Dad is dying & no reason why-Tests not "alarming"

Posted by lanaeg @lanaeg, Nov 3 1:55pm

My dad has been deteriorating rapidly to the point he can barely walk, almost no voice, Extreme weightloss, tremors, slow mind, swollen feet/ankles but in July we each drove 14hrs to and back on vacation. Tests, imaging, diagnostic tools show nothing of significance. He has COPD, but not severe, had tarry stools and found 2 ulcers, not big enough to cause this, has denture pain for a year which caused depression but doctors say this can't be the result of that (even though depression can be horrid). PT, CT scans fine, EKG, bloodless, xray seemingly non-alarming. Has seen specialists and tried different medications. Still deteriorating, lost all muscle, zero strength, tired, and all we can do is sit with him and keep asking for more tests and ask more questions. The worst is that he knows he's dying, but No One knows why. Can't tell us anything therefore can't treat anything. It's the worst feeling to know someone is suffering so much and there's no reason. His doctor has suggested we drive him to MAYO and sit and wait for an appt. Anyone have experience with this? What are they missing?

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

seniormed | @seniormed | Nov 4 6:49am

There are some uncommon viral disease tests that are
only performed by state public health labs or referral and sent out to the CDC. We have some new tropical viruses that are carried by mosquitoes.
Ask the infectious disease group if your dad has been screened for tropical viruses.

miloandlisa | @miloandlisa | Nov 4 7:59am

Have you had a second opinion from a different dentist? Could be some type of infection.

lanaeg | @lanaeg | Nov 4 8:25am

In reply to @miloandlisa "Have you had a second opinion from a different dentist? Could be some type of infection." + (show)

Hello. Yes, this is the 2nd opinion dentist.

Laurie, Volunteer Mentor | @roch | Nov 4 3:19pm

@lanaeg

Want to check in with you to see if your mom or someone called about being seen at another medical facility to get another opinion?

lanaeg | @lanaeg | Nov 4 4:38pm

In reply to @roch "@lanaeg Want to check in with you to see if your mom or someone called about..." + (show)

We spoke with MAYO clinic today. They are emailing forms and we are filling them out and submitting tomorrow after we pick up his medical records. He also has a Rheumatology appt tomorrow (which I kind of forgot about) and we also spoke to his GI and found out they DID take a biopsy of his stomach weeks ago at the hospital, but we never heard anything. So they are finding it...I'm assuming it wasn't bad since no one said anything. MAYO said they would contact us again in 5 to 7 days.

lanaeg | @lanaeg | 2 days ago

In reply to @colleenyoung "@lanaeg, time to appointment differs depending on the urgency of the request and the availability of..." + (show)

I'm not sure if the email my dad received meant he was being accepted as a patient, but it was an invitation to create an online patient account. The horrible part is my dad had a long day Tuesday and to be short and I can get through it, he ended up in the ER with 86% O2 and his heart suddenly stopped the next night. They did CPR and got a pulse bits he's been in ICU since Wednesday evening and tomorrow they are pushing us to take him off the vent. We are all broken. They are saying his heart is healthy but he had mini strokes in the frontal lobe and "isn't really there"....its been the worst thing we have ever been through especially bc his eyes are open, they move, his legs lift, he yawns but they said his tests show brain slowing. He didn't deserve to be overlooked and brushed aside like he did.

Laurie, Volunteer Mentor | @roch | 1 day ago

In reply to @lanaeg "I'm not sure if the email my dad received meant he was being accepted as a..." + (show)

@lanaeg
I am so sorry this is happening to your dad and entire family. I went through something similar with my dad. He was unresponsive and in ICU and we had to make the tough decision about life support. They ran lot of test and kept him alive. Then a neurologist spoke to my mom and me about situation. In his situation, they said he had no brain activity and no chance of recovery. I did not feel pressure to make a decision immediately, but my mom made decision about life support the same day and family agreed. We all had our chance to say good-bye and priest came to give last rights. My dad was Catholic and religious.

If hospital has a pastor available or social worker on staff, maybe they can help you in this situation.

You sound like a very caring daughter, and this is rough situation. My prayers are with you.

lanaeg | @lanaeg | 2 hours ago

In reply to @roch "@lanaeg I am so sorry this is happening to your dad and entire family. I went..." + (show)

Thank you. We contacted the pastor of our 'old' church and he came in. My dad passed away today with my mom, myself, siblings and all the grandkids and great-grandkids by his side. I've never experienced such a nightmare and wouldn't wish his situation on anyone. I have to believe he was "gone" when his heart stopped bc to think he could maybe even hear us while being the way he was is unbearable. To make it all worse, as though it could be, of course, his heart was healthy, lungs cleared up, can't find a reason so they're just going with his heart got "out of rhythm". All the doctor seemed stunned and concerned that common sense said he was a sick man, but every doctor before this stay would just always say, "medically, he's healthy," I wish I had gotten the MAYO forms earlier and if his doctor would have done it instead of giving us the advice of just "driving up", maybe the outcome could have been different. I'm just sick.