We went to see JET's cardiologist at the VA yesterday who was very thorough and scheduled him for a cardiac cath on the 27th of this month. They will go up his veins and check for blockages and if they can stent them there and then they will. If not he may end up having by pass surgery but we are hopeful they can fix it with more stents. (He already has four).
We are hoping this will stop the night time shaking episodes which his neurologist is convinced is lack of oxygen to the brain causing syncope. If his arteries are unblocked then the blood flow to his brain should be better.
If it doesn't help then it means the shaking episodes are the progression of his auto immune disease which isn't so good.
We are grateful that they are going to do the cardiac cath in less than two weeks.
Thursday, February 16, 2017
Friday, February 3, 2017
A helicopter ride for my husband!
Well my husband had his first helicopter ride early Monday morning. Not what he really needed though as it was a life Flight from our local hospital to Columbia.
This will be a long post as I need to record it all.
Sunday evening he had many of his shaking episodes one after the other then he started sweating and didn't feel good at all. I decided to call an ambulance. They showed up and the decision was made to take him to the hospital in Clinton 35 miles away. They took him in the ambulance then I let the dogs out to potty then went to the hospital in the van.
They did an CT scan there and blood tests etc. It was decided to put him on a stroke protocol as something showed up on the CT scan and he had weakness in his right side and couldn't form words properly. They called the VA hospital in Columbia to arrange to get him admitted but the VA hospital was on 'diversion' as they were full. Someone, not sure if it was VA or not, said to take him to MU University hospital which is opposite the VA hospital and he is a patient there too. I was happy to drive him there but the local hospital said they would not allow that and they would Life Flight him there. Oh my! The helicopter medics came in rolled him onto a very thin stretcher and carried him out to the waiting helicopter.
This was about 6.30am Monday morning. I drove home in a bit of a daze. I called his son and also his VA neurologist who had given us his cell number in case of emergencies. It is fortunate that he works at both hospitals so was able to have input into his care and testing.
It was decided to monitor him on a 24 hour EEG to catch the shaking spells and ascertain if they were seizures or not. This was then extended to 48 hours. They captured 4 of them but they were not seizures they said. (That is a good thing).
The stroke protocol was removed. Cardiology got involved and they said he had had a mini stroke. This was disputed by the neurologists. So then it was not a stroke and then it was maybe a stroke. Cardiology added a new medication and neurology decided it was all down to his Myasthenia Gravis and he had had a Myasthenia crisis. He was released about 4.15pm Wednesday afternoon. They had sent his prescription to the VA electronically they told us so we could pick it up there. We went to the VA who were really short handed in the pharmacy and they told us they don't accept electronic scripts and to call MU hospital next day and ask them to fax the script in then they would mail it. This meant he wouldn't get it for at least a week. I called the MU hospital there and then and spoke to the nurse who had been totally awesome while my husband was in there. He told me it would be faxed within 10 minutes......and it was. He is an amazingly good Nurse.
So after 6pm we got the new medication and set off home.
We got home totally exhausted and crashed. It was good to get back into our own bed. His episodes continued through the night. The neurologists had put this all down to a Myasthenia crisis, which in itself is not good. The last one of those landed him in hospital for a week and he had 5 plasmatheresis treatments.
(I expect I will be adding to this as I think of things.)
We are in a fight with the VA to cover the costs of this as they couldn't take him in. They have not agreed to this yet. He does have Medicare but not the supplementary insurance as he had pre existing conditions. We didn't have Life Flight insurance either so not sure if Medicare or the VA will cover that. It was not our request that he be Life Flighted, it was at their insistence.
So lots of things to deal with now but at least, for now, he is home although he is not feeling very good at all.
Appointment with his VA cardiologist on the 15th and his VA neurologist on the 20 something of February.
I did sign up for Life Flight Insurance for us both after that so we will be covered on that score for the next year if anything else happens.
So a very stressful week for us both.
This will be a long post as I need to record it all.
Sunday evening he had many of his shaking episodes one after the other then he started sweating and didn't feel good at all. I decided to call an ambulance. They showed up and the decision was made to take him to the hospital in Clinton 35 miles away. They took him in the ambulance then I let the dogs out to potty then went to the hospital in the van.
They did an CT scan there and blood tests etc. It was decided to put him on a stroke protocol as something showed up on the CT scan and he had weakness in his right side and couldn't form words properly. They called the VA hospital in Columbia to arrange to get him admitted but the VA hospital was on 'diversion' as they were full. Someone, not sure if it was VA or not, said to take him to MU University hospital which is opposite the VA hospital and he is a patient there too. I was happy to drive him there but the local hospital said they would not allow that and they would Life Flight him there. Oh my! The helicopter medics came in rolled him onto a very thin stretcher and carried him out to the waiting helicopter.
This was about 6.30am Monday morning. I drove home in a bit of a daze. I called his son and also his VA neurologist who had given us his cell number in case of emergencies. It is fortunate that he works at both hospitals so was able to have input into his care and testing.
It was decided to monitor him on a 24 hour EEG to catch the shaking spells and ascertain if they were seizures or not. This was then extended to 48 hours. They captured 4 of them but they were not seizures they said. (That is a good thing).
