High Blood Pressure, the ICU (Kidney Failure)

 High Blood Pressure, the ICU (Kidney Failure)

 

     By this time my blood pressure was untouchable, despite all the medicines I was on. I spent the first week on the transplant floor. For some reason I had terrible panic attacks during this whole stay. I felt impending doom and felt like I was going to die any minute. I remember at the end of the week, a nurse took my blood pressure, and I had one of these panic attacks. My blood pressure was through the roof. It was in the mid-200s/170s. She wanted to go and get IV Ativan but I asked her to stay with me. She stayed by my side and called for another nurse to retrieve it. She held my hand until the medicine came. I felt an immediate relief once it was on board. The doctors were concerned with my blood pressure and how nothing seemed to touch it. They said I needed to go to the ICU to have it more closely monitored and to start a Nitroglycerin IV drip. This made for the 7th blood pressure medicine I was on.

    The ICU was the worst part of this stay. I felt trapped in my bed and tied down with my pulse ox on my finger, my blood pressure cuff on my arm, leads on my chest to monitor my heart, and an IV pole connected to my port. If I had to use the bathroom, there was a commode that pulled out from under a sink and there was a small curtain I could pull around me. Just getting far enough to reach the commode proved to be a task in and of itself with all my many tethers. The food menu I filled out for the transplant floor didn’t transfer to the ICU and I had no dinner that night nor breakfast for the next day. When I requested breakfast the next morning, as I was getting hungry and angry by this time, I was shocked at what arrived. I received a frozen hardboiled egg and a cup of hot water to heat it in. I also received a package of oatmeal. I wasn’t quite sure what I was supposed to do with this. Needless to say, this didn’t make me very happy. In fact, I was hangry. In about two days, I lost a great deal of muscle. I remember a few days into the stay, I tried to eat my meal and I could barely lift my arm to feed myself. My body and face were swollen with fluids. I was unable to void much. The Nitroglycerin drip caused me to have intense headaches. I remember crying being so frustrated and it only made the pain worse. They only offered me Tylenol for the pain. They put orders in for me to be scheduled for a brain MRI for later in my stay. I’m not sure why they did this, as my headaches began with the Nitroglycerin and disappeared when the medicine was stopped. I brought that to the attention of the attending physician, but she insisted I have the MRI.

5 Year Double Lung Transpalnt Anniversary and Kidneys Fail

 5 Year Lung Transplant Anniversary and Kidneys Fail

 

    At age 29, I celebrated my 5 year lung transplant anniversary. My parents threw me a big party at the house. The day before, I was called into the lung transplant clinic to receive some more blood. I hadn’t been bleeding, but my hemoglobin was low again, due to my kidneys not working properly. It was a great party and I was so glad to see all the people that came by to help me celebrate. I was so grateful for all the support and it made me very emotional. I felt really well that day too!

    It might have been as soon as the very next day that I began to feel quite ill, but it wasn’t my lungs this time. From this point, I rarely drank or ate anything at all. I spent my days in bed. I had both fatigue and malaise. I was perpetually itchy and Benadryl didn’t help. It was a different kind of itch. Like a creeping, crawling sensation, an itch that couldn’t really be stopped or scratched away. My legs and feet were extremely swollen and my foot didn’t even fit into any of my sneakers. I woke up to pee about 10 times in the night. This went on for maybe two to three weeks until my doctor called and said my blood work showed my creatinine had risen to a 3. He said I needed to be admitted into the hospital with the hopes that flushing my kidneys with IV fluids would help lower my creatinine. I was grateful because I knew I needed something to get me better, but I also knew this was going to be a very long stay. I knew I was in for another battle. 

 

 (One of my swollen feet.)

 Camping in Pennsylvania (Current)

    

     

    It's become a tradition to go camping at a camp site in Pennsylvania each year with my sisters and their families. My oldest sister has an RV and my other sisters and I tent camp. We go over to my oldest sister's site for our meals and we spend most of our time hanging out there. The first night we got there it was DJ night. There is a pavilion there where the DJ plays music for a bout 3 hours. We always have a good time dancing. There's also a hula hoop contest that some of us participate in that's always fun too. The next night was bingo, in the pavillion, and the prizes were money. My brother-in-law won one of the games. We spent our days doing things like, kayaking, canoeing, swimming, fishing, chilling in the hammocks, reading, having s'mores by the fire, bike riding, getting ice cream, walking around the lake, and things like that. We did prize bingo too and my brother-in-law won a blanket that he gave to my niece who was overjoyed to have it. My sister also won a mug that she was eyeing up. We had really nice weather while we were there. Lots of sun and warmer temperatures. I was always dressed in layers as I'm a bit anemic. Our sites were also heavily shaded by trees and my sister's site was right by the water so the breeze was a little cool for me. In the sun it was very warm. Showering was probably my least favorite part especially since the mornings were a little cool. It was a little cold at night for the first two or three nights. I needed to pee a few times a night due to kidney issues, and when I'd get back into my bed I kept the blanket over my head to heat my body faster. Thankfully my tent mates were understanding! It was a very fun trip and very relaxing. I love spending time with my family!

Impaired Kidney Function Leads to Hemorrhaging

 Impaired Kidney Function Leads to Dangerously Low Hemoglobin and 7 Units of Blood

 

    My creatinine had been on the rise due to the damage sustained from Polymyxin B, other antibiotics, and my antirejection medicine. One of the complications I faced was issues with uncontrollably high blood pressure. I could feel pressure in my throat, and I got headaches because of it. I needed to be on a cocktail of blood pressure medicine to try to keep my pressures a bit lower. One of the medicines I took was Clonodine. This medicine had a very sedating quality. I had to take it three times a day. I remember a half hour after taking it I would fall asleep for two hours. I would try to visit my sister, who had just had her first daughter, but I always ended up taking my two-hour nap in the beginning of our visit. I was on several other blood pressure medicines at this time as well.

