Got bad news today re: DH

[Chock_Full_o__N]

This is going to be long, so if you're not interested you can move on. I don't have any real life friends that I can talk to. I don't want to post it on Facebook either, because it's a pretty sensitive thing right now. DH and I are pretty upset.

As you may know, DH has severe lung disease (stage 4 sarcoidosis) and controlled congestive heart failure. He has developed two serious infections in his lungs, Mycobacterium Avium Complex (MAC), which is like TB but not contagious between people, and Nocardia, a very serious infection that is hard to treat. He has been steadily declining since January, when he started treatment for the Nocardia. Presently, there is no improvement. In fact, he's going backwards.

DH has been having episodes of extreme shortness of breath and fatigue. It happens whenever he does any sort of exertion, like carrying laundry upstairs or carrying baskets of food or clothing to the camper. I thought I was going to have to call 911 on a recent camping trip when he & I took the motorcycle off the back of the truck--this only entails backing the bike down the ramp. It scared the starch out of me! His breathing recovered within 10 min, but he was completely wiped out. The camping trip was much more difficult than it ever has been and at this point we have decided to take a break from towing. DH has no stamina whatsoever.

At this point, DH is only able to ride the motorcycle sporadically, when he's having a real good day. He's having a lot of not good days and sometimes he naps 2-3 times or will nap from 10am-4pm, get up for dinner and then go back to bed at 9pm. He's had a recent CT scan and an echocardiogram.

Today was Doctor Day, almost 4 hours total. We saw the pulmonologist this a.m. and found out DHs lung function is only 23%, down 15 points from Dec. The last time it was this low, he was in septic shock. Then we went to the cardiologist this afternoon. DH has had mild-moderate mitral valve prolapse. The echo revealed that it is now quite severe and needs heart surgery. The big question is, can he even survive it? If he survives the surgery, can they get him off the vent? It is a very serious surgery with lots of risks, even for a relatively healthy person. DHs health is very complicated and poor.

We have an appt next week with a heart surgeon. We will also get a second opinion. The pulmonologist will need to confer with the surgeon(s) to see what can be done. If they do not believe he can undergo surgery, then there's nothing much they can do. He's already on the drugs that are used for severe valve disease. He already has congestive heart failure and that will only worsen without surgery. The cardiologist was very kind, but he is not hopeful.

We don't need anything. Nothing much in our daily lives will change. Obviously, DH and I are having some serious, ongoing conversations. At this moment our June 6 Alaska cruise is still on and hopefully, if surgery is approved, perhaps it can be delayed a few months. If not, we may need to cancel that. We have trip insurance, as always.

Anyway...DH told DS27 today. He's upset, of course. DS is currently mired in a severe depression, for which he will not seek treatment. He's drinking a lot, too. We'll probably see DD20 this weekend and tell her in person. I hate to burden her. She's working full-time and going to school part-time. But I don't think this can wait a month until the semester ends. I feel like our lives are upended at the moment but I'm sure we will get used to a new normal. Just keep us on your prayer lists, please. That's really all we need.
__________________

[noe-place]

My prayer group is large. If there truly is power in prayer, and I know there is, words to the Great Physician are already going up.

[PennyPA]

Chock, I do have a question. You said Kitt's pulmonary numbers were at 23% which I'm assuming is his FEV1. Has his pulmonary doctor or any other doctor suggested he should be on supplemental O2 at this point?? Maybe I missed it in another thread but I didn't see you mention that he's on O2. And if he's not, I'm extremely surprised his pulmo doc gave him the go ahead to fly!!

[Uppercrust]

Your in my prayers.

[camper19709]

Your entire family is in my thoughts and prayers.

