Coping
Patient and Caregiver Diaries
Patient Diary -- Jennifer Davis
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dr appt update
Hi!! I need to tell yall something about what I found out today from my doctor's appt. with my lung doctor. Found out that the pressures aren't coming down from the right heart cath as I explained earlier last week. Well I guess the Revatio and coming down on the Flolan aren't working. We are going back up on the Flolan as of today I'll be at 18ng and will increase the Flolan by 2ng every 2 weeks til I get up to 22ng. Well I've quit smoking AGAIN!!! I have too this time he said cause he has classified me in the Class IV category which means the worse of all. We are talking about doing a transplant evaluation. He wants it down in Fairfield, Minnesota or St. Louis, Missouri. But I asked about Oklahoma City cause Oklahoma City does the double lung and heart transplant. He has agreed to let me to go down there. He's going to be setting everything up for the evaluation and going to set an appt. up for me but I don't know when it will be. Hopefully after the holidays! But I'm really scared about the whole transplant thing. I know I've over came the open heart surgery at 4. My parents getting divorced at the age of 8. Then the mental illness and not hearing voices which I haven't heard them in 3 yrs. now. And then being diagnosed with this horrible disease. And now this! So I've had alot going on in my life but I know if I can over come those obstacles in the past that I can NOW!!! Just keep me in yalls prayers and everything. It's just really hard for my family especially seeing my mom suffering and going to all my dr's appts and hearing all this and seeing me like this on a daily basis. Please keep my mom, brother and Audra, my sister, and my dad in the prayers also and the rest of my family. Just wanted to tell yall this. Oh before I forget the 1st pressures (when I found out were 93 and the MEAN, whatever that means LOL, were 60) and the 2nd set of pressures were 87 and the MEAN were 50 and now the 3rd set of pressures were 80 and the MEAN is still 50. I guess Dr. Cosmic is looking at the MEAN thing I'm going to ask him what that means LOL but please keep me in your prayers. Love to all and HAPPY HOLIDAYS!!! Jennifer P.S. Good luck everyone and I hope everyone has a GREAT DAY AND PH DAY!!!!!!!
Saturday, December 9 2006
hello all! Hi all! I am just very stressed out today. On Tuesday, I had to take Smokey (my cat) to the vet to get his annual shots and on the way back I was getting chest pains and I was trying to focus on something else. I was only about a mile to mile and half south of town and I had to pull over and I was talking to my home health nurse about my PT/INR results and I told her what was going on with me and told her I was gonna pass out and then I pulled over and got out to get fresh air, which helped. She was gonna call someone but I told her that I can make it to town and I was just worried about Smokey if I was gonna go to the ER, I didn't want him staying in the van since it was cold out and he hates car rides LOL, poor kitty, but I decided to take him home and then go up there. Well my mom and step dad showed up at the apt. and then we went up there and they ran a bunch of test. I guess one of the heart enzymes, it starts with a "T" tryponit; however you spell it. Was doubled. it was like 11 or 0.11 or something like that and the doc mentioned something about my right ventricle working way to hard. She asked if I was under alot of stress and I said YEAH!! But they thought the cath came out cause it measured 14cm and it was 10cm about 20 mths ago when they put this one in. Did a chest xray but Kathleen (the doc on call) didn't know to much about reading xrays and how to tell about if the cath was in or not so she called another doc in and she said everything was fine with the cath. I told them that I get wrapped up in my tubing and it pulls sometimes. So maybe that's why it's the length it is now. But I have a cuff that is sowed into the chest wall and my cath is tunneled so it won't come out. But anyways, they sent me to Mercy in Des Moines and those docs ran test and all that. And kept running the tryponit blood test and I didn't know til the next day that it was normal and all that. Cosmic (my lung doc) said everything looked good on his end and when Stevens ( heart doc) wants to discharge me it's okay with him. Stevens wanted to keep me another day to run a cardiolite stress test and if everything is fine I get to go home on Thursday. I got soooooooo agitated on Wednesday cause I wanted to go home and I didn't get all my meds like I was suppose too. Especially my psych meds. I was very moody and going off on my mom and telling her to go home and everything. I just didn't know why I was acting the way I was and all