Monday, September 16, 2013

JOEL THE MUTANT

About 4 month ago I noticed that Joel's left leg was swelling.  I asked him how long that was going on and he said for awhile.  I told him that it was probably a blood clot and told him that he needed to take an aspirin everyday.  I've seen all kinds of blood clots.  There are superficial ones that are in veins that are just under the surface of the skin and they are not dangerous and usually just taking aspirin and elevating your leg will help relieve symptoms you will have and after awhile they will disappear.  I've had one of these and never had a problem. Then there are clots that are located deep within your thigh that develop in major veins and are called Deep Vein Thrombosis or DVT.  They are very dangerous and can break off and travel to your lungs, brain or heart and cause a pulmonary embolism that will cause major damage or death.  Usually in the latter you see a lot of swelling and the leg is red and also has a fever.  Since Joel's was only swollen I wasn't as worried. 

Flash forward to a week ago and I notice a quarter shaped rash on his forearm.  I wondered what it was but forgot to ask about it until the next day as we were coming back home from out hike from Kannarraville Falls(Labor Day).  It was less red and swollen by then but it was still the size of a nickel.  He said it was from TB shot that he got from work.  I freaked out.  I give them to patients all the time and they are supposed to disappear completely after 24 hours.  But there are people that have late reactions so we have them come back after 72 hours to recheck.  If there is ever any redness at all it is questionable.  If it's red, raised and bigger than an nickel then it is most definitely POSITIVE!  I flipped out.  I told him that he had to come to see Dr. LaRowe the next day first thing in the morning.
 Tuesday Sept 3rd -  Dr. LaRowe said that it was indeed positive and said that Joel had to get a chest x-ray done and he needed blood work done to rule out tuberculosis.  He asked Joel if anything else was going on and he told him about the swelling in his leg.  Dr. LaRowe wanted him to get an ultrasound done to rule out a DVT.  So, since Joel wasn't fasting he had to wait until the next morning for the bloodwork and we couldn't get him in for the ultrasound until the next day as well but he did go in for the x-ray which came out negative. 

So, the next morning - Wed. Sept 4th - he came over and I drew his blood and then around 11am he went over for his ultrasound.  It is policy for the hospital to call the dr. whether the ultrasound is positive or negative to tell him the results before the patient leaves to see what the doctor wants them to do.  If it is positive, sometimes they have them admit them into the hospital right then and there.  So, I wasn't surprised when the hospital called to talk to Dr. LaRowe.  However I was surprised when Dr. LaRowe came up to me and said that Joel did have, not only 1 but, 2 DVT's.  He said that he told the hospital to send Joel back over to our office.  When he showed up he took us both into a room and explained what was going on.  Joel was to go on Xarelto.  It's a new blood thinner that is great but costs $22 per pill.  He needed to go on a
15mg pill twice a day for 3 weeks and then a 20mg pill once a day for 6 months.   And he also needed a ton more blood work done to see if this was caused by a DNA mutation gene that was passed down to him.  So, I drew more blood and Amy and I took all of the Xarelto samples out of our drug closet.  It was enough to get Joel started for the first 10 days of 15mg's and one and a half months of the 20mg.  Joel doesn't have any medical insurance so the cost of everything was building up and the medication was stressing me out.  But about an hour later the Xarelto drug rep came in and said, "Wow, who got a DVT?"  I thought I would get in trouble but I told him anyway that it was Joel and he quickly said, "do you need more samples?"  I started to cry.  He also showed me the card that Joel could use that would get him 10 days free of the 15 mg for the pharmacy.  That all by itself saved us $220.  And he said that he'd be back every 2 weeks and he'd leave 3 extra boxes every time to keep us on top of things.  Now we were set on enough medication to hopefully get us through.  Dr. LaRowe sent Joel home and told him to lay horizontal for the next 48 hours so the blood thinner can get to work.  He wasn't supposed to do anything that would get his blood pumping for fear that the blood thinner might dislodge one of those clots and cause a Pulmonary Embolism.  So he called into work and went home to lay down.  Joel asked how soon he could start running again and Dr. LaRowe said he'd call his friend Dr. Haslem who is a Hematologist and ask him. 

Dr. Haslem was out of the office so we had to wait until the next day, Thursday Sept 5th, and he said to wait 3 weeks which gave Joel a week and a half left to train for the marathon.  He said he was going to do it but we weren't really sure.  That day we also received Joel's first set of blood work and everything was great.  No signs of tuberculosis hurting his liver or kidneys. 

Friday was quiet.  Dr. LaRowe had the day off.  No blood work came back.

