I Have Cancer, Myelodysplastic Syndrome, MDS, Neutropenia, Severe Osteoporosis, Heart Failure

Hello, my name is Jim Heath and I

have

cancer

. I

have

myeloid dysplastic

syndrome

. My journey to this place has been long and difficult and I have decided to go ahead and make a YouTube video about it in the hopes that it can help others. videos about amateur radio, hence the t-shirt and the radio equipment, um, so all my videos have been really to help and this is outside the realm of amateur radio in some ways, but I hope it helps one person or more and that it is this. It's been a long, very difficult journey to the diagnosis we reached about a year ago and what I want to discuss are the things that happened to me and if I had to do them again what would I change and maybe you can take some advice. from that maybe it's helpful maybe not the decision is yours the journey begins around 1960 when the school nurse called my family and said something was wrong with this child and we ended up going to the family doctor and the doctor He did some blood work and it was determined that he had thyroid disease and that it was overactive and that he had a goiter.

They took me to the University of California many times, which was strange because they couldn't understand where a kid would be in Burbank, California. They have received radiation or something to cause goiter, I think I know that now and you don't have to look very far north in the San Fernando Valley to realize that the thyroid gland was treated with even more radiation with what is known as ablation. to kill part of the thyroid gland fast forward many, many years I am now 73 years old I was born in 1949 the diagnosis of goiter was in 1960 the nuclear reactor that melted down in my area was 1959 I think and I think there was more than one crisis, I'm not sure about that, I'm not sure about the information I have at the beginning of 2015, about seven years ago.

I had my wife take me to the emergency room more than once and we went to another emergency room in the area because I didn't get much of a response from the hospital where she had worked many years before as an accounting supervisor. I keep having trouble breathing, tachycardia where my

heart

races so I bought a pulse oximeter on Amazon, I think I bought two and put it on my finger and one of them had a built in alarm on November 2, 2016 I woke up in my radio room it was around 2 in the morning I had passed out or fallen asleep I was at the desk and I tried to get up to go to the bathroom I couldn't get up I couldn't walk the pulse oximeter I put it on my finger showed a pulse rate of 155 and an oxygen level of about 73.

So with that we called 911 and they took the code for me. 3 to the hospital to the emergency room I was lucky that this time the doctor who treated me was the head of the emergency room and very skilled and he gave me a test that had not been done before and it was something called d-dimer, the D-dimer showed that I had the highest score they had ever seen in that hospital. Many times it was full of embolisms. He had difficulty breathing. A scan of my lungs showed I was in serious trouble. Lovenox was applied to break up the clots I was in there for a week was kind of a weirdness again, kind of like my time at Ucla where the doctors would come up behind me and feel my thyroid gland like they were suffocating me, They would come closer and feel it because it was It's strange, how did this kid get this?

It was the same in Sierra Nevada, in fact they wrote it on the blackboard in large letters, twelve thousand two hundred and eighteen. The normal score could be a couple hundred, it could be zero, um, times a couple hundred, I mean. a couple hundred, as I understand it, there is a problem at twelve thousand, you may not survive, you survived, they sent you home with an oxygen machine, a walker for other reasons and basically having to use the oxygen much of the time at night, so we tried to find out what caused it. My GP said the mli was caused by deep vein thrombosis.

I had leaned against something and hit my leg. We knew that was wrong because it had happened over and over again. and it didn't make sense that my D-dimer score was so high or that both of my lungs were full of blood counts. It didn't make sense to me, it shouldn't have made sense to him with the fact that we went to UC. davis for a couple of years all kinds of tests, a lot of misdiagnoses, a lot of incorrect diagnoses, which is part of the reason for this video, the doctors were saying different things, one said he had an aneurysm, an aortic aneurysm, and when we asked him about it, he said, well, Mr.

Heath, you'll be dead before you hit the floor, that's a quote and I always have my wife with me in the room so she can take notes and listen to what's going on because she's the calmest person in the room, um eventually us. I went to another doctor that I really liked, he was a doctor that we paid a monthly fee to see us, it was about a thousand a month and we kept getting the same response to the blood tests, which was one of the keys and he said that maybe. That's just how you are, maybe your low red blood cell count is how you are and other doctors have told me that maybe that's how you are, you have a very low red blood cell count and a low white count. maybe that's how you are, you're made, that didn't turn out to be true, so we sold the house we'd been in for 38 years and moved to Rockland, California to get into Kaiser.

