June 12, 2019 at 3:02 pm #17834
Sometimes PH and chronic illness can take a toll on our nutritional status. This impacts hormone levels and also can impact bone health. For the last few years my weight has fluctuated an I lose a total of almost 15 pounds. Being smaller to begin with, this was really difficult on my body. Some of my doctors recommended that I inquire about a bone density scan. After having my remaining ovary removed, I am now on maintenance hormones through a skin patch.
Now, more than ever, it is important to protect my bones as best I can to avoid getting things like osteoporosis or very fragile bones in the future.
Does anyone have any bone health conditions that they are aware of? Have you had a recent bone density scan? What does this test entail? Have you talked to your doctors about bone health and preventative treatments?
June 12, 2019 at 10:45 pm #17837Colleen SteeleKeymaster
Brittany, there are a lot of tests and procedures that are done once a year after transplant. The bone density scan is one of them and it is one of the easiest to endure. It really isn’t anything to be nervous about. There is no IV or injection and the scan is super quick, like 10 or 20 minutes. You don’t have to fast beforehand however, if you take calcium on a daily basis DO NOT take it 24 hours before the scan. We forgot this one time and the scan had to be canceled.
Bone loss is a common issue after a lung transplant and the results of my son’s scan showed developing osteoporosis. He was sent to an endocrinologist, mainly to see if his growth plates had any more growing room. If they did a medication would have been considered to treat the osteoporosis to give his bones a chance to grow more, but an xray showed he was pretty much done growing. I don’t recall what the medication was that he would have been put on but they would rather him not start it unless he has to because it can interfere with other medications and cause other side effects. Unless he starts getting fractures the plan isn’t to do anything except to continue calcium supplements. They just don’t want to add a new medication unless they have to. As I’ve mentioned before, he also attends physical therapy to help with the aches and pains of the osteoporosis.
As a side note, the endocrinologist pretty much told us what we already figured out, that my son’s PH medications that he had taken as a child stunted his growth, and probably the eventual heart failure too. He is very short for his age. His pediatrician told us during a wellness visit before he became diagnosed with PH, that he was probably going to be tall. So that gives you an idea of how much the PH medications changed his body development. However, the meds kept him as stable as PH can be for 5 years and we are grateful. Even my son doesn’t mind that he is short, he’s still alive and that is all that matters.
Here is an informational link on the bone density scan that you might find helpful.
June 13, 2019 at 8:24 am #17845
Thank you so much for the information and for you and your son’s experiences with having a bone density test done. It makes it easier knowing that there aren’t any big injections and that it isn’t a long test. I just endured a type of x-ray for over an hour and it was absolutely horrendous! That’s good to know about not taking supplements before it too, I bet it was make the results a little less accurate.
I’m so sorry to hear that the medications ended up having an impact on his physical growth. I can imagine that must be harder for men to deal with vs women. It’s one of those things that when I looked around at the heart conference that I went to I realized, ” wow I am one of the taller ones here!” (and keep in mind I’m only 5’2 not even 100 lbs) . It is true though that I’m sure he knows that the medications had more benefits for him and kept him as strong as possible for all those years. The benefits outweigh that for sure!
June 13, 2019 at 8:45 pm #17865
Thanks Colleen, I, too, have been needing to get my Bone Density Scan. I am behind a year or so. I know that my calcium has been low and also with my kidney disease, plus I do not eat much dairy.
Did you son have the Dexa scan to check his bone density? It sounds simple and nothing compared to some tests that we go through.
I am sorry to hear that his PH meds stunted his growth, I know as you said they kept him from having a transplant for the 5 years.
Thanks for the information and hopefully I will get mine scheduled soon. It seems it has been something I have kept on the back burner as I have so many other appointments, I know y’all can relate.
June 14, 2019 at 6:56 am #17874
I know exactly what you mean about some appointments having to be put on the “back burner”. The appointments i usually put off or have to cancel are important appointments but unfortunately life happens and I have to prioritize my multiple illnesses sometimes which is so hard! I have put off appointments with my dermatologist and also with removing my IUD and getting it replaced. It is way over the amount of time it should be in for. (well by a few months now) but luckily I don’t have ovaries and tubes and am not using it for birth control purposes.