that. Well I needed my ambien so I could go to sleep and that they said I couldn't because of the doc said I couldn't have any of my psych meds or anything like that cause it would mess up on the cardiolite stress test and I said I didn't care that I needed my ambien cause I'm having racing thoughts and I just called my mom and gripped her out. Well my mom called and the nurse said since the doc did write out an order she didn't care if he wanted me to have it or not I was gonna get it. I told her thank you thank you thank you. I took it and fell alseep. Had the test the next morning, I was the first one and I thought I was gonna get out early then. Well finished the test and came back to my room and went to sleep and woke up cause Stevens was there and I just heard him say everything looks good and my first words outta my mouth is " do I get to go home" and he said yep and I told him about my pysch meds and everything else and he was pissed. He said he was gonna make sure I'm gonna get ALL my meds this morning. Well I thought I would get out before noon. I didn't get out til 3pm and I had to see my psychartist at 3:20pm. So stupid me I cancelled it cause I was mad at my mom ( poor mom, sorry for everything; I love you thought) and she called and got back my appt. Told Koele everything and I know my effexor ain't workin anymore. I've been on it for like 3 yrs. So she's tapering me off of it and gonna go on cymbalta and she also increased my seroquel to help with the agitation. The increase of my seroquel has help soooooo much in the last two days. I'm just scared of trying a new anti-depressant because I've been on so much of them and hardly any of them has worked except the effexor. But since I know it ain't working, it's time for a new one. My mom told me to look up something and I want to share this with yall. It kinda makes since, the serenity prayer, about accept the changes I can't change like the disease and other personal things like my dad and my family and daily life. And all that. So I would like to share it will yall. I hope it gives ya courage and/or strength in life. Grant me the SERENITY to accept the things I cannot change ~ COURAGE to change the things I can; and WISDOM to know the difference. Living ONE DAY AT A TIME; Enjoying one moment at a time; Accepting hardship as the pathway to peace. Taking this sinful world as it IS, not as I would have it. Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life, and supremely happy forever in the next. I hope it helps someone in the time of need no matter what it is!! I love yall so much and I wish you ALL A MERRY XMAS AND HAPPY NEW YEARS!!!!!!!!! Jennifer
not so good news
Hi Diary!! Today ain't a good day. Trying to hold back the tears but I just can't. I can't keep going on living like this. This disease is horrible it really is. On Jan.6th, I went to the ER not being able to breathe. I had put on extra weight. I thought it was the cymbalta but it wasn't. The dr said it was extra fluid. He said that the arteries in my lungs looked juicy. So he gave me 80mg of IV Lasix. Boy did that helped. Then I get a call last Tuesday ( Jan. 9th) from Marvel ( my primary doctor) and she said it looked liked bronchitis and a start of pneumonia so they started me on antibotics, according to the x-ray report. Well Friday morning rolls around and told my mom I can't breathe. So Marvel told me to come in ASAP and we did blood work and chest x-ray and she said that the bronchitis has gotten worse. So started another antibotic. The x-ray report, the Friday x-ray, came back to day and found out it wasn't bronchitis, it's the F***ing fluid. No wonder I'm having trouble breathing still. So she told me to take 80mg of Lasix in the morning and 40mg at 2pm. I have this feeling I'm not going to last much longer. I've felt this way since October. I'm praying to god that this will help ( the lasix) and that I can live longer. I just can't handle it anymore I just can't. It's tearing me up right now. I'm more worried about my family right now than this freakin disease. I don't know how to help them. I feel useless. I'm worried what would happened if this is my final time. I'm worried about my cat, where he would go and what he would do without me. I've been bless these 27 1/2 yrs. with all the people I have met and my wonderful family. I gotta go. I can't deal with this right now. I'm going to go play with my cat and/or go play some games online. Love yall very much. I may not told yall that but I really do. You guys have helped me since I've signed up with the diary and all that. Hopefully this ain't my last entry. I want million more of diary enteries so I can tell yall that I've beaten this or to tell ya that we found a cure. Just right now I'm not going to say goodbye. But I'll see yall later. Love yall, Jennifer Dawn Davis
confused....
