursing home for her so she can get long term PT. We are unsure of what is going to happen long term. Sis suffers from congestive heart failure, and her new cardiologist said that she had been on the wrong meds and changed her to three other drugs. So now there is the delicate balance of making sure whatever drugs she is given don't mess with her heart or her kidneys (which still aren't up to working 100%).
I apologize for being such a downer. One minute it looked like Sis was on the road to recovery, and then she was slammed with an infection that almost took her life. It's hard to believe this is happening. Thank you all for your encouragement.

God Bless,
gail