June 16, 2019 at 11:10 am #17881
So true Brittany, that is the same issue here. I need to schedule my dental cleaning as well as I am quite a bit behind…
It is just juggling what is most important first then plan and schedule the others once you’re rested up after the top priority appointments.
I was like you with my IUD for years, the last few years, I have been able to schedule and plan my Gynecologist appointments, usually during my birthday month and I try and schedule my mammogram that month as well. yeah, I know, lots of fun for my birthday month, hehe
June 17, 2019 at 8:04 am #17897
a mammogram and a gyno appt in one birthday month !? you certainly hit the jackpot ! LOL! Seriously though, I know that it’s hard to have a lot going on and having to prioritize appointments. Did you have your IUD switched out for a new one before? I’m curious to know if it’s as painful as the first time ! I was so shocked at the pain I felt when I got the first one in (especially because I do not have children so I didn’t have any experience with the dilation that needs to happen to get this small IUD inserted !
June 17, 2019 at 8:32 am #17901
I know right, Brittany! It’s definitely like hitting the jackpot having both of those appointments during my birthday month.
I’ve had a RHC, once, on my birthday, now that one was a mistake, lol. I guess, I’m just a glutton for punishment.
As far as my IUD, this is the third one for me. I wish I could tell you it doesn’t hurt , but each time, it was painful. I do think the last one was a tad less painful and the pain and cramping didn’t last as long as the first two. You’ll do great.
On a side note, as you may know ,some of our PH meds causes that area to be more sensitive, which doesn’t help ! (sorry, hope this isn’t TMI )
June 17, 2019 at 10:46 am #17905
Never TMI for me, Jen! Don’t worry, I have literally been through it all so I can understand. Yikes about the pain though. Definitely not looking forward to having it changed out but I have had mine for over 5 years. I don’t use it for birth control purposes so I’m curious about asking my doctor if I could wait a little longer to have it removed. They only want me to get some type of hormone directly into the uterus to help lessen the chances of uterus cancer since I am high risk after getting both tubes and ovaries removed and being in menopause at 27 years old. Oh the joys of womanhood!
June 17, 2019 at 11:38 am #17909
I know right….ahhh the joys of womanhood….
I know you’re not using the IUD for birth control but since it’s for the hormones, I’m not sure exactly how long it will release hormones. I know it depends on the type, but some I know were 5-10 years. Since it’s placed to help decrease the risk of uterine cancer , I would ask your Gynecologist, just to be on the safe side.
June 18, 2019 at 12:13 pm #17936
Thanks so much Jen! This is definitely something that I will be talking to my doctors about. Having it in place and knowing that it is okay for a few more years would be the best possible news. I don’t think my body is ready for any more pains right now! You ever get to that point where you kind of avoid doing things that would cause added stress and discomfort? I know that it’s hard because with medical things we often don’t have a choice, but some days I like to pretend like I DO
June 18, 2019 at 2:19 pm #17950
Ohh I definitely can relate, Brittany! I think we all have those moments…
You e been through so much lately, I hope that you can wait on the IUD.
June 17, 2019 at 2:19 pm #17917Colleen SteeleKeymaster
Ah Jen, he’s had so many different tests and procedures over the years that sometimes I can’t keep track of them all. The dexa scan sounds familiar. I think he did have that done, it actually might have been the main one that informed us that he was done growing.
In regarding yours and Brittany’s IUD comments, I wanted to mention that it’s one I considered posting a number of times but I haven’t because, having a son, I wouldn’t have any experience to contribute to in relation to PH. The reason I thought of it is that I have read posts from mom’s of teenage girls in a pediatric FB support group, who have discussed the use of IUD’s, not for birth control but for other issues such as difficult periods. There was a pill mentioned that is safer for PH patients but I can’t recall the name. Anyway, @brittany-foster, this might be a good topic for you to address. It might make the men feel uncomfortable but it is an important topic.
