Toms Heart

TOMS HEART

My husband Tom had a heart attack 20 years ago. On a scale of 1 to 10 it was a 10. He had a quadruple bypass at that time which was only partially successful. Two of the graphs failed immediately and two continue to supply blood For the next 20 years. In February 2019 my husband has to be hospitalized due to Congestive heart failure (CHF).

He had retained almost 60 pounds in water and was literally drowning in his own fluids. They were able to medically remove the water through diuretics but it took about a month to do so. After that episode he was referred to the advanced heart failure clinic where they do specialized treatment such as transplant and LVAD (Left ventricular assist device). Starting September 2019 he was put on IV medication that he carried around with him all day and night which helped his heart pump fluids into his body and keep him going while we were assessed to see which device or therapy we would be doing.

During these evaluations It was determined that he needed a heart and kidney transplant. It took almost a year to get everything done because of the shut down of 2020. After he was approved for the heart transplant he then had to be approved for the kidney transplant.

In March of this year he met with the kidney transplant team and had completed everything except for one procedure a colonoscopy which was scheduled for this July.

For July 4 weekend we traveled from our home in Princeton to Katy Texas to visit with all of our friends and family. 15 minutes after we got to the hotel my husband passed out and hit his head. Because he is on so many medications and blood thinners we immediately called an ambulance to be evaluated to make sure that he was not bleeding inside his head. Once we arrived at the hospital they did a full body CAT scan and determined that there was no internal bleeding no damage from the injury however he was very overloaded in water about 30 to 40 pounds and they needed to medically help him remove that through diuretics.

The hospital in Houston was like a living nightmare. I can’t even convey to you how terrified we were with the hospital doctor staff. We informed them that he was approved for a heart transplant and that we were waiting for kidney approval to go on the list actively for the transplant. It seems that once they found out that he was a candidates for transplant They decided they were going to keep him until he got his heart. They were lying to us telling us that they were trying to contact his heart team but nobody would call them back which is not possible because the number I gave them is answer to 24 hours a day. They were willing to do very invasive procedures without any of his medical records for the last 20 years. They were trying to remove me from his room every chance they got so that they could keep him and do procedures that we’re not approved or authorized.

At one point they had Threatened to help me remove because I was a threat to my husbands care. I have been his caregiver for 20 years. I handle all of his medical condition records medication’s everything. And they wanted me removed from the situation. At this point I contacted the Dallas heart transplant team and told them what was going on and that we wanted out of there. We had to threaten to leave AMA if the Houston doctors didn’t allow his transfer back to Dallas.

After 2 days of not sleeping and leaving the door open to use the restroom so I could make sure no one messed with him he was finally transferred to Dallas.

We arrived in Dallas at Medical City Dallas Heart And Spine hospital on July 6 or 7.

They were shocked to see how good he looked. The hospital in Houston had them believing that he was on deaths door and couldn’t be safely transferred. The only medical intervention he had was a diuretic IV Medication. We thought we would be in the hospital for a week get his colonoscopy for his kidney transplant and then go home.

After a week on IV medication to try to get the water off of him they were unsuccessful because his heart was not strong enough to pump the water off.

They transferred him to ICU to put in what they call a SWAN sensor. This sensor measures the pressures in both sides of his heart and his lungs so they can monitor closely. It is a vital step towards getting a transplant. They expected to have the SWAN In for a week or so while they get the water off to make sure nothing happened to his heart.

The second week and ICU he was putting on weight instead of taking it off even under a strict liquid intake diet. At this point they decided to put a impala pump into the left side of his heart to help push the fluids out of his heart and into his other organs. This is very invasive and dangerous but it would prolong and improve his time and give him a chance to heal so that he could get a transplant.

The impella was not enough to get the water off his heart and lungs. The pressure in his lungs was so high he could not get a new heart. One blessing that came from getting the impella was that his kidneys kicked in with the added support and he no longer requires a kidney and a heart!! But at this point His only option was to get the LVAD and allow it to pump for him and help his pulmonary hypertension reverse and heal.

We have now been in the hospital for 7 weeks. 7 very long, exhausting weeks. I have worked every chance I get during this time. I go to work (I am a housekeeper) Then I will either go straight back to the hospital or I will go to my house do laundry take a shower things like that and then go straight back to the hospital.

I promised my husband that I would never leave him alone and I am going to honor that promise! He is terrified and it is the least I can do for him.

On Tuesday 8/17 he went into surgery to get the life saving device implanted in his heart. In order to do this they have to open up his chest plate cut a hole in his heart and implant the new pump. Then a line is attached to the artery coming out of the top of his heart and sends the blood out to the body.

The surgery was a success however the pump in the left side of his heart caused the right side to freak out and stop pumping. The Dr chose to put a temporary pump in the right side to help it heal and get stronger.

That day he was responding beautifully to the pumps and starting to heal.

The surgeon pulled 7 liters of water off using medication during the surgery. He vacuumed out another 2 liters from his chest cavity when they opened him up to put in the pump.

Because of this he stopped putting out urine during the first night. This is not unusual or unexpected. They hooked him up to a Dialysis machine to pull off water because he was still at least 15 L to 20 L overloaded.

The dialysis went beautifully his heart responded well his blood pressure stayed strong everything looked great for the first day.

The right heart pump pumps oxygenated blood back into the body during the first day they were able to wean him off of extra oxygen and he was strong enough that he didn’t need any additional help.

About 6:30 Thursday morning his system suddenly shut down. His blood pressure went from 104/56 (normal for him) to 56/38 Then to 44/29.

The first day of dialysis they got 4 liters of water off. Which should have had him up and happy and off the ventilator.

The second day they had to pump him full of medication and fluid and blood to keep him alive.

They pumped 4.6 liters of fluid in to get him stabilized. His blood pressure is 65/47 because his blood vessels are too expanded to contract and push blood through his body.

This is usually caused by an infection somewhere in the body. He is septic essentially. The problem is they haven’t found the infection. He is being given wide spectrum antibiotics to hopefully kill whatever it is.

This could take days or weeks.

Today he is more stable but is paler and showing signs of something wrong.