Money was falling apart at a huge price. and we had to cut it down, so we went to Kaiser. I was having problems with my gallbladder and it was coming up all the time and I had a couple of episodes of really bad pain and I met with a surgeon and looked at my blood work and he said something about the effect. that I wasn't going to have surgery because I was worried about the blood test that something wasn't right didn't make sense and then they sent me to an oncologist who agreed and they did a bone marrow aspirate where they take out a hollow central drill that drills into the bone and let me tell you it hurt more than anything he had ever done to me and they suctioned out the bone marrow and sent it to Utah where they tested it and the diagnosis was dysplastic myeloid

syndrome

triple

cancer

and other problems a low white blood cell count

neutropenia

and they had problems to do bone marrow aspiration because of very

severe

osteoporosis

and, by the way, diastolic

heart

failure

and you have lost 25 percent of your lung capacity, so I have since looked for a different cancer doctor. because his first attitude was just let's wait and see and that didn't make sense to me.

We need to find out what's going on. Part of what I teach in YouTube videos is fixing something or hooking it up or making it work and your idea. for discovering that something didn't make sense, so I literally fired him. I went to see another doctor who was more aggressive in testing. Now this is where things get interesting. I started researching the test results. I made spreadsheets. I read things from various places like Mayo. clinic and determined that more tests needed to be done and she agreed and I also had help from some of my ham friends who are doctors in other countries, so I pushed her to do more tests and more tests and more tests and it turns out that There are other things that are wrong and we are still figuring out one of those things, my red blood cells, it's something like sickle cell anemia, but it may be Himalayan autoimmune hemolytic anemia, at least that's my thinking at the moment.

To what extent and what can we do about it? We may be able to make a decision in the coming weeks. Every time I went to the ER, the doctor in Grass Valley, the ER doctor, said it's PTSD, nothing's wrong. at home until I took code three, so it was something. I went to UC Davis, spent two years going to doctors here and it was an incredible journey. My wife had to take me because at that time she couldn't drive and not even there. it was overlooked time and time again and in my opinion it shouldn't have been that way, it shouldn't have been with every doctor we saw, yes Mali dysplastic syndrome is rare, it's only diagnosed about 30 times a day in the best case scenario, but still, what is it?

My point is to challenge your doctor if you don't like what he is telling you or if you think you know his attitude is oh and he sits in front of you and never touches you or ever or his bedside manner is terrible. him and find a different doctor, even if you are in a large system, find a different doctor, ask someone who is a good doctor, don't take no for an answer, don't take yes for an answer, always challenge that doctor if they come in there and say, "Hey, I saw this on the blood test," does that mean you might be wrong?

You may have no idea, but ask, read a little, do some research, be your own advocate, that doctor is not going to defend you, it may be necessary. He or she, in my case, I have a doctor, a doctor, she will spend time with me if necessary, she will dedicate the time that is necessary, but she is the exception, most doctors have 15 or 20 minutes, 15 minutes if It's a cold 20 minutes if you have cancer and they move on to the next one because they have to change patients and then when you contact that doctor you might have two or three thousand patients so you want that guy to know you even if you have to do something like raising your hand or getting angry at him, but get his attention and if that's not good enough, find someone else, challenge your doctor, don't take his diagnosis as a fact, challenge him, ask other doctors, ask your friends because time passes. it happens very carefully in my case mds from the time it starts in some reports it's six years old I've probably had it since 2015 now I've had it for seven years for those who have

severe

cases it can be months four months for the very severe ones because it becomes Leukemia, in fact, is sometimes called preleukemia.

I hope this helps you if so and you want to buy me a cup of coffee. I'll put it up on the screen if you have a comment on that. Next, if you have had any experience, please post it because that may help someone. I'm not going to respond to comments. I just don't have the energy to do it right now. I get injections every two weeks which kind of establishes my strength but I do other youtube videos so if you have a comment or experience post below tell us what happened to you it may help someone else if you think What I've said here is not good advice, say it if I think it's good advice, say that please, all comments are good from anywhere, we live in a time where people don't want to get along, or are you red or you're blue, or you're this or that, I'm so sick that we should come together and help each other I have cancer I have myeloid dysplastic syndrome I have severe

osteoporosis

I have diastolic heart

failure

I have a heart murmur I have lost 25 percent of my lung capacity I have a goiter, name it, it seems I have it.

I'm Jim Heath in Rockland California and I thank you for watching. If things come up, I can make a YouTube video afterwards. Give me the thumbs up and thumbs up. This will be my ham radio category because I have no other place to put it, but maybe it will be expanded later thanks for looking.