Help

LuluW

I’m my husband’s caregiver and I’m alone in this journey. It’s been hell since October. He always hard mitro valve regurgitation for the past 12 years. In October he went into congestive heart failure. We met with surgeon and all was good he could do it the next day if we wanted but we found out he was going out of country for 3 weeks so we decided to wait because he said it was okay. Plus one test didn’t come back yet since we had just completed it that morning. The next morning we got a call and the bottom feel out from under us. It showed a large mass on the kidney. They referred us to a kidney surgeon and once we saw the images we knew he had tot take the kidney. He said in two weeks he can do it laparoscopically. Perfect. After we got another test it showed it spread outside to the vena cava which meant stage 3. My husband had it removed quicker because the kidney lost all blood flow and they had to take it before it went septic. He was happy thinking all was good, he actually thought he was cured. But it metastasized and it went just past into the small veins and then by chance they found new spots on the lung. He now had stage 4. The heart surgeon returned from vacation and the surgery was scheduled in 6 weeks. We met with oncology and pulmonology. They wanted to proceed but since the heart surgeon wanted to do it via da Vinci machine he wanted to wait. I had to make so many phone calls every other day we the other two drs till Finally the heart surgeon agreed to move it up and put a clip in versus a full repair. It’s not the best but his regurgitation was severely reduced to minimal. We started immunotherapy using Katruda and Lenvima. We just finished 3 weeks. The oncologist reduced the Lenvima after one week because he felt it was too strong because his BP spiked. His heart still hasn’t adjusted because it takes months. We’ve increased BP meds and take Lasix which interferes with his only good kidney. The God sent is his kidney functions are normal. Through this he’s lost almost 20 lbs. My daughter is in denial and I have an 86 old father who I also help. None of my neighbors understand that he has to be monitored closely and I kinda have to tag along since his BP can bottom out till they find the right dosage. They want to take him golfing but he has little energy and now has just started to walk 10 minutes a day which is about a 1/4 mile. They say I control too much. He has brain fog, has fallen twice and uses a walker here and there. Yet I’m the delusional one. I’m afraid to leave the house even for my Dr appointments which I e rescheduled so many times. All of our doctors are two hrs away. I’m stressed beyond measure and my hair is thinning out. How does one get help.

ForestAria

I don’t know how you get help as a caregiver. I just wanted to say I have a similar experience with stage 3 kidney cancer from it being in the vena cava then right after the surgery (open right radical nephrectomy not laparoscopy) they did a pet scan and found it had reached my lungs but I had no chemo until 4 years later when I decided to go to a proper hospital where there were better doctors and they tried two biopsies but couldn’t get a sample but proceeded with chemo and it had good results slowly but surely. Had 4 years of chemotherapy so far. Just went off chemo for a month because of inflamed intestines. Off half my other meds too. Feeling a little better almost a week later. Worried about cancer growth while pausing chemotherapy because last time this happened I lost a lot of ground. I’m sorry caregiving can be so difficult. My husband is my caregiver. I really appreciate all his efforts on my behalf. I just wanted to tell you that I appreciate your efforts in support of your husband and you are his angel in disguise. I know you are stretched and I care. My husband is working two jobs and is caregiver to me nights and on his one day off every other Sunday and half Saturday. I’m muddling through the rest of the time on my own. I wish you had more help. I hired someone temporarily through a website for caregivers but I can’t remember the name of it. Sorry I can’t be more helpful.

Deanie0916

Hi, so sorry you both are going through this. You might ask if there are resources at your hospital for respite caregiver or information about respite caregiving. Even if it's just a short time I'm sure you can use a break. Prayers.

donna_lee

Wowee- From a distance, it is hard to make suggestions for care help, without knowing where you are-on the map. A facility that treats cancer and heart patients should have someone on staff who can help find outpatient care. That can include volunteer support groups, in-home out-based nursing visits, or even meals on wheels.

So sorry you both are having such a rough time. All I can say is good luck and make an effort to take time for yourself….before you crap out or go crazy. The patient is ill, but try to find something they can do for themselves that can lessen your burden. The neighbors really don't understand YOUR need to monitor what hubby is doing. If you need someone for an hour of even half a day, be force-full in your request to help. Or do you a have a church group or club you belong to that can help.

Unless you live on a farm in the middle of nowhere, there has to be a community nearby. Check what they have.

All best wishes to both and keep on going. Hugs, Donna