[Chock_Full_o__N]

Irover wrote:
Chock: I had to respond as being diagnosed with CHF; Ischemia; Cardiomyopathy; Angina and COPD; I can relate. Had a severe STEMI HA in March 2012; got three stents and another blockage opened; the arteries were 95+ to 85% blocked. Dealing with this chnge in my lifestyle has been difficult and had to make many changes of which some still upset me. The greatest help I found was to remain positive; even in ICU I was told by my Cardio Dr that really helped pull me through. Oh and How I prayed to God and asked for Him to guide the Drs. hands while he was placing those stents. I also believe the children should be made aware; my daughter was upset that I did not call until after I recovered for a few days in the ICU. She was in another state as I was work camping when this happened.
I will pray for you as well as your husband. The CC does perform some great medical miracles as I heard how their people are more concerned with your health than they are about Monies. In my thoughts and prayers!!! Irover

Thank you. Yes,we are also believers and we're keeping the faith. We don't dwell on the negatives. DH has such a great attitude, even though his shortness of breath and fatigue are getting worse. CC called yesterday and requested his most recent CT of his lungs. We overnighted the CD to them and they got it this morning. I'm really hoping they can look at his chart this week or next. We just need to have some answers even if it's "We don't think you are a candidate for surgery." We have shared some of this with the kids but they don't really understand it. They're in their 20s and really haven't had any experience with death other than a grandfather 10 years ago when they were in elementary and middle school.

On a bright note, the pulmonologist has cleared DH to fly. We just need to get cardiology to clear him and we'll be on our way to Alaska in June. We are both prepared(as best we can be) for the possibility that DH could worsen or even die on this trip. It would be tragic but we have travel insurance that would pay to send his body back home.

We're getting affairs in order but we're also doing the things we love to do, like being in the choir (DH often fakes it when he gets too short of breath) and going camping. We left our camper at our favorite campground in the North Georgia mountains last weekend and are looking forward to making frequent weekend visits. Much easier on him that loading the camper and towing. The next thing we need to do is go home to visit our mothers; that will definitely happen before any surgery or trip to Alaska. You just never know how things will go.

[Irover]

Sorry about the double-post!!!Chock: I had to respond as being diagnosed with CHF; Ischemia; Cardiomyopathy; Angina and COPD; I can relate. Had a severe STEMI HA in March 2012; got three stents and another blockage opened; the arteries were 95+ to 85% blocked. Dealing with this chnge in my lifestyle has been difficult and had to make many changes of which some still upset me. The greatest help I found was to remain positive; even in ICU I was told by my Cardio Dr that really helped pull me through. Oh and How I prayed to God and asked for Him to guide the Drs. hands while he was placing those stents. I also believe the children should be made aware; my daughter was upset that I did not call until after I recovered for a few days in the ICU. She was in another state as I was work camping when this happened.
I will pray for you as well as your husband. The CC does perform some great medical miracles as I heard how their people are more concerned with your health than they are about Monies. In my thoughts and prayers!!! Irover

[Irover]

Chock: I had to respond as being diagnosed with CHF; Ischemia; Cardiomyopathy; Angina and COPD; I can relate. Had a severe STEMI HA in March 2012; got three stents and another blockage opened; the arteries were 95+ to 85% blocked. Dealing with this chnge in my lifestyle has been difficult and had to make many changes of which some still upset me. The greatest help I found was to remain positive; even in ICU I was told by my Cardio Dr that really helped pull me through. Oh and How I prayed to God and asked for Him to guide the Drs. hands while he was placing those stents. I also believe the children should be made aware; my daughter was upset that I did not call until after I recovered for a few days in the ICU. She was in another state as I was work camping when this happened.
I will pray for you as well as your husband. The CC does perform some great medical miracles as I heard how their people are more concerned with your health than they are about Monies. In my thoughts and prayers!!! Irover

[Chock_Full_o__N]

wannavolunteerFT wrote:
Chock, praying for you and Kitt. You really impress me with your strength and resilience in dealing with all that you have been dealt over the years. I hope getting your TT set up seasonal will allow you a chance to enjoy. I will be in your area in a little over a month. I will PM just before to see how you are and if you are up to getting together for a bit.

That would be great.

[wannavolunteerF]

Chock, praying for you and Kitt. You really impress me with your strength and resilience in dealing with all that you have been dealt over the years. I hope getting your TT set up seasonal will allow you a chance to enjoy. I will be in your area in a little over a month. I will PM just before to see how you are and if you are up to getting together for a bit.

[Merrykalia]

I will agree with going to Alaska.