Okay I've been confused for the past week since I've talked to Accredo last week. From the information that I have researched about the side effects on the Flolan is different than Accredo's. From what I've read from others' diaries, the research, my cardiologist, and pulmologist telling me the side effects. That some of the side effects are jaw pain, blueness of the lips or skin, leg muscle and joint pain and I can't remember all of it. These are just the ones that I can remember. Is there such thing as joint pain??? From what I've read that there is, but Accredo has never heard of it before. So I don't know what to believe anymore. Or what to expect (if that's how you spell it) about the oncoming pains. Let me ask any of you PHers this, do yall get any leg and foot pain?? Any muscle pain in your legs?? What about the joints??? Like in your joints?? In your ankles, knees, hips, or back?? See I've been getting the joint and muscle pain alot. Especially the hips and back. Accredo has said that the joint pain does not come from the Flolan, they think something else is wrong. There's nothing else wrong. See my mom told me that she's read some entries and every PHer had described the same effects. So I don't know what to believe. Can of yall help me with some of this??? I'm just gonna believe what I've read online and what my dr's have said. Well yall have a good nite and I miss and love yall!!!! Jennifer
Having mixed emotions....
Dear Diary, Sorry I haven't posted any entries in a few months but just got a lot of crap going on through my head right now. I went to Oklahoma, to get the heck outta town since I was so stressed, from May 5th through 20th. The plain ride was kinda stressful since I don't like flying but I got through it. Then my grandma and step grandpa picked me up. The first thing that I told her that I started up smoking again, which I stopped for 2 1/2 months and then began right around my b-day, which was the wrong thing to tell her. I was there from the 5th til the 9th and all I heard was constent bickering about my smoking which I went outside even when it was raining. And she told me not to sit on the couch because she didn't want me stinking it up. But anyways it hurt my feelings and then I saw her for whom she really was. All the stuff my family has told me about her I finally seen some of it. Finally got to go to my brother's for the remander of the trip. We got into it, but what brother and sister doesn't. I was wanting my dad to come and see me since he's only a hour away from my brother's. But that didn't happen so I had to take Josh's truck to go see him. I had a bad feeling not to go, I wish I didn't go anyways. But when I got there found out my step mom was in one of her moods and I go great I knew I was right. I wanted to leave as soon as I got there. Well my dad and I were suppose to go to the casino but things have changed. So we went riding around and the reason why we were riding around was to look for my step mom and found the car at a guy's house. So we went back and then my dad called the cops to tell them what he was doing just incase my step mom would call the cops (which she does ALL the time). Well things heated up between my dad and step mom and the cop. She even blamed me for crap and I didn't say anything for stop you guys. Well only got about 3 hrs asleep there at my dad's til the crap hit the fan again around 7am and I decided that I didn't feel comfortable there (which I've never felt comfortable there especially around her for the last 17 or 18 yrs) and left. Finally got back to Josh's on Saturday took a LONG NAP and decided I was gonna pack since I was leaving the next day. I couldn't wait to get back to Iowa which was really weird for me cause I love staying in Oklahoma. Anyways it seems like when I left Iowa in the first place to get rid of the stress that I came home with more. But it seems like I'm heading downward instead of up. I've been hurting really bad and gone to a pain specialist and he's put me on some heavy painkillers and muscle relaxers. Do yall PHers get any severe pain in your back, legs, hips, and etc.? Well my primary doc ordered xrays and it show muscle spasms like changes, on the verterbreas (or however you spell it LOL) narrowing with slight ostearthritis worse on the left side. I've never injuried my back or anything but the hip is so severe in my left hip and I have trouble walking or even get around my apt. Just seeing if you guys have any problems like this. I would if the flolan is making me have these kind of problems or what? I know when you increase the dosage of the flolan the more you hurt. Just trying to find some suggestions and answers. Well I'm going to go to bed. Yall PHers have a GOOD PH DAY AND A GOOD WEEKEND!!!!!!!! I love you ALL!!! Jennifer
Updating my diary entry since I haven't done it for a while now
