Sometimes life doesn’t go as expected. You may have wondered where I disappeared to – or not, but whether you noticed my lack of posting and email over the last few weeks or not – It’s been a good five months since I was active online.
I turned 47 years old in November 2022, but at the beginning of August (2022) I had no idea how sick I was about to become. I had noticed earlier in the summer that hiking was harder than it ought to be. I felt weak hiking up hill. Hannah and I went on a hike in North Georgia back in April and I still remember thinking, “Man I shouldn’t be this out of shape!”
And then in June I went on a longer 7-mile hike with my daughter Sarah and thought the same thing. I try to stay fairly active and hiking is a favorite pastime of mine and it just didn’t make sense to me.
I don’t generally share much about my private life publicly, but I did want to briefly talk about what I went through over the last few months. I’ve always been a heavy bleeder. My monthly cycles are terrible and I’ve suffered from menorrhagia for as long as I can remember – probably all of my adult life.
Earlier, in March, I’d had an extra period which means my hemoglobin was probably getting low in June and it didn’t occur to me until much later that that was why I was feeling winded and out of shape. I was actually anemic.
So in mid-August, I started my period – only it wasn’t like a normal period and I was immediately concerned. However, I didn’t go to the doctor until about two weeks later when I started feeling like I was going to pass out just from picking my camera up or from walking up a short flight of stairs.
My kids became very worried and no one wanted me to drive the car anymore – with good reason. I was lightheaded and felt weak. I finally saw the doctor after I had been bleeding for about 21 days and my hemoglobin was very low. I needed a blood transfusion, but since my hemoglobin was not at critical levels yet and I did not have health insurance, I decided to forgo the transfusion as I did not want a hospital bill. Not ideal, but if you’ve ever been in a situation like that, you probably get it.
I bled for a total of 30 days before it finally stopped. My doctor ordered ultrasounds and other lab work and I was told I had an enlarged uterus and thickened lining (three times as big and thick as it should have been), they found a few fibroid tumors, polyps, and an ovarian cyst.
By this point, after having been bleeding for 30 days, it was hard for me to do much more than lay in bed. Some days it was hard to hold my head up and I felt really really bad. I was miserable. My strength was just gone.
My doctor decided to try treating me with progesterone to help my uterus shed the lining and hopefully shed the polyps as well so that my next period wouldn’t be as bad. I took the progesterone for 10 days – she told me to expect more heavy bleeding and warned me that I may need to go to the hospital for a blood transfusion if it was too bad.
Unfortunately, the progesterone did nothing. So after the first round was finished she decided we would try again. On the 3 or 4th day of my second round, my dad ended up in ICU down in Atlanta, Georgia. He had a number of issues, including a tear in his aorta and without even thinking about it, I jumped in the car by myself and raced down to Atlanta from my home in Kentucky. It’s about a 7-hour drive and it’s not unusual for me to make long drives like that – I do it often.
The next morning I woke up at my parent’s house and noticed a pain in my upper calf, just behind my knee but I didn’t give it much thought as I drove my mom back to Atlanta to the hospital to visit my dad for the day. As the day wore on, the pain in my leg continued to bother me and I tried stretching and massaging it softly, but nothing would make the pain go away. And, in fact, by evening it was hurting even more and I began to worry I had a blood clot in my leg.
It was hurting so bad the next morning that I told my mom I needed to go home and go to the doctor even though I wanted so much to stay and see my dad in the hospital and help my parents at home. So, I jumped back in the car and drove the 7 hours back home. I will say that this was not the best way to handle the situation, but I didn’t have health insurance and I didn’t want to be in the hospital 7 hours away from home.
I had more than one anxiety attack on that drive back home because my this point I couldn’t put weight on my leg and was it hurting so bad. I didn’t know much about blood clots except that you can die if it breaks off and goes to your lungs. My husband met me about an hour outside of Harlan and drove me to see my doctor during the office’s after-hours and she told me to go straight to the ER.