June 18, 2019 at 12:14 pm #17937
Definitely an important conversation to start. I will create a post on this today !
June 18, 2019 at 2:23 pm #17951
Great idea, Colleen! That would be an important post, I’m interested in learning what pull the tennis we’re talking about.
I’m sure some men here may be uncomfortable, but maybe the heading will let them know the topic.
June 13, 2019 at 9:25 am #17849Cris DingmanParticipant
Brittany, I laughed out loud at you saying you’re one of the taller ones! I know it’s genetics, all the women in my family are short. I am 5’1” (and holding) but you made me think. I was diagnosed in 2016 when I had just turned 57, so it’s not the meds that caused me to be vertically challenged, but I wonder if there is any correlation between height and this disease? I’ll have to ask the doc!
Thanks again for the laugh, to me anyone over 5’5” is a GIANT!
June 13, 2019 at 8:49 pm #17866
LOL Brittany and Chris, I guess I am a GIANT, hehe
I am almost 5’6’! Y’all have me cracking up tonight.
Brittany, that is cool that you can just get the clothes from your younger cousins, saving money, hehe
Chris, I think that genetic information would be important to know, if possible. I would also be interested to see what your PH doctor says about the correlation of height.
June 13, 2019 at 9:27 am #17852
I feel the same way when it comes to height in my family too. I am definitely the shortest one. I am getting my cousin’s clothes that don’t fit them anymore and they are 15 and 16 hahaha! EVERYONE in my family has height except for me. But hey, there are also some good things about being short like being able to wear heals without feeling like I’m a giant hahaha! I’m glad I could give you a laugh with that comment 🙂 I’d be curious to know about the correlation (if any) with height and PH because I know that a lot of those with congenital heart defects are short because of their anatomy.
June 13, 2019 at 9:33 am #17854Cris DingmanParticipant
I do want to explore the subject with the PH doctor. I was thinking awhile back about my grandfather. He was on the shorter side, he died back in 1970, they said heart attack, but now I wonder if he didn’t have undiagnosed PH. I remember him being so out of breath just walking from room to room in his house. He was only 69 or 70 when he died, and in retrospect, his symptoms now sound so familiar to my own.
June 13, 2019 at 10:11 am #17855
This sounds like something you would definitely want to look into with your doctors and seeing what they think. Maybe they would refer you to genetic testing of some sort to see if this could possibly be something that was inherited? I went to genetic testing for my family’s genetic conditions that also causes my vascular and cardiac abnormalities. It helped to know that all my conditions made sense and having the testing done could really help future generations and potentially eliminate this gene in my family if it’s extracted before an embryo is placed. Science can do some pretty amazing things. It was also a relief in ways to know that this condition really was the cause of so many of my symptoms.
June 20, 2019 at 7:40 pm #18032Jimi McintoshParticipant
It is critical to get bone density scans at least every year, the Lasix
Contributes to thinning, anemia and
Several of the PH meds, may cause thinning of the bones. I suffered “Avascular Neucrosis” (AVN), believed to be a result of bone thinning from
Meds and water pills. 2 hip
Replacement and knee surgery, I am tested yearly.
I believe that most of my issues is related to Lupus and PH. I just looked at my labs and kidney stage 3 and no signs of CHF. I desperately want to lose 50 lbs,willing to try the Keto or Almased diet, not ready for lap band.
June 21, 2019 at 9:48 am #18037
you’re right that many times the medication that we are taking to help with one thing can end up really impacting another part of the body like our bones. I am sorry that you had to go through those surgeries. Members of my own family had hip replacements and shoulder surgeries and I know that ortho surgeries aren’t fun at all! I am glad that your doctors are keeping a close eye on things and that they want you tests every year. Do you see an ortho doctor for these testing or do your other doctors order the scans for you to check your bone health?
Good luck with the weight loss journey. Have you talked with your medical team about a diet they would suggest? I always recommend mentioning a diet to your medical team especially because cutting things out of our diet may or may not be good for us depending on what our underlying conditions are. I am sure your team will work with you on trying to come up with something so you can feel healthier with your weight.
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