July 2, 2017 – While we were at church Kristie started feeling dizzy and faint after going upstairs to Sunday school. She was able to sit down for a few minutes and drink some water. Afterwards she felt fine. She had two more similar episodes that afternoon while doing laundry and loading the dishwasher. Both times sitting down for a few minutes allowed the dizziness to pass. Since we were leaving the following week on a cruise, we agreed she would try to see our doctor on Monday to see if there was anything going on.
July 5, 2017 – Kristie saw her doctor and had blood work on July 3, the results came back on the 5th. Diagnosis was anemia. Since her blood count was below 8 and she was symptomatic he sent her for a blood transfusion. That night, she was given 1 unit of blood and we went home. It was a late night, but we felt good about her feeling better.
July 6, 2o17 – Kristie was feeling tired and sore since the blood transfusion. Our research on the internet showed that this was most likely fatigue from the anemia or possibly from the transfusion. Most of her discomfort was in her legs, so she spent the day resting.
July 7, 2017 – I got up at 5am and Kristie was not in bed. I found her on the couch with a heated massager trying to get some relief from the pain in her legs. Before I went to work, she had decided to try to see the doctor to see if he could help with the leg pain and cramps.
She got to the doctor’s office around 10am and while in the waiting area, she sent me the following text. “What do you notice about my right leg?” This was the first sign of any swelling. We don’t know if it started swelling in the night or if it began when she got up and headed to the doctors office. She said it was as hard as a rock.
Our doctor absolutely flipped out when he saw her. He said that looks like a blood clot, you have got to go get that checked stat! So, as things move in the medical field, stat means three hours later we met at Lake Pointe hospital for a sonogram on her leg.
During the sonogram I asked the technician if she cold tell us if she saw a blood clot. She said, well… since I can’t allow you to leave the hospital I can say – yes, there is a clot. I said where is it, she said – the entire right leg. Huh? From her hip to her ankle, completely clotted. She left to inform the radiologist so he could contact our doctor and to get a wheelchair. While she was gone, Kristie reflected on the fact that a few minutes before they had sent her back out to the car to get her insurance card, now she had to wait for a wheelchair.
Well, the doctors conferred and within 5 minutes they wheeled her over to the emergency room. We felt blessed that the vascular surgeon on call was Dr. Yao. Kristie had a procedure done by him last year and we were so glad that he would be the one to remove the clot. We met with him and were scheduled for the following morning and he said we should go home the following day. Just in time to possibly still make the cruise. Our daughter Holly came in from Abilene just as they were rolling Kristie to her luxurious semi-private room. 1 bed, 1 hard back chair and a curtain. I will say her roommate was very nice. This is how Holly spent most of the evening, in bed with Kristie…
July 8, 2017
11:00 am – Dr. Yao had told us that the procedure should take about an hour and a half. Holly and I sat, and an hour and a half passed, 2 hours passed, 2 and half… finally around the 3 hour mark our surgeon came in. His first statement/question was, does she have a genetic clotting disorder? Not to our knowledge. Kristie has never had a blood clot before. He began to explain the procedure. He had planned to put a filter in her abdomen to prevent the clot from moving to her lungs. Due to the size and location of the clot, he had to put the filter above the kidneys.
He was really surprised to find that the clot was much larger than the entire right leg, in fact it was the largest he had seen. It had extended into the Vena Cava which was very rare. He explained that this vein was roughly twice the diameter (4omm) of the vein in the leg. Due to the extent of the clotting, he had to use twice the amount of TPA clot buster to clear a path in the vena cava so that blood could flow from the legs.
Dr. Yao told us that Kristie was very fortunate, with the amount and location of the clotting, if any were to have broken loose and gone into the lungs she would have died instantly. I flashed back to seeing her using the heated massager on her legs the previous morning and got nauseous. He said she still had a lot of clotting in the vena cava that he could not clear simply because he did not have a tool that was large enough, so he cleared a path and had good blood flow. He expected that remaining clot would break up over the next month or so due to the thinners she would be on. She would be protected from pulmonary embolisms by the filter he had placed to protect her lungs. If she wakes up in the morning and the swelling was down in her leg, we could go home.
The rest of the evening is really a blur for me, but I will try to recount the events…
3:00 pm – They returned Kristie to her semi private room about 3pm. We expected immediate relief from her discomfort but she was feeling pain in her abdomen. The nurses told us gas pain was common after surgery and that it would get better soon.
4:30 pm – Kristie’s pain went from uncomfortable to more severe so they ended up giving her morphine and Gas-X and she had a little relief from the pain. The only time she wasn’t in pain was when she was sleeping.
6:30 pm – Holly, still having a lot of anxiety, had to leave so that she could get back to Abilene for work the following day. I assured her that I would keep her posted and that I could handle being by myself with her.