I had always wanted to go, so DH and I went for our 25th anniversary. It was expensive and we did everything we could do from salmon fishing, white water rafting, as well as horse back riding in Denali NP.

While rafting on the Mendenhall Glacier River, there was a woman who had terminal cancer. She sat in the middle with her DH on one side and me on the other. (They asked prior if I would be comfortable with her between us). She had such a marvelous time and after the ride, she confided that this was one of her last wishes, to go white water rafting. She said the docs had given her 3-6 months and that had been 2 months ago. She was trying to finish off her bucket list before she went on hospice, but they were heading to Hawaii for 2 weeks and then home.

I agree with rexlion about finding a minister or hospice counselor that can help you through this time and give both of you comfort and reassurance.

If Cleveland Clinic can get him in, please go and see what they can do for him. There have been miracles performed there daily (as well as other places) and your DH might just be one of them.

Praying for you both, as well as your family.

[TOOBOLD]

I'm so sorry your having to go through this. If he wants to go to Alaska then go! It will be memories of a lifetime. We went through this last year with my dad. There is not a day that goes by that mom doesn't talk about their last trip.


Sending prayers and strength your way.

[rexlion]

I'm sorry for you and your family, for this is truly an emotionally difficult time. Grief is normal and understandable, and I hope you will find a minister or someone in your area who has some training in helping people with their times of grief.

In this fallen world, we all have a terminal condition. It can be downright scary to think of soon being without the one you love, and for him it may be scary because of not knowing how much discomfort he may have to deal with in the interim. The minister can help you and your family sort through your emotions, and your medical professionals can reassure him about what they can do to keep him in relative comfort. Know that people are praying for you, though. And know that you have the blessed hope of seeing one another again in a place without pain or tears.

My wife has dreams and visions sometimes. A man in our church, a friend of ours, had a serious heart condition (disabling) and one day he passed on. His wife knew it could happen at any time, yet it still grieved her of course to be without him. A couple of weeks went by, and my wife had a dream in which she was in heaven and saw the man there, happily building a house... something he had longed to do but could not do here. He was smiling and laughing with others all around, working together. The strangest thing, my wife says, was that his long, heavy beard (the only way we had ever seen him) was gone and yet my wife recognized him right off! DW told his widow all about what she saw, described everything, and she was greatly comforted. It eased her mind knowing he was so happy and joyful.

Be at peace. All will be well, eventually. And having advance notice does hold some advantages... time to set things in order.

[MeandMyLabs]

As many others have posted...prayers are with you and your family.

I have some first hand experience with the pulmonary side of things as I had to be revived from certain death twice in 2013. I would strongly suggest that you be sure the pulmonologist and cardiologist are on the same page. Pulmonary care and a proper prognosis are not always as conclusive as we would like them to be. I switched doctors numerous times during the course of 9 years before I finally stumbled upon a doctor who could diagnose the situation properly. He did not have the complete answer to my care but together with 3 other doctors and a dietician, we have a plan that is working.

Situations as you describe can be extremely taxing on each family member in different ways. Our family sure experienced it and I would very strongly suggest getting some spiritual guidance for additional help. A situation like this can be much larger than any one person can bear. You are doing the right thing with speaking your thoughts.

Please understand that you are not alone. Not only have others had similar experiences but most people are caring and understanding and are very willing to help.

My most sincere thoughts and prayers are with you and your family throughout this most difficult time.

[Chock_Full_o__N]

Update--
It's not good news. The surgeon advises against surgery because DH is such a high risk. He thinks DH may not be able to get off the ventilator and will be high risk for pneumonia and sepsis. We are discussing what to do, but it appears that surgery would not improve his quality of life and indeed, could make it much, much worse.

It's pretty sad around here tonight. I can hear both of us deep-sighing from time to time. We're telling our families tonight. We're going to wait on telling the kids much until after DD21 gets done with finals in 3 weeks. I'm worried about telling DS27 because he is already in a deep depression (he has bipolar disorder, unmedicated--yeah...such fun...)

We're still going to submit his records to the Cleveland Clinic and let the chips fall where they may. If they say the same thing, then it's a done deal. DH says he still wants to go to Alaska this summer, if he can get clearance to fly. At this point it's all about quality of life,I think.