Hi Diary!! I just don't know where to start but alot of things have changed with me over the past 2 to 3 mths now and wouldn't mind getting them off my chest. I can't remember but it was either in June or July, I had an Echo to checkout the pressures and they have gone down from 80 to 58. It has shocked me that it went down that far. Whom can imagine something like that happening. It was good to hear despite of this horrible disease. I was happy inside to hear about the decreased pressures but then I was scared and I do not know why I was scared. While all this was happening, I've been going through some rough times it seems like. I have been having alot of pain in my back, hips, and legs. Went to a pain specialist for the first time and told him what's going on and we've known that when you increase the flolan it can cause pain, from what I have been told. I got out one of the instructions or side effect paper that comes along with the flolan inside the boxes. Dr. Baldi looked at it and read the side effects. He said it was the flolan causing the pain. I agreed with him thinking it was the flolan and nothing else physically wrong with me. So he put me on morphine and boy was I not fuctional. I would just sleep and sleep. Went to see my PH doc and he said that all the morphine and plus the valium was unacceptable. He could tell that I wasn't fuctioning as a human being. So he decided if I'm hurting this much that he's going to decrease my flolan for the next 3 months and I didn't know if I could go thru the decreasing again, cause when I got to 16ng, it would mess with me mentally. I just didn't want to go throught that again, but I have to be "strong" and not letting anyone know that what is going on with me mentally or physically. I just don't want my mom to worry or anyone else. Dr. Cosmic got me confused about if I should keep taking the meds, that the pain specialist perscribed to me, or not cause he couldn't make up his mind. So I quit taking it cold turkey. Boy was that the wrong thing to do. I was going through a morphine withdraw. I got thru that. So while I'm going thru this decreasing my flolan, I'm STILL hurting. So Dr. Cosmic wanted me to see another pain specialist that he wanted me to see from the very beginning. I went to see the new doc and I liked him. He wants to find out if there's anything wrong with me physically and why I was hurting instead of putting me on pain meds. Well we tried to set up a MRI appt. but couldn't find anyone that had something to do with a portal or something like that where the pump wouldn't be inside the room where the MRI is. So he decided upon a CT. Had that done the same day I went to see the new doc. Well we found out it isn't the flolan that's making me hurt. It is my back. Start of arthritis, slight buldging disk, and something else. I can't remember. Well I found out today they want to do a lumbar epideral. I'm so scared and everything, but they said it will help out with the pain where I would be a fuctional human being. I guess I'll go thru that but don't want too though. But I just ended up moving this past week to another apt. It's in the same complex where my old one is but just down the side walk to a 2 BR apt. My anxiety has went up also during this move and all through the decreasing, the weather changes, and other personal things. After finishing moving and cleaning the old apt. on Friday. I went out to my mom's and was with her all weekend. I just didn't want to come home to an apt. that wasn't put together. I ended up out of my comfort zone and into a different one. I'm sure I'll adapt being into my new apt. and trying to put everything together while as I go. It's weird that I don't have cable. I have 2 more days w/out tv but luckily my internet finally works. And I have my cat. While I was going to Walmart yesterday I heard my song, my funeral song, When I Get Where I'm Going by Dolly Parton and Brad Paisley. I just started bawling and told my mom I just want to give up. I don't want to live with this disease any longer, I just want the pump, medicine, the hickman catherder to go all away. I just want to live normal. But I can't I have to have these things inorder to stay alive. Everytime I go to mix my flolan daily I think about all of this. It's a struggle everyday just to take the Revatio and to mix my flolan. If it was my choice 3 yrs ago. I wouldn't have done this treatment. But I had to because I had to be in my brother's wedding. I have to stay alive to take care of my mom, brother, grandma, dad, sister, and my cat. I did the treatment for them, not for myself. But what gets me is when I hear my song it makes me think of my family and friends that have passed along the way that I would be with them but I WANT to stay on this earth and walk. But then I realize sometimes that I'm