Monday, Sept 9th, all of the blood work came back.  It all came back negative except for the main one that we wanted to be negative. 
The METHYLENETETRAHYDROFOLATE REDUCTASE (MTHFR), DNA MUTATION.
It was the one that said that it was a mutation of a DNA gene that causes your body to make clots just because.  It puts the person in a greater danger for strokes, heart failure and other fun stuff.  We immediately worried about the kids.  If it was passed on to them then it meant no contact sports for fear of a blot clot forming in the head after a hard hit.  We were lucky that so far the girls have only done swimming and Josh chose golf.  And if the girls are positive, when they get married and try to have children they would have to be on blood thinners because the risk of stillborn births is high because of clots in the umbilical cord.  So, Dr. LaRowe said that because of the new blood test results he did want Joel  to start taking the 9 months of medication for the tuberculosis even though it came out negative.  Just to be on the safe side.  It won't hurt him.  It will just immunize him from ever getting it anyway and on the off chance that there was an underlying positive cell that did want to act up we would kill it before it does.  He also said that Joel would probably have to be on blood thinners for life and that he had to go see Dr. Haslem to get these questions and thousands more we had answered.  So, we sent over a referral and called the nurse up to see how soon we could get him in. Meanwhile, thoughts of getting Joel a new job with insurance so we could afford to get Xarelto for 60 more years and to afford to get the kids tested and when to get Shayne tested, how to even pay to see Dr. Haslem and a million other things plagued our minds.  I called up Kyle and asked him about the University and if they were hiring and how much more schooling Joel would need to get on there.  I call Kyle every other year and go through this with him.  You would think that we would have just done it 10 years ago and not have dragged out feet.  Now it's too late.  Because they are now a University they have more than enough qualified people applying for all of the professor positions.  Joel's little Masters degree doesn't hold up any more.  A PHD is required and even then there are 20 applicants per available opening.

So, everyone in the family was notified and prayers were asked in our behalf.  The next day we still hadn't heard from Dr. Haslem's office.  So I called over and talked to his nurse and she said that she would call Joel tomorrow and let him know when she could fit him in.  I was depressed.  Joel was depressed.  It was like a dark cloud had settled over our house.  We hadn't really said anything to the kids.  Why worry them.  I called Joel and told him that they wouldn't be calling him until Thursday to make an appointment and usually your appointment was at least a couple weeks after they called you if not more.  So I was completely surprised when and  a couple hours later he called me back and said that they called and said that they had a cancellation and that he could meet with us at 9am the next morning on our Anniversary, Thursday, Sept 12th.  Dr. Haslem's office is in the Cancer Center at the hospital and it was scary walking through those doors.  His nurse brought us back, did his vitals and said that Dr. Haslem would be right in.  I was afraid I would forget all the questions I had so I started reviewing them. Dr. Haslem was not at all the person I had conjured up in my mind.  He was a young, 36 years old man with a head of gray hair that was full of energy and had a real concern for us and our situation.  He asked us if we knew Ashley because his daughter played on the same basketball team and we talked about that for awhile.  Then he checked Joel's legs out and then talked to us about every little detail about blood clots.  How they're formed.  Why they're formed.  What Xarelto will help with and why Joel will need to be on it.  Then he got to the blood work.  He told us that even though Joel is positive for the MTHFR DNA Mutation, the good news was that there are 2 parts to that gene.  A Heterozygote and a Homozygote and to be positive you had to have both parts.  Joel didn't.  He was only heterozygous.  So, we were in the clear!  There was no possible was of passing anything down to the kids because he didn't have anything to pass.  It was such a relief.  It felt like a huge weight had been lifted from our shoulders.  I wanted to cry but I had no tears left from crying so much earlier this week.  He also told Joel that he wanted him to start running again.  That staying stagnant will form more clots and that he needs to get out there and stay active.  I thought Joel was going to cry tears of joy.  He was so happy to hear that.  He thought for sure that his running days were over.  Dr. Haslem also told him that he thought that after 6 months of being on this blood thinner he could stop.  It would not have to be a lifetime drug.  We meet back with Dr. Haslem in 6 months to do another blood test and if everything is fine then he'd set us free.  I couldn't have imagined a better anniversary gift.  He gave me my husband back.  And they only charges us $75 for the office fee.  That's it!  Another miracle.  We are truly blessed.  I know that it was through the power of prayer from all of our friends and family that helped make this all possible and I am extremely grateful to you all.   So, 6 months of blood thinners and 9 months of TB medication and he'll be a new man.

The next morning Joel and I went to the Rec Center and Joel ran...and ran...and ran.

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