7:45 pm – I texted Holly that the last hour had been rough but they had given her morphine again. It lasted 15 minutes. I had asked for a doctor around 6pm and now I started asking again. Kristie was lost in her pain and begging for help. There were children visiting our roommate and they kept peeking around the curtain as Kristie struggled with pain. I don’t know the exact time, but I remember it had been over 2 hours since we called for one, but I went to the nurses station and starting begging them for a doctor. I was told he was in the ER and would be up as soon as he could. A few minutes later he called up orders for Dilaudid (their strongest med for pain), blood work, and a CT scan. He came by around 30 minutes later and told me her pain was not normal and he would look at the CT once it was done.
9:30 pm – Dilaudid only lasted an hour, when she woke it was like she was on fire. She could not pinpoint the source of her pain, everything was hurting. They had done blood work but no CT scan. No sign of the Dr. in the last hour and a half, nurses said he was in the ER. I tried to get the nurse to take Kristie down to the ER if that was were the Dr. was.
10:00 pm – Kristie, in her pain, told me her arms were going numb. She took two big gasps of air and said help me! I immediately thought of Kristie’s dad who passed away from a pulmonary embolism. I ran into the halls to get a nurse. Two nurses tried to get a blood pressure, they were getting numbers like 74/45, 60/40, etc. They thought the machine was messed up so they tried a different machine with similar results.
While this was going on, a friend walked up to the room to say hi. I walked out to say this was not a good time and that something was wrong. I looked up and the doctor was walking by. I stopped him and told him we needed his help, he didn’t give me a very nice look and turned to head to the nurses station. I stopped him again and said it is really bad right now and the nurses where in there working on her at this moment, please come help. Without a word he walked into the room, within 60 seconds he said she was bleeding out and called for her to go to ICU.
A couple of minutes later, the charge nurse from ICU came in barking orders. I looked up and there were at least a dozen nurses responding. I believe this nurse saved my wife’s life.
We have a friend who is a surgical nurse at Big Baylor downtown who just appeared at my side. She was with our friend who I saw in the hallway earlier. Kelli and the ICU nurse somehow exchanged credentials as they began moving Kristie to ICU to stabilize her., Kelli interpreted everything for me. Kristie was bleeding somewhere, with her on blood thinners they couldn’t really open her up and if they couldn’t stop the bleeding she would die. I was dumbfounded.
I had to make two calls to my children I never dreamed I would make. The prognosis was bad and they needed to come if they could. Meanwhile, they were giving Kristie blood and got her stabilized enough to do a CT scan to find where she was bleeding (the scan ordered earlier had never happened). Results would not be available for 30 minutes.
During that time our friends in the waiting room began to pray for amazing results from the CT scan. The doctor came back with results that there was no active bleeding. He said he and Dr. Yao had conferred and believed it was a Retroperitoneal Hemorrhage. This was the best possible diagnosis and possibly the only one where she would survive.
July 9, 2017 – In short, after a 45 minute explanation from Dr. Yao the following morning, this it what I understand. Due to the amount of clotting and the amount of blood thinner/clot buster, her blood had seeped through microscopic holes in the vena cava. It bled into a self contained compartment which would hold only so much blood and once full, the pressure would cause the bleeding to stop on its own. The treatment was to give her blood to replace what she lost, wait a few days for the microscopic holes to seal, and allow the lost blood to dissolve into her tissue. He said there was never a nick or cut or active bleed and the CT scan from the procedure verified that.
He said that over the next few days they would be trying to balance her need for blood thinners and her need for clotting and that was certainly the case. She still had/has a large amount of clot in the vena cava. The risk is that she would continue to clot and it would clog up the filter she has protecting her lungs and that clotting would move towards the kidneys. The other risk was that she would start bleeding again so we began a daily watch of certain numbers in her blood work. One day they would think she was bleeding and the next they would think she might start clotting.
July 20, 2017 – Her kidneys have been the real issue since she has stabilized. There are 3 factors for her that caused Acute Kidney Failure. 1. Low blood pressure, had that and fixed it. 2. Dye from the procedure and the following CT scan, no more dye since. 3. The clot material that was broken up during the procedure, and it was a lot, could hurt the kidneys. No one really knows how long it could take for them to come back so we made the decision to go on dialysis early on. They are coming back, but it has been slow and we continue to watch her blood work and the output of the kidneys.
Doctors do not believe the original anemia and blood transfusion are related to the clotting. They are currently doing extensive blood work and testing to determine the source of the clotting. At this point the suspicion is that it is a genetic disorder, possibly Factor V Leiden.
My girl has had a rough few weeks. We are on day 14 in the hospital right now. They are talking about sending her home in a few days where she can continue dialysis on an as needed basis. They expect her kidneys to make a full recovery. We pray that they do, but even if they don’t we are thankful to God. We are also thankful for the family and friends whom God has sent to support us, to be present with us, to pray for us. We are just thankful.