The stroke protocol was removed. Cardiology got involved and they said he had had a mini stroke. This was disputed by the neurologists. So then it was not a stroke and then it was maybe a stroke. Cardiology added a new medication and neurology decided it was all down to his Myasthenia Gravis and he had had a Myasthenia crisis. He was released about 4.15pm Wednesday afternoon. They had sent his prescription to the VA electronically they told us so we could pick it up there. We went to the VA who were really short handed in the pharmacy and they told us they don't accept electronic scripts and to call MU hospital next day and ask them to fax the script in then they would mail it. This meant he wouldn't get it for at least a week. I called the MU hospital there and then and spoke to the nurse who had been totally awesome while my husband was in there. He told me it would be faxed within 10 minutes......and it was. He is an amazingly good Nurse.
So after 6pm we got the new medication and set off home.
We got home totally exhausted and crashed. It was good to get back into our own bed. His episodes continued through the night. The neurologists had put this all down to a Myasthenia crisis, which in itself is not good. The last one of those landed him in hospital for a week and he had 5 plasmatheresis treatments.
(I expect I will be adding to this as I think of things.)
We are in a fight with the VA to cover the costs of this as they couldn't take him in. They have not agreed to this yet. He does have Medicare but not the supplementary insurance as he had pre existing conditions. We didn't have Life Flight insurance either so not sure if Medicare or the VA will cover that. It was not our request that he be Life Flighted, it was at their insistence.
So lots of things to deal with now but at least, for now, he is home although he is not feeling very good at all.
Appointment with his VA cardiologist on the 15th and his VA neurologist on the 20 something of February.
I did sign up for Life Flight Insurance for us both after that so we will be covered on that score for the next year if anything else happens.
So a very stressful week for us both.
Friday, January 27, 2017
My husband had the stress test yesterday and........
We went to Columbia Wednesday afternoon and stayed overnight so we could be at the hospital at 8am with no problems. The drive from here to there is 3 hours so it would have meant setting off at 4am which is way too early for us and I don't like driving in the dark. I tried to book our usual hotel but it has gone out of business so we tried a La Quinta. It was OK and reasonably priced but not a good as our other hotel albeit the room was a lot bigger.
The test lasts about three and a half hours with breaks in between and was quite uncomfortable for my husband. When he came out we just headed straight home so I could pick up the dogs from the vets boarding kennels. Just as well as they have upped their price from $12 per dog per night to $15.
We had no sooner got in and the phone rang and it was his primary care physician notifying us there was a problem. The test indicated reduced blood flow to the heart which indicated more blockages. This is what we suspected so it was not a surprise. This time though the symptoms are much worse and he is having frightening episodes at night which his neurologist thinks is caused by lack of oxygen to the brain which correlates with this.
We now have to wait till February 15th when he sees his cardiologist to see what is next. I suspect they will do a cardiac cath next to see where the blockages are so that means more waiting as the cardiologist will have to schedule it.
I am worried, this seems to be dragging on too long.
The test lasts about three and a half hours with breaks in between and was quite uncomfortable for my husband. When he came out we just headed straight home so I could pick up the dogs from the vets boarding kennels. Just as well as they have upped their price from $12 per dog per night to $15.
We had no sooner got in and the phone rang and it was his primary care physician notifying us there was a problem. The test indicated reduced blood flow to the heart which indicated more blockages. This is what we suspected so it was not a surprise. This time though the symptoms are much worse and he is having frightening episodes at night which his neurologist thinks is caused by lack of oxygen to the brain which correlates with this.
We now have to wait till February 15th when he sees his cardiologist to see what is next. I suspect they will do a cardiac cath next to see where the blockages are so that means more waiting as the cardiologist will have to schedule it.
I am worried, this seems to be dragging on too long.
Sunday, January 22, 2017
Not the greatest start to a year!
My husband is quite poorly. We have lived with his neurological problems for a long while but he isn't doing too well at all right now. His neurologist is worried that his heart is not functioning right and we are waiting to hear from his cardiologist about what happens next. He already has four stents fitted and it looks like he has other blockages now so either more stents or a by pass and possibly a pacemaker as his heart rate is really slow. He isn't doing much at all, he is either at his computer, watching TV or in bed. He has been having 'episodes' when sleeping which his neurologist believes are syncope (feinting) convulsions. They are quite frightening for us both.
I had a bad stomach flu, as did half of the nation, at the beginning of the year which took it out of me a lot. I am recovered fully from that thank goodness. My husband didn't catch it even though his immune system is compromised from the chemo and immuno suppressants he takes. We thought this was good until his neurologist told us that people with compromised immune systems do not usually show symptoms, they just drop dead. He is very blunt sometimes.
My husband had such a good summer and was able to work on the camper conversion to a hunting blind but then he deteriorated quite quickly and hardly got any hunting in. Such a shame after all his (and my) hard work.
January is usually a bit of a blah month for us because of the weather but for now it doesn't look like there is going to be a lot going on in the future either. Really hoping they can sort out these heart problems for him.
I had a bad stomach flu, as did half of the nation, at the beginning of the year which took it out of me a lot. I am recovered fully from that thank goodness. My husband didn't catch it even though his immune system is compromised from the chemo and immuno suppressants he takes. We thought this was good until his neurologist told us that people with compromised immune systems do not usually show symptoms, they just drop dead. He is very blunt sometimes.
My husband had such a good summer and was able to work on the camper conversion to a hunting blind but then he deteriorated quite quickly and hardly got any hunting in. Such a shame after all his (and my) hard work.
January is usually a bit of a blah month for us because of the weather but for now it doesn't look like there is going to be a lot going on in the future either. Really hoping they can sort out these heart problems for him.
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