Worried about Steve

[scaredwifetx]

HI Laurie,

We did call UT. He was given the first diagnosis in late August and we were told we would not be able to get before end of October. No we have not called them since. Steve did not have any major issues with our clinic and how would we know the difference? This stupid disease is a learn as you go disease that we were not prepared for.

re you saying to ask our clinic who they use in IR at UTSW? I can email them tomorrow. Our doctor is out on maternity leave but Dr. Heitzman is covering for her. I will also call Kalva.

Thanks for everything Laurie. You are totally dedicated to helping us and I cannot say enough how I appreciate it. It is very hard to convince Steve to take these measures, when he has a doctor telling him that his breathing can get a lot lower before doing a peg.

 

[lgelb]

I'm sorry, Deb, I thought you had already asked your clinic for an IR referral. That would be one thing, but what I meant also was calling the UT clinic and asking them who they use in-house (it's their own hospital). So that's two avenues, besides just calling IR.

Another possible resource is Dr. Sara Hennessey at UTSW. She is a gastro but does complex/bariatric cases, including tubes, and might be able to help you one way or another.

I am not chiding you, Deb. No one is ready or prepared for this. I spent a lot of time in denial, since there were no reported cases of both Marfan and ALS, until Larry. He should have died a couple of times from Marfan complications. But he didn't. He just lived long enough to get ALS.

 

[scaredwifetx]

Thanks Laurie. I am going to call them all tomorrow. I read you link and he only has a small percent to go before v can have peg.

 

[lgelb]

Well...those guidelines are old and while we can use them to say time's a wastin' given his symptoms, they don't exclude any particular FVC level. For one thing, the literature showing results when using PAP during the procedure wasn't mature then -- still isn't. But one case series (will re-find link, sorry, not seeing it right now) the FVC with PAP averaged 17% and pts did fine. So don't sweat the percentage points. The important thing is to find the right hands, honestly.

 

[ehd42]

Hi Scaredwifetx

I have been following your posts for the past few weeks and there is no question in my mind that you are wonderful wife and Steve is very lucky to have you in his corner.
I'd like to bring up a number of issues regarding your situation that you might find helpful. Recognize that doctors often make decisions based on their own algorithm, which is often be biased. Decisions are based on their training, experience and the limitations of their knowledge. Even a gastroenterologist who has performed hundreds of PEGs may not be familiar with all of the current literature and issues regarding placement of feeding tubes in PALS. They are also likely to be influenced by their experience, which may not be great with ALS. I would ask your ALS center’s neurologist to speak with the GI or better yet with an IR and consult with them regarding the timing or method if you or Steve still has issues. Try to get Steve involved in these discussions.
Others have already mentioned the superiority of a RIG over PEG, and studies support that a RIG has higher success rates and fewer complications than a PEG.
If Steve has any signs of bulbar symptoms or weight-loss issues then getting a feeding tube place sooner rather than later is supported by all of the literature. However, if he has none of the above symptoms then waiting a bit until symptoms just begin and both you and Steve have learned enough to feel that you are ready for this procedure, getting a feeding tube placed makes sense.
I think it would be a good idea that after you have reviewed the links that others have provided you should go online and do your own research regarding the pros and cons of feeding tube choices, their timing, use, benefits, risks and complications. I think it would also be a good idea for you to share what you learn with Steve on a regular basis in order to keep him in the loop, allowing him to make his own decision based on a thorough understanding of the subject. I think by regular discussing these matters it might help him constructively engage in decision making.
As Laurie has pointed out, feeding tubes have been placed in PALS with a FVC far less than 30%. However, the lower the FVC, the greater the potential risk for complications. Therefore, as soon as a need for a feeding tube is palpable, the sooner the procedure it should be performed for both one’s quality-of-life as well as survival time.

Best wishes

Eliot

I hope you will find the following link helpful even though it doesn’t discuss a RiG:

http://www.practicalgastro.com/pdf/March08/PG_Mar08ProcacciniArticle.pdf

 

[scaredwifetx]

Thank you so much Elliot for taking the time to post such an open and through post. Everything you said makes sense to me. Reading a perspective from a very knowledgeable PAL is very important to me. I also want to thank you for the link. I will also read your post to Steve.

I took today and did my best not to think... about what happened yesterday. I have done a lot of research on my own and fully believe its better to go ahead with a rig and to do it before his FVC gets to low. Does it mean we have to rush to get it? Not at all. I have done my very best to stay one step ahead of the progression but know this is not an easy decision.

I also respect Steve's wishes and think everyone who is diagnosed with this disease should make their own choices. However, Steve does not want to know what lies ahead for him. He doesn't want to talk about his disease more than what is absolutely necessary. Trust me that is a fine line. He wont read, research and has only made one major decision since diagnosed. It was within the first week and it was to express his wishes against the trache.