stronger than what I think I am. Is it normal to go through all of this daily?? The thoughts about how you don't know when you're going to pass out or if you're going to have trouble breathing that day or have trouble just walkin into another room or just walk down the sidewalk. I'm scared to talk to my therapist about this. I guess I haven't accepted the PPH or have I?? I really don't know since everyday is a struggle. My panic attacks have came back full force and I'm struggling with that also and having a mental illness ontop of all this. I just don't know what to do anymore. I've been having SOB alot for the past month but Accredo in Iowa City told me that alot of PHers have had alot of SOB during the month of August due to it being so hot. I can't sleep well at night. Mentally I have had it. I can't keep it all in anymore. Before the PPH, I was struggling for 2 to 3 yrs with the mentally illness until I got out of the ABBE Center for a year and was finally mentally stable until that day in July, when I had my gall bladder out and then the next day I passed out and had a chest xray, thinking I had a blood clot to the lungs, and finding out my right side of the heart was enlarged and everything went down hill from there. But 3 yrs later after being diagonsed, finally the pressures have come down alot and thinking that maybe there's a change I'm going to live normal again. But I want to find the cure for PH. So for the next 2 months I'm going to see if there's anything that I can do, like PH Awareness. Setting up fundraisers, PH meetings around my area, and with the newspapers or something. I can't let this get me down anymore, I need to get out there and tell my story and tell about PH and FIND THE CURE. So this is going to be my next goal while I'm working with my therapist about personal problems. Hopefully this will help me accept this disease and help me mentally also. That's another reason why I don't write in my PH diary. I just closed up for the past few months and don't want to talk about the bad things, I want to talk about the GOOD THINGS on here like others do. But I'm going to close for now and go try to unpack a couple boxes, but I can already feel my anxiety starting it just overwhelms me about packing/unpacking and plus it being hot outside as well it is inside. I have the A/C going and fans but the flushing hasn't went away yet and it's going on the 4th hour of it like it did over the weekend. Maybe I should go to bed but then I can't because my mom can't unpack this all for me, cause she hurts physically also and working all day too. Maybe I'll get a break from stress soon. When will it be?? Hopefully soon. Jennifer
Getting rid of the Flolan
Who could of imagine of getting of the Flolan and just taking oral meds for the rest of their live? Well that's what the doctor is expertmenting with me right now. The doc says I'm doing really good and thinks I can get off the Flolan and just take Revatio and Tracleer for the rest of my life. According to the echoes the pressures have came down, the lowest is was about 45, shoot I can't remember when the latest echo was down all I know it was back in January or February. When it came to do the right heart cath, the pulmonary pressures were 73 or 76 but the mean pressures were somewhere in the 40s. The doc has been decreasing the flolan once a month by 2 nanagrams, so at this present time I'm at 8ng and will see the doc in a week or two. The doc has also put me on Tracleer so I'm at 125mg twice a day. I guess the experiment with me is to get me down to 2ng and take me off the Flolan and I'll still have the hickman in for about 30 days to see if I can handle being off the Flolan, if not I'll just get back on it. But if the good part is to get rid of the hickman also. I'm excited by all this in a way but majorly scared because I've had the Flolan pumping through this body since 10-2004 and thinking this is my life line and I'm really scared that the pressures will go back up and/or I'll die. But while the decreasing of the Flolan is going down I'll be put in the hospital. Don't know when. I just don't know what to do sometimes. While ALL of this is going on, my mental illness is playing a big role in this too. So while I'm dealing with the decreasing, I'm dealing with the thoughts that I'm gonna die, or I am gonna hurt myself and I just want this catherder OUT NOW!!!! I feel like since the decreasing and being put on the Tracleer, that the disease is trying to win, wanna to give up and I being torn apart and not being able to think clearly about if this is a good thing or bad thing. But we'll see. I'll keep yall in touch and let yall know. But I hope everyone is doing good. Sure do miss yall alot. Haven't talked to yall in a while. Well take care and love and miss yall. Have a good week. Jennifer
Havng a hard time..