So, by this point, it’s mid October, and I’m still weak from all the bleeding, and I was now in the hospital ER. They ordered an ultrasound of my leg and didn’t find a blood clot (DVT) but I was in excruciating pain and just barely touching my leg was terribly painful. They ordered a CT scan and a few other tests – the blood test indicated a blot clot, but the CT scan showed nothing.
The ER doctor told me they were going to send me home with some suggestions about managing the pain since it was probably just a strained muscle. But I knew – I was positive – I had a blood clot and I asked them to redo the ultrasound explaining that I had almost all the symptoms and it was my opinion that the tech did not scan the right part of my leg.
I asked them to redo the ultrasound.
Thankfully, the ER doctor listened and when the shift changed at midnight and a new tech came in, they ordered another ultrasound. This new lady was so good and so patient – she spent 45 minutes looking for the clot and finally found it behind my knee.
I was admitted to the hospital and they began treating me with blood thinners for the DVT. I couldn’t walk without pain and I was very weak, but within a couple of weeks of me going back home, the pain eased and I slowly started to feel a little stronger. I skipped my period that month and that definitely helped my body build up more blood that I desperately needed.
As you can imagine, being on blood thinners when you are having excessive uterine bleeding is not ideal. And I would have to be on blood thinners for at least three months. As my doctor said more than once, “We’re between a rock and a hard place.”
She decided to send me to a hematologist because back in 1999 I was diagnosed with a bleeding disorder called von Willebrand’s disease and she wanted to get more information on how to help me. The other treatment options she had considered to stop the bleeding were now off the table because of the blood clot.
She couldn’t give me medicine to help me stop bleeding because it would make my blood clot. I couldn’t have surgery because of the risk of bleeding from the blood thinners. I couldn’t come off the blood thinner because of the risk of the blood clot breaking loose.
When I went to see the hematologist on November 21, my hemoglobin had risen considerably and I was feeling stronger. My hemoglobin was at about 11.
We had a wonderful Thanksgiving and I was doing better. I was able to cook and clean my house again after months of being too weak to do much more than lay in bed and watch YouTube or Netflix – and if you know me, I rarely watch television. I really like to be up and busy!
I finally started bleeding again on December 10. I had driven down to the Chattanooga area (about a 4-hour drive) for a few days to take Christmas photos of my daughter Laura with her horse, Theo, (you can see the album of photos here.) and to spend time with my four daughters who live in the area. I started bleeding the night I arrived (Saturday).
Only this time, the bleeding was even worse – most likely because I was on blood thinners. For the next four days, I basically hemorrhaged. Without going into a lot of detail, I was bleeding A LOT. And by the time I drove back home on Tuesday, I was weak and feeling terrible.
On Wednesday, I went to see my doctor to have my hemoglobin checked. Two hours later I was on my way to finish up my Christmas shopping (I’ll tell that story later) when the doctor called to tell me to go straight to the ER for a blood transfusion. My hemoglobin was at 6.9.
I was so frustrated, it was almost Christmas, and I had things I wanted to get done before the ice storm hit on Thursday night (Christmas was on Sunday). My first thought was, I’ll just get my errands done and then go to the hospital (I can be stubborn), but then Laura called me and asked me to go immediately to the ER.
So I listened and turned around. By the time I got to the ER my hemoglobin was 6.5 and an hour later it was at 6.0. Looking back, I’m glad I didn’t wait to go to the ER. They admitted me and gave me 2 blood transfusions before morning.
If you know me, you know I love Christmas. But even more than that, I love making Christmas special for the people I love. I bemoaned the fact that I was in the hospital four days before Christmas with an ice storm moving in and I hadn’t finished my Christmas shopping. I mean, I didn’t start my shopping until December and I hadn’t been feeling well so when I was shopping I was moving pretty slowly.
I just wanted to go home.