He gets very anxious talking about his progression. His breathing and his blood pressure have been very rough on him the past couple of weeks. He is now using his bi-pap during the day. Knowing that he would be taking risks by waiting worries me. I know him and know he is very scared. I will try talking to him after I have done more research. I sincerely do not want to make his decisions or to be put in that position. We have always been a team and this disease has done enough to us. It cant take away our love and respect for each other. He trusts me with his life and I promised from day one that I would not let him suffer.

 

[affected]

Try and let him know that a feeding tube will greatly reduce suffering he may face, just as you promised him he would not suffer.

I wish there were easy choices, but not with this disease I'm afraid.

 

[scaredwifetx]

Thanks Tillie, we talked a little tonight. I read several posts to him and he is ready to find a hospital who can do the RIG. We both feel that a RIG is our best option. It might take a few weeks to get in somewhere. Hopefully not to long. UT is so hard to get into.

I was very mentally exhausted today so I went to work and tried to put it all out of my mind for a few hours.

 

[affected]

Regardless of being human and not perfect, you are an amazing CALS and wife. I have been so inspired as I have watched you battle my friend.

Courage is facing something that is wildly terrifying, not facing something easy!

 

[scaredwifetx]

Thank you Tillie and coming from you it means so much.You have been my inspiration from day one. At my darkest moments you have been there for me and so many others. I have faced a lot of terrifying moments since childhood but nothing compares to this. I had a shell protecting my heart for so long before Steve and watching him go through this is so very hard for me. I have never felt so weak while having to be so strong.

 

[Nuts]

Deb, I wish that we could take turns being with you in person. I feel the love and pain in your posts, and I know that Steve is very fortunate to have you.

Matt has also been my strength for many years. He is the first man I've ever trusted completely. I've been able to let him be strong, and now I'm finding that I'm more prepared than I thought to reverse roles. It sounds like Steve has helped you prepare also.

Much love,
Becky

 

[gooseberry]

Deb, Steve didnt want to discuss his progression but he was still able to get online and did all his research. He knew, he just didnt want to discuss it.

 

[ehd42]

Scaeredwifetx 3

Hi Scaredwifetx

Your efforts to engage Steve to talk about decisions and the issues that scare him may over time desensitize him to what scares him as he learns more about the ALS and his options in managing things. You have little to lose by trying to engage him, beside him trying to avoid discussing things. In time, talking about these issues could help a great deal. Nothing ventured, nothing gained. I imagine that both you and he are receiving psychological support and perhaps medications needed to manage the stress, anxiety or depression that Steve appears to be experiencing. Keep on plugging away because there is always hope that your efforts will somehow help Steve deal with his fears so that he can make the best of the situation for both him and you.

You previously mentioned that Steve becomes short of breath when he showers or when he goes to the bathroom. I had the same problem and this is how I solved it.
I removed the glass door from my shower and replaced it with a shower curtain. I cut a small hole in the shower curtain through which I passed the trilogy's hose and mouthpiece so that I could continue receiving respiratory support while showering, for however long the shower took. I kept the trilogy outside the shower on a shelf about 4 feet above the ground to avoid its contact with water. If you don't have a shelf close by you can use a Mayo stand that can be purchased on Amazon. I also use the trilogy while on the toilet otherwise I would quickly get short of breath. I find that there are often practical solutions for solving a lot of annoying and difficult problems when dealing with ALS.

Best wishes

Eliot

 

[Aussiemndcarer]

Hello Deb,
After reading your posts this morning I just can't stop thinking of you and Steve. Please,please, I do hope that you somehow are making your way through the maze that is this disease. My Jim was told very early on that he wouldn't get to the stage of needing a peg. Now,the chance to prolong our precious life has gone. Jim's breathing has only been measured twice and last time the respiratory specialist said that it would be too traumatic to test. We started at below 50%. We have managed with very little air for a long time now, and trachs aren't done routinely here in Australia. This week , it became more essential to use vpap machine in the shower too. It has been only the last two months that we have had to really purée most foods,and nutrition is our biggest concern now. We really regret that we didn't follow our instinct and request one just in case. Instead we took the advice of our neurologist. ( we think she's amazing really.she just made a wrong call on this issue)
I send hugs and much strength your way as you find your way through the ALS maze!

 

[scaredwifetx]

Ahh...thank you Aussiemndcarer. I am so sad reading your post. Its just more proof that we are never ahead of this disease. We hve decided to try and get a rig. We have clinic in in two weeks and will get a referral there. I am going to be out of town this week for work so let Steve has the week as a break to think about it. His progression with his legs, breathing and overall health has been on an incline the past couple of weeks and it has been stressing us both out.

We hope to get in for the peg within the next month. My biggest fear for the time being is leaving Steve for a week. His brother is here with him but I still worry. Thanks for the hug. Hugs right back at you!