It's been a while since I have wrote in this diary. Alot of things have been going on since I wrote last. Last time I wrote I mentioned that the dr wanted to wing me off the flolan, well that didn't happen. He went to some meeting in Pittsburg and that dr there told him if Cosmic took me off the flolan that I would deteriate (however you spell it). The Pittsburg dr said that he took his patient off the flolan and she started deteriating. So Cosmic (lung dr) got worried and didn't do it and left me at 8ng. So I've been at that dose since then. He added Tracleer also. So I'm on triple therapy: flolan, revatio, and tracleer. Everything is going good. Still having my bad days and good days. But mentally it's kinda gotten worse having to deal with this. 2009 is a big year for me. The fifth year anniversary is coming up which is scary to me. Since Cosmic told me 4 yrs ago about "deadline" about I only got 2 to 2 1/2 yrs but if it goes by textbook rules I only have 5 yrs. That has stuck in my head since Oct. '04. That's where the mental part has been really bad for me. I have been having seizures the last few months and starte on Keppra last week. So if it's one thing it's another. It seems like God doesn't give me a rest period. Having 3 mental illnesses, then PPH, and now maybe eplisey. I had an abnormal 8 hr video EEG last month and the neurologis can't really say if I have eplisey or not cause he hasn't seen me have one. So there's a chance I guess and that's why he put me on Keppra. Sheesh 41 or 42 pills are enough for anyone. Uggh! Anyways, everything is going okay besides that. Trying to keep warm and keep from getting sick. Went to Oklahoma around xmas time and it was great to see my family and the wonderful state of Oklahoma. Sure do miss it. I'm going back in May for my sister's graduation. Can't wait for the break from Iowa LOL! I hope everyone is having a good PH day and hope everyone has a great weekend. Love and miss you guys!!!!!!!
Life
As I sit here and think about my life, I thought everything was going good. I was feeling good but really tired. I thought the PH was doing good and I thought being on 8ng for the past 9 mths has been wonderful since the highest I've been on was 22ng. Well since I thought everything was going good the only problems that I've been having is seizures, which I'm on medication. Well boy was I wrong. Last Thursday ( Mar. 26th), my home health nurse came over, she did a set of vitals, we mixed my flolan, and made flolan kits since my shipment came in, she left at 4:15pm and I was just sitting on the couch relaxing and 10 mins later I just get sharp sharp pains in my chest and heart, and I was having trouble breathing. I thought it was an axiety attack or the PPH. But the pain and sob was getting worse then my left arm (from shoulder to elbow) got numb and I knew something was wrong and I knew then I was having a heart attack, so I called my mom at 4:35pm and told her what's going on and this pain was worse one and she told me to push my life line and she'll be there. Well I pressed it and the ambulance was on it's way. I got there and told them the problem and told that I can't take nitrates because of the revatio (from what it say on the bottle). They ran all the test and gave me morphine for the pain. I didn't know morphine is a vasodilator haha. The three docs said I was having a heart attack. They wanted me go by ambulance, but changed their minds and said medaflight and then cancelled the helicopter while it was in the air and then decided I could go by ambulance. When I got there to Des Moines my cardiologist was the on call doctor and he said it was a heart attack. They admitted me to cardiac icu and then my lung doctor saw me the next morning and said he didn't think I had a heart attack but he thought it may be the PPH. I was like I don't think that the PPH can cause the pain and feelings that I had and for it to last from 4:25pm to 1am (friday am). I know the PPH can cause sob and chest pain. I did an echo everything was good and pressures were the same which was 47 (which was 101 on 10-19-2004) but the cardiac enzymes were a little elavated. My brother, sis in law, my dad, and step mom came up from oklahoma. I called my brother, my dad, and my sister to tell them that I love them and tell them goodbye for the final time if something happened. The docs left me go home on Friday. I'm doing fine now but this past week my chest was very sore and I was sob some. So I wonder why that 3 outta 5 docs said I had heart attack but the other 2 didn't. So we ain't for sure what happend. This episode finally hit me earlier this week and wanted to get it off my chest. Thanks for listening to me.