I heard these words repeatedly from the hospitalist who was in charge of my blood clot during my hospital stay, “We’re between a rock and a hard place.”
He said things like, “We’re going to take you off the blood thinners for now because your risk of dying from bleeding to death or having organ failure is greater than your risk of dying from the blood clot right now.”
And then when they had me stable he said, “Your risk of dying from the blood clot is now greater than your risk of dying from the blood loss.” So they put me back on the blood thinners.
I was so thankful when they sent me home the next day. My hemoglobin was at 9.7 after the transfusions. My husband drove me down to meet my daughter Laura in Knoxville so I could finish my Christmas shopping as soon as I was discharged. I still felt terrible and I wasn’t able to do much – but I was able to do what I needed to do so that I could make sure each of my 4 grandchildren (we have custody of them) would have a good Christmas.
Christmas was wonderful. I didn’t bake anything – I usually serve tons of baked goodies and meals to my family over the course of the holiday. My kids wrapped all the presents for me because I was too weak and still bleeding. But I was home and with my family, and I was alive, and I had so much to be thankful for.
Christmas morning it was hard for me to even stir the eggs for the breakfast casserole I made for breakfast (yes my kids would have cooked for me – but I wanted to do it and I’m stubborn). And by early afternoon I was in bed and I stayed there for the next few days until Wednesday, one week after my last hospital stay, I went in for another check on my hemoglobin. I was back at 6.5 hemoglobin having dropped from 9.7 or 10 when I left the hospital on the Thursday before. (Normal for women is 11- 12).
My doctor told me to go to the hospital and tell them I needed to be immediately transferred to the UK hospital in Lexington, KY because our small town hospital just did not have the blood and platelets needed to treat me for emergency surgery – and they wanted me to have emergency surgery.
I did what she said and she even called ahead to let them know what she wanted but, instead of transferring me out, they admitted me to the hospital again. I was given two more blood transfusions and told that the accepting physician in Lexington did not think my case was enough of an emergency for them to accept me.
The next morning (Thursday) my doctor came to see me and said that she was going to try again. She called Lexington and pleaded my case. This time, they agreed. I was transferred by ambulance at 8:00 pm to make the 3-hour drive to the UK hospital. The doctors got to work on my case immediately. Everyone was so kind.
I was able to get a shower around 2am and felt so much better on Friday when I woke up. It’s amazing how being clean helps lift your spirits!
But by this point my veins were tired and every time they had to stick me, they couldn’t get a vein to give up blood. I ended up having every vein stuck – including below my thumbs, my wrists, the back of my arms, etc. I already had the 2 IVs in each elbow, and before surgery, they needed more blood, They couldn’t get a good vein so they brought in an ultrasound machine and a special tech who used the ultrasound machine to guide a third IV into a vein deep in my arm so he could draw the needed blood with a syringe. It was traumatic lol. I was stressed and very glad when they gave me something to knock me out.
On Friday afternoon, I had a surgical procedure that will hopefully keep me from bleeding excessively again – although time will tell. I am very hopeful.
In the photos below you can see my meal of ice chips before surgery, how I felt after surgery, and the BBQ dinner they brought me at 6:00 pm after almost 24 hours of no food. When I saw it, I burst into tears – I’m vegetarian and I was exhausted and emotional and hungry.
The nurse felt so bad, they wrangled up this beautiful fruit plate and vegetarian dinner for me. 🙂
You can also see some of my grandkids helping pick me up from the hospital on Saturday evening plus some of the sweet notes they wrote on my get well cards. 🙂
It’s been a week since the procedure. I’ve had no more bleeding since. I have dealt with weakness, nausea, and dizziness since the procedure and I have spent most of my time this week resting and trying to recover. I’m still on blood thinners but hopefully, in a few weeks, the DVT will have resolved itself. If you actually read all of this, you’re a trooper. It’s been a long five months. But I’m so grateful to be on the road to recovery and I’m looking forward to being healthy and strong in 2023.