Personal Stories: Mike O'Connor Knox

Michael OíConnor/Knox, my fiancť of 13 years, was diagnosed with a Type B Descending Aortic Dissection 2 years ago on August 3, 2006. He was 52 at the time and had a history of high blood pressure. His mother and her twin sister both had aneurisms in the brain and had stents put in when it was still a new procedure. My ex husband had high blood pressure so I knew a little about it and I had finally convinced Michael to go to the VA here in San Diego to get his blood pressure under control. We also requested and had an MRI done to check his brain for any aneurisms a few months before the dissection. We had no idea that the aorta can also become aneurismal.

Michael kept his blood pressure in check for a while and then got lax and forgot to refill his blood pressure meds. I told him we could go to the pharmacy and they would give him some until he could get the refill but he was stubborn and didnít listen. Instead he started taking his daily pill every other day since he was so low. He had been out running some errands that day and when he returned home he told me he had a really bad pain between his shoulder blades and I needed to take him to the ER. Due to a bad experience at the hospital closest to us, he wanted me to take him to VA 20 minutes from our Home. I knew the ambulance wouldnít take him there and didnít have time to argue with him so I got some of the neighbors to help me get him in our car and I drove him to the VA. I pulled up to ambulance doors and lied saying he was having a heart attack because I knew they would see him immediately. While I parked the car they did a CT scan on him and had the diagnoses within 20 minutes, the time it took me to park the car and walk to the ER. They told me his blood pressure was 200/110 and he had a dissecting aorta and that the next 24 hours would be critical to get his family there and his things in order.

I thank God every day that I took him there, the Dr. on duty (whose name I didnít get) in the ER had just been to a class and knew what to look for. They gave him Morphine for the pain and told me he would be admitted to the ICU and only time would time would tell if he was going to make it. If he did survived it could be controlled with medicine and they wouldnít have to do surgery. I got him settled and went home to our 12 year old son who had stayed with a neighbor. I called the rest of the family to let them know what had happened and started praying and doing some research. I didnít have the internet at home and had to research on my breaks at work. That is when I found this site and wanted to eventually add our personal story so that it might help others. I just got internet at home this week I've been busy to say the least.

He was in ICU for two week until they got his blood pressure stabilized then another week in the step down unit and then home. The nurses were great and got his blood pressure down to the 120/80. He takes 16 pills a day, not including his pain medication and potassium and, to keep it there but he is alive. He is taking Clonidine, Felodipine Diltiazem, Lisinopril,(no longer takes due to high Kriatin levels in kidneys) Furosemide, (for Edema and Hypertension) replaced with Bumetanide and Spironolactone. He also takes Metoprolol (a beta blocker) Baclofen, Amiripline,(for back pain). Omerazole,(for stomach ulcers) a stool softener and Simvastatin (for cholesterol). I got 2 weekly pill organizers so he only has to worry about one container 4 times a day and I only have to do it every 2 weeks. The VA here is great they are affiliated with UCSD Medical School so he had a team of Doctors and interns and some great nurses. All the Doctors were just amazed that he had survived and that the tear had only gone through the first layer and, as we found out just this year, was torn from the aortic arch to his groin area 23 inches. Of course he was terrified all he heard was there is nothing we can do go home and spend time with your family. I heard itís not bad enough and we wonít fix it until we have to. I made them draw me a picture and then I drew him one.

Right after he got home he had an abscessed tooth that had to be pulled and a boil under his left arm that had to be lanced. We have been doing the scans every 6 months and have seen the surgeons 3 times so far. The first surgeon told us thereís good news bad news. The good news is itís not bad enough to do surgery and the bad news is we will see you in 6 months. They did an intravenous test a nuclear die and put him over a Geiger counter to make sure there was no blockage to the kidneys. Then we saw a Kidney specialist because his Kriatin levels were high. There was no blockage so I asked the Doctor if it could be due to something he ate like shell fish and he said yes and no. It wasnít something he ate but it could be one of the pills he takes that ends in ďprilĒ. I told him he takes Lisinopril every day and we had to wait for his primary doctor to tell him to stop taking it and since then his levels have been normal. We saw different surgeon at the one year check and we learned more from him than all the rest put together. Michael also requested to see a counselor and it helped a lot for him to get ok with it. They weren't use to someone requesting help and had to set up a hole new category for him who had too much support unlike all their other patients.

Michael got pneumonia this last July and was in the hospital for a week. Then his weight went way up and the Edema got bad and his already swollen feet and legs got worse and were actually weeping from some old wounds. It moved up his body and from sitting his groin swelled to 4 times the normal size. The Doctor admitted him again for 3 days to get the water weight off. His potassium levels were also extremely low and so they changed some of his water pills and he has to take 8 potassium pills a day now. He lost 25 lbs, from 345 to 325 but it is really hard for him to get any exercise when his feet are so swollen that it hurts to walk and he canít wear any shoes. His primary doctor increased one of his water pills and forgot to tell the pharmacy and just when all the swelling was finally starting to go away he ran out of pills and we were without for 2 weeks and the water weight is just now starting to go down again. Then a few weeks later he fell down the stairs here at home and I took him to the ER and they did his annual scan that day since he was there in the ER he got moved to the front of the line.

Then we were scheduled to see the heart and lung surgeons again and this time they said they wanted to do surgery because his aneurism had grown I asked them if it had become an aneurism (in my mind it wasnít that far yet) and he said it was only aneurismal. He said it had gone from 5.3 to 5.6 and they wanted to do surgery before it became an aneurism and that he needed to lose weight before the surgery. I asked them if the cough from the pneumonia could have made it larger and they said no. One doctor (intern) gave us the scare you to death version, you could become paralyzed because of the blood supply to the back or die from other complications. The other doctor came and he had a better bed side manner and said that it was only a 3% chance of paralysis and they would have to get together with the other doctors for the complicated part in the middle which made us feel a little bit better. They requested and did another full scan at our request instead of doing two, one upper and one lower with contras, and then we scheduled another appointment. Now they said that it hadnít changed and they would not do surgery yet, see you in 6 months. I asked him what the size was and he said they didnít put it in the report only that it hadnít changed. Back on hold again but it could be worse.

Sorry to go on but I think it is important and this might help others to know you are not alone out there in your frustration. We have tried to be vigilant and one or two of us goes with him to every one of his Doctors appointments and we ask lots of questions. I would like to thank you Brian for being an angel in my time of need. Michael was diagnosed with Sever Sleep Apnea. That means no recuperative sleep to heal. He now sleeps with a CPAP machine and he feels it has help him a lot

Mike and Juli

 


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