    My impaired kidney function took a toll on my blood counts. I would go into the hospital on at least two occasions for infections, and my hemoglobin would dip into the 7’s. I was not actively bleeding in any way. I would end up needing blood transfusions both times. My impaired kidney function also made my periods heavier as well. During one hospital stay, I had my period and I passed very large clots with an unusually heavy period. I tried telling the doctor on call what was happening and that I was afraid I was losing more blood than usual. This was not a doctor I had ever seen before. He just told me it probably wasn’t as bad as I thought and that people often think they are losing a lot of blood but they aren’t. However, I was no stranger to a heavy period with clots. This was not that. Just a few days later my hemoglobin would dip into the 7’s and I would need a transfusion. This would not be the first time I would run into trouble with my period. 

    One day, I got my period and it wasn’t too heavy at first, but it was lasting a lot longer than it should have. Soon enough, my flow became extremely heavy to the point I became very concerned. The amount of blood and clots I was passing was even more severe than the previous time. I made a call to my lung transplant coordinator. She told me she would discuss it with the doctor. When she called back, she told me they decided to order Aranesp shots. I had used these in the past when I wasn’t bleeding, but had a low hemoglobin. I would administer one dose a week and my hemoglobin would soon come up. I wasn’t convinced this was a good answer. The blood wasn’t letting up and I decided to have my sister drive me to a local ER. They did some blood work and it showed my hemoglobin was in the 7’s and I would need a blood transfusion. They also decided to admit me to do some further testing to find out what was really going on. One of the nurses told me I did the right thing coming in and advocating for myself. I felt I was in good hands. I continued to bleed an extreme amount. I had many tests done including and internal ultrasound but no one had any answers. I kept needing more blood transfusions every few days. I was very weak and always out of breath as I did not have enough blood volume to oxygenate my body. I had to have a commode put next to my bed as I could not make the walk to the bathroom. One morning, I woke up feeling especially weak and more winded than usual. I asked the nurse, whom I considered an ally at this point, if she could ask the doctor to order a blood test, STAT, as I suspected my hemoglobin was quite low. She simply told me I had to wait until it was time for my regularly scheduled blood work. I didn’t have the energy to fight for what I needed. My father did visit me every day but he was not there when this occurred. When I finally received my blood work, it came back showing my hemoglobin was now at a 5. I was quite angry that I had to wait as long as I did when it was quite obvious that I was in a dire condition. I received two more units of blood. After two weeks the doctors came to me and said they could not handle my care anymore. My bone marrow was suppressed and I was not making any new red blood cells. I was a complex case and beyond what they could care for. I needed to be transferred to my transplant hospital via ambulance. There, many of the same tests were repeated. They first came up with a plan to give me a hysterectomy. At this point I was so scared and desperate I was willing to entertain any idea that might keep me from bleeding to death. However, my parents vehemently refused. They came back with another idea. I was treated with IV Estrogen. This worked exceptionally well. I also particularly liked how soft it made my skin. After a few treatments they told me I would need to go on a birth control pill. This prevented my periods from coming and thus I avoided a repeat of what had just happened. In total, I ended up needing 7 units of blood, making my total count of transfused blood since transplant around 20 units. I would stay on the birth control pill until a few months after my kidney transplant. When I eventually came off the pill, my periods were lighter and shorter than they had been before any of this ever happened.

Getting a Port

 Getting a Port

 

    In March of 2011, at age 29, I had been having abnormal IgG levels. I frequently would ask my doctor about it. I didn’t know too much about what it meant, but from what I had read in transplant groups online, people with a certain level often needed something called immunoglobulin therapy or IVIG. When I was in the hospital one time for an infection, another doctor noted my levels and suggested I do IVIG and told me to ask my doctor about it. I told my doctor and he said that we should go forward and do the treatment. I had been asking my doctor probably since I got my lung transplant, if I could get a port placed. He told me his reasons as to why he didn’t think it would be a good idea. I remember one of the reasons was that it could get infected. I had had so many IVs, midlines, and PICC lines over the years that my veins were very scarred. I had, for a long time, gotten midlines placed at home until the scar tissue became so prolific that I had to start going to a vein center and have a PICC line placed under fluoroscopy. Even though they had images of my veins, when they would thread the tubing, it would bounce off of scar tissue and branches in my veins, and hit nerves. It was such a disgusting, nausea-inducing, process as I wasn’t even mildly sedated for the procedure. To do the IVIG, my doctor said I should get a port. I couldn’t believe it! I was elated. After I had my port placed, my doctor changed his mind about doing IVIG therapy. He said it wasn’t really necessary. I didn’t really care, because I had my port. I love my port and it has served me so well. My port was a double lumen, and some years after it was placed, the bottom access developed a hole in its tubing near my neck. I can only use the top access now, but that has been all that I’ve needed in recent years. My infusion nurse comes once a month to flush my port. I still have the same nurse that I had from a few years before my double lung transplant. I am quite lucky for that, as she is amazing!

    Up until this point I had also had various bacterial, viral, and fungal lung infections. These were treated with IVs in or out of the hospital; and oral and inhaled medications. Some of these infections included, MRSA, aspergillus, parainfluenza, human metapneumovirus, rhino virus, adenovirus, corona virus, and several others.  Thankfully, after having a transplant, aspergillus could be treated and eradicated with just a 6-month course of an oral antifungal called Posaconazole.

 

 

 (One of my last IV's, running out of healthy veins.)

(Interventional radiology would stitch my PICC lines into my arm.)

(Port is placed.)

(Pointing to the line in my neck from the port.)

 

(Pointing to the port)

 

 

 

 

 (Using port)