Oh by the way do any of you know and/or had a MRI, where they can do a MRI even though you have a CADD pump. My neurologist has been trying to figure out where we can do one at. The ones here in Des Moines can't do it. If you have any info plz let me or email me at arieswoman99@hotmail.com.
Thanks! Yall have a good weekend.
Jennifer
unanswered questions
Life is getting more and more complicated for me, especially knowing the pro's and con's about PPH. There's alot of questions that haven't been answered how and what the PPH actually can cause. Well let's see. End of March, I thought I was having a heart attack and got transported to Des Moines to ICU. The docs here, 3 of them, said that I was having a heart attack (my syptoms I was having severe chest pain, in the middle of my chest; my left arm from the shoulder down to my wrist went numb) but when I got to the er the doctor on call was my cardiologist and he didn't know that I was a patient of his and he said that I wasn't, he didn't know what was happening. Well my lung doc saw me the next morning and he said it wasn't a heart attack and it was the PPH. The let me go the next day. Well I didn't see the docs til last week for my final appts with them since I'm moving back to Oklahoma woohoo!! I keep asking the lung doc can you get swelling and extra fluid in your stomach and he keeps telling me no. I know that PHers can cause I've read it in the Pathlight somewhere. So I'm confused about that. Can PPH cause syptoms of a heart attack? Can PPH make your mental status worse? Or should I say what can PPH cause that I don't know about. I saw the heart doc and we asked straight up about what happen in March was it a heart attack or not, well Dr. From couldn't give us an answer. Well I thought he might know something about PPH and heart problems since he is a board certified cardiologist, ain't they suppose to be the smartest and the best? Well before I forget I'm moving to Oklahoma this Saturday and I'm excited cause I know I'm going to breathe better cause Oklahoma is flat land and dry heat unlike Iowa the elevation is high here and very humid during the summer and have troubling breathing really bad here. Well Dr. From sent me a letter to take to the new heart doc and he put that the ASD (atrial septum defect, or hole in the heart) cause the PPH. I thought it didn't cause it because I was born with the hole in the heart but was repaired in 1983 and was doing very well it. Well saw Dr. Cosmic, the lung doc, last week and I told him about it and he thinks that it did. I was like you said that if the ASD caused PPH that I would've gotten it earlier in life not when I was 25. I had the repair done when I was 4 so in the 21 years I should've gotten then. Then I asked about if I inherited the disease since I had 7 cousins and my aunt die from the ages of 8-30 suddenly die and them saying it was heart attacks. My dad said the cousins had the same syptoms like PPH. Well Cosmic was leaning towards that theory. So I don't know what to think how I got this. I wished that I had answers. Cosmic said I'm doing well better than he ever expected. My 5 year anniversary is coming up in October and he thought I wouldn't make it til then. He told me that my pressures were 101 but got up to 115 in the hospital and now 5 years later the pressures are in the mid 40's. So that's awesome. I went to the er this past Thursday, I was having the exact same syptoms I was having in March. So I thought about if it's a heart attack or not. The er doc said he thinks it was PPH. So I'm so confused about what PPH can cause. I just want some idea what PPH can and can't do. I'm on triple therapy, the flolan, revatio, and tracleer. Do you guys have any answers that your docs may have told you? Can any of you go swimming? If so, how do you go about it. I haven't swam in 5 years and wish I could cause it's very relaxing for me. Can you go boating, can you go into hot tubs, or what can you do that normal people can do? I feel like my life has been really restricted cause of PPH. I just want to go for walks, I want to take a normal shower or take a bath, I just want to do something that I haven't done for a long time like riding a bike. What do you guys do? No one has told me the activities that I can and can't do. So I just got unanswered questions. Maybe yall can help me out if you could and I would appreciate it so much. When I go to Oklahoma, I was thinking about doing a fund raiser but I don't know what or how to do it. I asked my brother if he would help me and he said yes which made me bawl. He's a good brother!!! Well I hope yall have a good day and week. I miss and love yall so much!!!!!! Yall are my family and wish I could meet all of ya!!! Please take care and if there's anything I can do just let me know and if it's lending my ear please do so.
Jennifer
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